The long awaited book by Prof A Bianco is now published. No doubt it will be expensive.
Rethinking Hypothyroidism
November 2022
DOI: 10.7208/chicago/9780226823157.001.0001
Publisher: University of Chicago PressISBN: 13:978-0-226-82316-4Project:
Rethinking Hypothyroidism: Why Treatment Must Change, and What Patients Can Do
Antonio Bianco
Here is a summary of what's in the book
The book is finished and it will be out Nov 15 (It is already available for preorder on Amazon).
The book offers an accessible overview of the treatment of hypothyroidism and the role of big pharma in shaping it, making the case that the current approach is failing many patients.Part 1 is about the Crisis, and how two patients of mine got me involved with hypothyroidism. Like most doctors, I did not know that patients with hypothyroidism may remain symptomatic despite treatment. I explain how doctors see this problem and the influence of big pharma.Part 2 is about science. Here I provide the essential knowledge necessary to understand why some of the recommendations in the clinical guidelines are flawed. I use science to engage my colleagues but have tried to make the explanations accessible to anyone interested.Part 3 is about the history of hypothyroidism and its treatment. Here I tell what I discovered by interviewing key people and researching hundreds of books written since the 1800s. It starts with Napoleon and goes all the way to the 21st century. This part is fascinating.Part 4 contains the scientific evidence supporting the claims made by millions of patients during the past 50 years. Symptomatic patients will see confirmation that they are not alone. Complaints have been shared and expressed for decades. We knew about them from early on.In the final part, I provide readers with information to help with their treatment. I explain options for patients to discuss with their doctors. Lots of things can be done now. I e
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I see he has interviewed "key people". Don't think Rudolf Hoermann, Johannes Dietrich or Diogenes were contacted. Do note that simultaneously, Bianco was affirming the guidelines which he now disparages. Difficult riding two horses going in different directions.
... and of course, finally, he has his patent on slow release T3 so now it's time to acknowledge its uses?
I do respect him - I blagged a free consultation at the tea break at a BTA conference some years ago - at least he looked for solutions and had some suggestions. But I sit here happily on bog standard T3 for 8 years now and am concerned where his intervention will lead.
Personally, I won't. I believe that really valuable progress, when giving a decisive call to doctors everywhere, from reconvened advisory bodies, must change diagnosis and treatment modules, to benefit patients in real terms.
I'm trying to write a review and explanation of what he is theorising. Please tell me where I may be wrong. I also see contradiction there, but it seems he is, on the one hand, canning diagnosis and treatment with T4 alone, solely based on TSH, and, later, suggesting that treatment with T3, or combination therapy T3 and T4, or NDT, should [usually] remain within 'normal' TSH limits. So, he is suggesting that a proportion of people treated with T4 alone can be unwell, but if you adjust their total treatment to include some form of T3 [and less T4], that should fix their symptoms, and, they will then remain within normal TSH range. So the problem he is addressing is how to treat people who don't respond adequately to T4 treatment alone, and he thinks that this can be done by substituting part of the T4 with T3, and TSH will then be a good therapeutic indicator. Also that NDT contains a bit too much T4 i.e. higher than the usual human proportions.
He reports on research that says that D2 (which is classically understood to regulate T3 levels by converting T4 to T3) is not only secreted by the pituitary gland, which regulates levels of T3 according to the level of T4 in the circulation and adjusts levels of TSH accordingly, but that some organs secrete D2 themselves to conserve T3 levels in those organs, notably the brain (as opposed to the pituitary gland, which is in the brain) and these levels don't reflect levels in the blood circulation. He notes that this is contradictory in the theory that TSH reflects the level of T3 throughout the body, and that whilst some organs do, many organs do not have the capacity to secrete D2. "I was surprised to see clear signs of hypothyroidism in the liver, skeletal muscle, and different areas of the brain, despite normalization of TSH levels with T4." (p.166)
P94-95: "Their work revealed that organs that express D2 have enhanced thyroid-hormone action, as these organs contain T3 that has entered from the circulation mixed with T3 produced locally.2 Larsen and Silva immediately understood this property of D2 as being instrumental in two ways, based on two organs:
• (1) In the pituitary gland, where TSH is produced. There, the presence of D2 makes it possible for the secretion of TSH to be regulated by T4 in circulation. T4 is taken up by the pituitary gland and converted to T3 via D2 so that the levels of T3 inside the pituitary gland reflect the levels of T4 in the circulating blood. Thus, a drop in circulating-T4 levels reduces T3 levels inside the pituitary gland, triggering an increase in TSH secretion.
