Here is an imagined, but not far off the truth, conversation between a doctor and a patient.
‘Why can’t I have T3 doctor? I feel so much better when I do?’
‘Because I say so, now go away.’
Nowadays doctors, at least when they are in training, are repeatedly told that they must NEVER be paternalistic. To do so will result in immediate censure. In the UK it is also a very rapid way of failing the GP entrance exams. We are told that we must explore the patients’ expectations, listen to their worries and fears, and work with them in partnership to lead to a therapeutic partnership…. or some such left wing bollocks. [Joke]
How exactly that fits within the National Institute of Health and Care Excellence (NICE) guidelines is up for grabs. For those who don’t know, NICE decide on which drugs and interventions can be prescribed, or paid for, within the NHS. So you can explore expectations with your patient till the cows come home, only to find that you cannot prescribe what the patient wants, even requires. Even if it makes them feel much better and costs very little. Would you call this paternalism? Oxford entrance exam, discuss.
Don’t get me wrong, I think rationing is increasingly vital for healthcare provision, and at one point I supported NICE. I now realise how naïve and misguided I was…but that is a discussion for another day.
Where was I? Oh yes, T3. Most people have never heard of it. But I am willing to bet that if you have heard of it, and you are a patient, you will certainly know all about this particular hormone. You will definitely know about a thousand times as much as your GP, who may nod sagely when you mention T3. But frankly they are unlikely to have any idea what it is, or does.
To be honest, until about a year ago I had no real idea what T3 was either, but I have learned quite a lot since. Wikipedia states that: ‘The thyroid hormones, triiodothyronine (T3) and its prohormone, thyroxine (T4), are tyrosine-based hormones produced by the thyroid gland that are primarily responsible for regulation of metabolism.’ I would like to draw your attention to the fact that, in Wikipedia, at least, T3 is mentioned before T4 – which makes it more important?
In reality, in a physiological sense at least, T4 comes before T3, in that T4 is produced almost exclusively by the thyroid gland in a ratio of about 17:1 T4 to T3. Once inside various tissues and organs T4 is then converted to T3, where it becomes the biologically active hormone.
Whichever does come first, it can be argued that T3 that is the key thyroid hormone, because T4 is basically a ‘prohormone.’ From Wikipedia again: ‘A prohormone refers to a committed precursor of a hormone, usually having minimal hormonal effect by itself. The term has been used in medical science since the middle of the 20th century. Though not hormones themselves, prohormones amplify the effects of existing hormones.’ Although the figures are not absolutely clear cut, it is usually stated that T3 is five times more biologically active than T4.
Therefore, if someone is hypothyroid, which is normally taken to mean that the thyroid gland is not producing a sufficient quantity of thyroid hormone, you would want to prescribe the active hormone T3, would you not?
This is a rather rhetorical question because what doctors do, at least since the 1960s, is to prescribe synthetic T4 (levothyroxine). Once T4 is in the body it is converted to T3 (through the kidneys, liver, spleen and brain – and numerous other thyroid hormone receptors throughout the body) and does its thing. In most cases this is a perfectly good treatment. However, there is a kicker, which I will get to.
At this point I feel I need to add that hypothyroidism is a very, very common condition. By the age of 60, 10% of people have ‘lab’ test abnormalities that would define them as having subclinical hypothyroidism. At least 2% of the population has overt, clinical, symptoms. Which means that we are talking about millions of people in the UK, possibly tens of millions in the EU and US.[It affects women ten times as much as men].
TSH
I now need to bring in another player called Thyroid Stimulating Hormone (TSH). As with all systems in the human body, a negative feedback loop controls the function of the thyroid gland, and it works something like this:
If you have a high T4 level, this is detected by the pituitary gland, which sits deep within your brain. At which point the pituitary gland reduces the production of Thyroid Stimulating Hormone. As TSH is the hormone that instructs the thyroid gland to produce T4/T3, production of T4/T3 falls. [There are actually a couple of other steps, but this is essentially what happens].
If T4 falls too far, the pituitary gland swings into action to produce more TSH. In turn stimulating the thyroid gland to manufacture more T4…and so it goes. Up and down, up and down, up and down. Endlessly until, of course, you get too old and drop dead. And there ain’t no feedback loop for that.
TSH is also important in that it is usually the substance you measure to decide whether or not someone is hypothyroid. If TSH is very high this means it is trying to ‘drive’ the thyroid gland into action – and failing. You also use the TSH level to determine the dose of T4 that is required as replacement therapy. If the level of TSH is low, this suggests you may be giving too much T4. If the level of TSH is high, this suggests you may be giving too little.
As you may have noticed, at this point I have slipped into talking about TSH and T4, with T3 getting very little mention. That is because this is where the medical profession now stands. Hypothyroidism means high TSH and low T4. You are getting adequate thyroid replacement hormone if TSH in the ‘normal’ range. End of.
Here is what the Royal College of Physicians (RCP) and the British Thyroid Association (BTA) have to say on the matter. Key points only
- The only validated method of testing thyroid function is on blood, which must include serum TSH and a measure of free thyroxine (T4).
- Overwhelming evidence supports the use of Thyroxine (T4) alone in the treatment of hypothyroidism. Thyroxine is usually prescribed as levothyroxine. We do not recommend the prescribing of additional Tri-iodothyronine (T3) in any presently available formulation, including Armour thyroid, as it is inconsistent with normal physiology, has not been scientifically proven to be of any benefit to patients, and may be harmful. [Then again, it may not be – harmful, that is]
An aside – (Additional information, as provided to me)
I should mention here that I have been told that the RCP has been asked on numerous occasions to cite references to research/studies showing “overwhelming evidence supports the use of thyroxine (T4 alone)”, but to date, they have provided none. A Freedom of Information (FOI) request that the RCP provide such evidence – again met with no response. A request was made via the ‘Ask for Evidence’ website, run in association with ‘Sense About Science’ asking for evidence on the safety and efficacy of L-T4 as a treatment for hypothyroidism. This request was directed to the RCP who eventually responded stating “The RCP’s guidance is based on the opinion of an expert panel which was temporarily formed for this purpose. The evidence they used to form their individual opinions has not been collated and therefore the RCP cannot provide any evidence list”1 (Jolly, as they say, good)
Restricting the diagnosis and treatment of hypothyroidism to measuring T4 and TSH, and nothing else, is the approach that seems to be used by conventional medicine in the rest of the World. I recently received an e-mail from someone in Singapore telling me that their doctor was about to be struck off for prescribing T3 to patients- against Singaporean medical rules. In the UK, T3 testing is virtually banned, and the medical authorities are making it virtually impossible to prescribe T3 in any form.
In the UK, a doctor called Gordon Skinner was repeatedly dragged in front of the General Medical Council (GMC) for prescribing thyroxine to patients whose T4 and TSH levels were in the ‘normal range’. He was also attacked for prescribing natural thyroid extract (NDT) (a combination of T4 and T3) to his patients – who he felt would benefit. He is now dead. It has been suggested that constant and repeated efforts to strike him off the medical register may have had an impact on his health. I couldn’t possibly say.
Now, there is no doubt that this area is highly complex and for those who know this area, you will be aware that I am keeping things as simple as possible. But I think it is important to make a few points:
The lab tests, especially for TSH, are far from 100% reliable, to say the very least. In fact the man who developed the test in the UK, at Amersham International in Wales, has told me that the test is virtually worthless in many cases (especially continuous testing when patients are taking thyroid hormone replacement).
The conversion of T4 into T3 can be significantly reduced in some people. So these individuals can have normal T4 and TSH, but they are still effectively hypothyroid. For those who are interested in a bit more detail, there is a population with a defective DIO2 gene. This blocks T4 to T3 conversion, and results (amongst other things) in reduced T3 levels in the brain, which can lead to mood disorders2. I mention this single example to make it clear that there is solid scientific evidence to back up the conjecture that it is possible to be functionally ‘hypothyroid’ with normal blood tests.
A lot of people have reported significant improvements in their health through taking thyroxine, with normal blood tests, and also natural thyroid extract when their laboratory tests were ‘normal’. Please look at this article in the Daily Telegraph3…then look at the comments section – which is very, very telling. A cry of despair!
I am not going into further detail of how T4 binding and conversion in various organs can be affected by stress hormones, inflammation, trauma, adrenal insufficiency, lack of converting enzymes in tissues, and infection of various sorts. I shall just keep this simple by stating that it is possible to have enough T4, even T3 in your bloodstream, but these hormones have reduced ‘bioavailability’. This is not crank ‘woowoo’ stuff. This is real and measurable and you can find studies on this in peer-reviewed medical journals.
Far more telling, from my point of view, is the fact that hundreds, indeed thousands of patients report that, although their blood tests were normal, they felt terrible, and that they have felt so much better when they have been given ‘excess’ T4 and/T3, or NDT (natural desiccated thyroid). Whilst there is no doubt that some of them are, to quote a medical colleague, ‘not tightly wrapped.’ I have spoken to many, many, people who are calm, rational and reasonable, and their stories are compelling. A hellish existence that was ‘cured’ by Dr Skinner and his like. I refuse to believe that all of these patients are ‘somatising’ fruitcakes.
Comparing the use of SSRIs and ‘Unconventional’ Treatments for Hypothyroidism
At this point I will change tack slightly. For I think it is fascinating to compare and contrast the treatment of depression using SSRIs, with hypothyroid patients who complain that they are unwell, despite ‘normal’ T4 and TSH tests.
Today, almost all doctors you speak to believe that depression is due to a low level of serotonin in the brain. This is why they prescribe SSRIs (Selective Serotonin Reuptake Inhibitors) by the lorry-load. Drugs such as Prozac, Zoloft, Paxil etc.To quote from a recent article in the BMJ ‘Serotonin and depression, the marketing of a myth’4.
‘…the number of antidepressant prescriptions a year is slightly more than the number of people in the Western World.’
This all happens despite the fact that:
‘There was no correlation between serotonin reuptake inhibiting potency and antidepressant efficacy. No one knew if SSRIs raised or lowered; they still don’t know. There was no evidence that treatment corrected anything.’
In short, with depression, there is no lab test, no way of measuring the impact of anti-depressants. They are prescribed purely and simply on the basis of the patient history. Equally, there is no doubt at all that SSRIs have significant side-effects, some of which are very, very serious e.g. increased suicidal tendency. They are also addictive and patients can end up stuck on them for years. So, they do cause harm.
Equally, as you may be aware, clinical trial data in this area have been horribly distorted….
“…That said, the fact that the class of antidepressants known as the selective serotonin reuptake inhibitors (SSRIs), are basically useless in treating depression in children and adults is not news to the FDA. Back on September 23, 2004, during testimony at a hearing before the House Oversight and Investigations Committee on Energy and Commerce, Dr Robert Temple, the FDA’s Director of the Office of Medical Policy, discussed the agency’s review on the efficacy of SSRIs with the children.”
He noted that it was important in a risk-benefit equation to understand the benefit side. “Of the seven products studied in pediatric MDD (Prozac, Zoloft, Paxil, Celexa, Effexor, Serzone and Remeron),” he testified, “FDA’s reviews of the effectiveness data resulted in only one approval (Prozac) for pediatric MDD.”
“Overall,” Dr Temple said, “the efficacy results from 15 studies in pediatric MDD do not support the effectiveness of these drugs in pediatric populations.”
Also in 2004, a study of previously hidden unpublished data as well as published studies on five SSRIs, was conducted by Tim Kendall, deputy director of the Royal College of Psychiatrists’ Research Unit in London, to help analyze research to draw up the clinical guidelines for British regulators, and published in the Lancet.
Following his evaluation, Mr Kendall stated: “This data confirms what we found in adults with mild to moderate depression: SSRIs are no better than placebo, and there is no point in using something that increases the risk of suicide.”
In 2005, the British Medical Journal published another study that concluded that SSRIs are no more effective than a placebo and do not reduce depression.
In December 2006, at the most recent FDA advisory committee meeting held to review studies on SSRI use with adults, SSRI expert, Dr David Healy, author of, “The Antidepressant Era,” told the panel that the efficacy of SSRIs has been greatly exaggerated, while the actual studies reveal that only one in ten patients responds specifically to an SSRI rather than a nonspecific factor or placebo.
In February 2008, Irving Kirsch’s study at the Department of Psychology at the University of Hull is the first to examine both published and unpublished evidence of the effectiveness of selective serotonin reuptake inhibitors (SSRIs), which account for 16 million NHS prescriptions a year. The largest study of its kind concluded that antidepressant drugs do not work. More than £291 million was spent on antidepressants in 2006, including nearly £120 million on SSRIs. 4
Critics complain that industry funded studies are presented in ways to exaggerate benefits and obscure side effects. “These include failure to publish negative results, the use of multiple outcome measures, and selective presentation of ones that are positive, multiple publication of positive study results, and the exclusion of subjects from the analysis,” according to the paper, “Is Psychiatry For Sale,” by Joanna Moncrieff, in People’s Voice.”5
So we have an interesting medical conundrum, do we not? On one hand, doctors are more than eager to prescribe antidepressants at the drop of a hat, based entirely on the patients reported symptoms. No need for any blood tests, and no evidence that they work for the vast majority of people.
On the other hand, if a patient dares to say that they feel better taking T4 when their blood tests are normal, or if they say they feel better taking a combination of T3 and T4/NDT, they are dismissed as ‘somatising.’ Which is a posh medical way of saying, you are making your symptoms up and we don’t believe you. Equally, if a patient complains of continuing symptoms and that they don’t feel better when they are taking T4 (or T3 and T4) and their blood test results show ‘normal’ they are again accused of ‘somatising’6
The world, my friends, has gone nuts and, in a bitter irony, the medical profession – at least in this area – has become institutionally paternalistic. ‘You cannot be feeling better, because your blood tests say you were never unwell. So you cannot have treatment. And you, Dr Skinner and your like. If you dare treat patient’ symptoms you will be attacked and struck off from medical practice.’ Now I have looked long and hard, and I have found no evidence, from anywhere, that giving T3, in the dose that’s needed, causes any significant medical problems, and I have listened to repeated testimony from people who feel they have greatly improved.
As for antidepressants, these mostly useless addictive drugs that can increase suicide risk. ‘Have as many as you like for as long as you like. Because we fully believe everything you say about your symptoms….’ No need for any silly tests, or anything like that.
Compare and contrast, then try to make some sense of the medical world that we now live in.
Sigh.
P.S. Because I am considered to have alternative views about medical matters, many people contact me to help promote their ‘alternative’ ideas. Some I believe to be completely whacko, I smile sweetly and move on. Some I cannot decide. Other issues, once I start looking into the evidence, I find the evidence compelling.
I certainly find the evidence that a large number of people are effectively hypothyroid, with ‘normal’ thyroid blood tests, to be virtually overwhelming. Both from a scientific/physiology basis, and also from a patient testimonial basis.
I now firmly believe that the medical profession is currently doing these people a great disservice, and that the guidelines on the treatment of ‘hypothyroidism’ are rigid, autocratic, and just plain wrong (for a significant minority).
As with all medical matters that I write about, I have no axe to grind, no horse in the race, no financial links to anyone or anything with regard to treating thyroid patients. I simply hope this article can have some positive impact. For it seems very clear to me that many thousands, hundreds of thousands, of people are suffering unnecessarily. And I would like it to stop.
References:
- http://www.scottish.parliament.uk/S4_PublicPetitionsCommittee/General%20Documents/PE1463_AAA_Petitioner_19.11.14.pdf
- “Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients”http://press.endocrine.org/doi/pdf/10.1210/jc.2008-1301
- http://www.telegraph.co.uk/news/health/alternative-medicine/10985192/Could-a-renegade-doctor-save-your-life.html
- Serotonin and Depression, the marketing of a myth.’ BMJ2015;350:h1771
- Kirsch I, Deacon BJ, Huedo-Medina TB, Scoboria A, Moore TJ, et al. “Initial Severity and Antidepressant Benefits: A Meta-Analysis of Data Submitted to the Food and Drug Administration.” 2008, PLoS Med 5(2): e45 doi:10.1371/journal.pmed.0050045: Access full article at http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371/journal.pmed.0050045
- http://www.lawyersandsettlements.com/articles/ssri_birth_defects/ssri-secret-00642.html#.VT-ycCG6eUk
- Professor A Weetman – http://www.medscape.com/viewarticle/524955
Further postscript
Malcolm – we need to clear up the fact regarding the definition of ‘hypothyroidism’ which is “underactivity of the thyroid gland” according to the RCP Policy Statement on the diagnosis and management of hypothyroidism. Hypothyroidism is easily diagnosed and more often than not, easily treated with L-thyroxine only. However, what is being missed by everybody is that over 300,000 UK citizens (15% of the thyroid community – millions worldwide) have a normally functioning thyroid GLAND, but the hormone it is secreting is not getting into the cells where it does its work. These are the folk who need T3, in combo. with T4, T3 alone or in NDT. The RCP teaching curriculum makes no mention of the possibility of a non-thyroidal condition where patients suffer the same symptoms and signs of hypothyroidism that may need to be treated with a different medication or hormone. When these patients complain of continuing symptoms when treated with L-T4 monotherapy, many are given an incorrect diagnosis of ME, CFS, FM, depression, functional somatoform disorder – or even old age blah, blah, blah – and sent on their way without further investigation or treatment. This is a serious business, which the RCP and BTA choose to ignore.
Dr. Malcolm Kendrick 
I could weep with gratitude for this post Dr Kendrick. This situation defies belief. Today I tried to help a twenty eight year old housebound woman with Hashimotos hypothyroidism denied treatment because the TSH was not over ten. Another friend was a very successful BBC director, also now housebound, not worked for a decade – TSH 7 so not treatment. My own thyroid was removed and I had to beg for treatment. T3 below range but I was told that’s not important. I like to think I’m a calm and rational person and my recovery is evidence enough that natural thyroid works but it seems that level of real life evidence counts only as anecdotal. I could go on but I bore even myself now.
I’ll let the new BMJ Best Practice quote have the last word.
Benefits and harms
Levothyroxine (L-thyroxine) versus placebo:
We found no systematic review or RCTs comparing levothyroxine versus placebo in people with clinical hypothyroidism, although there is consensus that treatment improves symptoms (see comment below). We found one systematic review that reported on adverse effects.[7]
http://bestpractice.bmj.com/best-practice/monograph/535/treatment/evidence/intervention/0605/0/sr-0605-i1.html
It is called eminence based medicine Lorraine.
Dr Lowe wrote this paper and this is an excerpt:
The link below was published in 2005 (10 years ago with evidence of T3) excerpt:
New Studies Refute an Old Objection to T3 Therapy
Dr. John C. Lowe
August 17, 2005
In 2002, a Portuguese molecular biologist, Dr. Joana Palha, reported study findings that, although not intended to, show that an argument for using T4 alone is false. The findings should change the beliefs and clinical practice of many doctors, enabling more hypothyroid patients to get effective treatment.
http://web.archive.org/web/20101030234509/http://drlowe.com/jcl/comentry/notransthyretin.htm
Few things have changed unfortunately.
Thank you for your succinct post, I would like it stopped too. I believed innocently in the GPs and their treatment until this disease hit me, and then it beggars belief what nonsense gets spouted.
For instance a swollen scalloped tongue was always a significant indication of thyroid disease, when i showed mine i was told “yes it is swollen but is within the normal range” Can you or anyone tell me what the range is for swollen tongues ?
That maverick doctor, the late (and great) Dr Gordon Skinner, took one look at my daughter’s tongue and told her that her thyroid was the source of the health problems that were blighting her family and professional life at the time. That consultation completely turned her life around. We need another Dr Skinner, someone prepared to use their brain rather than blindly follow blood test results and misguided Guidelines. Anyone know of a medical professional who might fit the bill?
Log scale is a fraud. Non-log TSH of 10 is 316277 times more circulating TSH than 4.5 impressing isn’t it? Please prove me wrong!
Even, according to the latest NICE guidelines (which were revised Feb 2011), ‘normal’ TSH range is 0.4 – 4.5. There’s no doctor in the land who should be refusing to treat anyone whose TSH is almost 10.
http://cks.nice.org.uk/hypothyroidism#!prescribinginfosub:3
I hope this scandal will be over soon, and you, your friends, myself and every other sufferer can be treated the best way for them, and with some respect.
I am waiting to have a hemithyroidectomy with a TSH of 6 & have been told by my consultant that I will not receive any medication until my TSH level is constantly over 10 even though I have all the classic signs of hypothyroidism & am in constant pain. It has taken almost a year & 2 indeterminate FNA’s on a 6.8cm solitary nodule to get agreement to remove & still probably have another 2 months to wait. Not impressed with the NHS!!!!!!
When you have body temperatures abnormally low that cause irregular heart beats and slow heart rate, you are freezing with a heavy sweater on in Summer and your temp is 96.02 and this happens every few weeks for a few years. But then they are 24 hours a day, and every doctor you talk to including two endocrinologists and they arrogantly, rudely say, “Your TSH is normal, you do not have a thyroid problem!!” finally after seven years I went online, read everything from the Naturopath doctors and did deep research and I know I am sure much more than my doctors about T4, T3 and how T4 converts to T3, what can be wrong when it does not convert enough and that low T3 caused my low temperatures, because why have been normal now 24 hours a day for two years since I started taking Dessicated porbine thyroid supplement. But my Total and Free T3 labs still show too low and now I have Atrial Fibrillation and why if they do not even believe in low T3 do they put a warning on my report of my recent echocardiagram, that in a test of 100 newly diagnosed Atrial Fibrillation patients, 30 of those patients were tested and had low T3 which can cause Atrial Fib and they know other cardiac problems like CHF. Problem is pharmaceuticals make lots of money from Synthroid, etc. but would not make the money from dessicated thyroid which has 60-80% T4 and 20-40%
and works for those with Low T3 Syndrome but we still need to know what is causing Low T3 and get it taken care of, is it the pituitary, the hypothalamus or Adrenal insufficiency or inflammation. No doctor will touch these and even do the clinical tests. Naturopaths will but some like me on medicare have no way to pay for them!!! Elaina Parton
Elaina, you’re ahead of most doctors. At med school, they learn at least 10 years old science. Not only most doctors don’t barely keep up with their 10 year lag, they get farther behind. In doubt, they fall back on what they learned by heart several years ago. They could even end up teaching in med school!
please tell me what country you are in. very interested in the note on your ECG
Thanks Julia UK
Very interesting. Iam having problems with balancing levels and seem to need one dose in winter and a lower dose in summer. Have read this is common. On reading a link between body temperature and thyroid I decided to monitor my Basel temperature over a period of a week. It ranged from 33.5 to 35.5 which is low as normal is about 37. Does this possibly mean that Iam not converting T4 to T3 effectively.
Hi Lorraine,
You mentioned in your comment about T4/T3 etc that you are taking natural thyroid. I hope I am assuming correctly that you are based in the UK. If my assumptions are correct, how did you get your doc to prescribe it?
Kind regards
Andrea
asadler79@yahoo.co.uk
Andrea I am in the UK but sadly my prescribing doctor died last year after a long battle with the GMC. I now buy my life saving hormones (which were removed by RCP endorsed doctors) online.
Thank you, Dr. Kendrick! The situation in US medicine isn’t much better. The dirty word in all this is “self-treatment”, because that is the only way patients who cannot afford boutique/concierge medicine, can get off of SSRIs and feel well again. US patients with financial resources go to doctors like this guy, and the rest suffer:
http://www.hormonerestoration.com/Docs.html
I agree with you post regarding NDT in the states, but, will add that we (as patients) are waking up to the scam, we are doing our own research, firing our smug doctors and shopping online, after taking NDT for 8 months now my life has been transformed, i am awake in the morning, i have energy which equals joy, my hair stopped falling out, i could go on, but i know this for sure, once a hypo patient takes NDT they dont want that synthetic crap to ever touch their lips again. Explain to me why on earth would a non-converting thyroid patient want to add more T4 to a system that cannot convert it? im no bio-chemist and even i know that is just common sense, taking T4 (levo) if i cannot convert T4 would be like me getting insulin shots and not be diabetic..
I’ve just had ‘proper’ blood tests and found low T3, slightly elevated TSH and normal T4. I feel dreadful, having had quite a rapid decline and exhibit most classic symptoms, the most obvious of which is unexplained weight gain and permanent tiredness.. After going grain-free about 30 months ago, I had a bit of a bounce but it’s now all catching back up.
Not yet on treatment but holding out for T3 or NDT..
I have the same exact situation as you in terms of results – I am now on T3 (Read Elle Russ’s book and Paul Robinson) and feel so much better.
Reblogged this on Lorraine Cleaver.
Good to have you on board! This situation is insane. How long before the establishment wakes up and listens? Wish you were back here in Aberdeen to help me!
I am with you on that. Also in Aberdeen and loosing the will to live fighting this been 13 yrs and docs don’t listen and not interested. Just get told I am ‘fine’ …. Definition of this please ?! But what are our options. Willing to pay for T3 but scared to order on line
Karen – Go for it! Check the TPAUK site and you’ll get good advice. Nothing happens without faith. Just hang onto the belief that your body wants to get well because deep down we all know that. It’s what makes us so mad when we come up against doctors who should never be in a healing profession.
I found this article in the journal ‘Nature’. There’s no advice here but it just might persuade you to go it alone. It was written by a man who understands what science is really about and it puts the cowboys we deal with into perspective.
On my Way to Being a Scientist
Thomas M Schofield
I knew I wanted to be a scientist when I realized that science was not about the truth. I know that this statement requires some clarification; it might help if I told you how I came to this realization. There is nothing particularly special about my story except, perhaps, for how it began.
In the early 2000s, I was at work at a recruitment company in London when I got a phone call. It was my mother: she told me that my sister had had a brain haemorrhage, and was critically ill. I ran home, packed a bag and took a train to the hospital, arriving just as my sister came out of surgery. She was in a bad way, the doctors said. The operation had been complicated and there was no way of knowing if she would ever wake up. She did not regain consciousness for many days.
I stayed at the hospital for the entire time, and sat by her bed through the days and nights. I knew that I wasn’t doing anything useful, but I couldn’t sleep and the hospital room seemed to be as good a place to be awake as any. I spent most of that time thinking. I was upset. Why could no one tell us what was going on? I assumed that some people, somewhere, knew a great deal about the brain and how it worked. I thought that the problem must have to do with the distribution of the relevant information — if there were more neurologists and psychologists, then more could be done for people who were ill. It seemed to me that the job that I had been doing for five years was not as important as this sort of aspiration. I was earning good money, but I had started to feel that the job was repetitive and boring. And now I began to feel that it was rather a pointless thing to be doing with my life.
Change of tack
My sister began to get better, and after about two weeks she was allowed to go home. I went back to my life in London, relieved but determined. I decided to take a master’s degree in neuropsychology, with the aim of becoming a clinical psychologist. But I did not become a clinical psychologist. I became a scientist instead — by accident. How did this happen?
There are four stages on the road to becoming a scientist, and I remember them all.
To begin with, you simply want someone in the know to tell you the truth. You read textbooks and attend lectures, and are overawed by the immensity of it all but struck by how neatly everything fits together. You do a few simple experiments in your lab, and you get exactly the results that are expected. There seem to be answers to all of your questions, and you feel that if you read enough textbooks and attend enough lectures then you will understand all there is to understand. This is the stage I was at when I finished my first undergraduate degree, and what I was expecting to find when I went back to do my master’s.
Conflicting stories
The second stage begins when you realize that scientists frequently disagree with each other about what is true. This stage is disturbing, and is caused by taking the business of writing essays and papers seriously. Typically, you will be given a question along the lines of, “What function does Broca’s area of the brain serve?” To answer it, you start by reading a long paper by Professor X, who sets out his theory in convincing detail. You think, “Of course, how obvious. It controls the processing of syntax — how could anyone think otherwise?” Next, you read an equally long and detailed review paper by Professor Y, who takes a contrary view, and you think, “Hmm. Professor Y makes some very good points. Perhaps Professor X doesn’t know what he’s talking about after all”. And then on you go to Professor Z, and utter confusion. One of them must be telling the truth, but which one? So you write your essay, describing the contrasting theories of X, Y and Z and conclude: “Opinion is divided — more research is necessary.” This is the stage I was at when I finished my master’s degree. I decided that maybe I could do some of that research, so I started a PhD.
” If I am lucky, I will spend the rest of my life finding new things that I will never quite be able to explain. ”
The third stage of becoming a scientist begins with the realization that nobody knows the truth. This stage is absolutely terrifying, and is caused by doing research. When I started running real experiments, collecting data and testing my ideas against those data, I came to realize that things were not as clear cut as they had seemed from the papers that I had been reading. Sometimes things did not work out as predicted by any of the theories that I knew about. There was always something that could not be explained. I found this troubling, and began to doubt my work. Luckily, I had a very supportive supervisor.
When you start doing science at the PhD level, you begin to work and socialize with real scientists — occasionally the very scientists who wrote the papers that so impressed you during your studies. Once you become a professional scientist, these people are usually happy to let you in on an important trade secret: nobody is really sure of anything. A scientific paper is just one cut and polished facet of a bigger, uglier stone. Behind the beautiful graphs and whip-smart arguments lies a tangled mass of doubts, conjectures and anomalies. Pulling any loose thread is usually enough to make the paper lose its shape. The most important thing my supervisor taught me was that this is not a bad thing.
Better and better
Some scientists are lucky enough to pass through a fourth stage. This is when you realize that science is not about finding the truth at all, but about finding better ways of being wrong. The best scientific theory is not the one that reveals the truth — that is impossible. It is the one that explains what we already know about the world in the simplest way possible, and that makes useful predictions about the future. When I accepted that I would always be wrong, and that my favourite theories are inevitably destined to be replaced by other, better, theories — that is when I really knew that I wanted to be a scientist.
A theory can never be perfect: the best it can be is better than the theory that went before. I want to come up with better theories about how the brain works. If I can do this, then someone else can use my ideas to come up with something even better. As theories improve, we are able to make more useful predictions about how things might work in the real world, and from those predictions we can develop better treatments. I want to be part of this progression. This means that, if I am lucky, I will spend the rest of my life finding new things that I will never quite be able to explain.
So there it is. My interest in the brain is pragmatic, rather than curious. I never really wanted to become a scientist. But I became one eventually, because I had to.
Author information
Thomas M. Schofield was a postdoctoral fellow in neuroscience at New York University. He died in 2010 in a bus accident in Colombia. Writer Stephen S. Hall helped to edit this essay on his behalf.
Lovely essay. I may just put it up on my blog, unchanged
Just maybe someone should think about legal action relating to this? For years I was told by my GP that there was nothing wrong my thyroid was healthy! Later my skin started dropping off in small sheets, I was really close to giving up when I saw a dermatologist who listened and directed me to an endocrinologist and from then on my life re-started with very small dose of T3.
Wow, I almost cried reading this post. Sometimes you feel like you are living a real life conspiracy theory, a living si-fi experiment.
I have always been well labelled as a goodie two shoes, someone rarely prepared to step outside the lines but after five years of no thyroid on levothyroxine I started taking a small amount of T3. I was so frightened to go against the system that I could barely get the first pill down and spent an extremely anxious 24 hours waiting for the worst. I could hardly believe that I felt I could get air into my lungs, my mood felt lighter the list of positives continue. I am on day 15 and although even I am to be convinced, I can barely believe it.
Thank you so much for writing the article and for taking an interest in the this thyroid conspiracy. So many of us here suffering and no where to turn.
ps Would just like to say that I found your book ‘The Great Cholesterol Con’ a must read for people that have thyroid problems as most of us suffer from cholesterol problems.
Totally agree in every respect. Except – my normal feelings started after just two hours of being on the drug! We need to get together – why should we be in this dilemma. I was told just three days ago by my CCG that there is no evidence that T3 works – but no patient has been spoken to! This is disgusting in this day and age. Patients matter – but do they????
Michelle – did you self medicate T3 or go through a GP / endocrinologist? I want to try T3 but like you the thought of trying something “outside the box” is terrifying. Trying to google search a Dr/Specialist but they don’t advertise online that they medicate NDT to patients. Anyone that can recommend someone is much appreciated – I live in Essex so anywhere in and around London is perfect though i will travel miles if i find the right help! Cx
You need to join Thyroid UK’s forum and TPA’s forum, both have lists of doctors that prescribe NDT and or T3 – these lists are kept confidential for members only and are not circulated on the internet.
Cadent04, I am self medicating but previously my GP has said he would not be adverse to prescribing based on the fact I have no thyroid. However, the endo was emphatic that he would not condone the use of T3 based on my TSH! As I have more than one autoimmune disease, I need to endo for future testing so cannot afford to get on the wrong side of him. I pretty happy to get the support I need from Thyroid UK’s forum for now and then once stable, tell my doctor and hopefully see if he will prescribe it for me. And that’s what’s wrong with all this unbelievable nightmare. You have work out how to make yourself better whilst in fear of losing your right to necessary medical help.
I really recommend Thyroid UK’s forum and they carry an up to date list of good GP and endo’s in the UK that do prescribe T3.
I wish well you well and happy to help if I can. 🙂
Did you ever try T3 on line? Do you feel better?
I was told my cholesterol was too high decades ago. That should have been a clue to my thyroid state. Then I was diagnosed with IBS, another clue because the gut needs energy and mine wasn’t getting it. Dr Kendrick’s cholesterol book was the start of my decade long search for better health. I can’t thank him enough for saving me from the statin nightmare.
Now I’m self-treating my hypothyroid state with T3 because my adrenal insufficiency (years of sub-clinical hypothyroid did that I’m sure) means NDT hasn’t been successful. I’m learning all the time and still ill, but feeling much better and I know there is hope because I get glimpses of it. I’m trying to use T3 to heal my adrenals. And I think it might well be about to work! Just got to titrate the doses and timings to hit the nail squarely on the head.
I also experienced great improvement almost immediately once starting NDT. The brain fog gradually receded, I weaned myself off the SSRI’s which was the only thing the Dr was prepared to prescribe. I am now alive but have to buy my own, Drs and Endos wont help me even though my TSH was at 8.71 and I was bedbound. Another good book was What your Dr STILL doesnt know The Calcium Lie by Robert Thompson and Kathleen Barnes. The plot thickens and it is shocking to realise that we have been fed these lies and kept sick for monetary gain.
I am so pleased to hear you addressing this issue. I have been hypothyroid for twenty years and hit the ‘m.e’ wall four years ago. I presumed that because i had an enlightened GP who allowed me both T3 and T4 my thyroid had no part to play in my illness. That was until I moved and a less enlightened GP decided to half my T4 and remove my T3 overnight because my TSH was supressed, despite my arguments that any reduction needed titration down in a similar way to how it is titrated up. I thought oh dear, well I guess my hair will start falling out, I’ll get fatter and my skin will get dry again. NO within about 4-5 weeks I had ground to a halt again – 3 years of crawling my way from hell into simple purgatory was wiped out by one stupid GP who refused to give me back my T3.
Since then I have educated myself about T3 and something even more interesting Rt3 which is what happens to T4 if the body doesn’t convert it into T3 it knocks a different iodine molecule off and makes RT3 which is not accessible for energy production.
NO I am not cured of my ‘m.e’ yet – there are other factors at play such as bioavailable cortisol that is non existent although my body is making cortisol. Curiouser and curiouser said Alice.
However, T3 only has made a huge improvement in my health, got rid of many symptoms and energy has tripled from before the evil GP stole my meds. Of course I have to buy all this myself even though I am too ill to earn a proper living. Thanks NHS Wales for nothing.
I think NDT might work for some people because it comes with the proteins that transport it round the body – it’s like it comes with its own car – but I haven’t seen anyone explore this idea. However Professor Dyan thinks he has studied NDT and if anyone says they feel better it is in their heads. I ask what is more insane a) thousands of people have severe mental health issues on a level with Munchhausens because they choose to live half lives; or b) believing people like me are mad rather than there is some unexplored scientific explanation?????
What is your basal temperature Sula Maye? The release of cortisol from its binding globulins is exquisitely sensitive to temperature (you heard it here first). Isfet
Oh Isfet, Where can I find out more about that? With failed adrenals my cortisol stops working when I lie down and my temperature plummets, then I cannot sleep.
Untreated Hashimoto’s for 40 years left me with ME, near Addison’s, thyroid hormone resistance, severe malabsorption etc etc. All of if was missed by GPs and numerous specialists. And now these doctors plan to wean me off the T3 and cortisol for my own good, even though all tests show much too little cortisol, and basal temp. is always dropping. I offered to comply if they would take account of signs and symptoms, this was declined. 😡
They don’t know their job, and cannot therefore take action against Prof. W and his cronies picking off the good ones one by one. The good news are the rise of Functional Medicine in the U.S. , this will make them obsolete together with the silly gastroenterologists and immunologists. It will be too late for me, but great anyway.
Great post Dr Kendrick
my morning one? varies from 36.1 to 36.5 on a good day. It’s still not stable throughout the day despite being on a large dose of hc now. How does temperature effect the release Isfet and where can I read more. Is it that when the temp is low – such as in hypothyroidism – the cortisol is not released? That sounds very interesting and I would love to know more as I haven’t found anything yet to explain how i can have high cortisol production but below range on every sample of saliva stress test. Please point in the right direction and thank you.
Thank you Dr Kendrick…another beautiful voice in the corporate controlled void.
I was hoping Isfet would enlighten us but here are some links stemming from that quote for starters if anyone wants to delve further :
http://www.ncbi.nlm.nih.gov/pubmed/20631013
https://www.infona.pl/resource/bwmeta1.element.elsevier-879b6a86-01f2-3d07-84e9-9c2f7227f11d
science in depth http://press.endocrine.org/doi/pdf/10.1210/jc.2010-0942
Cortisol, in general http://breakingmuscle.com/health-medicine/the-ups-and-downs-of-cortisol-what-you-need-to-know
Tons on cortisol,low thyroid/low adrenals etc etc.
And not forgetting the unscientifically proven ( apologies if it now has) http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCEQFjAA&url=http%3A%2F%2Fwww.wilsonssyndrome.com%2Fwilsons-temperature-syndrome-symptoms%2F&ei=UmiWVZmUGsH7-AH0lZ6oCA&usg=AFQjCNFSODyQoarqbvuIsxisVml9aWztWw&sig2=s1lix9NzGR9uNGHjscFwxg&bvm=bv.96952980,d.eXY&cad=rja
Isfet, I have just seen this. Thank you.
For anyone else who is interested, the report is at http://press.endocrine.org/doi/full/10.1210/jc.2010-0942.
Since cortisol is released from its binding globulin as a response to increasing body temperature, isn’t that a fundamental flaw in the Insulin Tolerance Test, a side effect of which is increased body temperature. It would certainly explain the all-too-common disparity between ITT results and results of salivary cortisol tests, which measure bioavailability but are routinely disregarded by UK mainstream doctors (NHS and private).
I too am thinking of getting ndt but not sure if I should go for this or stop on thyroxine (presently 100mg) and add t3. Personally I’m leaning towards ndt. Any comments appreciated. Does anyone know how much ndt is?
My three grains a day of NDT cost me about £90 a year if I buy one brand and close to £200 if I buy a different brand.
Hi Sula,
I have ME too and have been sure for years I’m hypothyroid, but blood tests are low range of normal. I really want to try porcine desiccated thyroxine to improve my symptoms .
NDT I’m not quite sure what this is.
My problem is to find a GP who will prescribe it for me privately if needs be as I can’t go on feeling so awful any longer. . . . I would rather be dead quite honestly.
Please could you inform me how I go about getting some melds prescribed or private GP to assess me and prescribe???
Kind regards,
Nicola Elliott
Nicola, NDT is simply Natural Desiccated Thyroid, usually porcine in origin, found in brands like Armour, Erfa, etc.
For a list of private clinicians who may be able to help, try emailing Thyroid UK.
http://www.thyroiduk.org.uk
You could also try tpauk.com, Thyroid Patient Advocacy, which is a more radical and arguably a more helpful patient charity. It is run by the redoubtable Sheila Turner, who has posted here.
I see Dr Barry Durrant Peatfield, based at Warlingham, Surrey. He has several outreach clinics around the country, but he has reduced the number of these, particularly in north-east England, to cut down on travel. I go to the north Yorks clinic now, but it’s a long journey south for me. He is hugely experienced though, and also quite venerable. Consult him while we’ve got him! 🙂
Nicola
First off – NDT: natural desiccated thyroid. Secondly, if you want to try porcine thyroid, then it can be purchased from a company called The Natural Choice Ltd, based in Surrey. You’ll have to Google the URL as I don’t want to incur Dr. K’s wrath for posting it. It’s called Metavive.
The most outspoken proponent of holistic thyroid treatment was, of course, Gordon Skinner, and I heard nothing but glowing reports and praise from those who were treated by him. Sadly, he’s no longer with us, and I just wonder how much the constant harassment and haranguing he suffered at the hands of NICE lead to his untimely demise.
The NHS isn’t fit for purpose. Taxpayers need to demand a refund!
In Canada we have Dr David Derry who had a similar battle of Dr Skinner.
http://www.thyroid-info.com/articles/david-derry.htm
NDT was the only thing that relieved all my swelling from 20 years undiagnosed hypothyroidism. It also helped my skin, by this time even my eyelids were peeling. Before NDT I took 200 MCG of Levothyroxine for 2 years, which did absolutely nothing.
I’m self medicating now, unfortunately it’s the only way to go. I saw an endo once, who told me it wasn’t my thyroid, but kindly wrote to me that my thyroid antibodies were in the 600’s
I’ve also found out that thyroid meds don’t work until there is sufficient cortisol. I paid for my own adrenal testing and my cortisol is dangerously low along with DHEA. I was fainting regularly until I decided to buy hydrocortisone. Taking 20 mg of hydrocortisone has resulted in mostly normal temps for the first time in decades. I’ve found also it’s important to have sufficient iron, Folate, Vit D3, Vit B12 for the thyroid meds to work. I was deficient in all of them.
I still have swollen ankles, dry skin, muscle pain but considerably better than I was 4 years ago. Even my underarm and pubic hair which I had lost completely is starting to grow again. My nails had stopped growing, these are getting longer, just head hair loss to improve.
I had all the classic symptoms, even the enlarged tongue, sudden high cholesterol, painful joints, low mood, painful muscles. 30 years of antidepressants, when all the time it was low T3.
Very interesting indeed. I suffer a disease , ME, which bisects both of these issues because of prejudice and misdiagnosis . I expect you might consider me one of the Whackos you mention above, but nothing could be further from the truth. Apropos my disease I’d love you to read the two links below without any preconceived ideas and then see if this is another scandal you might wish to write about one day please? We, as a diseased population, have been firmly placed in the ‘Somatising’ waste bin (an interesting concept in itself as it cannot be proven to exit), but the final link might make you sit up and take notice….
Compare and contrast these few pockets of information with that which is doled out by the Wesseley School, the SMC, NICE etc etc:
http://www.meactionuk.org.uk/Corporate_Collusion_2.htm ( 2007 so a little out of time ‘but that’s alright’ to quote Rod 😉 ..still applicable. )
Historical synopsis of ‘grey information’:
Part 1 “grey” literature on ME/CFS (1956 – 1990)
: http://www.meactionuk.org.uk/Grey-Information-on-ME-CFS.htm
Part 2: 1991 – 1993
http://www.meactionuk.org.uk/Grey-Information-Part-2.htm
“Grey” Information about ME/CFS Part 3: 1994
http://www.meactionuk.org.uk/Grey-Info-Part-3.htm
and http://cii.columbia.edu/blog.aspx?cid=y3BAaz
Sorry ..the nature of my disease means there are a few typos above (cognitive concentration is not exactly A1 these days. ). Apologies. Clearly there are more than 2 links and ‘exit’ is ‘exist’ .
Hi Rosie
I feel for you, I’ve been there, CFS I mean, although T4 is not doing the job for me, and the medical establishment in my country is only interested in TSH. Back to CFS – I recovered 7 years ago mainly by using EFT (Emotional Freedom Techniques – google it, it’s free to learn the protocol) and another technique that retrains the brain by calming down the Amygdala (which I found on-line and purchased for a very reasonable price – I know a number of people who used it and recovered permanently). The idea that one is somatising is insulting (outdated psychiatric language), but the mind/body connection is there, due to the function of neurones and their effects on all the organs. In that connection, the digestive tract is just as important as the gut is considered to be the second brain by people in Functional Medicine, so dealing with infestations (parasites, bacteria, fungi) is also essential. And food.
I hope this helps – CFS/ME does not have to be a life sentence.
Hi at 28 I was given a short term prescription of lithium carbonate. Immediately I noticed my “Im Full” trigger was gone and appetite increased almost 3 fold. Gained 15 lb weight, became lethargic, brain fog and was taken off the med. The the normal signal to stop eating never restored and weight never dropped. I became less active and eventually developed HIgh blood pressure, lower kidney function, higher weight gain as a result of what seems changes in carb metabolism. I used a Keto diet and reduce from 175 to 145 lb weight but hit a floor of 142 and cant reach my 130 lb goal. prior to the lithium treatment I was 115 lb athletic, ADHD and 5’4 so good BMI of less than 10%. Recently got blood test and TSH level is normal range, but many symptoms persist, I ordered NDT from Australia that came in today. I am going to self treat 30 mg a day and see what happens. I feel there is a direct link with lithium and my metabolic changes.
Thank you for approaching this subject. It’s what I did my master’s thesis on. In America, the governing body is paid for by the two largest thyroid (T4 naturally) medication manufacturers worldwide. And in their statement of ethics they say quite clearly that a patient who is hypothyroid may not be in control of their faculties due to their hypothyroidism and thus should not be listened to if they say they want to try NDT or T3 in addition to T4.
It’s a touchy subject for me, because I’m hypothyroid and I take NDT – I feel good when I do, and I feel crappy when I don’t. Levothyroxine just doesn’t do it for me. I’m starting to wish I’d become a naturopath instead of the path I did take – at least I would have the freedom without worry for my license if I do choose to discuss this or prescribe other than the ‘approved’ thyroid medication regimen for patients.
Quote “a patient who is hypothyroid may not be in control of their faculties due to their hypothyroidism”
Isn’t that the same as saying that T4 does not solve hypothyroid symptoms in everybody?
They are condemning themselves!
It’s like saying depressed people may not be in control of their faculties due to their depression, thus should not be listened to if they want an anti-depressor in addition to their psychotherapy!?!
I seems empathy is not is not a prerequisite for med school!
It would be interesting to read your thesis, any way to get a copy? PR Lundy
Is it possible to read your thesis? PR Lundy
Great to see you entering the fray on hypothyroidism. Was it something I said to you last year? Anyhow maybe the reason there is a lack of prescribing for people who are obviously exhibiting signs and symptoms of hypothyroidism may be this: There are well over 100 different signs and symptoms of hypoT. Isn’t it just better to prescribe for all the symptoms on an individual basis (Migralieve for migraines, Antidepressants for the depressed, have a coil fitted if you have menstrual problems, carpal tunnel operation for carpal tunnel etc etc..) when in fact all these issues could be addressed in one fell swoop – and more cost effectively – if correct thyroid medication is prescribed instead. But of course that doesn’t generate as much income for Pharma. Another problem here (correct me if I’m wrong) is we don’t have the technology to tell us how much thyroid hormone we’re absorbing – only how much is in the bloodstream and the two just ain’t the same thing at all. Years ago a good doctor would take into account the patient’s symptoms. Now good doctors have their hands firmly tied together.
(BTW my migraines were caused by hypoT. In the 37 years or so that I had migraines no doctor even suggested for a moment that it could have been caused by hypoT. I researched the subject myself – and all the info is out there. Just what is being taught at med school these days?
80 years ago or so, cholesterol blood testing was the diagnostic/titration test for thyroid hormones levels then. Dosage was 3 times higher than the TSH test era. Now thyroid patients taking levothyroxine with seemingly normal TSH but underdosed have to take drugs for high cholesterol which gross sales in the billion $
Alastair, is there a place where all the possible “..over 100 signs and symptoms…” are gathered together? Your post rings several bells that I had not realized were part of the same unpleasant tune.
What a great post!
Is there really any thing left of science in the medical church now?
Today I see antibiotics to be real cures when you have got a bacterial infection, well aware of the massive abuse in agriculture. Against the ‘general guidelines’ I was myself able to finally acquire an extended antibiotic treatment for my ‘Chronic Borrelia’, although it could not possibly exist, almost made my right arm a useless tool ten years ago. The intense pain, the positive Borrelia testing together with some sceptic research from my side, though, convinced me that the existence of this ‘non-existing’ illness was quite feasible.
Funny thing – I don’t have a problem any more when chopping my firewood.
Science is 10 years ahead of medical practice. Thus, faculty of medicine textbooks imprints students minds with 10 years old knowledge, and doctors with several years of practice when in doubt go back to what they learned in school. We should not be surprised of their reaction when confronted with up-to-date patient-gathered testimonies and/or modern studies.
Hopeless.
I have friend with chronic Bartonella and Vabessia etc ( spelling?possi bly tic borne .She’s being told what you were told . What did you do to get better ?
You can’t win levothyroxine is T4 only and by not giving T3 the major hormone it will cause in most people, for them to have heart problems, pancreas, liver, diabetes etc., just think how much more money the pharmaceuticals will make, we live in a greedy sick world and I wonder how they live with themselves
Not a bit surprised. Having just finished “Science for Sale,” and having recently sat through the dog and pony shows of three California State Senate hearings, I now realize the drug lords are pretty much in charge of everything, abetted by media and legislative bodies. Everyone sick all the time is their aim. Skepticism seems to have disappeared from our national character.
I could not have read this at a better time. I had no idea of this situation. I am 41 and was diagnosed with Hashimoto’s at the age of 23, while I was living in Sweden. I was very ill for years after DX despite levothyroxine (was told I had CFS!) and have gradually improved to thankfully normal health about 5 years ago. Over all these years I have taken 100mcg T4 per day, had T4 tests at high end of normal and a totally, completely suppressed TSH. Since the very beginning.
Now I have a UK GP insisting I am setting myself up for osteoporosis with my suppressed TSH. My T4 is currently slightly higher than reference range. Yesterday I had blood drawn for a bone profile at GPs request, along with some other things. I am terrified of being bullied into reducing my T4 as I fear losing my health again – and I now know that I may never be allowed to increase the T4 again if my blood tests become “normal” after a dose reduction – even if I become unwell. Thank you for the eye-opener.
Hi Kirsten, take a look at tpauk.com you will find some help there!
TPA UK (Thyroid Patient Advocacy) is a registered charity where membership is free. They have over 600 documents giving information about hypothyroidism and its causes and possible treatments etc – and there is a forum for advice and support too, along with many other useful documents, facts, patient stories and news items. They also offer pre-negotiated discounts for supplements and tests to their members – please visit them on facebook or at http://www.tpauk.com for more information.
So many comments I could make…….
1 Why is there such a large number of people suffering from hypothyroidism? I understand that the iodine receptors of the thyroid gland can be blocked by other halides such as fluoride, bromine, chlorine – all of which are preferentially taken up by the thyroid and all of which are abundant in our modern way of living. Because of this, we actually need a lot more iodine in order to compensate, or alternatively try and avoid those aforementioned halides.
2 Why is it, as you point out, that doctors don’t believe what their patients are telling them and would rather rely on a bunch of lab results? Patients are ‘accused’ of having psychosomatic illness a lot of the time, when the ‘lab results’ don’t corroborate their symptoms. (I could also bring in the dreaded ‘homeopathy’ here, and point out that patients say that this works for a lot of them, but nobody believes them…..preferring to use the ‘placebo’ effect as an explanation but not explaining why homeopathy works for comatose patients, babies, animals…..plus may either aggravate symptoms for a short time or produce ‘proving’ symptoms that match the remedy picture)
3 NICE guidelines for treatment of depression in children and young people advocates the use of (useless) antidepresssants and psychotherapy for children, but even though Prozac is the only licensed drug for this, doctors are perfectly entitled to prescribe any other antidepressant for that patient category if they feel it may be helpful! So much for NICE guidelines. Even though the MHRA, having taken on board recent information from the FDA, now states that a whole list of SSRIs should not be prescribed for anyone under age 25 as ‘the risks outweigh the benefits’, this (so I have discovered through my own enquiries) has no influence on doctors who, again, can prescribe anything they like. I found this out as my 16-year-old daughter was, on admission to hospital for depression, immediately put on antidepressants (on the ‘not approved’ MRHA list) which, for 12 weeks on increasing doses ‘to see if it would have an effect’, made her attempt suicide several times and did nothing for her depression. At the end of that 12 weeks, they decided to ‘augment’ that drug with another SSRI to see if that would work. I wrote a lot of letters and emails to NICE, the MHRA, her hospital consultants – but got nowhere, even having quoted Professor Healy, Professor Peter Gøtzsche, Dr Peter Breggin, Dr Irvin Kirsch and others – as well as pointing out that the ‘serotonin’ deficiency hypothesis has all but been disproven, that studies show that the drugs are no better than placebo and in any case produce more problems than they may resolve. My daughter, being over 16, is now apparently old enough to make decisions about being admitted, prescribed drugs etc on her own. She told me that she ‘hadn’t thought her problems were that bad’ when they offered her a place in the unit, but that ‘they must know better than me’ – so agreed to the admission and the treatment. She also told them that she didn’t want me to know anything about her treatment…….but being a concerned mother, I put my case forward anyway.
Finally, “Compare and contrast, then try to make some sense of the medical world that we now live in.” I, personally, cannot make sense of this medical world – I was a diagnostic radiographer 40 years ago and things were a lot more straightforward then. Not perfect, of course – I asked a lot of difficult questions even back then and my doubts started to creep in. Over time, I have become a lot more cynical about ‘orthodox medical practices’ and pity my children and future generations for what may come.
I agree particularly with item #1. Iodine is added only to iodine table salt which is the first to go on a low sodium diet. Some individuals (not taking supplements) and eating goitrogenous foods are probably deficient given other halides dominance go under the radar. Traditional Japanese diet, on the other hand provide up to 100 times the iodine minimum daily requirement…they don’t need to avoid that tofu!
Thank you very much Dr McKendrick for publishing a great article in regard to the treatment of hypothyroidism or detection of hypothyroidism. Nowadays few medical professionals know the clinical symptoms, are told not to go by the patients’ symptoms but only upon the TSH blood test result condemning thousands to a miserable existence which might result in their losing their jobs, homes, relationships etc
Just in case you have not read this Critique from a now deceased doctor to the RCoP and BTA and despite him requesting annually for three years for a response, it was never forthcoming. They are clearly uninterested in knowledge or the many patients thus diagnosed with a ‘somatization disorder’ which cannot easily be removed from their medical records.
http://www.thyroidscience.com/Criticism/lowe.3.16.09/bta.rebuttal.htm
Thank you once again for your courage in publishing your views and hope you are not next ‘in line’ for retribution.
In the NHS lab where I work, the scientists bemoan the fact that thyroid tests are so hard to interpret. The immunoassay analysers are running at full capacity doing mostly TSH and T4 tests for diagnosis and monitoring. T3 is offered if specifically requested. Immunoassay test results can be greatly affected by other drugs.
What intrigues me is that we are told that thyroid function tests are not reliable for inpatient requests. So if you are ill and visit your GP, your thyroid function may not be within normal range, therefore you are invited to have a repeat test. So if the repeat is now within normal range? Does that mean a further test is necessary? How can the GP possibly keep up. Add to that scenario, the rapid privatisation of lab services in the UK, you can assume the companies that supply the analytical equipment will dictate the cost of the tests, they will want to test everything. A good investment for them
It will continue to be an ever increasing financial burden which will be paid for out of the public purse. To test or not to test, what is the answer?
This article made me smile – and made me cry. I felt heard. Thank you so much Dr Kendrick.
I worked for the NHS for 16 years. I was a critical care nurse specialist until thyroid disease and the lack of appropriate treatment / care to address my symptoms meant I effectively turned into a sloth. I lost my job due to incapacity. I became house / bed bound – a shadow of my former self. Over the last 8 years I have seen 9 GP’s and 4 endocrinologists, most dismissed me as depressed with CFS, and making it up – even though I had obvious physical symptoms to the contrary – its the blood tests that were believed – ‘computer says no’.
I took matters into my own hands nearly 3 years ago as I had no quality of life. It’s been a long road and its only the last 10 months that I started to stabilise when I started NDT (I had been self treating on t3 only before that). It’s only now that I am well through mown efforts that my latest GP and private Endo can see this due to my rational argument and photographic evidence of how I looked before, that I am being supported in my current treatment (I now take NDT and T3 – with the hope of transitioning fully onto NDT). I am now 41 and after a decade of severe and debilitating symptoms I am starting to rebuild my life.
It’s a disgrace what is happening – it has to stop.
Dr Kendrick, I admire you enormously, you have such courage and integrity. So far as I am aware, I have no thyroid issues. But I do a lot of reading of health related ‘stuff’ – my husband says I’m obsessed, maybe I am – but I do know that ‘mainstream medicine’ has lost its way, And the thyroid issue is so much more complex and profound than the ‘experts’ would have us believe.
It is so good to see that somebody is questioning dogma – the ‘top down’ approach, where medicine has become almost like a tick box exercise. The whole person has been lost somewhere – the whole picture overlooked. I applaud you for your open-mindedness, your willingness to question and challenge the status quo, you being you, honest, humorous, straight down the line. You are so refreshing to read!
This article made me smile – and made me cry. I felt heard. Thank you so much Dr Kendrick.
I worked for the NHS for 16 years. I was a Critical Care Nurse Specialist until thyroid disease and the lack of appropriate treatment / care to address my symptoms meant I effectively turned into a sloth. I lost my job due to incapacity. I became house / bed bound – a shadow of my former self. Over the last 8 years I have seen 9 GP’s and 4 endocrinologists, most dismissed me as depressed with CFS, and making it up – even though I had obvious physical symptoms to the contrary – its the blood tests that were believed – ‘computer says no’.
I took matters into my own hands nearly 3 years ago as I had virtually no quality of life. Its been a long road and it’s only the last 10 months that I started to stabilise when I started NDT (I had been self treating on t3 only before that). It’s only now that I am well through my own efforts, that my latest GP and private Endo can see this – due to my rational argument and photographic evidence of how I looked before. So, I am now being supported with my current treatment / self management (I now take NDT and T3 – with the hope of transitioning fully onto NDT in the near future).
I am now 41 and after a decade of severe and debilitating symptoms I am starting to rebuild my life. It’s a disgrace what is happening – and it has to stop.
It does have to stop. Not entirely sure how to stop it though.
The fact that you are speaking out for us when so many Doctors don’t is massive (they don’t seem to look at the facts or take a common sense approach – when the evidence is in fact staring them in the face – assessment of physical symptoms – which is ‘the art of medicine!’). It does make me wonder how doctors can enjoy their job when they are failing so many and it seems to be about ticking boxes…
I can’t thank you enough for raising awareness of our plight – if you were in front of me I would hug you. Sincere, heartfelt thanks Dr Kendrick.
Quite simply – a body without T3 is unable to function – and you die! Is there a master plan out there?
I have been looking into how to stop this criminality for the past 10 years Malcolm – not found it yet, but I will never give up – but I do believe that the only way to put a stop to it is to take it to the Courts.
In another area of my life I have witnessed a change for the good when enough ordinary people made enough noise by writing to the relevant bodies and getting repeated press coverage. Eventually the powers that be were forced to sit up and take notice and do the right thing.
In a weeks time some of us will have brand new, bright eyed and bushy tailed MPs. I for one will make sure that an email from me will be one of the first things my new MP, whoever it is, will have to look in to on my behalf!
The reality of testing is that if TSH is inside the spurious range, nothing else gets tested at all, not T4, not nothing!!
Dr Kendrick,
Thank you so much for your article. I wondered if you could clear something up for me. Among the “thyroid community” there is an oft repeated “fact” that during medical training students are given no more than an hour of lectures on the whole thyroid system, how it functions, how it goes wrong and how it is treated. Is there any truth in this? Or is it an urban myth?
Sorry, don’t know. I would suspect it probably is true.
My grandson is training to be a doctor. You are about right on Thyroid Training.. I asked him!
And there was me thinking doctors in training got at least a couple of ‘A’ level equiv. modules. Much appears to have changed for the worse… in particular integrity!
Some years ago, having been diagnosed as hypothyroid for sometime and prescribed levothyroxine, I asked my GP for a referral to Dr Skinner. She hadn’t heard of him and said she would get back to me. When I got home 10 minutes later she was on the phone to tell me she would not refer me to him. Although she didn’t explain exactly why, the implication in the conversation was that he was dangerous and she would be in trouble if she referred me. There was no alternative to talking the levothyroxine.
Is this the way to ‘facilitate’ that constructive and receptive dialogue between doctor and patient?
The guidelines for interpretation of thyroid tests here: pages12 – 15
http://www.acb.org.uk/docs/default-source/committees/scientific/guidelines/acb/acb-mri-recommendations-a4-computer.pdf?sfvrsn=2
Honestly, I don’t know how you GP’s can keep up with the vast amount of information available to you.
Oh God love you! Thank heavens! Finally finally finally finally a doctor who ‘gets it’. I had my thyroid surgically removed (for graves, hashis and cancer, no other choice although misdiagnosed for over a decade and told I was crackers) and felt like DEATH on LT4 only and on LT4 and T3 combo – five stone weight gain, hair loss, constipation, constant tinnitus, internal shivering, brain fog, the loss of a £100k a year career, couldn’t climb a flight of stairs, gained weight on 1,200 calories a day, unable to think, crazy mood swings, chronic iron deficency anaemia, high blood sugar, total sex hormone derangement (they offered to remove my womb at the age of 37!) – the sorry, pitiful, disgraceful list goes on and on. Most docs conducted consultations looking at my results on the screen, not even listening to me. Computer says No! Despair was my constant companion.
I’m now self medicating NDT (with my current consultant endos blessing, her exact words ‘clever girl, its the only thing that works in patients like you but I’d lose my job if I prescribed it now, I used to’) and lo and behold, I’m better. My GP’s thoughts? I have depressive illness and ‘bi polar 2’ because on synthetic meds my bloods were ‘normal’ (you don’t mention the madness that brought ‘normal’ blood ranges into being, which is akin to going to bed at 6ft tall and waking up a midget but if your new ‘height’ is withing ‘normal’ parameters you’re ‘cured’! You say to your doctor, but I didn’t used to be a midget, I used to be tall, and he says ‘your height is normal, have some anti depressants’ – it’s bonkers). I have to buy my own drugs, I’m on my own, and the doctor who believes me can’t help me. This is insane – her exact words, my previous endo said the same and fled to Australia. And yes, for YEARS SSRIs were chucked at me like smarties (I never took them) even though I insisted that I was NOT depressed and that there was ‘something else wrong with me’ – turns out I was right, but now I have a history of ‘mental illness’ dogging me … talk about exasperation, I give them peer reviewed papers from the Lancet on Graves disease, they offer me SSRIs.
Surely doctors have it in their wit to agitate for some kind of change? Not that I don’t appreciate your blog, but what are we going to do about it? That Telegraph article you mention was mobbed by doctors calling us hysterics. It’s unjust, sexist, and worse, an insult to my (now restored) intelligence. What can we do to change it Malcolm?
I am a bit confused. I see that you are able to “self-medicate” so obviously the drug you need is available in the UK. Are you able to buy it without a prescription? If you saw a physician privately, not under the NHS, would that physician not be able to treat you with the drug that you need? As you see, I don’t understand the ins-and-outs of the NHS system, but would like to understand more as it appears the powers-that-be in the U.S. want us to be ruled by a united medical establishment at the federal level too. Entrepreneurial types who wanted to work on their own used to choose medicine as a career – now the field is full of people who consider it as just another job.
The people who self-medicate do so by buying drugs over the internet from countries which have looser regulations about supplying medication without prescription e.g. Thailand and Mexico. It is not possible to buy prescription-only medication in the UK without a prescription (it is illegal to sell it.)
I too am thyroidless like “girlscoutuk” and suffered for years on T4 only It seems that EVERYBODY who has no thyroid is destined to remain ill for the rest of your life on T4 only.
I too would have been unable to earn a living, but, fortunately I retired several years beforehand.
The answer to NDT in UK is that you stand more chance of winning £millions in the national lottery than to start getting it free on the NHS. Those who already receive it are being forced to convert to T4. In some areas of the UK, NDT is not only “unlicensed”, it is BANNED from use altogether.
I get my NDT from internet. It is LEGAL to buy and use the product for personal use in the UK
UK doctors, private or NHS are bound by the same rules and the kangaroo court that is the GMC so they could prescribe it (some do) but most would then but hauled over the coals and struck off.
Under MRHA rules (the drug regulatory body) I can legally import drugs for my own use without prescription, so I do that with my endo’s blessing, but she won’t risk prescribing (anymore, she tells me she did extensively for a long time and readily admits the current system is ‘insane’).
If you are in the US I’d join a group like STTM or Yahoo! Thyroidless and they will provide you with a list of doctors willing to prescribe, you are fortunate there as NDs and Chiropractors can also prescribe. It’s actually easier in the US than it is here. The Holtorf medical group also might be a place to start (although I hear the man himself is better than his minions).
Hope that answers your question.
Natural Desiccated Porcine Thyroid Extract has been used for well over 100 years. It can be bought from online pharmacies from outside of the UK, but you need either a NHS or private prescription to buy it in the UK. We have the answers in our articles in Thyroid Patient Advocacy http://www.tpauk.com and if you ask such questions there, you will get answers as we are trying our best to cover all such questions. It is perfectly legal to buy NDT online and the MHRA have stated that doctors can prescribe it, but please do not expect a doctor to prescribe it for you as a matter of course. Because it has never required a license in the UK (it was ‘grandfathered ‘ in’ as being a medication that had been proved to be safe and effective (unlike levothyroxine) which DID require to go through the Drugs Licensing Procedure. Because it remains unlicensed however, it is up to individual doctors whether they will, or will not prescribe it. Many are reluctant, because if anything goes wrong and their patient tries to sue them, their medical insurance does not cover them. To read some FACTS about NDT – see here http://www.tpauk.com/forum/resources/facts-about-natural-thyroid-extract.2062/ – especially if you are a doctor who believes he knows the facts, but probably actually doesn’t – especially if you have allowed yourself to be brain-washed by the Royal College of Physicians and the British Thyroid Association – who don’t WANT you to know the true facts.
Thank you so much for this.
The problem often for sick people is they don’t have the energy to stand up and fight for themselves!
I know this. Been there – got the t-shirt. Didn’t have the energy to top myself either. Instead I spent years trying to sort out my ‘psychological’ problems until the penny dropped and I realised it was hormonal. The experience was not wasted, however, as it made me realise how much undeserved respect we bestow to established ‘authorities’ and how much advantage is taken of this weakness and I read entries on the TPAUK forum that convince me that many subscribers know a deal more about endocrinology than their physicians. Among others, politicians, the judiciary, members of scientific bodies, etc, are often referred to as Big Wheels because they go round in circles and should be appraised with as much scepticism as any other strangers. The larger the body, the less important each constituent ‘customer/patient’ becomes in the overall scheme. The medical profession is a business run by accountants and the GMC is probably listed in Kelly’s as a PLC, as is the Prime Minister and your local police force. My experience taught me to trust my own instincts, choose my battles wisely and never to abdicate my own autonomy. Whatever the fine words we are, in effect, at war with the representatives of a society who have been entrusted with our well-being and yet, as result of incompetence or a separate agenda, treat us as disposable and mere collateral damage and you can’t win wars by going through channels. In war we must fend for ourselves and give thanks to the few like Drs Kendrick, Skinner et al, who have the integrity to use their God given wits in the interests of scientiic accuracy and common sense.
“The RCP’s guidance is based on the opinion of an expert panel which was temporarily formed for this purpose. The evidence they used to form their individual opinions has not been collated and therefore the RCP cannot provide any evidence list” I enjoyed that enormously.
It reminds me of the “pools panel”: when football games had been cancelled because of bad weather, those worthies would decide what the results would have been had the games been played. They too were an “expert panel” and they too didn’t explain themselves. Strange company the RCP is keeping.
Ahhh, I remember the “Pools panel”. No football games being played so the experts guessed the likely results. Excellent analogy. In future I will view all expert panels with a more discerning eye.
No feedback loop for death – awesome! As a pharmacist in NZ I see some of my patients in the exact same boat. It’s amazing how resourceful they can be to get some Thyroid Armour from the US or Mexico… Keep up the great work Malcolm!
Excellent piece on this long running and totally inexplicable scandal. I’ve been following its unchanging course for years – a parade of people testifying to their despair and how T3 lifted it to which the likes of Professor Weetman declare – no change.
Doctor Skinner is exonerated by the GMC on a charging of prescribing T3 – surely that should prompt a rethink – no change
. Research throws up evidence of faulty genes involved in converting T4 to T3 – no change. Most recently the appalling story of a woman who had T3 formally prescribed for her chronically sick child who was then charged with child cruelty despite evidence that the child had improved greatly. The charge was thrown out of court without even hearing the evidence for the defence – no change.
Bleeding fists hammering on granite.
Why so indifferent if you are a clinician?. Why so incurious if you are a scientific researcher? Both serious failings but as far as I can tell there is no commercial interest lurking there just a climate of fear. There are doctors who do prescribe T3 to patients but they beg you not to give their name or refuse to answer journalist’s calls.I found one who was prepared to be quoted but he wouldn’t act as an expert witness.
That was understandable. Harder to understand are doctors who reported Dr Skinner to the GMC for successfully treating a patient they had been unable to help for years. He was the only doctor who actually had leave from the GMC to continue prescribing because they could find no fault with his clinical approach.
If anyone is interested in following this further and as Malcolm says there are so many Kafkaesque twists and turns, here are links to a couple of my recent stories
http://www.dailymail.co.uk/health/article-2734215/Cold-hands-Always-tired-It-hidden-thyroid-problem-doctors-refuse-treat.html
http://www.dailymail.co.uk/health/article-2819347/A-cure-thyroid-problems-NHS-ignores-quack-doctor-s-poison-Mary-gave-daughter-hormones-prescribed-crippling-tiredness-police-arrested-child-cruelty.html
Thanks to you also Jerome for raising awareness in the national press. I know that ‘we’ are very grateful. How much longer can this crazy situation be allowed to continue?!
Thank you Jerome. For others who didn’t know Dr Skinner who had invited every Endocrinologist in the UK to a meeting to discuss ‘evidence based’ medicine and the parlous state of affairs of patients refused treatment or undiagnosed due to TSH. The last withdrew the day before the meeting.
3 Excerpts from the World Thyroid Register begun by Dr S.
The same pattern followed all efforts including further conferences, meetings and letters by Dr Skinner to have a public discussion with medical colleagues to address this shortfall in the care of this particular group of patients.
The Royal Society of Medicine’s reply to Dr Skinner’s repeated request for a conference to address this problem was to organise a conference on thyroid disease and refuse Dr Skinner’s request to speak on his experience in diagnosis and treatment of hypothyroidism. The only Royal College which sent a representative to speak at the World Thyroid Forum organised by Dr Skinner in 2012 was from the Royal College of Obstetrics and Gynaecology to speak on fertility problems in hypothyroid patients.
2. I noted in the Telegraph and the Daily Mail a small paragraph describing a patient who had been undiagnosed with hypothyroidism for 6 years. They clearly do not realise that this is the least of it and I have used this opportunity to write to these newspaper highlighting the need to increase media awareness regarding this serious shortfall in patient care in the United Kingdom. You will find this under the Letters section. (added January 2011)”
http://www.worldthyroidregister.com/Letters.html
To return to the bunch of baloney allegations……….
a colleague calculated his ‘odds’ of a doctor appearing before the GMC was “10,000,000 to 1.
Thus we must conclude that the congestion of complaints during the last three months are not random events. I leave you to draw any conclusions from this analysis”
3. This is more critical than ever as a number of Practitioners continue to adhere to a proposition advanced by the Association of Clinical Biochemists and two Royal Colleges that hypothyroidism should not be diagnosed unless the TSH value is more than 10 miu/L. I believe that this is a seriously flawed position; it is statistically wayward given the average TSH value and the standard error of this average and thus a TSH value of 10 miu/L will be an unacceptably high number of standard errors from the average value; secondly it is hardly commensurate with clinical experience culled over many years of clinical practice where few Practitioners will not have encountered unequivocally hypothyroid patients who had a TSH level of, say 7 miu/L, who have returned to optimal health on thyroid replacement therapy.
http://www.worldthyroidregister.com/Fitness-to-Practice.html
Brilliant Jerome, thank you for publicizing this and other articles.
Dear Dr. Kendrick, an insightful post as always but unfortunately your estimate of the size of the problem is grossly understated. In the allopathic world almost every thyroid patient is subjected to an inferior standard of treatment which leaves many of us sick, makes us sicker, destroys our relationships with our loved ones, destroys our careers and too often destroys our lives.
Every thyroid patient faces, and has always faced, the same two universal hurdles to recovering their health. The first is a timely and accurate diagnosis and the second is adequate treatment. The Thyroid Function Tests have become an almost impassable barrier to a timely diagnosis because they are routinely used in an incorrect manner. Calling the reference range the ‘normal range’ is a complete misnomer because it implies a degree of accuracy the tests cannot support. Doctors treat the reference range with a football goalpost mentality, any result between the uprights and the patient is normal, end of story. A result within the reference range cannot guarantee normality either in terms of a diagnosis nor especially in terms of titrating the dose. The only real accuracy the TSH test has is at the extremes and even then it is questionable. As Dr. Derry and many others have noted, the TSH can lag the clinical presentation of symptoms by years but doctors don’t look at the patient anymore, they treat the test. Basing the diagnosis only on the biochemical tests is a fools errand if there ever was one.
The treatment side is just as absurd with the insistence that one drug works for everyone and if the patient still complains, it must be the patient’s fault, brilliant, its somatoform disorder. This concept came from a UK physician. How can I describe his intellect? To paraphrase Sir Winston Churchill, “An empty cab pulled up to number 10 Downing and out stepped this doctor and apparently most of endocrinology was sitting next to him.” The sheer arrogance of the one drug fits all proposition is unbelievable. In the real world what we see with thyroid patients is everything from T4 monotherapy, which does work for some, to T4 with some T3 added, NDT, NDT with either some T4 or T3 added and some do not recover their health until they take T3 only. The ratio of T4 to T3 that works for thyroid patients can vary considerably.
There are only two primary rules in the thyroid patient world.
Rule # 1 Treat the patient not the lab test.
Rule #2 There is no one size fits all, period, each patient is unique.
Unfortunately most allopathic doctors today are more of a roadblock than a solution. This is because of their ignorance of the science, their lack of almost any capacity for critical thinking, their acceptance of dogmatic assumptions, their inability to see the human being standing in front of them and the herd mentality of medicine. Endocrinology’s major accomplishment over the last 75 years is that it has made itself irrelevant to millions of thyroid patients.