• (2) In the brain, a tissue that is exquisitely sensitive to thyroid hormones. There, the presence of D2 increases the local amount of T3, ensuring that sufficient levels of T3 are present all the time. In addition—and perhaps more important—D2 activity is adjustable. It accelerates when circulating-T4 levels drop. A faster D2 pathway compensates for the drop in circulating T4, preserving the T3 levels in the brain. Larsen and Silva interpreted this as a compensatory mechanism—again, to ensure that sufficient amounts of T3 remain in the brain at all times.
However, as we think about these two powerful concepts—resulting from events in the pituitary gland and brain—we realize that they are irreconcilable. Either D2 functions to faithfully reflect the drop in T4 levels (by generating less T3), which accelerates TSH secretion, or D2 functions to minimize the drop in T4 levels (by stabilizing T3 production), which prevents changes in TSH secretion. You can’t have it both ways. Nonetheless, from a clinical perspective, it is clear that the way T4 normalizes TSH is greatly influenced by the presence of D2 in the pituitary. Well, most organs don’t have D2. And yet, for fifty years we physicians have used TSH (which depends on D2) as a reference for T3 action in the whole body. It is now clear that using TSH levels to define the dose of T4 in the treatment of hypothyroidism is far from perfect."
I will put it in short. TSH may be useful in diagnosing hypothyroidism. In monitoring treatment it is highly imperfect if not downright misleading. The trouble is that Bianco's take on the problem is rather genetic as regards T4-T3 conversion. The real basic problem:what he will not countenance is that our group have explained things in a way Bianco has never thought of, and thus ignores.
TUK has a list of our publications which is available to you. Look under Hoermann R for the details.
Diogenes, did you mean 'genetic' or generic? I was really saying what I had understood of what Bianco was saying. I was not asserting that he was right or wrong. I thought the research he described that showed that T3 levels were adjusted differently in various organs and independently of bloodstream levels in some was new, but maybe it isn't. Has Hoering covered it? I did not know that Thyroid UK had a particular theory derived from Hoering R. Does it have a theory statement somewhere? I did look up Hoering R but do not know where to start among his correspondence. Has he written a book or a literature review? Personally, I do not go by TSH and neither does my GP. I was diagnosed by my T3 levels and symptoms and my condition responded to NDT, however I developed severe and life-threatening atrial fibrillation linked to a higher dose than I am taking at the moment, so I have become very interested in how to avoid this and raise my dose a bit and I would like my cardiologist to understand the theory better.
I meant genetic. Because Bianco believes that genetic variation in the enzymes that convert T4 to T3 is the answer to the combination problem. As for T3 (as FT3) stabilisation we've been writing about this from about 2015. This paper is a start, but we've gone into it more deeply since then. We don't believe genetics is the whole or indeed the most important answer. The real stabiliser for FT3 is the T3 directly produced beside T4 in the thyroid gland itself.
Individualised requirements for optimum treatment of hypothyroidism: Complex needs, limited options
August 2019
Drugs in Context 8:212597 DOI: 10.7573/dic.212597
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
I’ve pre ordered this one… anyone want to do a book club post for us to share our thoughts? I’d be interested in hearing any revelations from Prof. Bianco but don’t think I’ll be buying both.