One is left to wonder how long this insanity will continue. PR Lundy
An excellent summation of the current situation.
Malcolm, if you haven’t read it I think you’d really appreciate my own endo’s latest book: http://www.amazon.com/Functional-Approach-Hypothyroidism-Traditional-Alternative/dp/1578263875/ref=sr_1_sc_1?ie=UTF8&qid=1430528473&sr=8-1-spell&keywords=kenenth+blanchard+thyroid.
He started experimenting with T3 + T4 for hypothyroidism many years ago, initially on himself. He’s taken a thoroughly empirical approach, trying many, many variations, and has, I believe, really nailed how to do this effectively. His book is full of insights he’s gained into both diagnosis and treatment, including the need for seasonal dose variation, the great benefit of compounded time-release T3 or thyroid extract preparations, and optimal T3/T4 dose ratios (much lower than Armour for most people).
I’m absolutely sure you will appreciate his sardonic humor as well (don’t miss his description of the “quadruple blind study”). If there’s a medical field with worse research than cholesterol and CHD, it must be hypothyroidism, as he mercilessly explains. BTW, he loves an opportunity to speak with other docs about his methods. He’s begged the academic thyroid big shots in Boston to send a junior doc to observe his practice, but you can imagine the response (hint: crickets).
I can testify to the effectiveness of his methods. I am one of those whose conventional endo told me to see a shrink because I was depressed and miserable with a “perfect” TSH. Thank goodness I found him.
Great post. I hope many people benefit.
Bill, I’m glad Dr Blanchard’s method has helped you. However, he does have some strange ideas about monotherapy with T3, which were refuted by the late Dr John Lowe. Dr Blanchard’s method does not work for everyone, but then that is the message of many comments here: there is no one-size-fits-all treatment for hypothyroidism.
All the best.
Helen
Helen, Dr. Blanchard does believe that a few people might, for whatever reason, do best on a high T3 protocol, just as he’s found that a few seem just fine on T4 monotherapy. But the vast majority of people he has seen over the decades seem to do best on T3 dose=~1.5% T4 dose. He does not see people thrive on thyroid extract (e.g. Armor) monotherapy at ~20% T3 let alone 100% T3. Those who’ve come in to him on 100% T3 are all very sick and fragile and challenging to stabilize, as he explains in his book. But as he says though he loses very, very few patients to followup perhaps those few that need very high T3 drift off to other docs who use that approach.
Dr. B. always insists on individual variability, which *cannot* be predicted reliably with lab tests. In fact he does not even test T3 levels. He never found they helped guide treatment.That is why his basic approach is empirical with each patient, starting with the protocol best on average but by no means restricted to that, with patient reports of well being the primary guide, along with simple TSH and free T4 levels to guard against gross overdose or underdose.
What a very interesting article. I had a total thyroidectomy in 2009 and have been on Levothyroxine eversince and will continue on this for the rest of my life!! However it is not easy keeping to a dosage that works. Last year i was visiting my endocrinologist monthly for blood tests and constantly changing medication levels to finally settle on 125mg and 150mg on alternate days. I cannot say i feel any better for it. I am constantly exhausted, after a good nights sleep i still wake up feeling exhausted. If i sit still for more than 30mins i always fall asleep, my moods were erratic (so now on lowest dose of Prozac), sometimes even walking and or taking one flight of stairs makes my legs feel like they are stuck in cement and weigh a ton!! I have no enthusiasm for anything and no energy!! Sometimes i think well this is it for life so just suck it up and get on with it, but its hard to deal with extreme exhaustion on a daily basis. Off fora blood test review next week to see if medication still at correct level – not going to trust these tests now!! 😣
Is levothyroxine even the right treatment for you?!
No idea Karen – just have to go by what the specialists say and to be hobest i find it all so confusing. Fed up of feeling exhausted all the time though!! Cx
I can’t speak for Malcolm, but you DO NOT need to be on that drug for the rest of your life if it blatantly is not working. Fire your doctor and get another. You are exactly where I was when I had my thyroid removed, I’m now on NDT and doing much, much, much better.
cadent04,
WITHOUT A THYROID GLAND YOU WILL NEVER GET WELL ON LEVOTHYROXINE!!!
Get some NDT, Natural Desiccated Thyroid and chuck the rest of your levo rubbish down the toilet where it belongs.
And for the sake of whoever you believe to be Holy, chuck the Prozac in the pan with the levo.
You will start to get better IMMEDIATELY you’re on NDT.
Suggest you start on 2 tablets a day.
Where can I get it and is it safe? Tried to get it via Dr 5 years ago with no success
Agreed John, putting a TT patient on levo only is abuse, particularly if the poor bugger is then held hostage to the TSH test. I felt (and looked) as if I was dying on that stuff. A year on NDT and people are starting to say ‘you look well’ – more importantly I’m starting to feel it. It’s taken a while for my body to start reversing all the damage, but at least I’m not a braindead blob covered in mucin (mucin is disgusting hard fatty tissue under the skin and around all your organs, not a pretty sight!). I have an IQ of 137 and on levo I could not even watch a film on TV as I’d forget the plot half way through. An Eng Lit graduate, i could not read a book (well reading every page five times gets a little boring), I could not breathe, walk, do anything and according to medicine I was ‘cured’ and must be ‘mentally ill’. cadent04, please, please, please get another doctor and watch this http://sick2death.com/ There is hope, but in all likelihood, unless you hit on a Malcolm, and doctor’s like him are rarer than hen’s teeth, then no one is coming to the rescue, alas you must ‘pick up your cross and walk’ … We’ll all help, but you must rescue yourself.
With NDT, as with all thyroxine options, you should start on a low dose and build up slowly and steadily – you cannot state “start on 2 tablets a day” – that is too vague – what brand, what dose etc? There are many different brands out there and many different dose tablets. Different brands use different tablet bindings, so one brand may work well for one person but not so well for another. Be prepared for trial and error. Once you have chosen your brand, start low and build up slowly – you need to give your body time to adjust to each dose before you change your dose – you need to feel your symptoms and react to them, ie if there’s no response = increase the dose, but keep increasing the dose until you feel better, and then go beyond that until you start to feel hyper = back off your dose again until you feel right. There is no overnight fix but it is possible to feel an immediate improvement – I know I did when I switched to NDT – I felt better within 24 hours!
Chrissie Biggs, a THYROIDECTOMY patient CANNOT start on a low dose, you’ll kill them. The patient we were talking to has NO thyroid. That’s why John told her to start on 2 grains. 1 – 2 grains is the starting dose for a TT patient. Sorry to be firm, but I see this advice mess TT patients up very badly. Those who are ‘just’ hypO start on a very low dose, those of us with no thyroid, start a little higher as the hypO symptoms can be very vicious very quickly.
Not invariably the case. Some of us do convert well. But for those who don’t, and need T3 or NDT, it must be made available. Not should, MUST.
cadent04, there is a reason that people who have had a TT quite often do not do well on T4 monotherapy and that is not enough T3 in the system. Unfortunately allopathic doctors, because of their ignorance, are scared of T3 yet we would perish without it. If you can get a full copy I suggest this study by Drs. Hoermann, Midgley, Dietrich and Larisch.
http://www.ncbi.nlm.nih.gov/pubmed/25750078
Adding some T3 and finding the right balance of T4/T3 for your body would probably be much more effective than the Prozac. Respectfully, PR Lundy
The authors, Drs. Hoermann, Midgley, Dietrich, are advisers to Thyroid UK. The full paper may be obtained by contacting Thyroid UK here:
http://www.thyroiduk.org.uk/tuk/About_Us/contact_us.html
You would think; given the large number of people who continue to suffer from hypothyroid symptoms after treatment with Levothroxine and the numerous people who can confirm that T3 treatment has proven to be successful for them, that further research would be taken into the effects of T3. I am 32, i have suffered from hypothyroidism since my mid twenties and quite honestly, I feel fifty years older than I am. I have marks around my mouth and eyes which look like teabags stains! I cannot easily walk up and down stairs, my hips back, knees, hands and sometimes even my elbows ache, I am tired and cannot go out and enjoy a social life with my friends, my mind is foggy and my memory is barely existent. All this is amidst a myriad of other symptoms. I just think that it is so cruel to withold healthcare from those who are suffering because this is effectively the result and as usual, it is one that would predominantly affect women. I find that I am forced to go private in order to be listened to and i can hardly afford it. I would say its a great failing of the NHS but i think it would be more accurate to say that it is a great flailing NHS, the result of government failure.
Hello, other Helen! Your story is typical of many, including my own, though I’ve had some improvement on T3 alone. I have other medical problems, which complicate the treatment picture and, like so many here, I’m trying to figure it all out with help from other patients and occasional private consultations – no NHS help for me either.
I think your comment about hypothyroidism affecting mainly women is an important one that is not often acknowledged, even on health forums. There is a great deal of residual sexism in the medical profession, as in society, and this cannot help but impact on the diagnosis and treatment of thyroid disorders.
I totally agree with the remarks about sexism in the medical profession. And I wouldn’t describe it as “residual” either. Try getting help for severe, disabling period pains in the UK. It just never happened for me. I got prescribed voltarol once which felt like I had swallowed red-hot rocks. When I told my doctor this I got nothing else to replace it. Getting endometriosis diagnosed took me 12 years. And then was promptly ignored for another couple of years. Even after that the attempts at treatment were feeble, half-hearted and useless.
So, when I developed hypothyroidism I didn’t bang my head against a brick wall for terribly long. I was just glad when I found out that paying for my own blood tests and treatment without the interference of a doctor is actually possible. (For the moment at least – I’m sure things will change for the worse sooner rather than later.)
It is so sexist it’s infuriating. We are all just bloody women moaning about our bloody hormones. In fact I’m surprised how little endocrinologists know about hormones seeing as women are an orchestra of hormones playing a symphony … I will never take synthetic hormones again, and i think ten years on the pill is where my trouble started …when the menopause arrives I shall treat that myself in the same way as I’ve treated my (lack of) thyroid, with BHRT … and they can all whistle! It’s a national scandal how women are disregarded in medicine, in fact a big financial war is being waged on women’s bodies … thyroidectomy is the new treatment for ‘hysteria’ in my view, certainly renders passive and quiet (for a while!).
Holy shmoly! A doctor with both a brain and a soul? Whatever next? Malcolm (forgive the familiarity, I feel I already recognise you as a kindred, if not fiercely kind, spirit) I have not read such a succinct exposition of the cause of the nightmare that patients who are suffering in the most complete way from disordered thyroid-thyroxine functioning, as this.
As a psychotherapist, I found your public summation of the antidepressant paradox to be like a breath of fresh air through a stagnant room – particularly so since it comes from a member of what is becoming an increasingly disliked, hated even, and mistrusted species – Homo Medicus.
As a patient who is fighting against the medical establishment to be heard, respected and worked with concerning my own disordered thyroxine pathways your exposition of the unfathomable, psychotic-seeming stance taken by the medical establishment with regard to the unholy nuptial alliance between Levothyroxine prescribing and TSH levels, having firstly divorced symptomatology from the relationship as polygamous, was like taking an almost desperate lungful of oxygen after being slowly suffocated by medical intransigence for the last few years.
What you have given, in time, effort, intelligence and humanity to me (and I would guess to many others like me) is a glimmer of hope that there may be other specimens of Homo Medicus who have similar attributes, sufficient to begin to question the imposed and unfathomable status quo. That is, rather than treat people with dismissive disregard to their subjective symptoms, citing “Evidence Based” practice as the mantra against criticism or question (regardless of the fact there is scant evidence upon which to substantiate their indefensible position) and worse, trying to terrify them into submission with the dire warnings of inducing, for example, atrial fibrillation through needless suppression of TSH levels (despite scant evidence for and similar evidence to the contrary), there is a body of doctors who have the intelligence and cojones (gender aside) to question the sheer madness of such militant unconsciousness.
Neither well done nor thank you will cut it.
Is there any evidence or case studies where those diagnosed with hypothyroidism have been able to wean themselves off medication? Am thinking of those who have been placed on levothyroxine originally because they are slightly out of normal TSH range but may not have needed it. Too late to go back once TSH levels rise? That’s another issue that is worth exploring – what is ‘normal’?
If you have been diagnosed as suffering with hypothyroidism, you have to take thyroid hormone replacement for the rest of your life, though there have been cases where people have managed to stop thyroid hormone replacement and get well – though this is rare. If your body doesn’t need thyroid hormone replacement, it will tell you. Too much thyroid hormone will give you symptoms of hyperthyroidism e.g. palpitations, ‘dire rear’, feeling spaced out, hot and agitated etc etc. Anybody suffering such symptoms will, almost certainly, stop the thyroid replacement and those unpleasant symptoms will go away. If you are not already a member, I would recommend joining the Thyroid Patient Advocacy online thyroid forum http://www.tpauk.com/forum where you will get the help and support you are obviously not getting within the NHS.
Thank you so so much for writing and publishing this.
I was refused any treatment for 5 months based solely on a TSH within range. It never got above 4, but when I had private tests done I had thyroglobulin antibodies of over 100 times above range and very low T4 & T3 levels, as well as a swelling in my thyroid and ultrasound evidence of lymphocytic infiltration.
I was paid full sick pay, by the NHS (oh the irony) for 4 months while I was still refused any treatment. 5 months thyroxine would have cost about £8.
I was only able to return to work by buying my own medication. I chose NDT and every single one of the 47 symptoms I had have gone, and never come back.
This whole situation is just horrific. It has made me seriously question whether I want to be involved with an organisation that does this to people.
Yes. We are deemed psychosomatic nutcases.
I wonder how much money has been wasted with me? 8 years off sick, a highly qualified and experienced nurse. I have used thousands in equity just to keep a roof over my head and lost thousands due to loss of earnings. I have been paid incapacity by the Government for years (when I eventually got it – I initially was deemed ‘fit for work’ by ATOS the same month I lost my job in the NHS due to incapacity and had to appeal). All this without even considering the years of unnecessary suffering due to negligent and substandard care / treatment – and all of it preventable.
It’s the biggest scandal of the modern NHS. How much longer can this situation be ignored?
I have been a nurse for nearly 40 years, due to ill health I can no longer work. While researching to try to find the cause of my illness I have come across the terrible way patients are treated. I never knew there was this problem with hypothyroidism and came to realise this was my problem. Turned away again and again from my GP told my bloods were fine! I felt I couldn’t blame him, he is blinkered in the same way I was.
Well I’ve had it with the NHS, I’ve worked and done my best for it all this time. In my hour of need I was abandoned!
I listened to Dr Kendrick at the TPA (tpauk.com) conference in Harrogate last week, amazing, but he has so much info to convey it was difficult for my hypo brain to keep up!
It is amazing to have a Doc on our side! I’m sure you must be aware of Jerome Burn (comment above) you two together could be a formidable force!
I eventually managed to get a trial of levothyroxine from my GP ( he says Fibro I say Hypo) when I said that, had my symptoms occurred in the 1970s when I first started nurse training, before TSH, based on my symptoms alone I would have been diagnosed hypothyroid! He is now amazed how the thyroxine has helped me!
I have happily let my nursing registration lapse, I no longer want to work in the NHS even if my health returns. After 8 years of illness and gradual decline I fear I will never return to full health!
Thank you Dr Kendrick you are amazing, you believe us!
This is another example of the inferior standard of treatment thyroid patients are subjected to. Allopathic doctors do not routinely order TPO or TG antibody tests even though Hashimoto’s is the most common form of thyroid problem today. They don’t have ‘a pill for that ill’ so they let the thyroid gland be destroyed and then put you on T4 monotherapy. A doctor lets one of the most important glands in the body be destroyed, outrageous! They know nothing of nutrition and they practice 15-20 years behind the science. They are probably clueless who Dr. Alessio Fasano is. PR Lundy
Dear Dr. Kendrick
Thank you for the excellent article.
I would like to add that often hypothyroidism is caused by the autoimmune disease Hashimotos.
If this is the case, then even giving both T3 and T4 may not be enough.
The patient will also need to modify their diet to decrease inflammation and the attack on the thyroid gland before they see an improvement in their symptoms.
Thank you very much for your open-mindedness.
Kathleen Prew
I followed a link from one of the earlier postings (sorry, can’t find it to acknowledge) and was totally horrified by the story I read, where a teenager was placed in care after her mother went to Belgium to see an Endocrinologist, and subsequently administered hormones (that made the child better). She was arrested, charged with administering poison the child taken into care, placed in jail for refusing to stop attempting to see her daughter, subsequently the charges were dismissed by the judge – but the child is still in care. Outrageous! Please also sign this petition.
https://www.change.org/p/alistair-neill-head-of-herefordshire-council-return-mary-kidson-s-daughter-back-home-to-her-care
Yes, Jerome, the journalist who covered that story in the national press is on this thread. It’s also taken months and months after she was acquitted to get her daughter back out of care.
Flashback to me seven years ago. Cold, fat, exhausted, climbing upstairs to bed at 8pm on my hands and knees. My TSH readings were just a fraction beneath the level that would confirm hypothyroidism so I was sent home to put up with it. I read a few books, among them Dr Skinner’s. (God forbid. I must have Munchausens).
At the time Dr Skinner had been denied continuation of his BMA status as specialist in this field and had regained access to the holy diocese as a specialist in virology. I told my GP that Dr Skinner was a specialist, omitting to say what in, and he wrote a referral letter for me.
I drove 130 miles to see Dr Skinner in his old-fashioned kind of vault in a back street in Birmingham. What I received from him reminded me of how GPs behaved when I was a child in the 60s. He took my temperature (under 36C), looked at my fingernails, palpated my thyroid. What’s this? A clinical diagnosis? He told me I had hypothyroidism, charged me £150 (worth it), and wrote to my GP so that I could receive thyroxine on the NHS.
Initially thyroxine changed my life in that my day was no longer over by 4.30pm. I could walk the dog without hanging onto farm gates, gasping for breath. But do I feel well? Not really. If I wake up too early I still feel like cr*p all day. On the occasional rare day (I mean about once a year) I feel energy in my limbs and realise what life could have been like for me and could still be like for me if the medical world was there to actually help people. It’s an isolating condition – and of course, as we know, prolonged underactivity of the thyroid leads to any number of other illnesses that may shorten our lives.
Anyway, here’s a thing with TSH. Every 12 months I have a blood test. The TSH results are exactly the same as they were before I started taking Levothyroxine. How does that work then? Don’t think I haven’t asked. I had a blood test last week and my GP called me. I asked how they could justify taking blood tests seriously given these results and naturally he didn’t give me an answer. He said, “I’m actually calling because your cholesterol is very high. Please come in and we can discuss it.” Er, again? No thanks. And actually did he know the relationship between hypothyroidism and raised cholesterol? He doesn’t need to. He’s got drugs.
Dr Skinner helped hundreds of people (mainly women) to regain some kind of life. He was brave enough to stand up to the establishment and fight his corner and he didn’t let them stop him from practising, even though they tried.
Dr Kendrick, thank you – as always.
Regarding a certain endocrinologist who refers to us as having somatization disorders, he gave a talk in 2013 to the American Thyroid Association – this one :
At 01:33 he uses a photograph of a woman before and after treatment with levothyroxine. The photograph he used came from the BMJ in an edition published in 1892 – only the first page of a pdf is available :
http://www.bmj.com/content/2/1652/449
Unfortunately for him, levothyroxine wasn’t invented until several decades after 1892. Instead, the patient involved would have been treated with thyroid tissue from an animal (a sheep I think) – just like NDT is made from the thyroid tissue of a pig now. So, he uses a photograph of a woman treated with natural thyroid and claims it as a success for levothyroxine. Being rather suspicious, I suspect this was done deliberately and with unholy glee.
Well I’ve just listened to this and I wish I could ask this endocrinologist why he thinks we have all become problem patients! If my T4 treatment had worked I would not be here on the internet looking for answers and I would not be a problem patient.
I went away with my little box of white pills absolutely delighted after a doctor had pronounced “We will turn you into a new woman”. How lovely I thought, just the ticket, a new lease of life at 64! Thrilled to bits I began taking my medication meticulously every morning as instructed but within 2 weeks I could hardly hold me head up I was so tired and was still cold, constipated and slow. The only change was that I began putting on a huge amount of weight rapidly. Oh, maybe the doctor meant a large pot bellied woman by a new woman? Hadn’t thought of that.
Anyway my point is if treatments made everyone well there would be no difficult patients.
Very interesting indeed. I was prescribed anti depressants about 20 years ago, a year or two before I got hashimotos and thyroid cancer. Total thyroidectomy followed. After finally getting onto whole thyroid about 6 years ago I suddenly became self aware, clear headed, the list of positives could go on. It was a light bulb moment for me….I was finally living life. Having never seen an endocrinologist, last year I decided it would be a good idea to see one. He convinced me I should go back on synthetic thyroid replacement. I reluctantly agreed, and endured the worst three months of my life. The final straw was the suicidal thoughts I had one night, so back to whole thyroid I went. Two weeks into taking whole thyroid, life was getting back on track. A visit to a new endocrinologist (a professor of endocrinology) four months later led to the same thing. Back to my gp, who thankfully said it was only a recommendation to go back to synthroid and that I could stay on whole thyroid if I wanted. That was a terrifying moment for me, and I was contemplating losing my job and my life falling apart. Though my gp admits whole thyroid is not recommended…he knows it works for me. I am so grateful for that and for doctors like you. However, we need more people like you.
Thank you for highlighting the way that people like me, with a defective DI102 gene and severely debilitating symptoms are treated. After 4 years of hell I finally changed GPs and received Levo which helped, after a year I moved to NDT which is much better.
My previous GPs still maintain that there was nothing wrong with me that losing some weight and finishing the menopause wouldn’t cure. I put on over 4 stone in 3 years but this was the cause not a symptom. Being so cold that I had 2 hot water bottles and a polar jacket (for conditions below -7) while my husband was in shorts was all in my imagination. Sleeping 11 to 15 hours a night and waking up exhausted was just my age (mid 40s). Having hormonal migraines that were so bad I couldn’t speak, lasted 7 days and occurred every 14 days were due to my early menopause (even though my fsh etc levels showed I was not menopausal). The complete loss of my eyebrows and bald patches on my head were due to stress.
Basically they treated me as an attention seeking child that just moaned about things and who was obviously comfort eating. When my liver enzymes went out of range (the last 4 months before I moved GPs) they finally had the answer; I was diagnosed as an alcoholic. My word was not to be trusted as I obviously lied about my alcohol intake as that was the source of all my problems. I told them that I wasn’t drinking anything but this was a lie. Thankfully this was the point that I gathered up sufficient will to move doctors.
Yes my condition runs in the family. My Gran, Aunt and cousins all have diagnosed hypothyroid (as ‘borderline’) as our TSH/T4 are ‘normal’. The older generation were diagnosed quickly but my generation has had to fight to be treated. I’m also lucky as I have sufficient funds to go private to get NDT.
who did you go to to get you NDT
Thank you Malcolm. For a doctor still registered with GMC, your publication of this particular blog is a breath of pure fresh air – in a dark, and very dank room. As Desmond Tutu stated: “a room can be dank because you have closed the windows, you’ve closed the curtains. But the sun is shining outside, and the air is fresh outside. In order to get that fresh air, you have to get up and open the window and draw the curtains apart.” You have just done this and hopefully, other caring doctors will take a leaf out of your book and also question why ALL their patients are not getting better from treatment of this disease.
I hope this blog is drawn to the attention of the RCP, the BTA, the GMC and the endocrinology speciality as a whole – but, will it make them do anything about the present status quo they have created, the simple answer is “NO”… and the simple question is “WHY NOT?”
Every medical practitioner should check out ‘Endocrinology Failures Harming Approx. 300,000 UK Patients’ http://www.tpauk.com/forum/resources/endocrinology-failures-harming-approx-300-000-uk-patients-by-sheila-turner.3/ which shows the RCP’s et al., policy statement on the ‘Diagnosing and Management of Primary Hypothyroidism and the BTA’s statement on ‘Armour Thyroid-v-L-thyroxine monotherapy’ have failed to consider at least 52 vital pieces of relevant information, thus causing real harm to hundreds of thousands of UK patients.
Both the RCP and BTA statements are now being used by many local CCG’s, as an excuse not to fund the prescription of natural thyroid extract any more, and also, the prescription of synthetic T3 too. The CCG’s are using those statements as evidence to back up their own statements (many misleading and some, downright wrong).
God help us!
Anthony D Toft (past President of the Royal College of Physicians (RCP)) wrote: “It is extraordinary that more than 100 years since the first description of the treatment of hypothyroidism and the current availability of refined diagnostic tests, debate is continuing about its diagnosis and management“.
Extraordinary indeed! How long do they need?
This statement exemplifies the blinkered attitude which seems to be that medical practitioners know all they need to know about the diagnosis and management of those with symptoms of hypothyroidism, so that further research and debate are unnecessary. [BMJ2003;326:295]
I would like to take this opportunity to thank you Malcolm for speaking on ‘Doctoring Data’ (everybody should buy this book) at our Annual Thyroid Patient Advocacy Conference held last Friday 24 April 2015 in Harrogate. Greatly appreciated, and an eye-opener for many of us.
The history of thyroid function diagnosis and treatment has made sad reading for over 30 years. Ever since TSH became the accepted sole measure for diagnosis, its inadequacies have led to enormous misconceptions of how one should diagnose and resulting miseries for many. However, there is I assure you light at the end of the tunnel. Our group has never believed in the “TSH story”. We’ve published and continue to publish papers which collectively show:
1) Everyone is an individual as regards their “setpoint” for healthy thyroid function. This means that an individual’s TSH, FT4 and FT3 interact uniquely for them to promote health – but the reference range for the general population in all of these parameters is far wider than the individual’s range of values – this can lead to someone with a value within the reference range but outside their setpoint being unwell and requiring treatment.
2) The relationship between TSH and FT4 and FT3 breaks down for thyroid hormone therapy in hypothyroidism. So what is found in health doesn’t apply in illness.
3) The thyroid gland’s output of T4 and T3 and the peripheral body tissues conversion of T4 to T3 are intimately linked together. That is, it isn’t the case that the thyroid simply makes a certain amount of both hormones, and the tissues complete the job by more conversion; there is intimate crosstalk between thyroid and tissues to maintain healthy balance. In treated hypothyroidism especially with those with no thyroid left, this relationship is lost.
4) There is no such thing therefore as a constant proportion of T4 and T3 produced by the thyroid gland in an individual even in health. It responds to body mass, age, and form of treatment. The currently accepted proportion of T3 produced by the thyroid is 20% (i.e. T4/T3 ratio produced is 5/1). This however is a meaningless figure since it depends on the next statement.
5) Individuals have different bail ties to convert T4 to T3 in the tissues. Some are very good – that means the thyroid need not produce as much. Most are average but some are genetically poor converters. When such people lose the thyroid entirely, this means that in those people who are
poor converters, simply giving T4 to them results in inadequate production of T3. Increasing the dose to get good FT3 doesn’t succeed because the more T4 you give, the more reverse T3 is made (which inhibits the action of FT3). In a real sense these people are being poisoned by T4 mono therapy because they can never achieve adequate FT3 that way.
6) Thus the need in these people for T3 supplementation (by NDT or whatever).
7) Though we have published and continue to publish papers on this topic it is like climbing the North Face of the Eiger, while intellectual pygmies throw rocks at one from ledges higher up. You need a good hard hat and determination to go forward.
Intellectual pygmies! John, you are a marvel 😀
Dr. K,
I’ve tried and I’ve tried umpteen times to compose a measured response to this, one without expletives, but it’s nigh-on-impossible – *I* am one of those suffering.
As you may know by now, I have no love of the NHS, and have been called many things – including a Tory! – by all those so desperate to save it, because they won’t listen to my reasons.
I’m actually in two minds as to whether I even believe in the CONCEPT of a Public Health Service because, in my view, it gives the government opportunity to control the populace (as supporting evidence, I always cite the NHS’s continual denial that, for optimum health, one must eat a diet that’s high in grains and starches and low in (saturated) fats, and their continual head-in-the-sand stance on any evidence proposing the opposite to be the truth. Without going too off-topic, there was a story – front page of both the Fail and The Scum, of course – about a mother and daughter whose combined weight was summat like 50 stone. The mother was so obese that she had to use a mobility scooter. I can’t recall where they lived, somewhere up north I think. possibly Manchester or Liverpool, and the Murdoch press were making q big deal of it because they were both in receipt of DLA and, obviously, because it was their fault they were so big, they were benefit scrounging scum. They are both on the waiting list for gastric bypass surgery but, ironically, they’ve both got to shed at least 10% of their current weight to be eligible – something which they’re both finding impossible. What made me so angry was a comment from the daughter “I can’t lose weight because I’m not meant to be thin, everybody has a natural body shape and I’m just naturally big” (probably sightly paraphrased, but the meaning is there). The NHS has made this girl feel like a failure, I wished that I could grab hold of her and tell her that’s bullshit and it’s the NHS that’s wrong, not her, and that it wasn’t her fault. I can only think that the NHS WANTS the country fat, for whatever reason (I can only assume – and I know you can’t have an opinion – because fat people need drugging more – and more often)), if NICE (an ironic acronym if ever there was one) and NHS England/Scotland/Wales/Northern Ireland were more open, honest, impartial, disinterested and unbiased, obviously I’d have less of a problem with it but, obviously, they’re not, so I do.
My own sorry saga begins after I shed a ton of flab myself, after years of struggling to lose it the NHS way. I had to learn a LOT about physiology, biochemistry, and biomechanics. I’m very slightly built and big doesn’t look good on me, and I dropped down to 7.5 stone from more than 4 times that – I felt healthier than I ever did – for about a year, then the fatigue, nausea and abdominal pain I began suffering meant only one thing – gallstones. I struggled through the referral process (not easy when you’re autistic and have the social and communication skills of an average 3-year-old (there are reasons for this but, for brevity’ sake, I won’t elaborate).
Anyways, I got to see a consultant, who sent me for an ultrasound which confirmed my self-diagnosis. He then explained to me that gallstones are caused by consuming a diet containing large amounts of saturated fat and cholesterol and that the recommended treatment was a VLF diet (<20g total fat a day, exactly the same amount I was told was the maximum limit for those who needed to lose large amounts of fat) which would, according to him, cause the gallstones to shrink and either pass out through the bowels or dissolve. This is why, according to him, many overweight and obese people have stones. So, if his explanation was the official NHS explanation (and I've never doubted for a second that it isn't), gallstones are caused by the gallbladder doing what it's designed to do. Is there NOTHING that's not blamed on saturated fat and cholesterol…?! (you just wait, research will suddenly materialise that reveals that the common cold is not caused by a virus after all, but by high cholesterol. And I'm only half-joking). Even though I knew all this was utter bullshit, I was unable to argue, because I was simply too terrified.
This was after many trips to A&E, trying to get someone to take me seriously. I was told there was absolutely nothing wrong with me, I was in perfect health and that I was an attention-seeking liar – I was even 'accused' of Munchausen's on more than one occasion. I actually had a A&E quack yell that at me – not Munchausen's, but the 'attention-seeking liar' accusation because, according to her, autistic people are attention-seeking liars. I staggered back out to the waiting area, and collapsed into a chair, panicking not only because I was in pain, but because it ŵas a Friday night and the noise was overwhelming. She came marching out of her office, and screamed that if I didn't shut up and leave she'd call security. The woman in the chair next to me had leant over to see if there was anything she could do to help, which was when this bitch marched out of her room and yelled at the woman that there was absolutely nothing wrong with me and that I was only doing it for attention. That's when she began yelling at me about calling security – well, she didn't. She called the plod instead. Next thing, I knew, I was being dragged off that chair, and chucked on the floor; one pushed my face into the floor with his size 12, one had his foot in the small of my back, yelling at me "if you try anything stupid, I'll give you a reason to REALLY need to be here!" My arms were dragged behind my back, I was handcuffed, and dragged outside, where I was thrown in the 'cage' in the back of the van, constantly being yelled at (they found the fact that it terrified me hilarious). I was carted off to the local nuthouse, and put under a 28-day section (I'm not able to elaborate on the details of what went on in there – because, well, I simply can't).
I only went back to my own quack again because I couldn't bear the symptoms any longer but, after what I was told by that consultant, plus everything else that's happened, I simply want nothing further to do with the NHS, so I've spent the last 4 years confined to bed, watching the body I worked so hard to get right simply atrophying away, knowing that I'm powerless to do anything about it.
I've always suspected my thyroid has been problematical but, according to my quack, "Computer says 'No'". There's summat up, though, because my neck and chin are extremely swollen now, and the alarming rate I've got bigger (I refuse to believe it's all flab, because of the rate with which it's happened. Even when my weight shot up when I was attempting to lose flab the NHS way, it wasn't this fast). The only person who can help me is me, I'm completely unable to relate to any other human so, even if Dr. Skinner was still here, I'd be unable to go see him (that and the fact I'm on DLA, so I'd not be able to afford to, either).
I'm now being constantly harassed by AMHS as, evidently, not conforming with mainstream 'medicine' obviously means I'm mentally ill (gotta get ADs in me somehow, eh…? I've got 6 prescriptions for risperidone of various strengths in my drawer, none of which will ever be 'cashed' – because I ain't gonna be nobody's zombie! I'm not going to rant on the MHA, because this post is long enough already!
You also mentioned adrenal insufficiency, something my quack insists doesn't exist (I don't think she knows the difference between 'adrenal insufficiency' and 'adrenal fatigue', the latter, of course, not being a recognised condition in mainstream quackery.
(I'd like to clarify that I use the term 'quackery' in the sense that much of what NICE approves, and the NHS dispenses, has no proven health benefits, and can – and does – do a great deal of harm – how is that any different from so called 'alternative medicine'. I don't like the term 'alternative medicine' being applied to things which are BS, such as homeopathy and chiropractic – that's non-mainstream quackery. The term, to me at least, means well, alternative medicine – it's still medicine, it's just an alternative – does that make sense…? It may not be NICE approved but, as NICE seems to be so inextricably linked to Big Pharma, is that SUCH a bad thing…? To me Skinner was an alternative medical doctor – he was qualified, but he simply wanted to offer an alternative to the mainstream which, as you – and anyone who's ever had dealings with endocrinologists re their thyroid knows – the mainstream, very often, is useless – worse than useless in many cases. If you're hyperthyroid, how does destroying the thyroid help…? It simply means you're a slave to Big Pharma forever because, obviously, you're now effectively hypo. I also don't see any harm in looking at thyroid issues from a dietary perspective – thyroids don't just malfunction for no reason, there's always a cause and, in my opinion, iodine is a key player (I know the NHS claims that iodine has no bearing on thyroid function, but how can it deny the fact that it's required for the production of thyroxine…? I'm no doctor, obviously, but it's always seemed logical to me that, if someone is suspected of having hypothyroidism, that the prescription of a low-dose iodine supplement should be the first line of attack, so to speak, because that may be all that's required for rectification. If it was me, I'd suggest adding a good-quality sea salt to the diet, but you're NEVER going to get the NHS to admit that salt's actually a GOOD thing, are you…?! Cheap table salt IS harmful; I've been trying to get my parents to switch to pink Himalayan rock salt (which is almost too pretty to use as a condiment, there's also Persian blue salt, which is a beautiful cobalt blue). I'm for holistic medicine – 'holistic' being another 'dirty' word associated with quackery, for reasons I can't fathom).
In my quest for recovery, I began taking a low-dose bovine adrenal cortex supplement (100mg) and, if that doesn't help after I've given it a good go for a couple of months or so, I'll buy something stronger (it comes in 80/100/125/250mg strengths). The same company also manufactures porcine thyroid hormones – but I won't give the name in case I'm not allowed to do so, I'd not want to compromise Dr. K's position. All I'll say is that it IS available in the UK WITHOUT prescription, because it's classified as a dietary supplement. It's not cheap, though, especially not for someone on benefits, as I am.
Right now, as far as I'm concerned, the UK doesn't have a health service as I do not seem the NHS to be any such thing – at best it's a 'un-sickness service' (that's NOT the same as 'wellness') and, at worst, it's a 'makes-you-sick' service. Why's it not changed its dietary policy in the face of overwhelming evidence that a LFHC calorie-restricted diet simply CANNOT work…? Why does it still script statins, which have no proven benefits, and do a great deal of harm…? To put it very bluntly, the NHS is nothing more than Big Pharma's fuck-buddy, it has ZERO regard for true health.
There, frustrated rant over, but that doesn't help ME, does it…? The only thing that'd help me – and thousands of others – is still illegal (don't worry, Dr. K, I'm not going to ask for your standpoint on weed, because I'm sure you're not allowed to say…). Ganja, to me, is alternative medicine. It's medicine, it's not a 'drug'. I honestly think (again I'm not expecting Dr. K, nor anyone else, to offer an opinion on this) that Big Pharma's calling the shots on that, too; think about it; cannabis, which has well-researched medicinal benefits, and has few – if any – side-effects (sorry, serious adverse health events) is illegal, but booze and fags aren't – could that possibly be because they GENERATE revenue, whilst Big Pharma knows that cannabis will LOSE it revenue…? Rhetorical question, because I know opinions can't be offered.
Am I being overly cynical…? I don't think so…
I apologise for the rant, matey, I'm just EXTREMELY FRUSTRATED!
This situation has been going on since I was first diagnosed with Hashimoto’s thyroiditis, when I was just over thirty years of age. I’m fifty seven this year, which is just over twenty five years since I was first diagnosed. So, little has changed. Thyroid patients in the UK and all over the world are still being condemned to suffer their symptoms due to poor diagnostic work and especially poor treatment practice that relies on TSH, and FT4 laboratory tests, maintaining these within reference ranges and treatment with Levothyroxine (T4 medication).
In my own case, I lost my career, and it had severe impacts on my family life. Eventually, through sheer determination, pig-headedness and a little ingenuity I managed to get well using Liothyronine Sodium only (T3 only medication). I’ve been well on this for over fifteen years now and am continuing to work with other thyroid patients to help them to do the same.
In the first ten years of having hypothyroidism I had such a bad experience with many endocrinologists, who basically saw normal looking thyroid lab test results when I was on Levothyroxine treatment. I had all the original symptoms that I’d developed when I was first diagnosed but because I was on the ‘correct treatment’ and my TSH and FT4 (and even FT3) were normal then I was presumed to be ‘cured’. I saw many endocrinologists (both private and NHS) and got the same kind of experience with them all. Eventually, using T3 only, I became well and then did meet an endocrinologist that actually allowed me to continue using T3.
I recently met another endocrinologist who was in the younger generation and he actually did say that he didn’t care whether I was on T3, natural desiccated thyroid or T4 as long as I felt well and my TSH wasn’t suppressed. The latter I still don’t agree with for all patients. TSH can be a measure of too much thyroid hormone for some people, but for others it isn’t. The TSH is a pituitary hormone, and the pituitary tissue has the highest concentration of T3 in the body and converts T4 locally within its own cells. Consequently, the pituitary isn’t the best tissue to use as a measure of general tissue levels of FT3. In addition to that last point, it is also well known that in some cases the TSH set point can be maladjusted and register lower than it used to for an individual. Anyway, I was at least encouraged to hear a younger endocrinologist be a little more open minded than many I have seen in the past. Unfortunately, this is not the common experience that many thyroid patients have.
Thank you Dr. Kendrick for writing this article. It is very true and well worth communicating. I speak to hundreds of thyroid patients each week who are still being abandoned by the NHS or their national health care system. It is hard to not look upon this as a form of abuse. It is also hard to believe that it has been going on for so very long and with such little change. I hope I live to see some really positive changes occur in my lifetime but sometimes I lose hope.
Best wishes,
Paul Robinson
(author of ‘Recovering with T3’ and ‘The CT3M Handbook’)
Reading Paul Robinson’s book, “Recovering With T3” was a game changer for me! After my daughter was born in 1996 I was exhausted, gained 5 and 1/2 stone during the pregnancy and my GP said, “Oh, not to worry!” Meanwhile, I could not lose it, no matter what and I was so tired and she kept saying to me, “It is singleparentitis!” So, if you can believe this, it was my own mother who told me to ask her for a thyroid test…because she herself has hypothyroidism. I did, and gee, no surprise, me too! But this took 6 years! 6 long years of complaining, or trying my best to work, take care of my daughter and so on…yes, by the time I went on Levothyroxine she had also has me on Prosac, blood pressure pills and so on! I got off the prosac and the diuretics, but really felt no better at all. I suffered for 12 years on Levothyroxine until I did my own research and for this I thank the Internet! I was able to see that Naturopaths have better solutions than any Endo and GP! I finally got the real diagnosis of Hashimoto’s thyroiditis which is an AUTO IMMUNE disease and guess what? I had to ASK my Useless ENDO if I had it. He looked up my notes and said to me: “I see you were diagnosed with Hashimotos in 2002”!!!!!!!!!!!! I was so angry! Useless morons! I mean how about testing me for allergies?? I mean what kind of “medicine” is that????? So finally after much on my own research I read Paul’s Book and got myself on T3 which these dingbats won’t even prescribe! I have to buy mine in Hong Kong and have it shipped to London!! I feel SO much better and of course did an adrenal spit test which clearly showed I was EXHAUSTED! So I also used Paul’s circadian rhythm method which helped as well as many supplements and changed my diet…no wheat, gluten, diary, sugar and let me tell you..it is not a CURE but it is better then feeling dead inside and or wishing you were dead! I thank Paul Robinson for all his hard work helping us on his Facebook page and I would also recommend Dr. Izabela Wentz who is a Pharmacist who has left the dark side and seen the light and wrote a book called: “Getting to the ROOT CAUSE of Your Hashimotos”! She reversed hers and she shows you how too. Yes, we often have to pay for our own bloodtests but I use the NHS when I can for blood tests. There are many good FUNCTIONAL MEDICINE Doctors and Nutritionists who actually DO know how to help you so please get Paul’s book if you too want to use T3 only treatment. I also would recommend this organization which helps patients worldwide to find the root cause of their suffering and heal from that point up. After all, who wants to be on Medicine their whole life? That is not a cure! Check out here: http://www.functionalmedicine.org and see if you can clean up the mess within that triggered your hashis or hypo. Can not stress enough how much Paul Robinson’s Book, “Recovering with T3” helped me so please get this as well! Thanks, Paul! 🙂
I was diagnosed with hypothyroid at 28 and had high antibodies which my doctor has said is hashimotos but my Free T3 drops on the Levo. My doctor said my Free T3 didn’t look that great and that he would prescribe me T3 if he could except that the NHS can’t afford to dispense it and Levo is what is commonly given. At least he was being honest but I’m still waiting on an urgent endo referral which was done 2 weeks ago. I was told I would get a letter in a week but this hasn’t turned up. I asked my doctor to look into this and he told me to let it run its course. 😦
Had a look on NICE and they quote price of about £107 for 28 x 20mcg T3 – so yes heckishly expensive unlike Levo which is cheap as chips. So had a quick look around the internet and found some to buy for 60 USD for 100 x 20mcg. Why does the NHS need to pay so much for this? Confused.
You can buy 100 x 25mcg for substantially less than £20, if you know where to look, and it is a perfectly good product.
The NHS is ripped off because there is no competition – only one T3 has been approved for use.
There are rules about how much the NHS can be charged for branded medicines. In order to circumvent those rules, the company that produces the T3 that the NHS buys declared their product to be generic. Once they declare that, the sky is the limit as regards price.
Yes why? United Pharmacies UK, based in Hong Kong, sells the Turkish Tiromel. 100×25 mcg for £3.99. It is better than the British stuff. But they are nearly always out of stock – wonder why.
I too have been diagnosed with Hoshimotos and since my Thyroid labs are normal, have been suffering for 9 months with debilitating fatigue, trying to work everyday with severe vision problems and aches and mood swings. The dizzinesa or fatigue or whatever my brain is doing, ensures I habent felt like I’m even on the planet. The palpitations are very scary and the feeling of disorientation has gotten me prescribed an antidepressant but two days of those side effects and I was done with that. Plus…. I don’t feel depressed, just tired and sick of feeling sick. How do I feel well again? This isn’t who I used to be, nor who I want to be. How can I get a doctor to listen? Or care!
Some doctors do listen and some don’t. Dr Toft who was President of the BTA stated in a question/answer No.2 in a Pulse online article:-(not a perfect answer by all means particularly re the TSH – many countries medicate if TSH is 3)
2 I often see patients who have an elevated TSH but normal T4. How should I be managing them?
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.2
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.
Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.
If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSH of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient’s normal TSH
There is no science behind the magic number ’10’. It is a left over artifact from the first generation thyroid TSH tests when they used polyclonal antibodies and had more noise thus shifting the reference range to the right. ’10’ has been out of date since the second generation tests were introduced, some 35 years ago. There is no scientific rational for ’10’ anymore than there is for ’11’ or ’13’ or ’35’ as being the dividing line. Why do doctors persist in perpetuating this myth that ’10’ is a number backed by science? PR Lundy
And thyroglobuln antibodies. Both are diagnostic of Hashimoto’s. But not according to my NHS endo who said they are meaningless!!
Thank you so much for your great article. It is so heartening to know that there is someone out there in mainstream NHS medicine who is seeing the bigger picture on thyroid issues, and what’s more prepared to stick his neck out and write about it for others to see.
I was one of the lucky ones put on T4 only some 20 years ago when Drs were more inclined to do so on a borderline TSH result. When I gained a CFS diagnosis on top of hypothyroidism I gained weight and deteriorated in health over many years and did not think to link my CFS diagnosis in any way with the thyroid issues as my blood tests were nearly always ‘normal’,(or adrenals for that matter as that is another arena that is only looked at by mainstream medicine if the person is in severe crisis).
I had to fight to get an FT3 test by paying for it (as TSH and FT4 were normal). Luckily my low FT3 result enabled me to be referred to a sympathetic endocrinologist who was prepared to try me on T3 with T4 initially, and then T3 only (as long as my GP agreed, which she did). Thankfully there are a few NHS endos who will do this but I know that many people self treat because they are not so lucky, and many many more people do not even know about other possibilities and just decline in health. My own GP has admitted that I know more about the thyroid than she does, and is willing to let me dose myself according to needs, within reason, but I know that she is a very rare GP to let me do this.
The other unaddressed part of the scandal is just what is causing the hypothyroidism. I read endlessly about the number of endocrine disrupting chemicals in the environment but nobody makes a connection with endocrine disorders. Is there an increase in these disorders? Is there a connection? We will never know unless it is looked into. One recent study by the University of Kent showed a significant increase in hypothyroidism in areas with fluoridated water.
I know that my hypothyroidism appears to have been triggered by wheat/gluten although neither I nor my family get a positive coeliac test. Looking at research I have found that there are other gluten mediated auto-immune diseases like gluten ataxia which test positive for a different set of antibodies. I suspect that if the work were done we would discover a further set of antibodies in people where the target tissue is the thyroid. Has something changed to cause such a huge increase in people who find wheat/gluten makes them ill (as shown by Dr A Fasano et al)?
Other hypothyroid people seem to have been triggered by viruses so perhaps we should actually view hypothyroidism as a symptom in itself.
The diagnosis and treatment is poor. I was not diagnosed until 2013 but I can now see that I have had this all my life. I will be 55 this year!
Also, slightly in contradiction to Dr Kendrick’s last paragraph, despite having primary hypothyroidism, treatment with T4 does not work for me. Luckily my blood tests show this clearly (if the lab can be bothered to do the T3). A combination of T4/T3 helps but does not make me well so it is a trial of NDT next with or without help from the NHS.
I suspect GMOs, fluoride in water and BPAs are all playing their part to increase the number of endocrine problem instances in the population, along with overuse of antibiotics and too much exposure to toxins in general… but especially BPAs as they are known to inhibit hormones. However, if most grain (containing gluten) is now GMO, we have to suspect that this is a major player too. I also believe that all animals on this planet have evolved in line with everything else around them, but we keep meddling with nature, by introducing things that are not natural, and therefore, we have not evolved to cope with these things – and there is a price to pay for this – for example trans-fats and low calorie drinks are not natural and have been proven to cause us to behave in an unnatural way.
Hello Isfet – I wonder if you are the Isfet on TPAUK. To add to what you have written, I now am quite certain that my own hypothyroidism is linked to antibiotic use, which caused gut dysbiosis, Candidiasis, and possible also fungus and mycotoxins from mold. Naturally a mainstream doctor would never be able to test for these nor understand how to treat, which has to be with a dietary approach plus specialist supplementation. Nonetheless, the only thing that has helped at all is a switch to NDT, which I buy online, and is sent to me labelled as a vitamin. I am eternally grateful for the website TPAUK which paved the way to my improvement in thyroid hormone status. There is no other website like it for all things connected with the thyroid.
Gabriella
Despite the (proven) inaccuracies of TSH testing and the lack of any (real) knowledge on the part of most GPs… this nonsense continues and is unlikely to abate in my lifetime.
Hashimotos and Graves are both disorders of the autoimmune, so bombarding the system with T4 or NDT – whilst hopefully relieving symptoms – is tantamount to removing the bulb when your car’s oil pressure warning light comes on… your thyroid will continue to take a kicking from those pesky antibodies you persist in making.
I have yet to hear a satisfactory explanation for the cause of ‘plain old common or garden hypo/hyperthyroidism’… apparently this simple, (you would even think benign) condition just falls into that highly irritating “one of those things” category… iodine deficiency, fluoride etc etc.
Do me a favour!
If you believe that ‘plain old common or garden hyper/hypothyroidism’ exists at all… tuck yourself up with a good book and a box of levothyroxin… and let me know how you go on with that
So… just you keep on testing TSH levels, Doc!
Don’t bother testing for antibodies and completely ignore anything that even approaches the idea of considering symptoms. That sort of thing is after all far too expensive/time-consuming/difficult/unconventional….. (add your own adjectives)
Oh and where are we up to with our understanding of the human autoimmune by the way?
The answer to that is painfully apparent to so many people, yet if one’s thyroid is pissing one about, surely one ought to be wondering why.
There is a lot of conjecture out there on what triggers the various symptoms of an autoimmune response…. there is a hell of a lot of well reasoned sense too.
From plain old gluten to metal fillings… the truth is out there… we only need to eliminate the suspects ourselves, individually and in a bespoke, thoughtful and measured way.
If only the legalised drug oligarchs and the medical profession they puppeteer would listen to our annoying somatisation!
I refused to have another white filling as i am pretty sure this is what made me hypothyroid, white fillings have BPA and many other weird and wonderful chemicals in them, (ask for the ingredients from your dentist, get the product pamphlet your mind will boggle). I had never been ill with amalgum fillings.
Well done Dr Malcolm Kendrick for exposing the ever increasing problems and symptoms facing people with thyroid issues. At a time when we are vulnerable and needing help, conventional medicine continually slams the door in our faces.
We can only wish for more sympathetic, open minded and courageous doctors such as your good self.
Thank you.
Thyroid and cholesterol have very strong connections. I recently came across this paper which highlighted the specific connection between TSH and cholesterol:
First Published on February 23, 2015, doi: 10.1194/jlr.M047654
The Journal of Lipid Research,
jlr.M047654.
[b]Thyroid-Stimulating Hormone Decreases HMG-CoA Reductase Phosphorylation via AMP-Activated Protein Kinase in the liver[/b]
Xiujuan Zhang1,
Yongfeng Song1,
Mei Feng1,
Xinli Zhou1,
Ling Gao1,
Chunxiao Yu2,
Xiuyun Jiang1 and
Jiajun Zhao1,*
1 Shandong Provincial Hospital Affiliated to Shandong University, China;
2 Shandong Academy of Clinical Medicine, China
↵* Corresponding author; email: jjzhao{at}medmail.com.cn
Abstract
Cholesterol homeostasis is strictly regulated through the modulation of HMG-CoA Reductase (HMGCR), the rate-limiting enzyme of cholesterol synthesis. Phosphorylation of HMGCR inactivates and dephosphorylation activates it. AMPK is the major kinase phosphorylating the enzyme. Our previous study found that thyroid-stimulating hormone (TSH) increased the hepatocytic HMGCR expression, but it was still unclear if TSH affected hepatic HMGCR phosphorylation associated with AMPK. We used bTSH to treat the primary mouse hepatocytes and HepG2 cells with or without CA-AMPK plasmid or protein kinase A inhibitor (H89), and set up the TSH receptor (Tshr)-knockout mouse models. The p-HMGCR, p-AMPK and related molecular expression were tested. The ratios of p-HMGCR/HMGCR and p-AMPK/AMPK decreased in the hepatocytes in a dose-dependent manner following bTSH stimulation. The changes above were inversed when the cells were treated with CA-AMPK plasmid or H89. In Tshr-knockout mice, the ratios of liver p-HMGCR/HMGCR and p-AMPK/AMPK were increased relative to the littermate wild-type mice. Consistently, the phosphorylation of ACC, a downstream target molecular of AMPK, increased. All results suggested that TSH could regulate the phosphorylation of HMGCR via AMPK, which established a potential mechanism for hypercholesterolemia involved in a direct action of the TSH in liver.
Cholesterol
Enzymology/Enzyme mechanisms
Liver
Protein kinases/AMP-activated protein kinase
Receptors/Hormone
HMG-CoA rerductase
TSH
Received January 28, 2014.
Accepted February 23, 2015.[/i]
http://www.jlr.org/content/early/2015/02/23/jlr.M047654
Happily, the abstract and full paper (as web pages or as PDF) all freely available from links on that page. 🙂
Back in the days before they developed the stupid TSH test, and thyroid tests, hypothyroidism was diagnosed by clinical signs and symptoms and cholesterol levels. This disease was fully and comprehensively treated, and most patients were, on average, on two thirds more meds than they are now (they kept going until the patient felt better and all their signs were that they WERE better). Now, we are all held hostage to stupid arbitrary blood ranges. As levo is off patent, there is no money really in thyroid meds (well there is, but not like viagra or breast cancer drugs) the money comes in through poly-pharmacy where we are all pumped full of myriad drugs to treat all those bewildering symptoms that ‘must be something else as your thyroid levels are FINE’ – kerching! And they are laughing all the way to the bank. It’s a joke. You might like the film project, Sick to Death http://sick2death.com/
girlscoutuk, actually the statement that before the TSH patients were fully and comprehensively treated is a myth, an urban legend. When my Mother was diagnosed in 1927 she was put on 1/4 grain and left there for the next 55 years. She never had a chance for a ‘normal’ life. My Father, who had obvious problems on the thyroid/adrenal axis, was never diagnosed or treated even though he had 3 heart attacks in the 1960s. A timely diagnosis and adequate treatment has always been problematic. There was a great deal more written about symptoms but doctors still had a difficult time applying the knowledge. PR Lundy
Not sure I entirely agree PR Lundy, there was not this explosion of ill health like there is now, and most doctors did in fact practice the ‘art’ of medicine and use those highly attuned medical instruments called their eyes and bloody ears! ‘Computer says no’ and guideline driven illness has been the deathknell of the art of medicine ….
PR Lundy, nobody wants to go back to the good old days, but there will always be issues of proper:
1- training of practitioners devoid of Big Pharma influence.
2- Up-to-date medical science
3- screening with reference values other than “go-no go”. Now,”Abnormal” is acute and borderline abnormal is okay. Some whiz decided double standard deviation or 95% of population was normal.
4- drug
5- dosage based on #3 above, and symptomatology which disappeared from the good old faculty text books…
Dr Kendrick thank you for putting your head above the parapet. The so called ‘treatment’ of hypothyroidism in the so called ‘first world’ is a scandal. GP training on this subject is abysmal. For the creator of this particular ‘somatization disorder’ read ‘misogynist abomination’.
I self medicate. That my medicine is more often than not slapped with a £20 customs charge, in addition to costing me £60 per month, is the final insult. I dread my next visit to see my GP, who has suddenly taken an interest in my bloods, as I have a suppressed TSH. I am feeling something approaching well for the first time in c5 years. There’s not a thing he can do to stop it…but my contempt for and defiance of my supposed health counsellor, whom I pay for through my taxes, is not healthy, is it ? Big Pharma: profits before people. Hang your heads.
Thank you for another excellent article.
I woke up 1-2years ago after assisting a “Thyroid summit” of functional medicine. Now I ask for the patients basal temperature, For the reverse T3 test, TSH, freeT4, free T3 and thyroid antibodies and prescribe also T3 . Luckily here in Spain i have a pharmacy that delivers this hormone.
Our remaining sick has zero impact on the livelihoods of doctors, and they have no incentive to risk their jobs by making us well. I was prescribed anti-depressants for five years after I requested tests for low thyroid in 2002 (tired, cold, weight gain, low mood etc). A solitary ‘normal’ TSH result was considered proof that I wasn’t hypothyroid (no T4, antibody, or T3 tests). It was only after five more years of decline, when I was becoming unable to work, that I went to a private gynaecologist who diagnosed my hormone imbalances as ‘having an element of hypothyroidism’. I had been saying it for five years, and all the while my GP was telling me to go to the gym. My antibodies were through the roof, but my GP still insited I was merely ‘subclinical’. I then suggested my mum ask her GP to test her thyroid. She had a TSH of 10 – all of her ailments were thyroid related (and aunt and grandmother too). I was grudgingly prescribed T4, but I insisted on having a T3 test. My T3 remained below the reference range, even though I was now on T4. My GP would not prescribe T3, but instead referred me to an endocrinologist saying I had ‘slightly lowered’ T3. By this time I’d had enough, and had begun buying meds online and treating myself. Of course the endo was appalled, and this is the reaction we tend to get. (‘Clever girl, I would prescribe that if I could’ is an extremely rare response). We can’t be expected to trust our medical professionals to care for our health when this is our experience. My latest GP deserves a mention – he knew nothing about T3 vs T4 and just wanted to berate me at length before refusing to prescribe anything at all and ordering me to ‘Get out!’
Hey, I’m the clever girl you mention (;-)) but I failed to mention the GP who escorted me from the premises shouting ‘any doctor dosing a patient to a TSH of less than 4 is automatically reported to the GMC for overdosing which is a very serious offence’ despite me trying to say, but I’m TSH suppressed for cancer, and that’s NOT TRUE. Numpties. My current GP says I have ‘bi polar 2’ and the words ‘alcohol dependence syndrome’ (messed up Gamma GT and B12 and iron readings any other Graves patients??? Yes I thought so) follow me everywhere, which resulted in me not being given ANY pain relief on discharge from double strabismus surgery for my TED, despite me crying and begging and I was treated like a drug seeking junkie, despite endless reports from good endos saying a) I’m not mad b) I’m not and never have been a drunk, and c) I have a history of undiagnosed and untreated GRAVES disease and hashitoxicosis which fully explain all my symptoms.
Girlscoutuk, as someone who is also assumed to be a drug-seeking junkie (I don’t take illegal drugs but I have begged for pain relief for severe gynaecological and pelvic problems for years, so I’m assumed to be a drug-seeking hypochondriac) thank you for writing your post. It helps me to make sense of the denial of pain relief for a procedure I had done in hospital a few years ago that was like being tortured. Giving gas and air was standard practice in that hospital for the procedure I was undergoing – they even wrote about it in the patient information leaflet I was sent – but on the day I was told it was unavailable. My groans and cries disturbed the surgeon so he never properly completed the procedure he was doing. He then declared the results of the procedure to be “normal”. Oh how I HATE that word when it comes out of a doctor’s mouth.
S Jones, I hear you sister, it’s awful isn’t it. I’m also a ‘maverick patient’ as I refused the radiation treatment for my thyroid cancer and stepped ‘off the treatment pathway’ – because there was no evidence that it’d add anything to my survival chances, because i checked, and so did my PhD cancer researcher friend … in fact when I said, ‘there’s no evidence that irradiating every cell in my body will help me’ they said, ‘we know, it’s just it’s the standard treatment’. And yet when you question the treatment, you are crazy! It’s like something out of Orwell’s 1984 …..
Thank you for this clear, compelling article explaining what so many of us have had to discover, the hard way. Like others on this post my career, my relationships and mental health all went down the pan due to the non conversion of T4 to T3 in my body and more to the point misdiagnosis or dismissal. A chance meeting with another sufferer led to consultations with the very special Drs Peatfield and Skinner before which I had been dismissed repeatedly.
Although now having at last a sympathetic GP, who has listened to my arguments, his hands are tied. I am more or less stable now, have recovered my life with some considerable effort and thinking outside the box, so I can fit my job round my condition, and because of this I am fortunately can finance my own NDT. We need you to keep banging the drum, if you can, with your many, often arrogant, endocrine consultant colleagues for the sake of all those people who have yet to be treated correctly. Thank you.
I am one of those who needs “excess” levothyroxine to feel normal. I need to have almost undetectable tsh and top of reference range t4; a very small dose reduction a couple of years ago brought me to my knees. I was so ill my gp suspected things like insulinoma! Luckily he didn’t accuse me of somatising and referred me on and I have managed to fight my corner and find an endocrinologist who is happy to let me run a bit high as long as I’m monitored. They did do some basic adrenal tests to make sure there was nothing underlying there. The difference an extra 12.5 mcg of t4 a day makes is the difference between a life worth living and one of soul crushing invalidity.
Thank you, Dr Kendrick. As others have said, you are a breath of fresh air. I have been ill for over 10 years. I was eventually ‘diagnosed’ with CFS then Fibromyalgia. Thanks to a visit to the wonderful Dr Skinner two years ago and a diagnosis of hypothyroidism, I hope I am now on the road to recovery, but it is not easy, especially now that Dr Skinner has passed away. I have changed GPs but the new one will not prescribe any thyroid medication either. I get my own supplies. He cannot explain the improvements I am making on the pain and fatigue fronts and why I do not feel desperate when I forget to take the anti-depressants I have been on for over a decade. Yet he can see I am not hyper, despite being on combined T3/T4. Let us hope that others will see the light and follow your admirable stand.
I have tried unsuccessfully to extract from the RCP details of those who authored their notorious position statement on primary hypothyroidism. They simply ignore all requests for the information. That means that we have no way of knowing whether those concerned were competent to deal with the more difficult cases and/or had vested interests that led to the position statement being couched in the way it is, with a strong prejudice towards the prescription of armour and T3 and no recognition of the fact that patients within the TSH range may possibly be suffering from thyroid hormone related problems. As a result, GPs and mainstream endocrinologists slavishly work to RCP recommendations that purport to be specific to primary hypothyroidism but, in fact, mislead practitioners into failing patients whose condition is more complex than straightforward primary hypothyroidism.
Those hard cases are the very cases that Dr Skinner was able to deal with successfully after abject failure on the part of practitioners who were not competent to recognise the problem let alone treat it effectively.
The problem appears to be that T3 has only been approved by NICE for short-term emergency use.
I am one off the lucky ones who have been on T3/T4 therapy for over 5 years now although I wish I had been put on it 25 years earlier when the symptoms first started. All my TSH tests had always come back normal. A sympathetic GP tried me on T4 after blood tests for TSH, T4 and T3 showed a low level of T3. T4 helped a bit but did not alter the T3 levels and after a lot of badgering I managed to get to see a consultant.
I had a blip last year when the Somerset CCG in their wisdom decided to put T3 on the NHS red traffic-light list which means it can only be prescribed by a consultant. After months of waiting I have now been back to Bristol and have to have repeat prescriptions sent to me at home from the BRI which my GP was able to give me before after I had been referred back to him my the first consultant.
Another problem is that where T4 is cheap and T3 is expensive but that is only because there is only one drug company in the UK supplying it. This has caused problems in the past for patients on it when the company ran out of the raw materials for several months.
I wish you well with your campaign but won’t hold my breath!
Since most of us here with Malcolm seem to be against the hypocrisy of the medical establishment you might think it could be worthwhile to join me to sign the petition to support Professor Noak in South Africa who is been accused of misconduct by the dieticians.
“Professor Tim Noakes has been reported to the HPCSA (Health Professions Council of South Africa) for advising a mother on Twitter to wean her baby onto a LCHF (Low Carb High Fat) diet and will be facing a hearing on the 4th and 5th June 2015 to face charges of disgraceful conduct on social media”
I think we would do the same when they put Malcolm on the official grill.
https://secure.avaaz.org/en/petition/Health_Professions_Council_of_South_Africa_Support_Prof_Tim_Noakes_in_his_quest_to_improve_eating_guidelines/?tTpEcjb
Good to read that there are some doctors out there who know how it works. I have totally given up now trying to get anyone to help me. Aged 29 they gave me RDI then nothing. I am 53 now, my 4 gorgeous children have grown up. I am going to die if this continues, I have tried some T3 I managed to buy but I have very high cortisol so I don’t think I can win this war on my body. I have no hormones since the aged of 35 when I lost my womb and ovarys due to endometriosis. I hope the next generation don’t have to go through this neglect. I am too exhausted to even know where to begin now. Keep fighting everyone
Gina I found your post so upsetting. Please don’t give up, you deserve to get well. Have you asked on Thyroid UK for their list of good thyroid doctors? There might be one near you. Clearing out the toxic levothyroxine (which it is if unconverted) will go some way to lowering the cortisol, as will T3 only for a while.
Oh (((Gina))) please don’t give up x
I know its really hard Gina. You can’t think, you’re exhausted, you ache all over, everything is too much effort, you have no reserve, you feel like death. But, you can get well. It IS possible.
My suggestions would be (and I am in no means giving you medical advice) to get a full panel done including B12, ferritin, Vitamin D, Ft4, FT3, TSH (antibodies if not already done), reverse T3. To then correct what needs to be corrected – and consider alternatives in terms of thyroid hormone replacement (t3, NDT). There is enough expertise in the thyroid community to help you get well. That’s how I was able to get better, I used the experience of other patients and then largely it was trial and error – BUT I would say after 3 years of juggling I am 75% there. I am now dealing with trying to stabilise fully onto NDT (but at present my ferritin is too low to increase the NDT anymore) and dealing with the effects of considerable deconditioning after 10 years of ignorant treatment by the NHS.
I just want to say a HUGE thank you to the thyroid community for all their support and encouragement, without which I probably wouldn’t be here.
Please don’t give up Gina! Recovery IS possible! Your symptoms are treatable! Xx
Thank you for the reply. I know I need to keep fighting you are right, it’s the exhaustion and brain fog as we all know. how I wish aged 29 I knew what RAI treatment would do to me. If anyone ever finds a good practitioner in the UK please pass it on- they will be inundated. My GP tried to refer me to an Endo who said nope to the referral!!! He agrees I am ill but said oh she might have Cushings then nothing !!! What do I have to do!!!!
Gina, there are lots of people out here who are able to help you, but obviously you have not found them yet. Our online forum has over 10,500 participants who came seeking help and support that they could not get from the NHS or elsewhere. We specialise in helping people such as yourself, so please, please don’t give up. We will do everything that we can to get you back on the road to recovery. We have some simple home tests you can do yourself to find whether your problem might be adrenal related, and medical questionnaires (that cost nothing) that you can answer, and which will tell us, from how you score, whether have low adrenal reserve – which is a huge possibility. Please come and meet fellow sufferers (you are most definitely not alone) http://www.tpauk.com – we are campaigning to change the way doctors are being taught to diagnose and treat those with continuing symptoms of hypothyroidism.
Gina, I do have a reasonable endo (it’s been hard work finding him) that is supporting my current self-treatment (he agrees with what I am doing, but wants me to reduce my T3, currently 10 mcg three times daily on top of a base dose of NDT and transition fully onto NDT). I must admit, now I am reasonably stable, I am not looking forward to it, but if I am all the better for it, it will be worth it. This endo supports both T3 and NDT (but can only prescribe NDT privately due to the Trust I believe not supporting it but he can do what he likes privately). He sent a copy of an NDT script to me which I forwarded to my GP. My Gp is now writing to the CCG on my behalf to see if NDT can be funded – as he will prescribe it for me if so.
You can write to me at karen.an.richards@googlemail.com and I will tell you the details. It sounds like it is worth paying for a private consultation in this instance. He can then advise your GP.
Gina, as someone in the same position as you – endometriosis, removal of womb and ovaries in my 30s, unable to take any hormones, also hypothyroidism, and high cortisol, now in my 50s, can I say that getting better is possible. I couldn’t walk upstairs 2 years ago and was virtually bed-ridden. I joined two forums :
https://healthunlocked.com/thyroiduk
http://www.tpauk.com/forum/
and I have never looked back since. I no longer involve doctors in my healthcare unless I have no choice. The dismissal of my symptoms, being kicked out of a doctor’s office, having doctors roll their eyes at me, smirk at me, and shout at me. I even had to treat my own anaemia, for goodness sake! Guess what? I can walk upstairs now and I’m no longer even close to being bed-ridden.
It is a hard slog because there is a steep learning curve with a brain that refuses to think and remember. But you can get your life back. Please don’t despair, and join those forums I linked to above.
I take T3 only by the way. I’ve tried levo, NDT, T3, back to NDT, and am now happy on T3 only. I did have to fix all my nutritional deficiencies (which are endemic among people with thyroid problems, but are ignored by most doctors) before I could get anything to work though.
While waiting for tests, or deliveries of outsourced T3, or ENLIGHTENMENT in the medical industry, there is one thing that hypothyroid people can do….
Get the thyroid-suppressing aspects out of your life! Drink filtered water without chlorine/bromine/lithium/fluoride. Get plenty of sleep. Avoid goitrogenic foods. … But above all, make sure you get (in an easily-absorbable form) every single nutrient which is involved in hormone production, and conversion of T4 to T3.
We’re constantly told that all we need is a whole-foods diet, and supplements are a waste of money. We’re also told we need to eat plenty of carbs. Both of these things are NOT true! Hypothyroid individuals frequently have impaired digestion AND absorption of nutrients. Start with plenty of sublingual methylcobalamin (B12), zinc, selenium, iron if you need it, then there’s iodine (carefully titrated if you have Hashimoto’s), betaine-HCl, inositol ….
All these things made a huge difference in my quality of life. I was diagnosed with hypothyroidism at the age of 6 months (over 59 years ago), and have dealt with the thyroid rollercoaster all my life.
wish i found these sites last summer. the gp stopped my levothyroxine after 3 months use saying everything was now fine and i didnt need them . unknown to me and her (she didnt test for antibodies) i in fact had hashis and it was only the meds that was making everything ok. a week later i had a thyroid storm. another gp at the same practice said i was imagining things and refered me to mental health. ive finally got to see an endo after paying into a private scheme at work. i am a nurse myself yet felt very let down by the organisation ive given 20 years service to.
I’m one of the lucky few that persuaded my consultant to prescribe armour. Low T3 (I pushed for the test) They took my blood on a day I’d taken meds so he’s now wanting to halve the dose. (That ain’t happening). He wrote me a scathing letter too accusing me of never being hypothyroid anyway (?). Whatever dimwit. I duly replied outlining his omission of the facts. Be interesting to hear the response. Thank heavens for people like yourself that keep us informed!
Like everyone has said, a big THANK YOU to Dr Kendrick. When I told my GP that my brain didn’t work properly anymore, after being on Levothyroxine for about 4 months, he patted my knee and said that if I wasn’t better in a fortnight to come back and they would give me a new brain. I feel sure he wouldn’t have said that to a man.
That is an utterly disgraceful thing to say to a patient.
Dr Kendrick, I salute you. Gosh we need more doctors like you. Why can’t doctors be allowed to be doctors and be allowed to treat people holistically., there is no “one size fits all”.
When I was eventually diagnosed as hypothyroid I count myself fortunate that my GP is somewhat on the same wavelength as enlightened doctors who wish to treat the person as they see fit and I find it abhorrent that all are expected to slavishly toe the party line and be bullied by panels of “experts” and threatened with being struck off the Register.
come back in a fortnight he would Caroline a brain. I CERTAINLY FEEL SURE HE WOULDN’T HAVE SAID THAT TO A MAN/MALE PERSON.
Thank you Dr. Kendrick for an excellent article.
I have been taking levothyroxine for four years now and have never felt well on it, all it seems to do is suppress my TSH but does not raise my T4 and T3 even to mid range.
After hearing of so many people recovering on NDT and T3 I have asked my G.P. about both, his reply was NDT is “cobblers” and we don’t do T3
I have now come to the conclusion that if I am going to get well I will have to self treat like so many others have to.
We should not have to do this but what alternative do we.
Please please let us have more doctors like Dr. Kendrick.
So so wonderful to read this article. I am one of the many people who suffers hypothyroidism but absolutely cannot tolerate synthetic levothyroxine. Through four years of trying to rebalance my health only one GP out of many believed that the medication made me feel worse!
Now I buy my own medication, NDT, which has given me a new lease of life. Over the years I completely gave up on any ideas that the NHS and doctors could help me in any way. It really is time that the medical profession caught up with the growing communities of folks managing their own health. It is long overdue, based on my own experiences, that doctors listen to and believe patient experience.
Been on thyroxine for 23 years but want to go on N D T How can i make this happen
Hi Eunice, I recently started on NDT – Thyroid-S which I bought on A++++N, UK. If you go to the Thyroid-S website there is advice there on how to dose – how to switch from thyroxine by starting low and gradually increasing dose.
Join http://www.tpauk.com/forum and ask that question Eunice. You will receive answers that will help you.
http://tpauk.com/main/
Join, Eunice, it’s free. Then go Treasure Chest and click on the tab Top Resources
Thank you Sheila Turner for giving me back my life and doubtless many others.
Good luck, Eunice.
Legal action against individual physicians is limited to their being responsible to you via the implied patient-physician contract and via medical ethics. Neither, really deals with the basic issue that endocrinology, relative to post-thyroid deficiencies in guidelines and policy statements, has never been been right. In spite of decades of education, they still can not comply with basic standards of scientific, logical, or linguistic care. The proscription against T3 for post-thyroid deficiencies (which have the symptoms of hypothyroidism) has no scientific basis. The studies and meta-analyses that claim T3 is useless do not deal with patients with the continuing symptoms of hypothyroidism. The subjects were generally under treated as other studies have found with higher ratios of T3:T4, i.e., greater than 1:14, 1:10, or 1:5. The analyses of the study data all used averaging of all of the data, which diminishes the impact of low-occurrence rate data. The conclusions were over stated and not logically based on the study conditions and results. And by way of ignoring 98% of the applicable medical science, the need for reconciliation of study results with prior results was eliminated.
So the legal attack has to be made at that level – there is no science demanding the proscription of T3 against treating the very diseases in physiology that are based on T3 and not T4.
This forum is full of folks going on about hypothyroidism. By definition, if their TSH is below some value like 4, they don’t have hypothyroidism, i.e., deficiency of thyroid gland secretion. Consequently, the answer is not in T4 because the thyroid gland produces predominately T4. The problem is elsewhere, such as in physiology that operates with T3.
But without addressing this extra-endocrine physiology, the endocrinology establishment is forcing patients to be sick and need all sorts of single purpose, side-effect laden, expensive drugs.