I used the "Look inside" option to see some of the stuff in the book. The first paragraph in the Introduction is as follows :
The story of hypothyroidism treatment presents a solution, followed by a mystery. Why did so many of those treated for hypothyroidism ultimately fare so poorly? How was a century-long medical triumph transformed into a tarnished victory, fraught with conflict and exhaustion? Why did doctors dismiss the millions of patients insisting their treatments were failing; and why did patients find themselves suddenly doubting decades of reliable, tested science? How did the case of hypothyroidism backtrack from "closed" to "open"? Most important, what can these patients who continue to suffer do? This book tells that story.
I can answer some of these questions myself :
Why did so many of those treated for hypothyroidism ultimately fare so poorly?
The majority of the patients were women, and women's voices have rarely been heard and taken seriously by doctors from the ancient Greeks onwards. Men who develop thyroid disease in modern times may be treated poorly as well, probably because they have "a woman's problem".
How was a century-long medical triumph transformed into a tarnished victory, fraught with conflict and exhaustion?
For much of that century people were treated with NDT which contains both T4 and T3. Many people feel better with NDT than they do with Levo. People who do well on Levo would often do well on NDT too.
When Levo supplanted NDT as the doctor's treatment of choice it wasn't even put through Randomised Controlled Trials to see if it was an improvement on NDT or was at least as effective. Levo was bulldozed in and became the treatment of choice for doctors without any testing on patients at all, as far as I can tell, because it was cheap, simple, and the patients were mostly women anyway so their complaints could be ignored.
When scientists discovered that T4 was converted to T3 in the body that made things even easier. No need for T3, the patients made it themselves, so Levo was all that was required. Woohoo!!! Being an endocrinologist interested in the thyroid had never been so easy. It was so easy in fact that many medical schools barely mention the thyroid at all, and some medical students and doctors have admitted they spent just a few hours or an afternoon on studying the thyroid. Nowadays there appear to be no specialists in hypothyroidism. Diabetes is where the career opportunities and the money lies.
Also, the cast-iron belief of doctors that TSH was the only thing necessary to diagnose and monitor treatment means that any patient complaining that they felt awful on Levo was dismissed, or "diagnosed" as mentally ill, or some other condition was looked for and not found so that reinforced the diagnosis of the patient being mentally ill, depressed, anxious. Doctors were spoiled for choice in ways to dismiss thyroid patients, and the doctor could always prescribe anti-depressants. (And, in the UK for a while, prescribing anti-depressants was actually a money spinner, courtesy of "The Quality and Outcomes Framework" (QOF). So the obsession with and use of TSH as a diagnostic and monitoring measure was one of the early ways hypothyroidism treatment became a disaster. Forcing patients off NDT and on to Levo was also a disaster.
Why did doctors dismiss the millions of patients insisting their treatments were failing
Because most of them were women, and doctors had been taught that hypothyroidism was easy. Who would want to make their lives harder by taking the patients seriously? And any doctor who did take the patients seriously was threatened with being struck off the medical register, found their careers going nowhere, and were considered to be quacks.
and why did patients find themselves suddenly doubting decades of reliable, tested science?
If someone is given the standard treatment for a disease and it doesn't help the patient to feel better, and no other options are offered, why would patients trust that treatment?
Doctors assume that is the patient doesn't feel better on the standard treatment then the patient must be non-compliant with their treatment. It's much easier to blame the patient rather than the treatment.
Once a patient has been dismissed as unreliable and non-compliant it affects other health problems they might have and getting treatment for anything invisible becomes harder and harder.
Doctors assume that people they have diagnosed as mentally ill can never, ever be physically ill unless the patient's problem is visible. Everything is caused by mental illness because the patient is mad and can't think right. Under those circumstances why would a patient trust doctors or their research or their treatments.
How did the case of hypothyroidism backtrack from "closed" to "open"?
One thing that may have helped...
The American Thyroid Association (ATA) produced new guidelines for the treatment of hypothyroidism in 2014. It was mostly a case of "carry on as before, fellow doctors". The new guideline hadn't changed anything much.