There is no doubt that those in the medical-pharmaceutical industry will fight. The question then is do you live by ethics or not. Certainly, relative to the post-thyroid physiology and its deficiencies, the endocrinology establishment doesn’t.
The courts will never judge on medical matters. They will simply say ‘What do the experts say, what is established ‘best practice’, what are the guidelines,’ and if you follow that (as a doctor) you will never ever get into trouble. Thus, legal action is doomed to failure. A media/political campaign is the only avenue for potential success. End of.
One place you can get NDT from is http://www.inhousepharmacy.vu
So pleased to read a sensible and considered piece on Hypothyroidism!
Failure in diagnosis meant that Hashimotos cost me my marriage, my career, my figure, my confidence, my brainpower and many years of actually living, (rather than the mere existing I managed!) Once finally diagnosed – about 25 years too late – I was relieved and believed the GP when he told me that one little pill each day and I would be fine. Initial improvement was brief and I battled with the GP for 3 more years trying to get him to accept that I still was not well despite my blood results. I was frequently offered anti-depressants and told my symptoms were due to age, stress, menopause or of course depression. Weight gain, cold, hair loss, zero libido, dry skin, unstable emotions, and sever brain fog were my worst symptoms.
I fought for an Endo referral, and although he was a patronising and condescending headmaster- type, he did listen and I managed to get Free T3 tested – but despite it being the very bottom figure of the range, it was “in range” and so “normal” and the addition of T3 was “not indicated.”
It was then I gave up on the NHS and sought advice online as to obtaining medication privately. As my fiance is a nurse and used to doing what Doctors say – I had to fight the battle at home too. Unless I could convince him of the evidence and the safety of the medication I would never hear the end of it. Luckily he was prepared to read through the papers I had gathered and could see that I had the facts outlined. However it was still not without trepidation I added some T3 to my T4.
My improvement was not dramatic, but it was immediate. The dreaded brain fog cleared in days and I had my brain back again! I then switched to NDT as my reading led me to consider that this more complete solution may be the best thing for my body. I increased my dose slowly but steadily and the improvements continued.
In February this year I finally felt able to tackle diet and resume exercise. I have lost my first stone! My reward was a Fitbit and I can report I managed my goal of 10K steps each day this week, plus cycling, walking, shopping and gardening – all in one week! This would not have been possible even 3 months ago. This is living again and I will NOT give it up!
Nobody should have to fight like this just to be able to live a normal life. Nobody should have to pout up with condescending and patronsisng Doctors and Endos who assume we patients have zero knowledge and understanding. Nobody should ever be told that if they are not well when their bloods are “normal” that it is all in their mind or due to depression, (Here have a smartie!)
Thank you Dr Kendrick, for listening, for taking the time to understand, to find out for yourself. Thank you for speaking out for each of us that has been ignored and fobbed off.
Thank you!
Have you tried Wellsprings 20:1 cream Gina? I’m no expert but it may help?
Cascade thyroid blood work means TSH is the only test if normal, meaning only thyroid gland malfunction is tested leaving out other problems like antibodies, T4-T3 conversion, pituitary or even hypothalamus. TSH normality only means a normal hypothalamus gets what it needs for survival brain function, T4-T3 conversion in the hypothalamus is optimal so is susceptible to under secrete TRH to the pituitary to raise TSH. Thus T4 treatment may leave us with peripheral hypothyroïdism. T4 only treatment suppresses the small amount of T3 the thyroid gland was secreting and magical thinking assumes more peripheral conversion will make up for it. Drug company laziness only explains why combination pills are not the norm.
I am puzzled by the antipathy described from the medical establishment in the UK toward T3. On this side of the pond T3 is considered an acceptable way to augment treatment for “treatment resistant depression” even when TSH and T4 are normal (Hmm, maybe they were depressed because they were clinically hypothyroid.) One of my patients was given enough T4 to suppress her TSH to 0.1 by her endocrinologist as it was the only treatment that worked for her. I know several patients who are prescribed T3 by their physicians. As far as I know none of these doctors are being censured by their medical boards. Are things really that different here?
The antipathy is partly (mostly?) caused by the fact that the NHS is charged over £100 for 28 x 20mcg T3 by the single manufacturer whose product is approved.
My question is, How has Big Pharma who fund Medical Teaching managed to hoodwink Nations/Governments/Citizens for decades when it is clear that Hypothyroidism , low T3 is the core problem/issue of most illnesses and diseases
I have read that in the USA in particular, doctors are ‘persuaded’ to prescribe products by monetary incentives. Rumours have been spread about the inconsistency of NDT but Nature-throid and WPthyroid have had no inconsistencies in T4 or T3 in 75 years. Levothyroxine on the other hand has been withdrawn quite a number of times because the efficacy wasn’t right but it means lots of patients would have been quite unwell for a long period as it takes time for the information to ‘spread’ out.
Who has spread the rumours about NDT – in use in some form since 1892 without apparent mishap? Dr John Lowe (deceased) wrote the following to the RCoP and BTA and despite 3 repeated annual requests, never ever got the courtesy of a reply.
http://www.thyroidscience.com/Criticism/lowe.3.16.09/bta.rebuttal.htm
He also invented a non-prescriptive NDT called Thyro-Gold now, since his death, his wife is carrying on.
http://www.naturalthyroidsolutions.com/
http://web.archive.org/web/20101030190515/http://drlowe.com/QandA/askdrlowe/properuse.htm
Oh yes, JPA – things are VERY, VERY different this side of the pond and we know that the rest of the world is utterly disgusted with what is happening here in the UK. What I cannot fathom, is those medical practitioners in the UK actually KNOW that how they are diagnosing and treating their patients with symptoms of hypothyroidism is very, very WRONG, yet do absolutely nothing (apart from a very few) to try to stop the axe being held over their heads by the RCP and BTA. WHY – WHY – WHY ARE YOU DOCTORS ALLOWING THIS TO CONTINUE. Do you really NOT care about getting your patients back to optimal health when you know you are probably the biggest contributor to your patients continuing suffering? Get together, the lot of you for goodness sake, and fight to get back what you know is right – or SHAME, SHAME on you. Your patients health is in YOUR hands.
I am so sorry to hear that Shelia. I had no ideas things had gotten like that.
What a great article. I consider myself to be one of the lucky ones, I could afford to go private and have started treatment of NDT. In my referral my GP did not mention the fact I had antibodies, no surprise there! I am starting to feel better and at last I have hope. My GP put me on 25mg levothyroxine to get TSH to below 5 then refused to increase. I had first paid for full thyroid tests privately and they used a lower range so I was classed as out of range. I notice that the NHS range in my area has recently been reduced from 6 to 4.2 and 0.35 to 0.27 but this will make no difference to patients if GP’s still wait for patients TSH to reach 10 even with antibodies.and consider TSH 4+ on treatment correctly medicated. THANK YOU Dr Kendrick for being my voice.
I wonder what you think about this article?
https://www.hashimotoshealing.com/life-with-hashimotos/
about progesterone and thyroid and feedback systems.
American sites can be off putting as they often seem to have something to sell and waffle so much to that end, as this one does, but the content sounds sensible to me.
Also, as someone with hypothyroidism taking levothyroxine, NDT and using progesterone cream to try to control hot flushes I wonder if I am doing the right thing?
Nobody (g.p.) has mentioned looking at the interaction of other hormones with the thyroid and so I am wondering if we should be looking at the whole endocrine system ( rather than just TSH as we do in the UK)?
As with other posters, my g.p. just wanted to leave me on a low dose of throxine and unchanged symptoms, so I went to Dr Skinner and have been sorted on a combination with NDT for a few years. Although now I fell a bit adrift with no prospect of a similar thinking practitioner.
Huge appreciation to Dr Kendrick for this article and his rare and precious support for thyroid patients. I was also very interested to hear you speak at the recent TPA UK conference.
I wish to add my comments as simply as this. I have taken levothyroxine for 19 years and had NEVER felt free of symptoms. I am now, just 6 weeks into taking Natural dessicated thyroxine. After only 3 days my cognitive function came alive, I could properly concentrate for the first time in years, my slow brain/speech have been transformed. My energy levels have soared, I have no more slumps of devastating fatigue flawing me. I can function, I can work, I can be a wife, mother and hope to start leading a new wonderful quality of life. It feels like a miracle. It IS a miracle for me and for so many many patients. One pharmacist told me the other day that he has heard this story time and time again. People repeatedly telling him they cannot function without it, they cannot work. They have a quality of life again, stories of coming off benefits and returning to work, people who have trained to be teachers etc, able to return and lead full lives again. Left on T4 only, would have been the end for them..
I am now passionate about patients being heard but I am also angry about having to have lived through nigh on 20 years of inadequate treatment. I have felt unwell, I have been passed around looking at other causes for my ongoing symptoms. Prescribing other treatments which were not the answer, only treating a symptom but never the underlying cause.
No medical person I sat in front of ever considered I was inadequately treated. I was diagnosed hypothyroid 19 years ago at the age of 27, I am now 46. I asked at diagnosis if there was any other treatment and told a categoric NO. I asked a Professor of Endocrinology a few years later the same question and was told NO. I asked again 8 years ago and got the same answer. The reason I kept asking was because I never felt well, I have lived the past 20 years, running a business and raising my family, feeling extremely fatigued, aching joints, never able to reach a decent quality of life. We had IVF too, referred by a Professor of Endocrinology. Anyone who has gone through IVF will know the emotional road you take. I now strongly believe it was unnecessary, a closer look at my inaffective thyroid treatment could have avoided it all. There is no point being bitter, although it is hard not. My concerns now lay in the future. I consider myself lucky, I have worked from home which has helped me cope for the last 20 years. I have been able to afford the time and money to research all this and finally find an amazing consultant who understands it all and has made me well again. I pay for my medication, I pay for my t3 to be tested. ( I am planning to see my GP to discuss this). How many people are able to do this of their own accord? How many could attempt to do this when they feel so unwell? The drug companies! That’s another story altogether. Simple words : Please LISTEN to patients, Would I go to all this trouble if Levothyroxine (T4 only), had alleviated my symptoms? Would I pay my hard earned money for dessicated thyroid extract? If it wasn’t for the fact it WORKS !
Thank you once again Dr Kendrick for your role in this.
When one examines the medical science (which endocrinology ignores) one finds numerous critical studies:
1. Drs. Kirk and Kvorning found in 1947 that thyroxine does not properly care for all patients. This was confirmed by Dr. Means in 1954.
2. Drs. Gross and Pitt-Rivers found T3 to be the more active thyroid hormone in 1953
3. Dr. Goldberg demonstrated euthyroid (your thyroid is OK) hypometabolism (you’re fatigued anyway) in 1960 and successfully treated 32 patient counterexamples with T3.
4. By 1971, the basic post-thyroid functions were discovered in the peripheral tissue, which endocrinology ignores. T3 is the operative hormone in this thyroid hormone realm.
5. Late in the 19th Century, Marcus-Levy found thyroid hormones increase the body’s intake of oxygen. The consumption of oxygen is proportionally associated with the consumption of blood sugars by the cellular respiratory cycle, which produces water, carbon dioxide and energy in the form of adenosine triphosphate (ATP).
6. Subsequently, the thyroid hormone responsible for up regulating the cellular respiratory cycle is T3.
7. ATP is formed by the cells’ mitochondria to power the cells’ functions. All but one of the body’s 200 types of cells have mitochondria. Consequently, the lack of T3 produces all sorts of symptoms – the very symptoms the endocrinologists claim are non-specific because they don’t deal in microbiology. (See Salway, “Metabolism at a Glance.”)
8. Drs. Baisier, Hertoge, and Eeckhaut published the results of their 15-year study of diagnosing and treating patients failed by endocrinology. Like Dr. Goldberg decades earlier, they found the symptoms of patients failed by endocrinology are the same as hypothyroidism. They used NDT to produce 40 patient counterexamples.
9. There are three meta-analyses that allegedly show that T3 is useless. The studies that these meta-analyses review do not employ subjects in the context of patients with the continuing symptoms of hypothyroidism. Most of the studies under treat patients when on the combination T3/T4 therapy. The analysis methods (averaging) reduce the impact of low-rate occurrences. And the conclusions are overly broad. No attempt was made to reconcile their findings with applicable medical science because (per evidence-based medicine) it was summarily dismissed in favor of the randomized clinical trials. The only claim to fame of RCTs is randomization. No other issue in proper scientific investigation is required.
10. Medicine ignores medical counterexamples by dismissing them as mere anecdotes. However, recently the Thyroid Patient Advocacy charity used Monkey Survey to find patient counterexamples. Over two thousand were found, a number greater than all of the subjects in all of the anti-T3 studies combined. Unlike areas in complex bodily medicine, these counterexamples demonstrate the ubiquitous proscription against T3 in any form is wrong, even though it might be proper for people with only thyroid deficiencies and no post thyroid deficiency.
11. I wrote a theoretical paper “Reducing the Scope of Guidelines and Policy Statements in Hypothyroidism” which set the stage for the soon to be published disclosure of the results of the survey. This paper is available on the TPA website.
12. The tests for post-thyroid deficiencies are either indirect energy measurements or quite invasive and certainly none are approved by endocrinology. After all, if you had real knowledge of your condition, you might have grounds to demand proper care.
The question has been raised about what to do about this situation. After studying the related medicine for a couple of years, I came to the conclusion that we are the victims of an anti-trust/anti-competitive conspiracy. In the US such conspiracies are demonstrated by analyzing what might happen absent the conspiracy. Endocrinology would comply with medical ethics by putting patient welfare first and foremost, knowing medical science, and being honest in all professional interactions. Instead, endocrinology has produced a laundry list of torts that have damages larger than most country’s gross national product.
If you truly wish to put an end to this issue, you must take the issue to a court that is not controlled by eminence-based or evidence-based medicine. It must be a court that considers all of the evidence, not just that selected via evidence-based medicine. But to do that requires a substantial dedication to the cause. Unfortunately, that has not happened yet. One has demonstrate the ability for appropriate payment to the lawyers who would take on such a case and find law firms (it will probably take more than one) willing to “bet the farm” on becoming incredibly wealthy. Alternatively, the millions must be raised from those systematically abused by endocrinology.
By the way, over a thousand of the patient counterexamples indicated they were willing to testify. Can you imagine the first week of a trial dominated by patient counterexamples telling their stories of medical abuse?
There is reflections to be made about special interests of those involved in studies, which had to be disclosed only recently.
“Greater number of studies” as an argument could be a sophism, all other things not being equal. Tobacco companies producing hundreds of studies on the benefits of smoking is a good example. A marketing law is: if you repeat a fallacy so many times, it becomes the truth.
Any opposing conclusion is touted as freak coming from a loose canon.
The simple decision of not publishing is also an major factor for drug companies, vested interests or not.
The medical community can’t have much good judgement about unpublished studies.
The selection process behind meta analysis won’t include those and the “greater number” sophism will prevail.
If publishing do occur, number of years before publishing is also longer if conclusions are not what was expected.
My 2 cents.
Did you read what Dr Kenrick’s responded to the notion of a court action? It won’t work – it is an unviable prospect. What we need is a media campaign – but how can we orchestrate one? And, Dr Kendrick – are you, by your actions over statins, considering this cause?
To deny the potential for court action is to give the RCP, BTA, CCGs freedom from any retribution for their quite uncivilized acts. Consequently, they feel free to abuse you with symptoms that can be mitigated. Your choice is simple. You can be negative and suffer or you can make an effort to solve the problem.
Ultimately, these corrupt organizations fail because they fail at the basics of science, language, and logic. Relative to the post-thyroid functions in the peripheral tissue, the experts of endocrinology are dead wrong. In a decade of research, I have yet to find a single redeeming action by these organizations or their American counterparts.
Remember, people are paid to not know, really don’t know. Instead they spew falsehoods, like “nonspecific symptoms” and “functional somatoform disorders.” They make claims to excessive T3 variation, which are mathematically impossible. And most obviously, they ignore patient counterexamples to their medical lies and improper proscriptions.
This issues are not medicine but the basics of what medicine claims to be – science. Any court action that accepts “endocrinology expert” position is wrong because the “endocrinology experts” are wrong. They are wrong because they have failed the basic requirements of science. Court action must focus on this failing.
So deny potential action and prepare to suffer for the rest of your life as you become the pharmaceutical profitable waste land.
I was talking about court action about individual doctors. However, I did some work pro-bono where court action was being taken against NICE for creating potentially harmful guidelines. The court said they could make no judgement on medical matters as this was not within their remit/expertise. In short, the only organisation can judge NICE guidelines (from a medical/scientific perspective) is NICE. NICE will then say they rely on groups such as the RCP, the RCP will say that they are only providing guidelines (they do not have to be followed). There is, I am afraid, nothing to grab here. No court would ever dare question RCP/NICE guidelines. This is just the reality of the situation. You need to operate through media/politics and get groups with influence involved.
It is quite evident from the increasingly strident position taken by the BTA, RCP, and CCGs that they intend that no Brit will ever take T3 again sometime in the future. So you can take all the wisdom you wish, but if you can not buy T3 in the UK or import it, just what will all of the wisdom provided do you? And if all of the courts in the UK are so corrupt as to believe the patient-abusing “experts,” then your choices are quite limited, suffer or emigrate – but to where as endocrinology is an international abuser.
It is quite obvious that you frame this question as solely medical. IT IS NOT. The medical guidelines are allegedly supported by studies. The studies that claim T3 is useless are fatally flawed. The claim that T3 is dangerous can not be ethically tested, so it just opinion that has been shattered by mathematical analysis based upon the half-life of T3. And further there are thousands of patient counterexamples, which are recognized by real sciences. Consequently, one does not take this issue to medical organization hearings because their notion of science is largely eminence based. This issue needs to go to real courts with the hope of honest there, because there is no honesty in the medical courts concerning the existence of post-thyroid functions in the peripheral tissue in spite of hundreds of medical science references.
All you need to do is read Sackett etal. to learn how medicine has accepted the summary dismissal of medical science that has not been produced meta-analyses of multiple randomized clinical trials. The only demand made by medicine of these studies is randomization. The potential for bias in the design of the study, the selection of subjects, the selection of analysis techniques, and the overstatement of results continues unchecked. The three meta-analyses that support the proscription of T3 are exercises in junk science.
You may wish to defer to such junk. I don’t and will not.
You might try investigating the wisdom in my two editorially acclaimed medical journal articles, which are on the TPA website. (TUK is about useless.) One of them is introduced by asserting the criminality of endocrinology. My third will be published in June, probably.
Endocrinology does not do what the legal community routinely does, stipulate the definitions of critical terms – thus failing a basic standard of linguistic care to insure everyone uses the same definition. Endocrinology does not scientifically support its proscription of T3, because endocrinology does not comply with the basic tenants of science and certainly manages to create conclusions that do not logically follow from study’s design, subjects, and analyses. Medicine in general has no problem in violating the basic concept of science, counterexamples disprove concepts and require their abandonment or narrowing of scope. Endocrinology can not take their data under the conditions that the data was collected and honestly prove their quite overstated points and excessive proscriptions of T3.
Further, per a barrister, one should go after the medical community on the basic of ethics rather than their scientific inabilities. There is a complete lack of putting patients suffering from the continuing symptoms of hypothyroidism first and foremost. They don’t know medical science, which they are supposed to know. And they are not honest in all of their professional relations. They don’t even follow medical protocols properly. For example, the differential diagnosis protocol is routinely violated with the TSH only assay and then proclaim health when the the post-thyroid functions are deficient.
TSH is four functions away from the production of symptoms. T4 is three functions away from the production of symptoms. And yet endocrinology has the unmitigated erroneous claim to thyroid hormone health if these lie in the “normal range.” Any systems test engineer would point out the quite negligent oversight in this position.
So the moral to this is simple, don’t take the issue up with medicine’s kangaroo hearings and courts, take to where you might find an honest judge and jury. And then for the first week parade patient counterexample witnesses through the witness box.
Sincerely, Eric Pritchard
Eric – fancy starting a class action? I reckon any worthy solicitor would take on a case representing a few hundred clients – how about it?
A class action against? Manufacturers of T4, the RCP, NICE, individual doctors? Difficult to sue an idea.
I know a woman who was told by her physician that her thyroid was a bit low, but OK. One day, while on the phone in her kitchen, she fainted. In the fall to the floor, she broke a leg in two places. At the hospital she was told that her leg would be fixed that day and her “thyroid” fixed the next. This diagnosis was made by sight. Later, the internist suggested that breaking her leg was fortunate for otherwise she would have died in a myxedema coma.
She has been on T3 since – some 46 years. Now in her eighties, she is quite active. But the unscientific quacks would have killed her. And we still have quacks.
But in fairness to physicians, medicine via medical boards and councils, enforce what the chief quacks claim whether the claims are scientific or not. As recognized by the US Supreme and Federal Courts, this enforcement makes the alleged voluntary guidelines effectively mandatory because it far better to let the patient suffer than for the physicians to loose his/her license to practice. But then we must also recognize that medicine is self-regulated. So this problem is every physician’s. They should fix the problem, but they won’t.
The T4-only treatment theory depends upon unproven perfection in the post-thyroid functions in the peripheral tissue. Patient counterexamples demonstrate this assumed perfection does not universally exist.
Although me and my wife has suffered heavily from the ‘metabolic’ syndrome, myself with heart disease my wife with diabetes T2, I am not aware of having any problem with the thyroid. Could this be related to the metabolic syndrome? I admit that I am here quite ignorant. Could the very low carb lifestyle we are practicing ameliorate thyroid problems as well?
Still, what has made me ‘real sick’ during the late years is that whatever medical area I, for various reason, has ventured, e.g. heart disease, diabetes, mental illness or cancer, I have just encountered poorly founded medical dogmas and treatments.
Now this thyroid T4/T3 issue seems to add just a new item to my list of profound scepticism against the medical establishment.
This paper might interest you Professor Sjoberg.
In internal medicine, it is repeatedly proven that the association between thyroid dysfunction and diabetes mellitus is evident. Thyroid dysfunction chiefly comprises hypothyroidism and hyperthyroidism although the entity belongs to the same organ but with vast difference in pathophysiology as well as clinical picture. The interface between thyroid malfunction owing to diabetes is a matter of investigation. The literature suggests that polyendocrinal multidysfunction leads to stimulation of a cascade of reactions which are actually antihomeostatic in nature. For instance, hypoadrenalism as well as hypopituitarism exhibits strong linkage with hypothyroidism and consequently diabetes mellitus.
Recent findings have evidenced the intricate bond between subclinical hypothyroidism and diabetes mellitus that deceptively contribute to the major complications such as retinopathy and neuropathy. Cardiovascular events and micro- or macro-angiopathies are the counterreflection of resurgence of heavily disturbed lipid metabolism due to thyroid dyscrasias. It is also evident from the existing literature that insulin resistance bears an indispensable role in connecting T2DM and thyroid dysfunction. Novel molecules have shown the path for the development of suitable thyroid hormone receptor analogues to treat metabolic diseases. It is important to diagnose thyroid dysfunction in T2DM patients, and this practice should be inculcated in clinical settings with immediate effect to nourish further understanding of thyroid dysfunction and T2DM
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3647563/
Thank you,
Time for learning some more fundamentals!
Just now I am deep with my nose into the GMO issue trying to understand what it is all about and here getting fundamentally shocked as well.
Really, I don’t want to lose all my hope; how our establishment is abusing what I myself consider to be science.
Lorraine,
Thank you again for the reference and a really interesting reading.
As usual when I try to understand a new medical field I just get knocked down by the complexity involved in our physiology and especially when the hormones are involved. Not surprisingly I note the intricate interaction between most of our hormones.
It seems to me that our hormones have a kind of extremely sensitive homeostasis and completely on their own – a sort of very sensitive system on top of our basic physiology and when this ‘top system’ is being hurt by the latter it may go havoc and hit back.
With interest, as a Swede, I also noted at the head of the paper:
Academic Editor: Åke Lernmark
Googling on the name Åke Lernmark I find him as a professor at a Swedish university and a professor who has spent his whole research carrier on diabetes T1. What strikes me, reading what he has been involved with, is a manifest tendency to put the hope on a solution through a medication, in this case a vaccination of newborns, targeting one specific link in this stupendously complex web of a ‘sickness’.
Well done Dr. Kendrick. Your presentation at the TPAUK conference was compelling and your post, above, is a shining star in a sea of despair. As a nutritionist and therapist both in the UK and abroad, I have spent the past decade fighting against medical vitriol. As a health writer I have been threatend with prison and stopped from writing (temporarily). Three years ago I was diagnosed with hypothyroidism. It was extremely advanced because I had been trying to work out what was wrong with me, as an very fit and healthy person. When my GP diagnosed thyroxine for life due to my condition my hell began. I disagreed with him, with the specialist (a Professor) in the local hospital who was incredibly rude to me because I would not follow his directions of taking T4. I conducted my own experiment and found the pains I felt were a direct result of taking T4. The specialist told me I was imaginining it and that if I didnt follow his guidelines I would die.
I am now taking T3, but it was Dr Peatfield who finally created my wellness. He pinpointed that my adrenal issues were so bad that if someone didnt address them I could go on like this for ever, despite the T3. He was the Doctor who saved me.
My GP does not like what Dr Peatfield is doing and has threatened to stop my T3. I have, therefore, stopped going to see him, stopped having blood tests (a waste of time anyway, because now that I am taking T3 the usual T4 test does not show up – the doctor has admitted he doesnt undertand this). I just order my T3 on line and collect it. I am dreading the day I am called to the surgery to stop the T3 – I will enlist legal advice and support.
We need more doctors like Dr. Kendrick, willing to go against the norm (or what is known as the norm in medical circles). I am sick of having my life, and the life of others, controlled by Big Pharma, because at the end of the day this is what it is all about.
Hi Kathryn , you’re story parallels my own , although I am a little further now with patient named basis T3 NHS prescription, Levothyroxine makes me extremely ill at any dose. I too was rescued by Dr BDP and through meticulous recording as advocated by Dr BDP and also with help from Paul Robinson’s Recovering with T3, have been able to argue my case. At the moment I am trying to duck under the radar with reviews due and cannot take for granted my scripts will continue but here’s hoping. A change to gluten free has also had profound benefits. I added this tweak after my adult son was diagnosed with Coeliac Disease. Here’s to healthy active and interactive living. 🙂
I am so pleased to see your article Dr Kendrick. Surely one of those investigative programmes that the BBC, or Channel 4, etc. produce could take something like this on to expose the no. of people affected by mismanagement of their thyroid issues.
As an earlier poster said it is scandalous.
“‘You cannot be feeling better, because your blood tests say you were never unwell.”
Had much the same back n forth with someone about their aunt or something when I said there’s likely no point trying to get her cholesterol down. He comes back saying when on such n such a drug her blood tests were “good”, low LDL etc, but she had pain issues and general poor health. Had to go off the drugs for some reason, she felt much better and wasn’t in pain any more, but her blood work was a nightmare so she went back on them.
What?
I’m almost crying from frustration reading this article because this is what happened to me. I was diagnosed with hypothyroidism 2 years ago (went private) after spending 7 years taking every antidepressant and anxiolytic available in the market. I asked for a referral but GPs wouldn’t give it to me, saying my blood tests were normal. I was a zombie with pain and suicidal thoughts. I did a therapeutic test with levo. On the 5th day I had an energy I forgot it existed. I convinced the GP to get levothyroxine as a repeat prescription. Now I’m having symptoms again and I don’t know what to do…what about 7 keto dhea? Thanks for this post and all the comments. It’s been very enlightening
We’ve been waiting for this one Dr Kendrick! & not only since the TUK conference in October – by George!
Thank you for highlighting our predicament – things are definitely on the turn.
Anyone needing support can visit Thyroid UK (no strings attached!) 😀
https://healthunlocked.com/thyroiduk
Just thought I would share the following site.
Stop the Thyroid madness.
http://www.stopthethyroidmadness.com/
Thank you for writing this article! I really hope things will change for thyroid patients.
I am yet another patient who has thankfully had a shorter struggle than others but find it disgusting that people are treated like this in our health system.
I was prescribed Levothyroxine which made me feel progressively Ill after the first few weeks. I saw an endocrinologist in the NHS who wouldn’t take on my concerns about feeling much worse and laughed at me when I suggested possibilities of why I might be feeling worse (reverse T3 – he told me there was no way I had this as it would show in my TSH results, adrenal issues – he said there was no way I had this because if I did I would be in hospital) 2 months later on Levothyroxine (I had 4 months on it in total) I was bedridden for nearly a month. Ive now been off work for 2 months (I’m a successful teacher and I love my job) I am unable to walk more than 10 minutes without it making me very ill, spend most days in bed in a lot of pain and I’m dependent on my loved ones looking after me at the moment. Thankfully after many emails batted between me and the useless Endo he’s referred me for a 2nd opinion to an Endo who specialises in thyroid problems and so far has been amazing! He instantly knew I had adrenal issues after describing my symptoms (I showed him my 24hr saliva adrenal test, which has he wrote the results down) and he’s now testing my pituitary, adrenals and finding out what may have caused the adrenal problem in the first place. He actually seems to have an investigative nature and is keen to help me get my life back. With his help I should be able to get back on my feet and have a fun adventure filled life and career again.
Thank you so much Dr Kendrick for exposing this shocking situation. I am one of many whose life has been turned upside down by the NHS and now now longer trust them with my health.
Shame on the NHS and shame on those GPs who repeatedly told me that I was ‘depressed’ and left me with a body that was shutting down and heading for a coma.
Dr. Kendrick another great blog for which I sincerely thank you. It is not an area that I normally follow but I would like to ask how it is that you can find so many “black swans” in current “medical beliefs” while so-called experts are so unaware of them?
“The RCP’s guidance is based on the opinion of an expert panel which was temporarily formed for this purpose. The evidence they used to form their individual opinions has not been collated and therefore the RCP cannot provide any evidence list”.
This seems to be a root cause of so much “current evidence-based medicine” that is based solely on the opinions of a few selected experts and not evidence. I really despair at this “opinion based” medicine as promoted by NICE and some charities and their experts.
Mike. I do a couple of things. First, I listen to what patients have to say, then I try to look at the evidence with an open mind – or as open as I am capable of. Nowadays, I don’t need to look for Black Swans, people have started to contact me with (it sometimes seems) endless tales of the medical profession getting it horribly wrong. What I am most annoyed by is the ‘we know everything and we know best’ attitude of too many ‘experts.’ There seems not a shred of humility or intellectual curiosity. ‘That’s funny’ is not a phrase I expect to hear from them any time soon.
Thrilled to know there is still someone out there with intellectual curiosity: Thank you!
Thank you. It seems such a long time ago that the concept of open-mindedness in research was pounded into me at the LSH&TM. Where has clinical medical research gone wrong?
Yay! Thank you for believing “us”! The hardest battle is not with being ill, it is with the current medical establishment.
‘Why can’t I have T3 doctor? I feel so much better when I do?’
‘Because I say so, now go away.’
There is another version of this conversation that has been reported by patients on thyroid forums multiple times. It goes like this :
‘Why can’t I have T3 doctor? I feel so much better when I do?’
“Taking cocaine makes people feel better too, but we don’t prescribe that either.”
Oh you must be talking about Dr X – before I knew better, i went to a BTA ‘support day’ were Dr MVP insulted us all from the podium. I put up my hand and asked that very question, and his reply was, verbatim, what you said there ‘cocaine would make you feel better’. He was the most obnoxious, vile doctor I’ve ever had the misfortune to meet, and I walked out and cancelled my membership the next day. It was such a belitting, insulting reply – we want to feel better, not HIGH. That man exemplifies exactly what is wrong with endocrinology. I believe he is a leading light of the BTA, more’s the pity …
They shouldn’t be doctors. It used to be a ‘vocation’ one upon a time. It would seem that isn’t the case any more and we know more than them because we have to go through a quagmire to find one that suits, even if it means purchasing hormones ourselves. This is from an archived site as Dr Lowe died 2 years ago. He never prescribed levothyroxine and some links within this may not work but he says that :
Most endocrinologists subscribe to the practice guidelines of the American Association of Clinical Endocrinologists. When a patient such as you sees one of these endocrinologists, he’s likely to take her off T3 and switch her to T4-replacement. As many patients have told us, when an endocrinologist switched them to T4-replacement, they became ill and dysfunctional again. These reports are consistent with studies that show the ineffectiveness and potential harm of T4-replacement. The studies show that T4-replacement leaves many patients suffering chronically from hypothyroid symptoms[1][2][3][4][5][6][7] and gaining weight they can’t lose through dieting and exercise.[8] The patients are also likely to use more drugs and develop one or more of several potentially-fatal diseases.[9]
Potential harm from T4-replacement has thus been scientifically documented. In view of the risks, you must consider for yourself whether you’ll permit your therapy to be changed from Cytomel to T4-replacement. If you decide not to permit it, you can seek out an alternative doctor who understands how ineffective and harmful T4-replacement is for many patients. Alternative doctors are generally more cooperative than conventional doctors, and most of them take the time to learn the cause of troubling symptoms. Because of this, you should be able to find one who’ll help you ferret out and correct what’s causing your occasional symptoms of overstimulation.
http://web.archive.org/web/20101030140800/http://drlowe.com/QandA/askdrlowe/t3.htm
and another excerpt from same link an they try to frighten us about T3:
Now, to address your rheumatologist’s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement re T3:
“NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine.” (Medi-Span, Inc.: Database Version 97.2. Data © 1997.)
This statement makes a fact perfectly clear: When used sensibly, T3 is extraordinarily safe among prescribed drugs. When I say extraordinarily safe, I’m comparing T3 with drugs such as the amitriptyline which your rheumatologist prescribes for you. Below is a list of potential harmful effects of amitriptyline. This list comes from the Physician’s Desk Reference, 53rd edition, Medical Economics Company, Inc., Montvale, 1999, page 3418.
Do you think Drs are taught that condescending attitude, or do they come to the field with it firmly in place? My internist, when I suggested a trial of “natural” thyroid treatment, said, “Dog poop is natural, too. And we don’t prescribe that!” What a putz!
I just watched a fascinating video from a local chiropractor who treats thyroid dysfunction. He’s into functional medicine and studied with Dr Datis Kharrazian (who wrote Why Do I Still Have Thyroid Symptoms When My Blood Tests Are Normal?). He claims that most thyroid dysfunction is secondary to other problems, such as autoimmunity and other immune system problems, poor nutrition, adrenal malfunction, etc.; and he claims that getting these other issues under control can help alleviate or at least minimize the thyroid dysfunction.
I was ready to schedule a consultation until I found his program is much more expensive than I can handle (he wants a $3K to $6K commitment up front!). I’m planning to investigate some of the other options I’ve now read about on these pages.
A Registered Doctor brave and willing to speak out and tell the truth about what is truly happening to thousands and thousands of patients who are kept ill, and will eventually die of diseases that low T3 Hypothyroidism causes. Thank you Dr Kendrick
Thank you Dr Kendrick
I shall try to share with as many other patients and practitioners as I can.
I am a post nephrectomy patient with Hashi’s.
After a battle of 10 years I am now on T3 only ( I need particular brand EU registered, with the added bonus it costs the NHS far less per prescription) The UK licensed equivalent is empirically variable for me and non- effective
The additional tweak for me was to go gluten free after my son’s late diagnosis of Coeliac disease.at the age of 30. Both he and I are now well. The changes are profound.
Sadly, I had been fobbed off with various wrong diagnoses over the last 30 years from non responsive post natal RA, to depression ( I refused SSRI’s) to ME/CFS, menopause, age ( at whatever age I was), whilst my son had been told he had Raynaud’s, was a teenager. and worst of all “must be hiding he was on recreational drugs”. At the time he was too ill to have any recreation at all never mind play with drugs! He and I now find that not only is the TSH test so unreliable, if conversion at cellular level is the problem but also Coeliac diagnosis efficacy is so poor. It seems both he has IgA TG6 anitbodies rather than IgA TG2 which is the routine test in UK.
Meanwhile my daughter is struggling after a 2nd miscarriage due to PCOS – another condition which reserach evidence suggests, can be the result of untreated hypothyroidism. She is hoping this time the endocrinology dept will accept her as a patient. So far they have refused on account of “in range” TSH.
We thank you for representing us in your work.
Kind regards . Fiona
I am surprised. No word about the European Guidelines about the treatment with T4 plus T3. The UK was involved.
http://www.karger.com/article/fulltext/339444
Dr. Kenneth Blanchard’s books explain one tremendous problem with all the clinical trials of T4+T3 therapy: they used much higher relative doses of T3 than are optimal for the great majority of people. In the longer term that results in T3 overdose and feeling crappy. Though in the short term, as has been observed, people can feel that their lives have been returned to them as the awful T3 deficit resolves, but before T3 overshoots. Imagine if clinical trials to evaluate insulin for treating diabetes had used 10x the optimal dose; all the dead bodies might have tended to discourage any further use of that therapy.
All the hand waving about figuring out the optimal T3/T4 dose ratio based on the supposed ratio of T3/T4 production in the normal thyroid is just ridiculous. How can anyone seriously compare the normal physiology with that produced by oral administration of a hormone that passes through the digestive system and liver before entering the general circulation? The only way to determine such things is by trial and error, unglamorous though that may be. After several decades of doing just that Dr. Blanchard found that much lower T3/T4 dose ratio usually works best (with considerable inter-individual variation, however).
That needs to be tested in a serious trial. Some of his patients, including me, have talked about trying to find funding for one. Though one big problem is that the need for very careful individual T3/T4 dose experimentation and optimization would make blinding quite challenging. Very definitely a case where one size will not fit all, though at 10x the generally proper T3 dose very few will do well in the long term, as the trials have verified.
Well doen Malcolm hear hear – as a practising GP i freelnce (locum now) to avoid the crap of most of what we are supposed to do and wholeheartedly agree with all you have written – hav eyou looke at the nonsense around b12 yet !
I am well aware of the complete nonsense around B12. So much to do, so little time.
David,
Perhaps you could elaborate a bit about this.
I discovered one piece of that nonsense. I was told I must have pernicious anaemia because of my low B12 level, and that I would need regular injections of B12 for the rest of my life. However, I had been taking omeprazole in order to take diclofenac, in order to deal with problems caused by Simvastatin (I have already described this in an earlier thread here). My low B12 was because the omeprazole gave me a high stomach pH! Fortunately I was re-tested after getting free of all the above, and found to have normal B12!
I imagine a lot of people may end up on regular B12 injections that they don’t need.
Hi David, I’m staggered but pleasantly surprised too, that you were offered injections for life based on one low b12 reading. I pleaded for years for the most basic b12 test and was refused as my Mean Cell Volume wasn’t raised. It wouldn’t be as the iron deficiency masked that. I too had been on Omeprazole for years, for reflux caused by too little, not too much, stomach acid (not that any doctor bothered to establish what was causing reflux and it’s no surprise that Omeprazole was the most prescribed drug in Scotland two years ago). When B12 was finally tested, it was on the floor but I was told I could supplement ‘if I wanted’. Coming off the Omeprazole didn’t raise the levels much as I have the peculiar anemia that seems to accompany Graves disease.
B12 injections should be started in the presence of neurological issues, where there is suspicion of B12 deficiency/anemia, according to new updates. In your case, it seems the case history was ignored in favour of the lab tests, yet again. What a surprise.http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4
Lorraine,
I guess my doctor did follow the advice about B12 because at the time I was complaining about severe cramps and additional weakness in my polio leg – so I presumably that counted as neurological symptoms! Of course, the cramps and stuff were caused by Simvastatin (which had been problem free for 3 years). I stopped the Simvastatin, and everything is back to normal now 🙂
To Mary, May 5, 2015 at 10:56 am
Legal action would be very difficult indeed. The NHS has, effectively, unlimited funds when it needs them. They can always find money to defend themselves. Even if the courts were to find in favour of a patient the NHS is likely to just appeal,… and appeal, …, and appeal, until the person who was suing ran out of money.
Although it is about NHS whistleblowers rather than patients, this article gives a flavour of what tactics they stoop to :
Click to access Shoot_the_Mesenger_FINAL.pdf
Thank you for the link to a fascinating and shocking article. Well, it should be shocking . . .
Have we even looked at the link between hypothyroidism, its effects on low oxygen levels and cancers that thrives in anaerobic conditions? Just asking…
Magnesium can also be affected by long term use of these Proton Pump Inhibitors. I have really nothing good to say about these drugs. http://www.pulsetoday.co.uk/sign-in?rtn=gps-urged-to-test-magnesium-levels-for-all-patients-on-ppis/13862685.thread#.VUj-rSFViko
I learned a lot reading all the write-ups by various people and Dr. Kendrick. My sister in Australia would learn a lot by reading the write-ups etc. I have to let her know that there is a lot to transfer.
i am trying to find a specialist that can help me with taking NDT but not having any luck. Have looked online on thyroiduk.org and tpauk but cannot see any lists. Please let me know if you can recommend someone – my email is clairedent@me.com Many thanks Cx
They are not available online you have to JOIN TPA and Thyroid UK’s forums and then request a list, as good doctors are hounded the list is kept confidential, it would be professional suicide for that doctor list to just be available on the web.
I really couldn’t agree less. Those of us who choose to eschew our prescribed starvation ration of levothyroxine do not all become ‘the pharmaceutical profitable waste land’ anymore than we ‘prepare to suffer for the rest of…’ our lives.
Instead we take our wisdom from TPAUK and TUK and the few such as Dr Kendrick who are prepared to rail publicly against the outrageous and harmful wisdom of medical convention. We do not offer ourselves at the altar of ill health with a sigh and return to tending kittens and sewing our embroidery.. There is abundant misogyny at work here. I have no doubt that some of those expounding that nothing but T4 is necessary are laughing up their sleeves at the resultant disservice paid to so many women who are left exhausted and unable to achieve in the workplace or at home.
So long as these repulsive reptiles continue to enjoy their place in the sun and the judiciary and self regulating medical organisations continue to be run by the male of the species, I fear we would be beating our heads against a wall bringing such a case before the courts, unless a wide ranging and vocal publicity machine is built.
The reptiles will continue to wring their hands and snigger at yet another ‘woman’s problem.’ And one day, the trailblazing Sheila Turner and tireless admin staff at TUK will prevail. Ave, Shaws, Clutter, helvella et al
Agree less with what?
Rapunzel, do you think male patients don’t receive misguided and poor treatment from both male and female doctors? Do you truly believe male doctors, whatever their faults, are deliberately hurting women whilst giving helpful advice to men? When a woman doctor gives me poor advice, as happened recently, should I assume she hates men?
You refer to doctors, presumably male, laughing at their female patients. You twice call them ‘reptiles’. If a man wrote an article referring to women in this unbalanced and grossly insulting way he would deservedly be seen as a semi-deranged ‘misogynist’. Why is hatred from women towards men more acceptable than from men towards women? They are equally foolish and wrong.
Stephen Town, I agree with much of what you say. Poor treatment, arrogance, and rudeness can come from both male and female doctors, and can be directed at both male and female patients.
But it is a fact that throughout my life I have had to deal with lots of gynaecologists, the vast majority of whom were male. I’ve been registered with quite a lot of GPs throughout my life and most of those were male. I’ve never seen an NHS endocrinologist myself, but the ones I’ve read about were mostly male. It goes without saying that gynaecological difficulties are exclusively female. And the vast majority of people with thyroid problems are female.
I’ve read that there are more females training to be doctors now than there are males. I imagine the trainee females will suck up and develop the same beliefs and culture that is currently so widespread amongst the males. My experience of female doctors would certainly suggest this is already the case. And it is also true that females go to the doctor far more than males do, so we are far more exposed to the rudeness and arrogance that are so common.
When your fertility, your career, and your quality of life has been ruined by ill health that could have been at least partly treated if the doctor had been competent, and the people who were supposed to help you were mostly male, the temptation to blame men is difficult to overcome.
As you can tell, I do (very little) censoring on this blog. Usually I only only block adverts, completely bonkers posts (where I have no idea what is being said), or personal defamation. I think that a discussion whereby men are getting insulted is OK, but does not really help us to move on. My own (male) view is that women are more likely to get badly treated, patronized and ignored than men. You see it in all walks of life and in most cultures. You could spend the rest of your life discussing why this happens (and probably not get very far). However, we are where we are. If we wish to try to improve the way that people with thyroid problems (not quite sure what the best overall term may be), you have to accept where we are, look at the best options for change, and go in that direction. Where are you going to get heard? In the UK there are two easier options. Media and/or politics. Attacking the medical establishment head on would not be my recommended course of action. Finding a keen MP who wants to make a name for himself/herseif, by supporting a patient campaign. And find a health editor, or two, or three, to promote the campaign. Press and politicians can be brought on side, and used.
When I was first diagnosed with hypothyroidism twenty years ago, an osteopath who treated me at that time told me she had previously been a secretary to an endocrinologist who was a Professor and head of department at a famous teaching hospital, who was also a “leading light” in Thyroid research. She told me that he was responsible for setting the dosage levels of T4 only medication, and that he had deliberately set them at a much lower than optimal level, due, she felt, to his misogynist attitudes to women. She became disgusted by his presentations at conferences, by his influence on NHS national guidelines, and by having to type his papers, and left that job, going on to train in osteopathy. I happened to know this man as I had been referred to his department for hormone testing. He was extremely arrogant and pompous, and the treatment one of his junior doctors prescribed almost killed me. I was on Omeprazole at that time and I was prescribed DDAVP (desmopressine). The combination took my blood sodium level down to 109. After three days in intensive care (in France, I was on holiday), under the care of a wonderful urologist, and off both meds, the level rose and over a period of a week returned to a normal 139. A colleague at work, a psychiatrist, commented that she did not know that 109 could sustain life. Needless to say, I never returned to taking those meds, despite being warned by the Prof’s junior doctor that it would kill me, and I am still alive.
So I tend to agree with your assessment, and yes, there are also men who suffer from hypothyroidism, but they are very few by comparison with women.
cadent04 – you will NOT find links to a list of doctors who will prescribe NDT as TPA and TUK would need the written permission of all such doctors to publish their names on a public list. This is why we do not publish their names. If you are a member of these forums, then ask the owners to help you,
I know the RCP claim in their statement about primary hypothyroidism that ‘the only validated method of testing thyroid function is on blood’ it goes on to say that it needs to include TSH and FT4. My question is, can anyone give a reference for the validation of thyroid function tests? Has the TSH test actually been validated and if so where can we read the validation document or paper?
I do fancy a class action and have been working on getting legal action for years. However, lawyers, who make a living with successful class actions, have to open their minds to the same issues expressed here. They immediately go to expert medical witnesses when the issue is not so much medical as the bastardization of the fundamentals of science, logic, and language.
After I finish with substantial paying job, I plan on re-writing my case description and attempt to find evidence of the corruption that circumstances indicate exist. The proof of an anti-trust/anti-competitive conspiracy in the US is what would the parties do absent the conspiracy. Endocrinology might comply with medical ethics.
But then, I will have two thousand patent counterexamples, of which 1400 expressed a willingness to testify. And that is more than all of the subject in all of the anti-T3 studies. Perhaps there is a court that will agree with the basic tenants of science – a truly scientific concept can not have any, let alone two thousand, counterexamples.
By the way, you can thank Thyroid Patient Advocacy for taking this very basic concept of science and creating the Monkey Survey to find these counterexamples. But I am also quite sure that the endocrinology establishment will not respond simply because they aren’t required to – until the matter gets to a real court.
And Dr. Kendrick, my work is more than just an idea. It is based on training and a half-century in the hard sciences, where results matter. And getting proper results means proper attention to the basics, quite unlike endocrinology in the matter of post-thyroid functions in the peripheral tissue, which they ignore quite negligently. I know from experiences, if the results aren’t right, then something is overlooked. But endocrinology provides doctors with excuses for failure, then enforces the means to failure, and consequently the use of unscientific excuses such as “nonspecific symptoms” and “functional somatoform disorders.” Really? If real science were applied to endocrinology, this problem would disappear. If real linguistic care and logical consistency were applied to this problem, it would disappear.
Virtually all of these people are the victims of willful negligence. It is time to quit moaning about the impossibilities and get organized to fight. A journey is started by the first step. It is certainly not started by claiming it is impossible.
Sincerely, Eric Pritchard
Eric, whilst I admire your passion, the problem is – inherently – who can you take to court, and on what basis?
Individual doctors: No, they are just following ‘guidelines’ which they must
Endocrinologists: and who will be asked to testify against them… other endocrinologists (what do you think they will say?)
NICE: Not a chance, that route has been tried.
RCP: Taking a Royal College to Court, accusing them of… what?
Maybe I am wrong, but I believe that if you go down the legal route, you are attacking a point of strength. The stratagem (of the thirty six stratagems of war) that is most likely to work is, as follows: Never directly attack an opponent whose advantage is derived from its position. Instead lure him away from his position thus separating him from his source of strength. Entice the tiger to leave his mountain lair.
Not disagreeing on the difficulty of using the law, but what if, for example, the so-called guidelines contain demonstrable errors. Certainly the BTF/ACB paper does contain such an error, though it would probably be regarded as a simple typo of no significance. But if errors of similar obviousness but greater significance were found, would that not provide a basis? Though possibly a judicial review would be a more appropriate approach?
It is a pity that Dr John Lowe died through an accident as I am sure he would have responded to any queries you had. This is an article that he wrote and he also states that some of us need suppressive doses to feel well. Many doctors keep us ‘in range’ despite continuing symptoms:
Click to access lowe.critique.T4.T4.T3.studies.pdf
As I responded elsewhere, neither the BTA or RCoP responded to his article on Natural Dessicated Thyroid hormones which enable many to recover their health. They never responded. Levothyroxines has been withdrawn many times for various reasons.
http://www.thyroidscience.com/Criticism/lowe.3.16.09/bta.rebuttal.htm
What about – accusing the RCP of deliberately misleading doctors and patients by publishing a statement that clearly says there is ‘overwhelming evidence’ backing up their advice when in fact this is not true? The evidence they claim does not exist. What does that say about the Royal College?
Would a paper get published in a peer-reviewed journal with claims of overwhelming evidence but no references? No, the author would have to produce the evidence in the form of references. The RCP cannot do this and yet doctors all over the UK tell their patients that they are following the guidelines. Guidelines that lie about the evidence.
It may be worth looking at writing a paper to counter the RCP assertions and bring together all of the evidence supporting the use of T3 (and other issues)
Just wondering here about luring the tiger from his mountain lair (do tigers live in mountains, by the way?). Why could not the society of endocrinologists, NICE and RCP be questioned before the European courts?
I have absolutely no knowledge of the protocols here, as attested to by the question itself, no doubt. but my thinking is that, given the successful treatment of hypothyroidism for example has been well documented for many, many decades, and the introduction of T4 only therapy relatively recent, and given that there are papers to refute the T4 only stance alongside a massive body of patients (no pun intended) who could contribute anecdotal evidence of such magnitude as to tip the balance of probabilities that T4 only treatment has ranged from useless to damaging in our cases, and given that T4 only therapy is advised in the strongest terms by all of the above institutions, then again, why not? It would be complicated, surely, but are we patients who have had to resort to trying to obtain for example, NDT, when NDT is proven to be efficacious in almost countless cases, having our human rights violated?
The EU (political system) may be a place to lure the tiger. BTW I have no idea where tigers live, I merely quote from the 36 stratagems.
So, how might we take the fight into the European courts? Human Rights? Disability Rights? After all, isn’t there a movement now to take the Government to the European Court of Human Rights over the discriminatory practices towards the disabled that are in violation of the Human Rights Act?
And who might be taken – a sample of offending doctors from the entire sea of misprescribing practitioners? Sir Andrew Dillon, as the representative of NICE? Prof Jane Dacre, head of the RCP?
Suggesting the RCP, BTA, and CCGs are a point of strength is only right if you believe they can not be discredited. Sure they have the medical credentials but they are not scientists. They obviously have not examined in detail the studies that they depend upon OR they depend on your not examining those studies in detail. I have been studying this micro-niche of medicine for more than 11 years with nearly a half century of experience in the hard sciences of mathematics (BS) and engineering (MS). I have 39 patents in seven arts. Plus papers in engineering and medical journals. Both of the medical journal articles were graced with editorial acclaim. My third will probably be published in June.
I realize that physicians rarely indulge in abstract mathematics – that is where abstract thoughts are connected by logical inferences. Further they rarely take engineering courses where learning how systems function work. And not many study law either, which has as a basic tenant that the definition critical terms must be stipulated. Endocrinology does not stipulate critical terms. If they did and maintained logical consistency, this problem would not exist. Endocrinology does not disclose the whole of the Greater Thyroid System from the brain to the production of symptoms. If they did and were honest then we would not have this problem. But they prefer to hide half or so in their “peripheral tissue.” which they generally assume operates perfectly. Otherwise they would not proscribe the operative hormone within the cells. And they depend upon illogical, unscientific studies and philosophies. Furthermore, with the recent survey to find counterexamples, we found two thousand to add the the ones in medical science history. Per Sir Karl Popper’s accepted philosophy on science, no concept is scientific if it has a single counterexample – we have thousands.
There evidence-based medicine is a means to escape the need in real science to reconcile their results with medical science. They do this by simply ignoring medical science. See the BTA cited Grozinsky-Glasberg, et al., 2006: “ThyroxineVersusThyroxine-Triiodothyronine Combination Therapy Monotherapy for Clinical Hypothyroidism: Meta-Analysis of Randomized Controlled Trials.” They demonstrated in Figure 1 how they ignored 98% of the related medical science including the 68-year-old warning that thyroxine does not work for everybody – an observation that was confirmed by Means in 1954. Check out the context versus the selection of subjects. Check out the relative therapeutic strengths of the tests. Check out the low-occurrence rate suppressing analyses – averaging. And then check out the conclusion. Putting the context together with the conclusion says that those with the continuing symptoms of hypothyroidism and just continue to suffer. And that is hardly ethical.
Perhaps you should read my paper “Reducing the Scope . . .” It is available on the TPA website.
The Webster Timelife compilation of study citations on triiodothyronine lists approximately a thousand from the 50’s to 2007. Their compilation on the mitochondria over a similar period lists about 400. But Grozinsky-Glasberg, et al. ignored all but three studies done by randomized clinical trials. In fact Grozinsky-Glasberg, et al. only included studies based on randomized clinical trials because Sackett et al. wrote that such summary dismissal was right and proper.
The RCP has declared its policy statement is the standard of care. That standard of care prohibits the prescriptions of T3 in any form. This is not based in science. They are negligent, a tort, particularly when the RCP has its GMC close at hand. The logic in the recognition of the US Supreme Court ruling in Goldfarb v. Virginia State bar can be used. It claims enforced guidelines are not voluntary but mandatory. And the CCGs are pressing the proscription home, as if it were ethical to make medical decisions for patients they haven’t examined and as if their limited study hasn’t counterexamples.
The BTA and the RCP, relative to the medical niche of post-thyroid deficiencies in the peripheral tissue and the continuing symptoms of hypothyroidism, are not ethical. They don’t put patients first and foremost. They don’t know or don’t acknowledge medical science, And they are not honest. You just can’t proscribe the operative hormone of the peripheral tissue and be ethical. After all they are allopaths and study bodily deficiencies. Just why aren’t they recognizing these deficiencies?
Sincerely, Eric Pritchard
Eric, I agree with everything you say. But the law can only operate where it can operate. You cannot, to take and extreme example, take the Queen to court. She is the head of state and is thus, above the law. As are all heads of State. If she shot three people dead, there is no court in the land that could convict her. The courts are hers. I know that you cannot take NICE to court, other than to challenge whether or not they have met the terms and conditions they are supposed to operate under i.e. did they consult all stakeholders. Is the RCP an entity that can be sued… don’t know but I doubt it. CCGs…protected by NHS England. Your fight cannot take place where the rules do not allow a fight to take place. You need to find a place that can consider your information, and come to a decision in your favour. There is no place in the UK that I can see. There is no higher ‘scientific’ court.
What great comments to my opinion!
All those windmills!
I want a fresh horse to join the battle!
My Rocinante is a little tired today!
Eric, if you’re in the US, please sue the US government for their horrible dietary advice, which is not based on (and has never been based on) randomized controlled trials. In my daughter’s school, for instance, she cannot get full fat milk but can get non-fat, highly sugared chocolate milk. In what way is a bunch of sugar better than some fat? Plus, she’s also been forced to learn “my plate” (used to be the “food pyramid”), and I have to tell our 7 year old that everything her teacher told her is not supported by scientific evidence and is most likely wrong.
Sigh
From my perspective I believe that the only practical way forward to (ultimately, and it won’t be soon) change the thyroid diagnosis/treatment paradigm is to provide the scientific/medical evidence in the form that the medical profession will accept – i.e. well thought out studies that brook no denial and demonstrate what is actually going on and how to respond by suitable treatment. That’s what we’re trying to do. Tackling the job from an anecdotal point of view (i.e. patient by patient) cuts no ice – no notice is taken and the evidence is merely dismissed as “anecdotal” and therefore unworthy of attention. But facts cannot ultimately be denied – they may be ignored for a while, but eventually have to be admitted and acted on.
Another way forward might be to get public opinion to force a re-examination of the existing guidelines. If enough people were to make enough noise by contacting the relevant bodies/ politicians, and getting press coverage of the response to that contact it might work faster than providing fresh evidence.
Another area which would benefit from press coverage would be public awareness of the symptoms of hypothyroidism. How many people, I wonder, are suffering from this but think they are just getting old, going through the menopause, worn out because they’ve had a baby, suffering from ‘stress’ due to work pressures or any of the other things we tell ourselves when we are feeling below par for years on end? How many years are lost by how many people for this reason?
I’m quite cross with myself because I went on for 10 years getting ‘old’ a lot faster than all my friends. It wasn’t until I went to the doctor recently after a worrying spell of utter confusion that I discovered I had hypothyroidism. When I looked into this I realised that my thyroid must have gone phutt a long time ago. All those wasted years!
One of the things I would like to see challenged is the practice of taking a TSH level of 10 as the minimum starting point for thyroid treatment. This is roughly twice the top of a reference range which is already absurdly wide, and approximately ten times the TSH level that a healthy person would have. These days some doctors are so scared of treating thyroid disorders that they are reluctant to treat until TSH is 20 or more, because a TSH of 10 is deemed to be a minor problem, or the doctor assumes (hopes?) the patient has a resolving thyroiditis so there is no need to re-test for another year.
Some people are “lucky”. Their thyroid fails quickly, their hypothalamus is up to the job of producing TRH, and their pituitary produces sufficient TSH. The failing thyroid is spotted, perhaps even within a year, and the patient is commiserated with and taken seriously because they have an astronomical level of TSH of 100 or more. This “lucky” person does not have to spend many years slowing down and acquiring health problems. The chances are good that adequate treatment will bring their TSH into range, while simultaneously fixing all their symptoms.
Then there are others who have a “borderline” thyroid, and no treatment is deemed necessary. Twenty years later the TSH is still borderline, because the hypothalamus or the pituitary is damaged and incapable of producing sufficient TRH and/or TSH. So the TSH may have risen a little, but not enough to reach the magic 10. So the patient has suffered hypothyroid symptoms for twenty years and has acquired a reputation as a whinger and hypochondriac. Every single appointment with a doctor is going to be coloured by that reputation for the rest of the patient’s life.
If someone has high blood sugar there is no requirement to wait until the patient’s blood sugar is twice the top of the range before treatment. In fact, most doctors can’t wait to chuck treatment at you. The same is true of blood pressure over 140/90. Doctors will try and force treatment on you as soon as your BP hits the magic numbers.
One of the many effects of my untreated hypothyroidism was to give me chronic and debilitating chest pain. Nobody could find a cause. I’ve been to A&E twice, and been admitted for tests to check for heart attack five times over the last 4 years. How much did that cost? Cardiology appointments and tests, the cost of ambulances, paramedics, doctors, hospital beds, and testing must have been enormous.
I’ve fixed my own chest pain now and it turned out to have been caused by severe anaemia and untreated hypothyroidism. I treated my anaemia, and paid for my own supplements and regular blood testing, which helped a lot. I also experimented with different types of thyroid medication, and am currently taking T3. The longer I stay treated the better my heart feels and the less pain I have. It’s been over a year since I went to A&E or called an ambulance for severe chest pain. And yet one cardiologist I saw told me that T3 was bad for the heart!
Re: TSH level to diagnose hypothyroidism
My endo, Kenneth Blanchard, determined many years ago that there really isn’t any rational TSH cutoff for diagnosing hypothyroidism. One reason is that the optimal TSH for individuals appears to vary quite considerably, so what might be a perfectly normal TSH for me could mean hypothyroidism for you.
Dr. Blanchard commences a low-dose trial of T4 for any person whose signs and symptoms seem consistent with hypothyroidism (assuming their TSH isn’t in the frankly hyperthyroid range of course). With a few weeks the people who genuinely need thyroid replacement report feeling much better. Even it’s occasionally a placebo effect, who cares if the person feels better? The low T4 dose such a person would receive is harmless, and Dr. B. does monitor TSH and free T4 to make sure no one gets way out of range. T3 is not needed for such a therapeutic trial, though he generally adds it if the trial is successful (usually via compounded thyroid extract to get the low T3 doses he uses plus time release).
Many people who were denied treatment by other endos due to “normal” TSH have reported life-changing improvements (though of course some do not because their problems lie elsewhere). This is one but one aspect of the “functional” approach Dr. Blanchard takes, explained much more fully in his books.
Dr Kendrick you capture the issues that countless people are experiencing so well. If you can see what the problems are and patients are saying the same thing to their doctors why can’t the rest of the medical profession?
You end your blog by saying you would like it to stop. We’d like it to stop too.
What can we, together with enlightened doctors like you, do to change things? My sister is bedridden and her family broken due appalling management of Hashimoto’s over thirty years.
I’m Graves and hypothyroid after RAI but lead a normal life only because I got educated and refuse to stand for any of this nonsense from the medical profession – I’m not afraid of them and refuse to be bullied. I learned very quickly after a missed diagnosis, suffering a thyroid storm, then myxodema coma from sheer neglect after RAI that the medical profession cannot be trusted with thyroid conditions. Sadly my sister thinks her doctors must know – that’s why she’s even been committed and forced into electric shock treatment, and prescribed every pain killer and AD known to man. That’s the madness of it all. Keep up your great work. You are a breath of fresh air. RIP Doctor Skinner – dreadfully missed.
Very interesting article – I have been told my levels are ok – but still feel awful – no energy – aching joints and weight gain despite a very healthy diet ( tried 1200 calories for 5 weeks and lost 1lb) But no real help from my doctor . It is very frustrating . And I know I am not as bad as a lot of other people.
Always ask for copies of your blood test results, including reference ranges. Then research what they mean, join appropriate forums and ask questions. You are legally entitled to copies of your results, and providing them to patients should not be treated by the practice involved as a means of raising revenue. Costs of ink and paper can be covered but that is about it.
http://bma.org.uk/practical-support-at-work/pay-fees-allowances/fees/fee-finder/fee-finder-medical-records
Eric’s paper – Reducing the Scope of Guidelines and Policy Statements of Hypothyroidism
http://tpauk.com/images/docs/reduce-scope-final.pdf – a MUST read for every medical practitioner.
My own attempts at collecting evidence to show that the RCP et al, are giving out misleading, and sometimes, downright incorrect information – http://www.tpauk.com/forum/resources/the-royal-college-of-physicians-great-thyroid-scandal.2274/ – to this, the President of the RCP wrote “We will not be entering into any further discussion regarding hypothyroidism~” – well- Hip Hip Hooray! – did we actually expect them to make any other comment? NAH! – but what an appalling statement to make.
…again, a further attempt to show the harm that the endocrinology speciality is causing to approximately 300,000 sufferers of hypothyroid symptoms in the UK alone – and to show evidence that L-T4 only does not work for ALL such patients – http://www.tpauk.com/forum/resources/endocrinology-failures-harming-approx-300-000-uk-patients-by-sheila-turner.3/
I am not an academic, and not been published, so why would such ‘mighty gods’ listen to little old me. However, we can cite evidence to show the world how bad this situation is. I, for one, will not give up.
TPA has been reasonable in trying to get the establishment to listen to us, but found being polite doesn’t work. So, perhaps now is the time to be noisy and take some direct action. Many of us are older women and the sort who would never normally become involved in ‘trying to get noticed’ – but we are in the process of considering demonstrating along the lines of a possible picket outside the HQ of one of the professional thyroid establishments (such as the RCP/BTA who have the most influence in drawing up and enforcing their guidelines. Perhaps we might get Professor Weetman to come and talk to us, if we ask him ever so nicely! I would like to do that personally :o)
It would be good if we could keep a 24 hour vigil, should we get sufficient demonstrators – or at least a regular 9 to 5 daily presence. Lots of placards and posters, giving a clear and simple message.
We need to let journalists and various TV News Channels know of our demonstration, and the reason why we felt it so necessary.
Point is we have tried every which way avenue possible. We need to give vivid statements of what having this condition is like, ie. what the effect is on us and those around us.
We would need to be ready to meet objections, such as “…you can’t be that tired if you can do all this” – to which such a response could be “Ah, we are the ones that had to seek help and support outside of the NHS to regain our health, do our own private testing and buy the drugs we needed from online pharmacies – therefore diagnosing and treating our condition ourselves!” .
Tell the journalist we would like to get our optimal health back under medical supervision but the current ruling means that many doctors won’t do that – they are afraid of being arraigned before the GMC should they dare go outside mainstream protocol in the diagnosing and treatment of those with thyroid symptoms. They do not want to risk losing their livelihood and career.
We need one or two folk who will be our spokesperson(s) and who would have had some media training so as to know what to expect and how to get our message over in the most effective way. Jerome Burne (freelance Scientific Journalist comes to mind here as one such person – are you around Jerome?) Such a spokesperson should be prepared to be available at all times and be very helpful to journalists – not deluging them with information but able to give them pithy quotes that they can use. These can be prepared in advance.
We can provide access to more information if they require it and we need to make a judgement about how much complexity the media is likely to be able to handle – this problem is not easy for the layman to understand.
It would be great to also have somebody such as Dr Malcolm Kendrick too, should he be prepared talk about it from the medical end – and if we could get other doctors on board who could help, that would be wonderful.
We need a clear AIM. We must be prepared to stay there until we get some improvement. This can be done in ‘shifts’. What do we have to lose, absolutely nothing. Getting the ‘masters of endocrinology’ (and especially Weetman) to come out and talk to us would be a massive start – nay, it would be a monumental achievement.
We don’t want to settle for a review done by them – we have seen what happens with that in the past. We need to have quotes ready of how they have said they are not going to engage in discussions with you – and TPA can provide those – and also have quotes about how doctors and patients are supposed to discuss treatment options – and not be ignored.
We are looking for someone who is fairly old who has had to dig into her savings or has had to buy it from online pharmacies without a prescription, because she can’t get the treatment she needs within the NHS. Someone who is feisty and fun but also obvious suffering and someone who is not likely to be fooled. Do you fit this picture? We also need, if possible a young attractive woman who is also very plausible but also angry and desperate – I know, I know, but remember we are dealing with the media and young sexy attractive ladies will help the journalist pay more attention to our plight..
We will need to be ready to deal with the comments that the establishment is going to make, such as: ” …that this is an area with a strong placebo effect, – that studies have shown that people can be fooled if they think they are being treated when they are not, – that if you are treated when you don’t need it you could risk a heart attack. Again, should such comments be made, we already have the answers to them.
We need to respond by asking them “what the risks are in numbers treated – how many might have a heart attack, what studies have been done to research it, how having been told the risk we are prepared to take it – that millions are given drugs for other conditions that come with all sorts of nasty side effects. They are told to discuss it with their doctor to see if it right for them. Why are we, being denied that option? The placebo effect of drugs such as SSRIs are known to be very strong and they are linked with a raised risk of suicide – yet millions are prescribed them every year. Why are patients suffering symptoms of hypothyroidism denied this choice?
The hardest thing when we know a lot about a subject is to try keep it short (and I am the worlds worst :o) ) – but we can learn how to do this as the campaign starts progressing. Going into details of such things as TSH, T3 and T4 and all that should be avoided unless we are doing an interview for a feature. The more we can come up with memorable metaphors for what is going on, the better.
Our overall message is that we are good decent women who are being treated in the manifestly unfair, nay, appalling way – we are pitting our bodies and distress against the detached and arrogant rationality of the so called ‘masters’ of endocrinology. It is likely that they will come across as either lacking in compassion or patronising.
We can’t really win a “minds” campaign – they are the experts – accept that from the start – although we can certainly make some strong points – but we CAN win the “HEARTS” campaign.
We need as many people on board for such a demonstration as possible and it is a fact that the owners of all UK thyroid websites and support forums should come together and be as one.
If you are interested in taking part in such a demonstration, and feel that you could help in our this campaign, or you have any expertise in planning such a demonstration, please contact me privately at tpadvocacy@gmail.com or sheila@tpauk.com
Sheila is absolutely correct. The message to the operators of other forums should be taken from Benjamin Franklin – we either hang together or we will hang separately – as we are currently doing and, if the endocrinology establishment has its way, we, the people, will continue to do.
I have never seen in a half-century of professional experience any group that has had more adverse influence over human lives while claiming to have scientific proof. The reality is simple, there is more to endocrinology than the endocrine system because the products of the endocrine system travel to the “peripheral tissue” where it is modified and used. Thus the measure of the effect of these products of the endocrine system is not limited to blood borne products. Nonetheless, endocrinology ignores peripheral tissue functions, such as hormone conversion, cellular hormone reception, and cellular hormone functionality.
Furthermore, the National Health Service doesn’t care about the unnecessary suffering produced by the British Thyroid Association and the Royal College of Physicians. The CCGs are actively working to ensure more suffering exists and continues to exist in the UK. In fact, no element of government cares about the victims of denial of proper healthcare based upon, relative to post-thyroid functions in the peripheral tissue, junk science.
I help to run to a Facebook thyroid page and we have nearly 5000 members and are growing rapidly, most of whom don’t feel well on levothyroxine treatment only. Can they all be wrong? I’m incredibly frustrated by the position of the BTA and RCP. Their ongoing displays of arrogance in denying that there is a problem in the face of massive evidence to the contrary is unacceptable. Their refusal to engage with the patients they are meant to represent is an embarrassment and a travesty. Many patients feel that they have no option but to order their own medications from the Internet which leaves them open to the risk of buying fake or dangerous medicines. No-one wants to have to expose themselves to such unacceptable risks, and the fact that they do so, is an example of the level of desperation that they face. This desperation is caused entirely by the failures of those organisations that produce the guidance and whom refuse to fund research into NDT and combination treatment. I guess that engaging with patients at this point will be tantamount to admitting that they havent handled this in an acceptable way. Surely at some point things will have to change? Why shouldn’t patients be allowed a say in their treatment? After all, patients are the experts in how they are feeling.
After going through suicide idealisations from Levo, I stopped taking it nearly 4 months ago. I had my bloods tested last week (only T4 and TSH allowed) and have been told by the nurse over the phone that I have to restart Levo again. I had explained to the doctor that I can not go through another year of absolute hell on Levo and all she did was stay silent. I am saving to see a private endo, who is only one of a handful in Ireland that will prescribe NDT. I am wondering will I be Ok for aother few months taking nothing? I am afraid to self medicate with NDT as I fear I may have adrenal issues also. My TSH is 6 and FT4 is 19
Ann. Join the forum at tpauk.com and members there will help you. You don’t have to do this on your own.
There are MANY reasons and many medical conditions associated with thyroid disease that stop thyroid hormone from getting into the cells, where it does its work. Unfortunately the RCP Teaching Curriculum doesn’t take these associated conditions into account when their patients complain of not getting back their optimal health when being treated with thyroid hormone replacement. Perhaps, in the nicest possible way, of course, you could chat to your GP about such possibilities, and in case s/he believes there is no research to show of such an association, give him/her a list of just some of the research (at the bottom of this list).
The main condition responsible for stopping thyroid hormone from working are:
1. Your thyroxine dose is too low.
Often this is the case, and the doctor or consultant won’t increase it, since the blood levels appear perfectly okay. Sometimes, though, the dose of thyroxine is quite high – 200 mcg – 300 mcg – but you still don’t feel well.
2. Partial response to the single synthetic thyroxine replacement.
Your thyroid produces four other hormones apart from thyroxine, and most of us need them all. Without them our response is limited and synthetic thyroxine may not suit the system as well as the natural thyroid hormones.
3. Adrenal fatigue or exhaustion.
This is very commonly met with indeed. The production of thyroxine (T4), its conversion to liothyronine (T3), and the receptor uptake (called ‘binding’) requires a normal amount of adrenal hormones, notably, of course, cortisone. (Excess cortisone can shut production down, however).
4. Failure of the 5 de-iodinase enzyme.
This is what happens if the adrenals are not responding properly, and provision of cortisone usually switches it on again. But sometimes it doesn’t. If the illness has been going on too long, the enzyme seems to fail. This conversion failure (in explicably denied by many endocrinologists) means the thyroxine builds up, unconverted. So it doesn’t work, and T4 toxicosis results. This makes you feel quite unwell, toxic, often with palpitations and chest pain. (I refer to this further on.) If provision of adrenal support doesn’t remedy the situation, the final solution is the use of the thyroid hormone, already converted, T3.
5. Receptor resistance.
Being hypothyroid for some considerable time may mean the biochemical mechanisms which permit the binding of T3 to the receptors is downgraded; the T3 just won’t go in. With slow build up of T3, with full adrenal support and adequate vitamins and minerals, the receptors do actually come on line again. But this can be quite a slow process, and care has to be taken to build the dose up gradually.
6. Food allergies.
The most common food allergy is allergy to gluten, the protein fraction of wheat. The antibody generated by the body, by a process of molecular mimicry, cross reacts with the thyroperoxidase enzyme, (which makes thyroxine) and shuts it down. So allergy to bread can make you hypothyroid.
There may be other food allergies with this kind of effect, but information on these is scanty. Certainly allergic response to certain foods can affect adrenal function and imperil thyroid production and uptake.
7. Presence of systemic candidiasis.
This is where candida albicans, a yeast, which causes skin infections almost anywhere in the body, invades the lining of the lower part of the small intestine and the large intestine. Here, the candida sets up residence in the warmth and the dark, and demands to be fed. Loving sugars and starches, candida can make you suffer frightful sweet cravings. (I wouldn’t be surprised if it can synthesize a neurotransmitter, which causes such craving that you have to have chocolate, on pain of death.) Candida can produce toxins which can cause very many symptoms of exhaustion, headache, general illness, and which interfere with the uptake of thyroid and adrenal treatment. Sometimes the levels – which we usually test for – can be very high indeed, and make successful treatment difficult to achieve until adequately treated. (More of this further on.)
8. Hormone imbalances.
The whole of the endocrine system is linked; each part of it needs the other parts to be operating normally to work properly. An example of this we have seen already, with cortisone. But another example is the operation of sex hormones. The imbalance that occurs at the menopause with progesterone running down, and a relative dominance of oestrogen is a further case in point – oestrogen dominance downgrades production, transportation and uptake of thyroid hormones. This is why hypothyroidism may first appear at the menopause; the symptoms ascribed to this alone, which is then treated – often with extra oestrogen, making the whole thing worse. Deficiency in progesterone most especially needs to be dealt with, since it reverses oestrogen dominance, improves many menopausal symptoms like sweats and mood swings, and reverses osteoporosis. Happily natural progesterone cream is easily obtained: when used it has the added benefit of helping to stabilise adrenal function.
9. Low Levels of Specific Nutrients
Thyroid hormone cannot be fully utilised if levels of specific nutrients are too low in the reference range. These are iron, transferrin saturation%, ferritin, vitamin B12, vitasmin D3, magnesium, folate, copper and zinc. Ask your doctor to test these for you and get the results, together with the reference range for each of these tests and post them here on the forum so we can help with their interpretation. In fact, always post the reference range of whatever tests you have had done. Doctors are not really taught very well how to interpret blood test results, and quite often, if they appear ANYWHERE within the range, they will tell you that your results are normal. It matters whether they are at the bottom, the middle or the top of the range.
LOW MINERALS AND VITAMINS AND THE THYROID CONNECTION
Should your GP or endocrinologist tell you that there is no connection between low levels of minerals or vitamin levels and hypothyroidism symptoms, please copy the following references to show him/her.
Good luck!
Low iron/ferritin:
Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (1-4). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present (1-4)). See also: Iron supplementation for unexplained fatigue in non-anaemic women: double blind randomised placebo controlled trial.(5)
1.Dillman E, Gale C, Green W, et al. Hypothermia in iron deficiency due to altered triiodithyroidine metabolism. Regulatory, Integrative and Comparative Physiology 1980;239(5):377-R381.
2.Smith SM, Johnson PE, Lukaski HC. In vitro hepatic thyroid hormone deiodination in iron-deficient rats: effect of dietary fat. Life Sci 1993; 53(8):603-9.
3.Zimmermann MB, Köhrle J. The Impact of Iron and Selenium Deficiencies on Iodine and Thyroid Metabolism: Biochemistry and Relevance to Public Health. Thyroid 2002;12(10): 867-78.
4.Beard J, tobin B, Green W. Evidence for Thyroid Hormone Deficiency in Iron-Deficient Anemic Rats. J. Nutr. 1989; 119:772-778.
5.BMJ 2003;326:1124
Vitamin B12:
Jabbar A, Yawar A, Waseem S, Islam N, Ul Haque N, Zuberi L, Khan A, Akhter J. Vitamin B12 deficiency common in primary hypothyroidism. Department of Medicine, Aga Khan University, Karachi, Pakistan. 2008 May;58(5):258-61. Clinical Chemistry September 2001 vol. 47(9), 1738-1741
Vitamin D3:
Julia Bársony, P. Lakatos, J. Földes and T. Fehér. Effect of vitamin D3 loading and thyroid hormone replacement therapy on the decreased serum 25-hydroxyvitamin D level in patients with hypothyroidism. Acta Endocrinol November 1, 1986, 113, 329-334
Folate:
B. Catargi, F. Parrot-Roulaud, C. Cochet, D. Ducassou, P. Roger, and A. Tabarin. Thyroid. December 1999, 9(12): 1163-1166. doi:10.1089/thy.1999.9.1163. Published in Volume: 9 Issue 12: January 30, 2009
Bjørn G. Nedrebø, Ottar Nygård, Per M. Ueland, and Ernst A. Lien. Plasma Total Homocysteine in Hyper- and Hypothyroid Patients before and during 12 Months of Treatment. Clinical Chemistry September 2001 vol. 47 no. 9 1738-1741
Magnesium:
Jones, John E., Desper, Paul C., Shane, Stanley R., and Flink, Edmund B. Magnesium Metabolism in Hyperthyroidism and Hypothyroidism: Journal of Clinical Investigation. Vol. 45, No. 6, 1966
Copper:
Lawrence Wilson, MD. Copper Toxicity Syndrome (revised July 2011). The Center For Development. http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm
Vivek R Joshi, Ayaz K Mallick, Manjunatha Goud B K, Ravindra Maradi, Maheshwar G Reddy, Raghavendra Tey, Gaurav Shorey. Effect of serum copper concentration and ceruloplasmin on lipid parameters leading to increased propensity to cardiovascular risk. Department of Biochemistry, Melaka Manipal Medical College, Manipal University. ISSN: 0975-8585
Zinc:
Iham Amir Al-Juboori , Rafi Al-Rawi, Hussein Kadhem A-Hakeim. Estimation of Serum Copper, Manganese, Selenium, Zinc in Hypothyroidism Patients. IUFS Journal of Biology Short Communication 121 IUFS J Biol 2009, 68(2): 121-126
It’s really great to read so much recognition and to see this open discussion going on.
After spending years on this particular problem Lowe came to the sinister conclusion that the people who profit from the current status quo go to great lengths to resist change.
At first I thought that this was maybe a bit far flung because thyroid blood tests and t4 are not expensive. I don’t know the exact numbers, but I do know there are a lot of thyroid patients worldwide and in the end I think this amounts to a massive pile of cash that is at stake here. Take e.g. the very inaccurate TSH test which is currently used as a ‘gold standard’ screening test, millions and millions tsh tests are done each year. A lot of diagnoses get missed, yet people make large profits.
I still like to think that most endocrinologists have good intentions, but simply place way too much trust in some horrible bad, even corrupt studies and guidelines based on these studies. Scientific studies or conclusions based on these studies are not (per definition) objective or correct! There is a lot of bad science out there. As I read in another article on this blog, it’s really incomprehensible how little control and testing is exerted on the evidence underlying guidelines that are used as ‘hard evidence’ for treating millions of patients.
Where I think it currently comes down to is that proper care is being deliberately held away from a lot of people by others who are profiting from the status quo. These people imo are directly and deliberately causing innumerable suffering and death. I’m really disappointed that this kind of stuff (also in other medical areas) is still going on in this information-era and it needs to stop ASAP. The progress of thyroid science by this rigidity has probably also halted for years, a lot of things are not clear yet.
Anyway, every single person who takes an open minded and critical and look at the ‘evidence’ where current guidelines are based on is a win imo. A lot of suffering, death, wasted time, effort and money could be saved.
Thank for posting Dr. Kendrick, an interesting post and, as ever, interesting comments to follow.
I’m a thyroidectomised thyCa patient who can’t tolerate T4 only but I’m recovering on T4+T3. I was prescribed T3 inbetween thyroidectomy and RAI but when switched to T4 monotherapy symptoms became so severe I was 90% bedridden for 15 months and felt suicidal. I was categorically told Levothyroxine did not cause adverse effects. I spent 3 months on T3 only to clear the build up of T4 and when I resumed T4 palpitations and tremors started within 24 hours. Adding T3 calmed the adverse effects T4 caused and after a few weeks improved my FT3 which had been below range on 125mcg T4.
I had a heated debate with my NHS endo and quoted several studies demonstrating T4 monotherapy wasn’t always suitable to for thyroidless patients. He rubbished them as “American”, “RCTs lacking in rigour” but when I mentioned the ETA 2012 Guidelines supporting combination therapy in limited circumstances we agreed to disagree. Nevertheless he agreed my health was considerably improved in the 6 months since I last saw him and agreed to prescribeT3. I’m not sure whether this was because he believed the combination was beneficial or to stop me buying T3 online and selfmedicating.
T4+T3 combination has turned me around. I have still to recover fitness and strength but I believe I will achieve it. I didn’t think I had a future when I was on T4 only.
No wonder we thyroidectomised patients can’t get well on the magic bean called Levothyroxine.
“Here we report that due to hypothalamus-specific differences in D2 ubiquitination there is a sensitivity gradient in the loss of D2 activity in response to T4 between the hypothalamus and the rest of the brain and body. This explains why treatment with L-T4 alone fails to normalize serum TSH and T3 simultaneously. The lack of normalization of serum T3 and the higher serum T4 levels in L-T4–treated Tx rats have clear metabolic implications, including persistent hypercholesterolemia and relatively lower mitochondria content in liver and skeletal muscle. Furthermore, the relatively high serum T4 levels reduce D2 activity in different areas of the CNS, which, combined with lower serum T3 levels, results in local hypothyroidism. Only combined therapy with constant delivery of both L-T4 and L-T3 fully normalized T3-dependent metabolic markers and gene expression in Tx rats. These findings have important implications that may support the role of combination therapy in the treatment strategy for humans with hypothyroidism and thus may drive the need for development of improved pharmacologic modes for L-T3 administration and for high-quality randomized controlled trials in humans.”
http://www.jci.org/articles/view/77588
Well, my 4th visit to the GP post ‘diagnosis’* Xmas (in 4 years after a PartialT op) to be told you can’t have an increase, your TSH is in range at 3.84. (treating the TSH not my symptoms).
“Why can’t I have more (common & garden) T4 doctor? I was just beginning to feel a little better”.
“Because I say so, now go away.”
I should have cried, stomped my foot and had a tantrum like a proper child I suppose…..
(*’diagnosis’ consisted of a letter stating collect prescription, no explanation, nuffin’)
Has anyone who has thyroid issues seen this paper http://www.jci.org/articles/view/65252 from 2012 that identifies the effects of T3 in normalising heart rate and blood pressure in wild-type and Thra1+/m mice?
Dear Dr Kendrick,
Lorraine Cleaver suggested that this might be a good way to get in touch with you. I follow you on Twitter if you search for me or hopefully you can see my email address here. I saw that you were at the B12 conference at the weekend and thought you might be interested in my case after your religion/medicine post.
I’m looking for an independently minded expert witness haematologist if you know of anyone. It would probably be best if they’ve retired and not in fear of their job if you see what I mean.
Regards,
Jim Herd
I will ask around. not sure if I will be successful.
I was given an SSRI about 2 years after my thyroidectomy from thyroid cancer, and before I found a doctor that actually took free T3 seriously. (I was living in the US, so it wasn’t as nearly impossible as it seems to be in the UK.) When your serotonin levels are normal and you are given something that raises those levels, you start to have psychedelic hallucinations. As in most of the time and completely outside your control. It’s terrifying, especially if you’ve never experimented with hallucinogenic recreational drugs in the first place. It took me about 4 years to recover from the 5 months I took Paxil – and my university career never recovered. Here’s a hint from a psychiatrist whose office I managed for a number of years: hair loss and constipation are not symptoms of classical clinical depression. Not ever.
A great Thyroid Petition in my view , please sign and share
https://secure.avaaz.org/en/petition/Better_treatment_for_hypothyroidism/?pv=3
I have commented previously but after reading Dr Kendrick’s report i decided to get a second opinion from another endo and try T3. Perhaps then my symptoms will change for the better and my quality of life will improve. FYI – i had a total thyroidectomy in 2009 and am on levothyroxine. I have since gained 4 stone, am extremely lethargic/exhausted, constant high levels of inflammation and therefore diagnosed as rheumatoid arthritis, joint pain so bad that if i wake in the night for a visit to the loo or to settle my son i have to use a walking stick due to pain in my feet, i sweat excessively even if sitting still in an aircon room and the list goes on. Anyway, found an endo that a friend recommend, wasnt covered by corporate bupa medical so self funded as i wanted to get sorted. Anyway, £250 later and i feel slightly robbed. He is writing to GP to change my dose of T4 from 150mg to 100mg and to give me T3 dose of 10 twice daily. He isnt monitiring, but will leave that to my GP!! He adked if i had considered a gastric band to help me lose weight and to get a high dose of antidepressants to help with fatigue ‘will give me a bouncing off the walls feeling’!!! Also said my fatigue is ‘just part of life’!!!!! So now its back to the drawing board to find another endo that will monitor my meds and to actually want to help me rather than making me feel that he was just going through the motions and that he might as well have patted me on the arm and said ‘there there young lady, of you go’! Just wondered what your thoughts are as to whether the dosage sounds right for someone wth no thyroid and should a GP be left monitor this alone? Bearing in mind that my T4 meds keep going doolally – were ok for about 10 months then suddenly changed to 12.7 from 3 though endo still thinks my body is dealing with T4 ok!! Look forward to your comments. Cx
” Millions of people, largely women, all over the world suffer a seriously impaired quality of life and even early death because of undiagnosed, misdiagnosed or under-treated hypothyroidism. They are denied treatment, told they have chronic fatigue syndrome, which can’t be treated, or not given enough hormone or the right type of hormone to make them better. This situation borders on an abuse of civil rights and gender discrimination. How many men would be told symptoms are all in your head? ”
” It has been known how to treat hypothyroidism by replacing the missing hormone for around 120 years, but we cannot diagnose or indeed treat it properly because of the over reliance on a laboratory blood test and lack of knowledge by doctors of the complicated nature of the disease. They are not trained to treat it properly. An objective investigation into the nature of the disease and its treatment needs to be undertaken.”
https://secure.avaaz.org/en/petition/Better_treatment_for_hypothyroidism/?pv=3
Research has shown that some of us could have a genetic reason for not getting better on levo. These are the links:
Click to access Breakthrough%20Discovery%20-%20need%20for%20T3%20could%20be%20genetic%20Dr%20Gary%20Pepper.pdf
http://www.thyroiduk.org.uk/tuk/testing/DIO2_test.html?zoom_highlight=gene+D102
Click to access DIO2%20info.pdf
What a great article. An interesting insider’s view of the contradictory views taken by many doctors, which I had attributed to just my GP. Despite feeling terrible, having a blood test showing estradiol above the normal range, and a visible problem of gynaecomastia, I was referred to a psychiatrist, who diagnosed me as suffering from “Depression with hypochondriacal delusions” and prescribed venlafaxine.
Poor you, Geoff the Piper, but I hope you laughed at the psychiatrist in his or her face and left the prescription on the desk. Having worked in mental health services for many years, I despaired of the psychiatrists’ love of their fancy diagnoses, accompanied by a prescription handed out with pride and confidence that they were very clever. Mostly, the psychiatrists I came across were ego-maniacs, except for those few who had the courage to think their own thoughts – like Dr. Kendrick does. Very few psychiatrists I knew and worked with had any empathy for their patients. It seems your psychiatrist may be suffering from “Disinterest with Hyperfanciful Delusions”.
I’m so glad you have this website to support you. Have you heard of Dr. Durrant-Peatfield? Please have a look at http://www.tpauk.co.uk if you are not already aware of it. It is the very best website for all things Thyroid. All the best.
Well, having got no nowhere with my GP nor the psychiatrist, I almost threw in the towel and topped myself. But instead I did a bit of research, and self medicated with anything which I thought might help. I have found the following to be of benefit to me:
Tribulis terristris: boosts your own testosterone production. Makes me less irritable and more good natured (partner testifies to this).
Danazol, anastrazole and letrozole: these seem to help me tolerate a higher dose of thyroxine, lessening jittery anxious feelings, make me feel physically stronger and more confident and assured. I find maximum benefit by cycling these drugs, taking them for a couple of days, taking nothing for 3 or 4 days (except daily thyroxine of course), then taking a different tablet for a couple of days. I also find it best to take one of these other tablets before going to bed: gives me a good chance of waking up in a reasonably energetic state. Letrozole seems to work best for me.
As a result, although most days are a struggle, and sometimes Id like to go quietly into that good night, Im still alive 13 years later. Thanks to online pharmacies though, not to arrogant medical “experts”.
How ******y rude of that psychiatrist. I think the only person suffering from “delusions” is him/her – delusions that they know what they are doing and are helping their patients. Have you considered submitting a written complaint?
Having located this most interesting site today via my searches related to Thyroid problems which have been having a serious impact on my wife,and having blood test results via our Doctor indicating all is ” NORMAL with your Thyroid blood results” I arranged an independent laboratory test without reference to who my GP was..
Costing £99.00 within 48 hours the tests were E.Mailed in full showing a highly abnormal
Thyroglobulin Antibody level of 291.6 with advice to make this known to our GP.
We did and she was clueless having had put my wife through Hospital invasive tests for 3 months for Bowel Cancer.So accept my apologies for going off subject with a project I have been working on daily for 22 years where I built an incredible mass of Epidemiological Research conclusions from many leading Professors around the world who have substantiated that over 7 million die annually worldwide from ingesting highly toxic air pollution (PM2.5 Nitrogen Dioxide Particulates) (WHO Reports) which have been conclusively linked to all serious major diseases .
Once ingested they reside in Lung Tissue and cannot be expelled,they then inhabit the blood stream,and create free radicals which are linked to 100,000 UK annual deaths
re Cancers,Heart Diseases,Strokes,Autism,Lung Diseases,Foetus Damage Dementia etc etc etc.
My years of collating such realms of substantiated serious damage done to Human Organs led me to create objective and conclusive dossiers with all references as proof.
I had a meeting with a UK Prime Minister for 45 minutes who suggested I send a further dossier to him (after previously having forwarded 6 dossiers without replies) after which no further response.
I continued to pass the conclusive evidence to Minister,Secretaries of State,MP`s,Directors of Public Health,Public Health England,Chief Medical Officers for 12 years,Government Health and Environment Cabinet Ministers,House of Commons Committees,and included copies to European Commissioners and World Health Organisations,knowing no-one could contradict my evidence located daily over a period of 22 years.
I knew the UK Government had contravened and ignored all Air Pollution Directives for 15 years and showed duplicity in air pollution monitoring methods.It took me 3 years to have my evidence
transferred through the EEC sections for validation to the European Supreme Court for a decision and in July 2015 the decision was reached that the UK had been negligent and ignored
EEC Directives for 15 years and was being allowed 6 months from July 2015 to commence dealing with this highly serious confirmed issue.
At almost 80 still fight with facts which have barricaded enemies in the Health,Environmental
and UK Media blocks who all deluge the public that its there own fault they get serious diseases including Dementia,Heart Defects in Infants,and Miscarriages,and the diseases I have referred to earlier.I needed to ensure my knowledge of existing Laws was accurate,with references I have shown through my now direct links with highly respected researchers around the world,and I hope my efforts offer an improved chance to future children s and infants who have a right to breathe clean air.The UK barriers on this subject are immense whether it be Health Authorities nationwide,media reluctance,or Governments avoidance’s,so now it seems i also have an added quest to have accurate and reliable Thyroid Blood Tests offered for all those experiencing
the numerous symptoms and suffering created by inept,negligent,and blinkered Medics.
My regards
John
Dr.Kendrick needs supreme and constant support from everyone suffering from deliberate negligence by those who administrate our health requirements.
If interested search Nitrogen Dioxide PM2,5 Nano Particles and Human Health
One of the best ways to get rid of thyroid from home is to increase the intake of Vitamin A in your diet. You can do this by including foods such as yellow vegetables in your diet. You also need to eat a lot of carrots, eggs and all the dark green vegetables as all these are good sources of Vitamin A.
Eva, it isn’t possible to ‘get rid’ of a thyroid condition once it has developed, unless one is in the very early stages of Hashimoto’s and knows how to tackle autoimmune reactions before they become established. Izabella Wentz, a US pharmacist, has written about this specific subject. But you are right to say it is important to eat foods containing vitamin A – though not those containing beta-carotene, since the hypothyroid patient cannot convert this to vitamin A. When I developed end stage signs of hypothyroidism due to inadequate T4 monotherapy, my skin and hair turned yellow!
Yellow underside of feet is a sign of low metabolism meaning low metabolism of betacarotene. It could also mean insufficient hormone treatment.
Hi Everyone – i have posted on here before but wanted to give you an update and to say a huge “thank you” to Dr Kendrick. It is only after reading this report and doing further research that i went to see a 2nd endocrinologist to get T3 prescribed. I am now feeling so much better than when i was on T4 alone. However, the endo i saw, even after giving him a long list of symptoms, didnt believe T3 would make any difference and so it was a ‘clinical trial’,told me to getan increased dose of antidepressants and to consider getting a gastric band fitted!! He did prescribe T3 but as you can imagine i was rather deflated after that conversation. Thankfully my GP prescribed T3 under the agreement that i would see ‘another’ endo to monitor me (thankfully i have private medical otherwise i would not be so fortunate! Since taking T3 my symptoms have changed for the better – no more hot sweats even while sitting still in an aircon room;
– wake up more refreshed rather than needing to sleep 10mins later;
– no more falling asleep mid-conversation or whenever i sat still for 5mins (cldnt drive too far as wld nod off at the wheel!!);
– no more feeling like my limbs are a dead weight and the effort it took to walk upstairs was unbelievable!
– lost 1stone 3lbs in 8 weeks, before i wld try every eating plan while exercising and would lose a couple of pounds and that would be all!
Dr Kendrick, i cannot thank you enough. My marriage was struggling, i was such a moody, stroppy, sometimes horrible wife and i was so grumpy with my son for which i feel soooooo guilty, and inused to cry alot due to frustration, feeling alone, no-one understood what was hapoening to me – but i am now like a new person. I am happy, getting confidence back, losing weight, and enjoying life. Thank you, thank you, thank you. You truly are a life (and marriage) saver!! Cx
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Dear Dr Kendrick,
I feel so relieved after reading your article, at your insight, and open-mindness towards this apparently vast subject around thyroid conditions and the lack of correct diagnosis/treatment by our NHS.
I’ve been suffering from hypothyroid symptoms for about 7 years now, and it only came to light through a friend that my thyroid was the cause. Blood tests over the years always resulted in ‘everything’s fine’, and now that I’ve looked into it all myself, I know it is as a result of a thyroid condition. I’ve also kept a record of my basal temp, and resting pulse, and both are very low consistently. I guess I’m also one of those who doesn’t have any apparent weight gain, although I’ve always tended to be underweight, and been able to eat anything and not out on weight. In addition, I feel the stomach problems I’ve been having haven’t helped with regard to my weight etc. I feel this has caused even more disbelief where my GP, and the endocrinologist whom I saw this week have both been concerned.
Needless to say, I gained no diagnosis or help from the endocrinologist, and I ended up so upset emotionally, that I left still unable to stop the floods of tears. I have been signed off from work now for nearly 6 years.
At this stage now, I am seriously considering sourcing my own medication and treating myself, like so many others as I have found out.
My wish is for many more like yourself to be out there pushing for this all to change, for the sake of so many who are suffering, and of whom most are completely unaware of what is in fact going on.
Thank you so much for all your efforts, and for your wonderful article.
Best wishes
Sharon
🙂
Last year I was a mess. I was exhausted, even after sleeping for 10 or more hours, I could sleep all day yet had no energy. I wanted to cry all the time because I felt so I’ll. My GP refused to treat me at all despite my tsh being high and my t4 being on the bottom of ‘normal’. I went to an endocrinologist who prescribed t4
No change in.my symptoms, so he doubled the dose. Still no change. He then added a little t3. A slight improvement so he doubled the t3. Wow. For a few hours a day I felt normal bit could feel a crash later on. He then puts me on 10mcg 3 times a day and I can honestly say that I have my life back. I am no longer exhausted. I can exercise again. T3 is a miracle for me and the thought of it being withdrawn fills me with terror.
Dr Kendrick, I am a 43 year old female with every classics hypothyroidism symptom. I’ve had the hormone test last year and it came out a little under on one and over on the other (sorry can’t remember the names of the hormone test TSH maybe?) anyway while I was over what would be classed as hypothyroidism in ‘the real world’ my – I say my, but in reality I don’t see the same GP for than twice) says is only be treated if my hom one was over 70. There is most definitely something going on. I was always very slim and have put a considerable amount of weight on over a short period of time without changing my eating habits. I am textbook hypothyroidism but the blood tests are telling the GP that it’s not enough for treatment. Can you recommend anyone so I can see them privately? I live in Scotland. Thank you in advance.
I am considering setting up a private practice again. I will let you know.
…and also create an import company that can import Greek T3 to replace the T3 bought by the NHS for almost 300 GBP’s a pack. What a scandal 😦
Please do Malcolm. You are needed. Endo in Ayr insists NDT will be doing me harm & that I MUST return to Levo. Refuses to listen to anything I’ve researched..
Thank you. Reading this has brought a little relief knowing that someone gets it. I had a long history of hypothyroid symptoms which took my doctors 2 years to diagnose, and only them because my thyroid was so swollen it was visible. It was also too late though, because my thyroid was severely damaged by nodules and cancers. Now I constantly have to fight all but my GP to get the medications I need as my thyroid has to be removed. I am treated like a drug addict for daring to question them and insist on higher medication doses to stop being sick. I hate that they won’t look at new studies because God forbid they could be wrong!
I am a British citizen and live in the United States. I plan to move back to the UK in the next few years, so have been researching NDT in the UK, and not liking what I’ve read so far. I’ve been on Armour Thyroid for about 18 months, but with the company being bought out and the pills reformulated, people have been having problems with symptoms, myself included. I am switching to WP Thyroid. I don’t want to have to fight to get the meds I need. Why can’t the doctors just make patients sign a release/ hold harmless form, if they insist on NDT? Upon research, I found an article that stated that the American Thyroid Association states that it is unethical for doctors to offer patients anything other than levothyroxine!
The ATA, which has taken substantial money from companies that make levothyroxine, convened a Task Force which then conveniently found that levothyroxine is the “standard of care.” This may potentially make it more difficult for patients to find doctors who will prescribe anything besides levothyroxine, and insurers and HMOs that will cover drug treatment options besides levothyroxine.
It is shocking and despicable that this can happen. More information – https://www.holtorfmed.com/five-ways-new-ata-hypothyroidism-guidelines-bad-thyroid-patients/
I just can’t believe with the advances in medicine, that these doctors, both in the US and the UK, can be so blind to what actually helps. I do think that many have God complexes, so who are we to question them? They know everything, we know nothing. Through our research, we probably know a lot more than what they have learned! We need more Osteopath doctors (licensed and a bit different in the US than in UK), doctors that treat a person as a whole being, finding the problems, rather than just prescribing drugs to mask symptoms. For some reason it seems that most modern doctors just want to mask symptoms and, without question, use chemicals that drug reps pedal to them.
My doctor listens to me, my symptoms, and asks how I would like to proceed with treatment. That is a rare doctor indeed. I really don’t want to lose that moving back to the UK!
I’d love to know how you’ve gotten on with your decision to move to the UK? I just buy abroad now and pay extra p&p. the only difference I’ve seen is that buying any synthetic T3 is now doubled and in some cases tripled in price. I troll the muscle building community sites which have reputable foreign brands tested regularly for dosage levels. Personally, I’ve given up looking for Armour or equivalent online, I can’t seem to find it anywhere, without a prescription. So if anyone knows of where I can buy that, I’d be grateful. Rachael
Came back from my Doctors again yesterday. She was very honest and told me that I did indeed know more about my thyroid than she did. This is only because I have spent ten years living with it. In that time I have fought for a second opinion, whereas I was under the hospital for 5 years because I went from overactive to underactive over and over again. The solution, lets give her the radioactive drink – that should sort her out. Problem is I then became underactive for life. Oh and let’s not forget the breast cancer that came after that. I am now 49 and after major operations to rebuild me. Chemo oh and radiotherapy. I decided that I would come off the prescribed antidepressants and see if I could get by. No these just made me not care about the weigh gain and all the other symptoms that came along with my thyroid being out of kilter. Back and forward to the doctors – where I got laughed at by one GP who told me I was nice and slim and healthy then escorted me to the door. I have now upped my Levoroxine, against the doctors advice as they refuse to help me. I crawl around everyday and somehow manage to hold down a full-time job. Sometimes I practically starve myself and then I have to laugh when I gain another 5 pounds. Recently I have lost the will to live and with one last burst of energy which included a lot of Pro plus so I didnt fall asleep on the doctor again. I went along and begged her to listen to me. Told her all my symptoms again and stated that I know she will recommend that I go back on antidepressants as yes I am depressed- who wouldn’t be. Yet I have a great life, family, husband etc. I am not unhappy just sick of being sick. I told her I had read about self medicating myself but I’m too scared. So I am having some private counselling to get my brain rewired, hopefully this will get me strong enough to research more into what will help me physically. If not I know I will have a shortened lifespan, I cannot allow this to beat me. As for my GP -there is nothing more she can do. She admitted that there is no further testing, she apologised. Wished me well and asked to let her know how I get on.
Don’t you dare give up… be brave… take on the self-medication… please! When I was first diagnosed, I was actually well… I only got sick because I was put on T4. On several occasions, I was told to my face that my symptoms were all in my head. I was told that T4 could not give you side-effects. I was told many other lies too… and I continued to get worse… I was offered anti-depressants, and like you, I knew they would not help… and they actually made me worse. After 10 years of mistreatment, I felt I was close to death. I couldn’t make it up the stairs, I had gained over 5 stone in weight and I suffered constant migraines, aches, pains, muscle weakness and so much more. I finally took the brave step to see a private endo and also started self medicating soon after. The endo I saw told me that I had seen him just in time… I had perhaps another 12 months to live – if I continued down this track… I was so ill and it was so obvious. He even cried when he heard my story. Sadly, this doctor got me on the right track, but died a couple of years ago, leaving me to fend for myself… which I have done to the best of my ability – and with the support of TPA and Thyroid UK… I discovered this week that I have a defective DIO2 gene, which explains why T4 was so bad for me. The endo was right – although he couldn’t have known the reason why back then – T4 given to someone with this gene defect is poisonous… it causes thyrotoxicity, because the person cannot convert T4 into T3 effectively! I am so angry with the NHS – but if I had just resigned myself to being in their care, and hadn’t taken responsibility for my health, I wouldn’t be here today… please don’t give up and do start to find out more for yourself and start treating yourself… it is daunting and there is so much to learn… but it is the only way! Good luck!
Levothyroxine worked for me for about 10 years, after which I began being ill with CFS, Adrenal crashes (Adrenal Fatigue), Fibromyalgia. Eventually I found my way to TPAUK, a lifesaving website for all things Thyroid, and thanks to advice on it I now order NDT from Thailand. I get my bloods done every three months to monitor the T3/T4 levels and adjust my dosage accordingly. It is very difficult to find a doctor in my country who can prescribe NDT although I did find a hormone specialist and and endocrinologist who do, but I had to see them privately. The Department for Health only authorises the importation of NPThyroid from the USA, and it is horribly expensive, equal to £50 for a two month supply. I find the ThryoidS from Thailand does the job just as well, for a fraction of the cost. Luckily, I have a GP who is going along with my choice, although I had to change GPs as the previous one fumed at me and put on the system that I am non-compliant with T4 replacement. I just wonder how long it will take for there to be a critical mass of doctors like your endo and mine here, and Dr. Kendrick and others like him, to make an impact on the policy makers and on how the teaching hospitals teach the subject. I guess the power of the pharmaceutical companies is a force to be reckoned with and they will not give up their monopoly easily. I suspect change may come slowly from small countries with no ties to Big Pharma and nothing to lose. At least, I hope so.
Faculties of medicine teach 10 years old science. Doctors tend to fall back on things learned by heart way back when in doubt like it was the bible.
I am hypothyroid my cholesterol has risked from 3.4 to 6.9 in four years along with countless other symptoms. I need T3.
The doctors have offered me anti depressants and statins. Where’s the logic in that. I will cost the NHS a lot more in the long run so why not prevent that and prescribe T3?!
I am sounding out people on Thyroid UK for a march on Downing Street. We need to be heard.
Do you think this is a good idea?
Wouldn’t want to make things worse but if hundreds of us go we might just be listened to. I don’t want to mess around with my health any more.
80 years ago or so, they were using cholesterol level to screen hypothyroidism and titrate dosage of thyroid extracts…Now they use TSH tests, and dosage is 3 times lower according to Dr David Derry, a Canadian doc who was stopped from practicing:-/
A March on Downing Street is what is urgently needed. How can it make things worse? The public needs to know about this outrage, and doctors who support NDT and T3 treatments need to come out of the closet, and to feel safe to do so. The drug companies’ monopoly on T4 treatment MUST be broken. We need a critical mass of people to come out and make their voices heard. NDT is what Hilary Clinton uses, so why shouldn’t we all? It is what everyone used before the TSH test monopolised the issue and endocrinologists conveniently joined forces with Big Pharma.
The accepted protocol for treatment that is the rule in the USA and in the UK has a massive impact on the way treatment is offered throughout the world. In my country anything that the FDA approves of becomes the gold standard. I really resent this type of medical colonialism.
Thanks Dr Kendrick for taking the time to write this article. I will now head off to research the internet for NDT that I can get from the USA. The system is hopeless in the UK.
You can buy NDT from Thailand very easily and without a prescription. TPAUK is a website that has lots of information about this and it has a great forum for sharing and asking. I myself use ThyroidS from Thailand and feel great on it. I do test for T4 and T3 levels regularly to ensure my T3 does not rise too high as it is very effective. I have never, before using this, had healthy T3 levels without my T4 rising to around 30. I never care about my TSH level as naturally the Pituitary gland does not need to produce it when you have enough T4 from a supplement. TPAUK is very educational on everything about the Thyroid plus the Adrenals, as they go hand in hand.
Thanks for responding…I will try the Thai route then. I will seek the website out. Thyroiduk is the site I tend to use most.
I’m glad you posted this. I was getting along fairly well on T4 after a total thyroidectomy five months ago but my memory and concentration weren’t what they were prior to the operation. The levels looked good on paper but I felt foggy, despite good energy levels, no other problems, but without a brain, what am I? At first I put it down to the anaesthetic but when it went on I started myself on a small addition of T3. it was like turning on the lights. Not my imagination, then. I’ve been on the combo for six weeks now, and I have my full life back.
I would be interested to read any studies you can recommend, as I suspect that my endo needs to read them as well. Nice lady but distinctly matriarchal. So far I’m holding my own in discussions, but a few references to quote would be good. Especially as I am now capable of reading and understandiing again.
These are a few links which might be of interest as this was how patients were treated before blood tests became the only way of diagnosing and increasing/decreasing and ignorance of clincal symptoms. Dr Lowe died about two years ago. There are other topics at the very top of the link but some links within might not be accessible. If you read his T3 link you will see how safe it is, despite scare stories, as well as the fact that it is most unlikely to cause strokes.
http://web.archive.org/web/20101030190515/http://drlowe.com/QandA/askdrlowe/properuse.htm
He was a doctor who treated patients and not blood test numbers. He would never prescribe levo:
http://web.archive.org/web/20101116112259/http://drlowe.com/QandA/askdrlowe/t4therapy.htm
http://www.thyroidscience.com/Criticism/lowe.3.16.09/bta.rebuttal.htm
I had most of my thyroid removed several years ago & over the years have suffered increasingly from symptoms typically associated with hypothyroid issues …… But my TSH within normal so I hardly need say what comes next briefly summarised as ” I really reccomend HRT and /or Anti- depressants , otherwise go away’.
Over the years I occasionally tried again to get my GP to reconsider and received the same reply.
Over the last few months my symptoms have detiorated greatly and decided to make one last attempt to get my GP to look at other measurements beyond TSH ie full thyroid panel and she actually agreed , filling out the test request form with her medical opinion as to reason for full panel request.
The results…….. Her request for testing anything beyond THS was refused by the NHS Pathology Department as my THS is normal! So here we have some remote NHS Lab Testing Department overriding my GP’s clinical opinion. Unbelievable!
This is medical totalitarianism. You wouldn’t know the NHS is a publicly funded service that is meant to offer an equitable treatment to all users.
Would your GP refer you to an endocrinologist? Surely the lab would not refuse tests requested by an endo?
Could a lab refuse to test for Thyroid antibodies? In any case it may be a good idea to go on a gluten free and lactose free diet and to do a Hashimotos protocol anyway. This means dealing with Leaky Gut and or intestinal bacterial overgrowth. These are very common in Thyroid issues and especially Hashimotos which is an autoimmune disease. It’s not something the doctors know about unless they have an interest, or training, in Functional Medicine. Some Naturopaths understand this about Hashimotos. And there are lots of excellent websites dedicated to this subject, mainly in the USA.
All the best.
That is awful – how can the path lab over-ride the GPs request? My GP has specifically asked on a blood form to test T3 along with T4 but they wldnt do the T3 test, even though the GP wrote it was requested by my consultant. I have been orescribed T3 meds along with T4 and my recent blood tests have been within range but i received a letter from GP asking me to make an appt to discuss my medication. I can picture it now – they are going to pull my T3 meds!!!!! Watch this space …….. any ideas/pointers what i say to GP other than i need them? Cx
At our GP practice the only patients who can have their T3 tested are patients who have been prescribed carbimazole .They can then tick the box on his computer stating that is the case before printing the blood request .😡 One of our Dr’s referred a pt to an Endocrinologist as she had many problems since taking levothyroxine- he refused to test for T3 .
It’s frustrating too that treatment and blood tests vary throughout the country .
I would be interested Dr Kendrick if you do decide to see patients privately . Although my guess is you have had an overwhelming response already !
I have to say that I am thoroughly impressed with treatment what I had.The patients who suffers from hypothyroidism and who really wants to learn the truth about how to permanently overcome hypothyroidism and enjoy life again,click the link here.https://hypothyroidismremedies.wordpress.com
Pennyal
Sept 14th. Don’t bother with this link, it’s just advertising for a book which costs a lot of money.
Dear Dr Kendrick, how refreshing to read a post from a doctor who has come to understand the importance of T3 in thyroid treatment. I have first hand knowledge of the importance of T3 as my gland was totally removed some 20 years ago. I was born with a lingual thyroid so the glands removal was very traumatic. Guided by the blood tests and T4 only it was not long before I fell into a semi coma losing days at a time. Over 18 months I was bedridden, lost nearly all my hair and was repeatedly told it was nothing to do with my treatment. My resting pulse eventually fell to 42 bmp. I developed ME, Fibromyalgia and CFS all diseases of a low metabolic state. My savour was a London doctor who put me on T3 only. He saved my life. As I learnt to walk again I travelled to Dr J C Lowe and his wife in the USA who rid my body of fibromyalgia. I learnt so much from Dr Lowe and eventually brought them over to the UK to attend a conference I held in the City where I lived.
Today I have to travel to Belgium to get my supplies as my GP refuses to treat me as I cannot keep within the blood ranges and be well. .
For sometime I have been writing a book about my experiences with these blood tests and T4 only treatment in the hope that I can get the public and medical profession to realise that this regime is a large contributor of the downfall of the NHS.
I would really like to hear from you
Thank you
A heartrending story and so glad you found your way out of the nightmare, now wishing to help others with the publication of the book about your experiences.
This is all the work of the drug companies, the FDA who influences medical practice in the UK and all over the world, and the medical schools, who are following fifty year old “science”, which has been disproved many times over since then. But Big Pharma has a stranglehold on the medical schools, on policy and on the insurance companies. Why the NHS, which is funded by taxpayers, insists on following like sheep what the FDA recommends is beyond me. It operates as a kind of totalitarian regime in relation to the doctors who work in it, who have no option but to follow guidelines. It’s a brave soul who does what Dr. Kendrick is doing. A voice in the wilderness. It is all so unfair for patients who are stigmatised with “hypochondria” and dismissed as imagining things, even when they are clearly almost dead. There are continued funding shortages for the NHS, most notably in the NHS for Scotland at present, for which the government is constantly pressed for more money. However, the NHS, and the Benefits Office, could save themselves huge costs from chronic illnesses such as hypothyroidism, by implementing new protocols that address the real issues and the root causes, most of which stem from toxic and depleted food, toxic environments and stressful lives. The NHS would do well by starting to treat hypothyroidism in the ways that are suggested in this paper and on the thread.
Thank you for a fantastic article, I’m on T3 after a long battle – I lost everything. Incapacitated by doctors adamant I had to have a TSH in range. After a few months on T3 I went from not being able to walk 50 meters to running 10k. From being freelance bedridden to creative director. Yet I still have to battle to remain on t3.
My life is always on a thread as doctors acting under GMC guidelines threaten to stop my medication at every opportunity. I was told by my GP that they are washing their hands of me and ‘I’ve made my bed’ as it were – it saddens me to see so many people affected, so many lives compromised for profit and intellectual pride.
Hey Thyroidgirl, take a look on TPAUK.com for further advice. I haven’t found the answer to my hypothyroidism yet, but there’s lots of good info on the site.
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Is this problem is genetic ? in my family most of the people have this problem, will i also suffer from thyroid after some years??
It will increase the risk
Susan
You could implement a preventive strategy by adopting a diet that eliminates gluten, soya products, processed foods which includes cooking oils. Making sure you have adequate levels of iodine is important. Avoiding bromine (fire retardant such as in upholstery fabrics and mattresses), chlorine and fluoride are essential (they are iodine mimickers and disrupt iodine uptake, essential for proper thyroid conversion from T4 to T3, T3 being the form that is absorbed by the cells), so use only toothpaste that has no fluoride in it, and refuse dental treatments that include fluoride, filter your drinking and cooking water with a filter that filters out fluoride – if it is put into the water provided by your local supplier – and avoid swimming pools and jaccuzis (they contain a lot of chlorine). Don’t use chlorine in the home at all and avoid breathing its fumes. Avoid stress at all costs, so implementing a meditation practice and taking regular excercise are essential. Kundalini Yoga is a wonderful thing to take up for protection of your endocrine system, your brain and your overall mental wellbeing.
There surely must be information online for how to best avoid hypothyroidism. A genetic disposition is only that, it is not a fate cast in stone. Epigenetics tells us that our genes are plastic and can change depending on what is influencing them.
Yes. Tiromel is really good for weight loss. I am considering genuine and quality
Great article, couldn’t say it any better myself. I struggled for 17 years feeling no better after being on the merry-go-round we call the NHS. I have seen over 9 Endo’s and 8 GP’s over this issue. I never want to see an NHS GP again with their patronising expressions concerning this issue. I buy from abroad and go by how I feel now. One rare Endo said I knew more about Hashimoto’s than he did and was happy for me to be more in control of how I wanted to treat it but when I got back to my GP he said he wasn’t having any of that! So rightly, or wrongly, I have given up on all of them. A sad awakening…
As a footnote, I asked one Endo if after the Hashimoto’s disease finally kills my thyroid, will my autoimmune disease go on to attack something else? He said yes. My Mother had hashi’s in her forties and was ignored as a Hypochondriac, so when she found lumps in her breasts, her GP ignored that also. She died at 52. I refuse to go down that route. I will fight for my own health, because there’s no other bugger in a white coat who’s going to.
Hi Rachael
Did you know that you can cure Hashimoto’s? There are many US websites, like Izabella Wentz’s, that show you protocols for overcoming it and reversing hypothyroidism. It all starts with what you eat. The main thing, as others on this thread have stated, is to start with eliminating gluten completely. You must also eliminate sugar and products made with it. A Ketogenic or Paleo diet is recommended, but the idea is that the diet is low carbohydrate, or no carbohydrate. And definitely NO soya products – only fermented soya, like Miso, is OK. Not even soya oil. Actually, none of the usual supermarket shelf oils, not canola, not corn, not sunflower, not peanut, only live oil, avocado oil, both preferably organic. Certain nuts and seeds are better than others. The diets proposed by Dr. Wentz and others are very easy to follow, but, of course, nothing processed either. Any Functional Medicine practitioner knows this protocol. There are some in the UK.
TPAUK is an excellent website that is chock full of information about all things thyroid, including a very helpful forum. Thanks to this website I found my way to NDT and to helping myself through Adrenal Fatigue/ME/CFS.
From personal experience, hormone imbalances are part of the picture, and at menopause progesterone cream can be helpful, but I think it is important to test hormone levels, especially progesterone, oestrogen and testosterone (yes, even in women it can be too high).
These are my suggestions for you to make sure that you do not have to go down the sad route that your mother was taken down. Hope you find this helpful.
Fantastic article and I enjoyed reading the comments as well. You’re all wonderful people, feeling real connection with you!
Dr Malcolm is a very brave doctor to speak his mind. We have to remember that GPs have to follow guidelines and are pretty stressed out despite being paid good salaries and because they can not practise medicine they want, they are very demoralised and they want an easy life in that consultation room. They look at the screen and they ignore the patients symptoms, they totally lost the art of old school medicine when a doctor had to rely on his knowledge as there was no test to tell them everything is in the range. Modern medicine works like factory – and doctor is a worker on the production line! That’s certainly my experience after 14 years working alongside GPs in a NHS practice!
My story is similar to everyone else here. At the age of 16 I developed a nodule on my thyroid and had a surgery – lobectomy. I lost right lobe of my thyroid and was told that the remaining half of my thyroid would work equally well, I’m sorted, no meds or check ups needed. So I never had my thyroid checked for many years. There was one thing I remember when I was in hospital waiting for my surgery – the doctors would come to discuss my case and they were all stroking my arms and commenting how velvety my skin was! I don’t know if proper thyroid testing was done (it was about 40 years ago and not in UK) but they were examining me because thyroid disease would cause changes in many organs, skin included. I think velvety skin is quite characteristic in hyperthyroidism. Shortly after surgery I started feeling tired without reason and was falling asleep at work and weather changes would make me ill.
I lived a normal life but very stressful and around menopause the hell broke and I was really tired. The doctors started testing my thyroid but everything was always “normal”. Now I have a long list of symptoms and my thyroid levels are changing for worse (TSH almost 4 and t4 12.2 at the very bottom of the range), TPO borderline and I had to quit my job as the physical and mental pressure was too much (remember, I worked in a factory on a “production line”!). I developed severe form of vertigo as well. My GP did lots of other tests and declared that everything is normal so I questioned him about the possibility of hypothyroidism. He said absolutely not, my test results are not really important as they show different result every time you have test and if I had a thyroid problem I would feel much worse (I can barely walk) and everything is ok. When I said I still think it is my thyroid he told me to leave.
Some months later I went to see a different doctor and gave her a long list of symptoms (most classic hypo symptoms) and ask her to help me to go back to work. She sent me for tests again but told me I’m depressed – nothing new here! I know I’m not depressed, I’m just so fed up with the way I feel.
I think I know what I need to do – I’m going to take things in my own hands – I don’t suffer fools gladly! I can’t afford private testing and treatment as I can’t work due to ill health so it is a vicious cycle but I still have my faculties and am optimistic.
I feel so very moved by some of the horror stories shared by you here and feel so unable to come with an idea how to fight the system. I hope one day it will change but it will be a long road to victory.
Dear Maya
Please take a look at tpauk website. You will find out how to take care of yourself with hypothyroidism.
Good luck
I just found this article, and it gives me so much hope. Thank you.
I’m 25 years old and from Australia. I was diagnosed as Hypothyroid when I was 17 and have been battling with doctors ever since. I never once thought that I would spend my precious teens and 20s completely debilitated by a disease which nobody seems to understand nor sympathise with.
To date I have visited in excess of 15 doctors for my condition and have yet to find one that knows what they’re talking about. An endocrinologist laughed at me and told me that given my blood results he would not have given me any treatment. Absolutely horrifying given my physical and mental state at the time. This illness has pushed me beyond what I ever believed I could cope with… I am a shell of my former self, extremely depressed, suicidal and sick to death of being told to simply exercise and eat less!
Yesterday I started taking T3 in addition to Desiccated Thyroid (which I ordered off the internet, illegally). I can’t wait to start feeling like myself again.
It makes me so angry and upset to think of how many people out there are suffering needlessly. Things must change.
That makes so much sence I just wish my doctor and Endicrinologist shared the same view as yourself,basically I need T3 my T4 was highand showed I needed treatment and felt terrible on Thyroxine alone with the shakes hot and cold sweats and numerous other side effects,seen an Endocrinologist before seeing this professional I was taking 100mg of Levothyroxin with no improvement after a year of blood tests feeling so lost,Basically now even though have been diagnosed as needing treatment and needing T3 as my body was lacking in this…Call from Endo no treatment of any kind needed via a phone call from her secretary,phoned my GP and she said yes your TSH is high at 8.9 and you need T3 as your allergic to Thyroxin so poisoned for over a year, but its up to me to sort this out have left numerous messages with my Endocrinologist’s secretary and am being ignored,they just want me to die,I really enjoyed reading your article I just wish doctors done their research and yes I was put on Sertraline yes depressed,anxious,feet swelling up and face,muscle spasms carpel tunnel I thought I was going crazy,I self medicate with T3 or would not be writing this as my brain had even stpped working,I lived off post it notes,horrendous,Since them stopping treatment I went to doctors and got offered anti depressents again for Hypothydroism,any advice would be appreciated.
Thanks Ali.
I posted these two links on HealthunlockedThyroiduk.org.uk.yesterday and today.
We desperately need good doctors in the UK who understand endocrinology and unfortunately it would seem many of our good established doctors were pursued for daring to prescribe according to clinical symptoms. It is no wonder that this USA doctor can not take on any new patients. If we even had one in the UK he would probably be prevented from prescribing and many UK patients have been treated abominally by having their NDT or T3 withdrawn immediately, without even a suggestion of an option (not that there is an option) if either of these made you well.
http://hormonerestoration.com/
http://hormonerestoration.com/Docs.html
This is a quote from one of our Advisers of TUK.
“I recently asked a young newly hatched GP from a good medical school how much teaching she had been given on endocrinology (not just thyroid mark you but ALL endocrinology). The answer was 11 hours. There are multiple aspects of this subject and one can imagine the perfunctory teaching of thyroid, which assumes it’s easy and disposable in a short teaching period. She said this was a small part of the overall attention to the subject.”
Most Thyroxine brands contain fillers which include talc. When the fillers were altered in 2012 it caused massive problems. Talc is not a food and some people are allergic to it and can die from ingesting it. My own endocrinologist prescribes Euthyrox which does not contain talc, nor does it contain any kind of sugar, although it does contain lactose monohydrate. I combine it with T3. The first two months of transitioning to this combination was exhausting, possibly because it was very challenging to the adrenals, however, I have adjusted the dosage to twice a day, and reduced the amount of T3 and am now settling into it (it helps to read Paul Robinson’s books for doing this).
If you live in the UK, I think that every MP should be bombarded with letters of complaint about the cost to the NHS of T3, which is perhaps the reason it has been withdrawn. The NHS is being robbed by the distributors of T3, who charge 200% of the actual cost!!!!! I use Cynomel from Sanofi in France at a cost of approximately £13 per 30 tablets to my health provider, plus Euthyrox which is about £4 for 100 tablets. I don’t understand why the NHS can not purchase Cynomel directly from France, but maybe the medical establishment in the UK is averse to any change, having been in the pockets of the drug manufacturers for so long, relying solely on TSH measures. There needs to be a huge march on Downing Street about this issue so that it raises public awareness. I don’t suppose anything like this will happen, at least not until Brexit is resolved, and then, well, who knows?!?!?
I need to declare that I have no financial interest or otherwise in the named companies above. I was failed by the NHS as long as I lived in the UK (Scotland and England), however since emigrating to Israel I have found a more open mind and flexibility in prescribing, and certainly no rogue pharmacies fleecing the NHS, i.e. the taxpayer.
A very good article. One also wonders if untreated hypothyroidism is contributing to the increasing dementia rates as optimal thyroid hormone is closely linked to brain function. It is also interesting to wonder why many many first world countries have lowered the upper TSH to 2.5 and yet the UK has not. Are we stuck in the 1950’s and dropping from first world status. Research is necessary in this area – could it actually be a significant long term financial saving for the NHS to treat a broader range of people with hypothyroid symptoms if treatment impacts on later dementia onset – maybe this simple step could be part of the much sought after and hyped ‘cure’.
An excellent piece – in my cardiology practice over 25 years I have seen many patients with clear hypothyroid symptoms but normal TSH and free T4. Those unable to pursuade their GP or endocrinologist to treat them often develop abnormal TSH a few years later, and only then are their symptoms relieved by starting treatment. It really is a pity that doctors don’t listen to their patients more and appreciate the unreliability of “objective” tests.
It is very hopeful and really wonderful to know that some doctor’s are aware of all of the symptoms a patient can display.
Dr Kendrick also has brought attention to the dismal way we’re diagnosed/undiagnosed.
However, below is a link to a wonderful Debate within the Scottish Parliament – yesterday – about the withdrawal or non-prescribing of T3 which I think all of us who’re hypo will receive like a drowning man being saved.
https://www.scottishparliament.tv/meeting/debate-effective-thyroid-and-adrenal-testing-diagnosis-and-treatment-december-4-2018
All of the members on Healthunlocked Thyroiduk will be uplifted and others who hope that Associations think twice about their guidelines and are able to diagnose early on.
Despite me showing clear clinical symptoms I had to diagnose myself when my TSH was 100, despite the doctor telling me 3 days before that I had nothing wrong despite the fact that of the 23 different tests he requested apparently didn’t notice the TSH results. It was a good thing that I had got my own test a few days apart from his.
Please provide reference please for the 17:1 ratio of T4;T3?
If the basis for this ratio is either the ATA 2014 HYpo Guideline, or 2012 ETA L-T4 + L-T3, or R Bunevicius et al, 1999 or A Pilo, 1990 then it needs review.
I am one of the hundreds/thousands of people who have hypothyroidism. I was diagnosed at 28 despite being ill for 2 years prior. I’ve been taking Levothyroxine for over a decade now. I get thyroid bloods done at the gp and I always come back “within range”. At no point during my decade of taking Levothyroxine has it improved any of my symptoms. I went from being a very fit/healthy dancer to being someone who literally doesn’t function. Crippling fatigue every day and night, none refreshing sleep, heavy headaches, the feeling where your limbs and head are too heavy for your own body, foggy brain, confusion, unable to concentrate, thinning brittle hair, zero sex drive/libido (like literally none), constipation/digestive issues, low no, slow heart rate .. I mean.. these are just a few of the symptoms I face every single day. I’ve told gp’s many many times that I don’t think my Levothyroxine is working and all I get is repeat bloods (within range). I’m at a point in life now where I’ve had over ten years of this and am desperate. I work for an emergency service and have no idea how I’ve not been sacked after all these years! It’s just not funny any more. I’m an attractive young lass, (with giant bags under my eyes!) can’t form bonds or relationships of any description as my whole body is depleted of energy and life. It’s like being an outsider and looking in on your own life. (A bubble). Been round the referrals system however many times.. (never been referred to an endocrinologist though). Already my 20s going into 30s has been wiped away by this thing and to be honest due to feeling so poorly every solid day I don’t have any treasured/cherishable memories from this entire time. Too exhausted to even socialise now I don’t even go out, don’t drink, don’t smoke. Eat healthy. Tried every which way to take Levothyroxine.. empty stomach bed time, empty stomach morning an hour either side of anything, no milk no coffee no wheat/gluten. Every suggestion made has been tried. It just doesn’t work in my body! No I don’t have CFS or depression/anxiety .. (any depression I may feel is due to my complete depletion of energy and the life being zapped away through in optimal treatment for Hypothyroidism). I basically need T3. The NHS is letting me down. Keeping me poorly. Depriving me of my life for something simple. I pay National insurance like everyone else. I’ve been left so long on monotherapy T4 I fear it may have caused damage to my heart and brain. (Persistent inverted t wave was discovered and my brain is in a permanent cloud!) Off I go tomorrow to the G.Pfor my thyroid bloods! .. Guess what. I’m wasting my time.
It is so sad to hear these comments. I was in the same situation. I tested my increased symptoms myself, while on Levothyroxine. I found I could reduce the pains (which I had never had before) by coming off Thyroxine for a week or so. With this information I returned to my GP, who sent me to a consultant. The professor looked me in the eyes and said, three times, you are going to die. I said we are all going to die, professor, however, while I am waiting, take me off thyroxine and put me on T3. I got T3, because I was very sick, my TSH was over 150. That was over four years ago. My GP has complained at the cost of T3, but I have continued on it. I had also paid to see another consultant I met at the Thyroid meeting through the TPA website. He explained that my adrenal glands had stopped working due to all the stress in my life. He spent two hours urging me to talk about my life, what a joy! I am now also reducing the T3 as my TSH is almost too low. Dont accept being told what to do with your body, it is your body, you are responsible for it.
Claire have you considered NDT?
I get a years supply for around £100 and it has totally transformed my life.
I’m guessing you are a non converter like so many of us, labelled rare by the NHS?!
Have your T3 levels ever been tested?
Are your Vitamin D and B12 optimum?
Folate and ferritin?
What’s your diet like? Gluten and casein free?
Try taking on your local CCG as it’s them making the decisions on T3.
I’m sure you know all this anyway but just in case…
Hi Clare – am so sorry to read this. Like many others here, I now self-test and self-medicate with T3 and I think its saved my sanity. Its certainly saved my career.
Medichecks discounts thyroid tests on a Thursday. Get the all singing, all dancing one with T3, that checks for trace nutrients that are also essential to thyroid function. The thyroid forum on healthunlocked has some real user expertise. if you join there and post your results, you’ll get some really good feedback. People will also let you know their T3 suppliers if you ask. this information is shared via private message rather than posted on the forum.
good luck.. there is an answer out there but its unlikely to come from the usual sources.
X
Clare, please head over to the Thyroid UK forum on the HealthUnlocked.com community. Alternatively, try the forum at tpauk.com (Thyroid Patient Advocacy). They’re both very helpful and informative to the many, many people in your position, but the first forum is larger and more active. You will find other HCPs on the forums too. Doctors are generally not well regarded on these forums, for very good reasons, but in the private messaging area of HU-Thyroid UK a number of sufferers have ‘outed’ themselves to me as doctors. We are all struggling under the flawed diagnostic and treatment paradigms that have persisted for the past 40-50 years.
Clare the definition of madness according to someone was doing the same thing over and over again and expecting a different result. Don’t pander to these doctors who are so cavalier with your health and your life. Take control. Read up on Thyroid UK about why ‘in range’ is no use to a patient on Levothyroxine. If possible, do a private thyroid test via somewhere like Medichecks and learn what your Free T4 and Free T3 levels are. Also b12, Folate, Ferritin and Vitamin D. If these are low, demand an increase in levothyroxine and correct the deficiencies or a trial of T3. Many, many of us go it alone and buy Natural Desiccated Thyroid hormone online, the original (and best in my opinion) treatment for hypothyroidism. You can turn this around with a bit of patience and support from the thyroid community but I’m sorry to say, most likely without a doctor. It is what it is. A scandal.
Dear Clare
First of all, you have my full sympathy. It’s a terrible way to live one’s life. However, there are solutions. I will just list a few that you can easily follow up.
Do you know whether you have Hashimotos Hypothyroidism (an autoimmune disease)? Please ask your GP to test for the specific tests that show you do or do not have it, and if she can’t, then please ask her for a referral to an endocrinologist who can run them. Then, if the tests show that you have high levels of antibodies, you can do specific things to reduce them, mainly via dietary adjustments (there are many websites dealing specifically with this issue).
Having been there and done that I would go to http://www.tpauk.com and register so that you can read all the articles and join the forum. I learned about using NDT from it.
As you think you need T3, which is very likely, Paul Robinson’s book Recovering With T3, and his other books, guide you through the complex process of transitioning from T4 to T3, and cycling it according to the circadian rhythms. I am currently reading Recovering With T3 as NDT does not seem to be enough for me.
Something that I don’t see written much about is the emotional origins of the disease(or any disease for that matter). I learned EFT (from the Internet on Gary Craig’s website) when I had CFS and it was hugely helpful, however, it did not help with the hypothyroidism. Recently, I did a course of Matrix Reimprinting, which I am taking forward in order to heal the underlying causes of my illness. I am sure that dealing with the emotional precursors to illness is the best way to clear them (traumas, etc) and alleviate symptoms.
I hope that some, or all, of this will be helpful to you, and I wish you better times ahead.
Gabriella
I would just like to add that when I was recently in England (I live overseas) I was shocked to find out from a pharmacist that a box of 100 20mcg Cynomel (T3) from Sanofi (made in France) costs £350, yes you read that right, can you believe it? Well, in my country it costs £17, yes, that’s right, so who is profiting from the sale of T3 in the UK, ripping off the NHS and thus depriving patients who need it? This is a scandal. I can not understand why the NHS does not source it directly from Sanofi in France.
Believe me, it is not just GPs in the UK who are badly trained in Thyroid issues, I believe it is the case in many other countries. Health services, medical schools, hospitals, are all beholden to the pharmaceutical companies, and the GPs must not step out of line for fear of losing their license. And yet, I can not understand why endocrinologists keep such a closed mind. For supposedly intelligent people, they are quite stupid when it comes to the thyroid (and adrenals for that matter) and turn a blind eye to the real issues, and the effective ways of treating the problems that are caused by Levothyroxin.
Clare, use Google to find the Health Unlocked web site and join the Thyroid Patient forum. You might be able to get to it from the web site for Thyroid UK as well. I have had such great help from fellow patients on that forum. Get a print out of your latest blood test results when ready and make a new post, copy what you have written above and add your test results and ask for help Someone will be able to help you find out where your results really lie and what you can do next to help yourself back to better health. GP’s seem to be very badly trained in thyroid in this country. We have to learn about our condition and our results, and how to help ourselves look beyond the GP’s golden TSH idea.
I am a senior nurse of 36 years experience. I suspect I may be one of the normal test individuals mentioned above but have many clinical signs of hypothyroidism. Where should I go from here? My GP has refused to treat me. Can I buy T3 or natural replacement? Any help would be fantastic
Hi Pamela – May I suggest that you have a look at http://www.tpauk.org.uk. I found everything I needed there to get going with my thyroid problems and Thyroxine toxin problems.
Pamela I tried to get NDT from my dr and he said no but gave me a private prescription (only because I told him I was sourcing NDT). I still get very tired sometimes but much better than I was. I’ve got a life now. I take Erfa which is sourced from Canada. Not cheap but if I got it from the chemist it would be astronomical. All the best.
Hi Joan,
As a nurse myself who had their career as a critical care nurse derailed after 14 years full time work I empathise. There is much that can be done and after 12 years with the disease I have learnt so much. Would be happy to talk to you about it. Not sure how we can arrange that?
Hi Malcolm
Great article. I am a huge fan of your work and your articles on heart health, but this is a surprise bonus!!
You have literally told my story of high TSH and DIO2 deficiency however the consequence of insufflent T3 deficiency isn’t pretty and should be made obvious to the medical community. Why are the so worried about “cooking” their patients with T3 when most of them have bodies that are obviously crying out for it. … Seven years taking Levothyroxine (T4) will little conversion caused my weight gain, gut permeability, contributed to stage 3 adrenal fatigue from chronic anxiety and stress (another condition not recognised by the conventional medical community!), leading to atherosclerosis requiring a stent in 2014. I was obviously on the “somatising fruitcake” patient list at my local surgery!. Presenting with chest pain shortness of breath and an irregular ECG was still not enough for my GP to believe I was sick. Adding fuel to the fire she even refused an order by local A&E to perform a 24hr tape prior to my imminent family holiday to the Caribbean! She sent me off telling me I was “just stressed”. I returned two weeks later requiring stenting of 90% blockage in my LAD! Somatising fruitcake – my ass!
A year later I was diagnosed with Hashimoto’s Thyroiditis (which usually causes hypothyroidism?) So I had obviously had this condition for many years as I had been complaining of symptoms for years!
I put myself on NDT (purchased from Thailand) and within two days I felt much better. I just needed some T3 to get my Zest for life back because that’s what T3 does (among many other things). It’s what gives you drive! Yes I have been prescribed antidepressants in the past but they just numbed me and made me feel like a zombie. They didn’t last long with me.
In 2013 I contacted Dr Skinner for help but he had a long waiting list. Six months later I had heard he’d died of a heart attack, sad as he had helped so many people.
Thanks again for your article. Much appreciated, I will share.
Heather Lewis
PHC Ambassador and student Nutritionist. We met at an IHCAN Conference in 2018 where you debunked the high cholesterol myth. Thanks again for telling the truth.
Recently read your article on Covid in one if our weeklys Australian Doctor
Have to say I admire your scepticism and persistence . Big Pharma has been feeding us for years. I just got sick of it and have not seen a Drug Rep for more than 10 years
I have questioned the conclusions of the WHI conclusions re HRT but I think the reporters I have spoken to think that I am a crank.
The conclusions that were publicised seemed like total crap but that did not suit the general narrative.
I would love your opinion regarding my concerns if you would allow me to raise them
Thank you for sharing your info. I really appreciate your
efforts and I am waiting for your further post thank you once again.
I left a comment a few years ago and I’m now reading this article again in 2020, and I wanted to provide an update, should it be of benefit to someone out there…
Some background.
I became very ill at age 17 and was subsequently diagnosed with hypothyroidisim (TSH of 5). I was given a prescription for Thyroxine which made absolutely no difference to my symptoms. When I reported this to my GP I was told it couldn’t be my thyroid as my blood results were now “normal”, and thus began a 10 year struggle with the doctors…
I did a lot of research online and discovered many other people in the same position as myself, and the recommendation was to find a doctor who would prescribe T3 or Desiccated Thyroid. It was a monumental struggle and it took many years but finally I was able to find a sympathetic GP who herself suffered from hypothyroidism. She prescribed Desiccated Thyroid and we worked together to raise my dosage every week, monitoring my symptoms. She mentioned that she had to be “careful” with doing too many blood tests as they would be “flagged by the system”.
After that I had what I can only describe as a miraculous recovery. I had energy, my brain fog was gone. It was like someone turned the light on. I lost all the weight I’d gained while I was sick (over 20kg). I felt like myself again, and I couldn’t wait to put this ordeal behind me and get on with my life. For years I was relatively well, I was able to have a relationship, I successfully ran my own business. Life was good. But then…
It was 2017 and I was 24 years old. I felt myself becoming fatigued, tired, unmotivated. It crept in slowly at first, it wasn’t until my colleagues at work began to tell me that I was forgetting to carry out basic tasks that I realised my health was (again) declining rapidly. I was confused – nothing had changed. I was on the same dosage of Desiccated Thyroid… Although I’d changed to a different brand only a few months prior as the price of my medication had jumped. I started to play around with dosages and I tried some different brands, unfortunately, not one of my adjustments made any difference.
Mentally, I was not coping. I was now dealing with the reality that I was sick AGAIN and I really didn’t know who to turn to, and by this point I’d given up on doctors completely. It was a very dark time for me, and then I did something I thought I’d never do – I decided to stop taking my medication. The result? Nothing. Nothing happened, and nothing changed. I began to wonder whether I was going crazy.
After this I had to quit my job, close my business. I tried to study but I was so tired I would fall asleep sitting up at my computer. I spent most days in bed or curled up on my couch. I’d gained all the weight I’d lost back, I was forced to move in with my boyfriend so that he could support me financially.
When I posted my last comment here back in 2018, I had just purchased some T3 from overseas and I was hoping that T3-only would be the answer to my problem.
I was wrong.
Again, like the other attempts I made, T3 made no difference to how I felt. It really was the final straw and I began to question whether the problem really was my thyroid. I had a thyroid panel done, over 6 months after I stopped taking my thyroid medication and I was shocked to say the least when my TSH came back as only 2.5. My T4 was on the low side of normal. The doctors told me I no longer had a thyroid problem.
_____
So it’s now October 2020, and where am I at?
Well, firstly, (and thankfully) in addition to the litany of symptoms I experienced, fatigue, brain fog, weight gain… Mostly vague symptoms with no definitive cause, a few new, more specific symptoms appeared. What began as a tender tailbone turned into back pain which woke me from sleep early in the morning. I also had joint pain all over. It took a few years but in August of this year I was eventually diagnosed with Ankylosing Spondylitis. Basically a degenerative form of arthritis.
It answers some questions, but not all. I’m certainly over the moon that I have a diagnosis so that at the very least now my complaints will have some form of validity. I no longer have a “mystery illness” and I can tell you now, most doctors ARE NOT interested in trying to work it out.
I’m now revisiting the idea that I do still have a thyroid problem, and perhaps it was the inflammation in my body (caused by the arthritis) that somehow interfered with my bodies ability to process the hormones I was giving it. Looking back I think the symptoms of the arthritis began around the same time my thyroid-like symptoms returned.
I desperately wish I knew the answer. My life is still very much on hold.
For now, I’ll continue to search for an answer. I’ve been off all thyroid meds for about 2 years and intend to give them a try again, hopefully I’ll be able to get the inflammation in my spine under the control a bit more first.
Wish me luck
_____
I still believe Desiccated Thyroid was responsible for my recovery all those years ago, and I really hope the medical community is able to make some progress on this issue, but it doesn’t seem likely anytime soon…
Wow, what a story. And kudos to you for working it out. You are right, GP’s are not interested in any of us with difficult thyroid journeys.
I hope you can find a suitable medication process to help you overcome this and yes, I suspect that your thyroid will still need some support.
Thanks for coming back and giving the update. It’s very interesting. I’m literally at the start line for my T3 journey. I have some tablets. Just trying to pluck up the courage to take them.
ThyroidAus – I sympathise with your difficulties as I, too, am struggling with hypothyroidism for many years. In the past year I have learned that I have Lyme disease and some co-infections. Lyme can masquerade as hypothyroidism amongst other ailments. I went to what I consider to be the authority on Lyme, Dr. Klinghardt, well actually, to a couple of therapists who trained with him in his ART method. It is well worth contacting the Klinghardt Institute to find a practitioner. Yes, it is expensive, but you get the answers you need, including whether it is the thyroid which is the problem, or something else.
Thyroxine doesn’t help you if you have a de-iodinase genetic fault and the T4 is not converted properly into T3. In this case, using thyroid glandulars, which are much cheaper than NDT, can be very helpful. Just get them from a reliable source. tpauk.co.uk is an excellent resource for all matters concerning the thyroid, and it is independent. It has an excellent forum.
Good Morning Dr Kendrick,
I would like to thank you so much for this article. As someone who suffered for 8 years with hypothyroidism, at the hands of the NHS ( I don’t blame the doctors, I blame the guidelines), culminating in a visit to an Endocrinologist who told me what every other doctor had told me. “Well your bloods are ok”, but he compounded the insult by saying ” Your weight is probably down to your age, not your thyroid”.
I waited 8 years, living a hypo Half-Life to see him!
I didn’t go back.
I started taking NDT after considerable research and scouring online reviews fr9m fellow sufferers.
It took a little time to find the right does for me. When I get dragged in for occasional blood tests, I’m told I’m over medicating. I really don’t care what they have to say, because the system is so generically flawed. My barometer, is based entirely on how I feel and function. Please be assured, I do not wish to swing from from light fittings, or go white water rafting. I’m not an adrenaline junky, I just want to lead a normal life.
Covid has thrown up some difficulties in obtaining NDT, therefore I’ve had to change my brand. My TSH has gone up to 113, so they’ve referred me back to the same endo (oh joy).
In the meantime I will be purchasing a private blood test, in order to arm myself with the facts, before I have to deal with this man again.
Yet again I would just like to say Thank You, for not a sheep.
Sounds like you have got a batch with low or no T3 in it. Can you try for another source or brand? This endo you are about to see is an idiot. Good luck.
Hi there. We fought for years to get T4 and T3 for myself and my daughter. However I got cancer and now I take what GP (UK) would consider very high dose iodine (Lugol’s 12%, 8 drops daily) (although they’ve never bothered to ask how much I take! lol) to stop cancer coming back (along with a complete change of diet and lots of other supplements, all along with same dose of T4 and T3.) Thyroid readings all fine, except when I reduced Iodine down a bit and they all went to pot) Put Iodine back up and now they are fine again. I also take 20,000IU of vit D3 daily along with a super K (very important) I don’t trust Doctors or consultants I’ve been lied to too much. Do your own research…it’s your life not there’s. My daughter’s life was ruined from 11 – 24 because they ignored our pleas, she had classic Thyroid symptoms but ‘no it’s not your Thyroid! We even saw Dr Skinner before the GMC hounded him to an early grave.
This is an ongoing tragedy for many people. I hope to turn my attention to this issue again, when time permits.
Here it takes place kind of the other way around. TSH a bit high, 7, T 3 and T4 normal, but AntiTPO always very high. I take 50mcg of T4.
I’ve changed the dose several times, but I’ve never had symptoms of these common ones that are said. Anti TPO is Hashimoto, does that mean thyroid no longer works?
Hashimotos is an auto-immune disorder but does not mean your thyroid no longer works. This requires a different approach, not the same as non Hashimotos hypothyroidism. You can heal auto-immune issues with diet alone and perhaps supplementation, which requires a naturopath or Functional Medicine practitioner to advise on what supplements to take. Isabella Wentz is a recognised specialist on this topic, and the best is Dr. Datis Kharrazian who wrote some very comprehensive books on the thyroid. And Dr. Aviva Romm and Dan Kalish and Dr. Christianson, among many others.
It’s possible to cure even in Hashimoto’s case, you mean? I will research on the experts indicated
Dear Dr Kendrick
Would it be possible for you to give me your opinion on my latest thyroid results please.
I have been on T4/T3 combo since 2016 after doing extremely well on Levo only for over 28 years but once I hit 60 things went very wrong.
My Gp prescribes my T3 according to what I advise him as he freely admits that he knows little about hypothyroidism.
These are my latest results but I have developed bad constipation and swollen ankles over the last several months ( I use estrogen patches)?
5/9/22
150 Levo plus 15mcgs T3 last dose 8.20 previous day
TSH <0.03 (0.35-4.94)
Ft4 14.1 (9-19) 51%
Ft3 4.3(2.6-5.7) 54.94%
Please help as I’ve no one else to ask.
Do I need a dose increase?
My dose was increased to 150 T4 after previous results where ft4 and ft3 were lower than these results.
Yours sincerely
Rosemary Greenfield age 69
Dear Rosemary
I am not a doctor but I use NDT (Natural Desiccated Thyroid) for my hypothyroidism. Based on many years of experience, if my results were like yours I would have hypothyroid symptoms. I look to keep my T4 in the upper quarter of the range, but the T3 I like to have slightly above the range (of course my GP sees this and almost screams that I am hyperthyroid). When taking the blood test, I take my last dose of NDT the day before, and take nothing on the morning of the test (I take it after the test). My endocrinologist is not bothered by the almost non-existence of TSH. After all, if your medicine provides the hormones you need then the pituitary gland doesn’t need to produce TSH. He says this is primary hypothyroidism (I do not have Hashimotos). Regarding your dose of T4, it looks like it is not doing very much to convert to T3, if at all. I did a De-iodinase genetic test and found out I have a genetic problem with this enzyme, which converts T4 to T3 so that it is available to enter the cells. So for me the NDT works well, but you may need to increase your T3. I wouldn’t bother increasing T4. I highly recommend going into tpauk.com, which has an excellent forum on all things thyroid from a holistic perspective. That’s where I first saw Dr. Kendrick’s article and am following it ever since then. This website has helped me more than anything else to navigate the crooked world of hypothyroidism as practiced conventionally.
To your good health!
He won’t answer you Rosemary. This thread has been running for years with no further input from Dr K.
Go and join the Health Unlocked patient forum for thyroid. The amazing patients there will be able to help you sort out what’s going on and what to try next. Just google it. “HealthUnlocked Thyroid”.