They published a link to their new shiny guideline on their Facebook page. At the time they allowed ordinary mortals to post on their Facebook page, and the general public could read their page even without a Facebook account. They were inundated with thousands upon thousands of complaints from patients on Facebook. It included quite a lot of doctor abuse too. It seemed like it would never stop, it just kept on going for days, possible even weeks.
(All these entries have long gone and the evidence it ever happened no longer seems to exist, or I simply can't find it. Having no Facebook account doesn't help.)
I think it might have been the first time that many doctors had really been aware of the misery, suffering, the depth of feeling amongst patients, and yes, even the hate for doctors from tens of thousands of women.
Of course, the internet has helped patients enormously. They can talk to each other via forums and support groups and discover that they are not alone but are just one of millions of patient around the world who are suffering from under-diagnosis, misdiagnosis, under-treatment, the wrong-treatment, disbelief and dismissal from doctors. And how many thyroids have been removed that were removed unnecessarily?
Doctors lie to patients all the time :
a) They tell their patients that they don't know anyone else who doesn't get on with Levo.
b) Patients have been told that NDT is unreliable.
c) T3 is addictive.
d) Subclinical hypothyroidism doesn't cause symptoms.
e) TSH tells them everything they need to know, Free T4 and Free T3 are irrelevant.
The story of hypothyroidism treatment presents a solution, followed by a mystery.
I sense this has the whiff of an advert for a "trendy" DIY thyroid manual.
why did patients find themselves suddenly doubting decades of reliable, tested science
Methinks that should read, "doctors" .....not " patients".
They tend to deal with opinions.... not facts
It's so much easier to blame the patient!
I'm currently reading a book by a world renowned Prof/clinical scientist
He wrote, " Plausible explanations, lacking empirical evidence abound in medicine so that imaginative invention, wrapped in jargon, is often used to answer inconvenient questions".
I think we've all had that "waffle"
I was told by an endo that taking T3 was like getting into a car....you could arrive safely but you could also be killed.
What could a woman possibly know!
In the final part, I provide readers with information to help with their treatment.
Is he admitting that doctors are not up to the job!
.....or selling himself as the saviour of thyroid patients
Lots of things can be done now.
Lots of things.....that should be interesting! There are already treatments, the medics just won't entertain them!
"Now" he says as if they hadn't already existed for decades
I explain options for patients to discuss with their doctors.
Discuss with their doctors!!!
First educate the doctors then productive discussion may be possible.
One GP told me he had never heard of T3!!
He therefore had no idea how to interpret lab results
My husband has just asked, " Will this book be helpful?".
My response, " Just interesting!"
Not impressed so far....but I've ordered it anyway.
fist bumps all round! Totally agree with you and humanbean and I’ve only been invested a short time. I can only imagine the frustration this being decades of patient abuse and not just months/years. 👏👏
It's not just patient abuse that patients are dealing with, it's the ensuing medical conditions they collect by being on an ineffective thyroid medication for decades.
We certainly need a sea change in how it's treated. NHSE don't seem to be bothered with thyroid disease. Patient groups were told that NHSE can't tell ICBs to follow a national guideline. But they said we should arm patients with a toolkit to fight their individual ICBs on the T3 issue. It beggars belief
So much that you say resonates so strongly DippyDame and humanbean...(sorry humanbean, I can't master the art of tagging you).
I shall be interested to learn from those who buy this Bianco book if he offers solutions to "lots can be done now".....and does it involve the medical profession taking his words on board, or is still up to individual patients to inform medics? Not good on that front for us, is it?
When scientists discovered that T4 was converted to T3 in the body that made things even easier. No need for T3, the patients made it themselves, so Levo was all that was required. Woohoo!!! Being an endocrinologist interested in the thyroid had never been so easy. It was so easy in fact that many medical schools barely mention the thyroid at all, and some medical students and doctors have admitted they spent just a few hours or an afternoon on studying the thyroid. Nowadays there appear to be no specialists in hypothyroidism. Diabetes is where the career opportunities and the money lies.
To think that my life (and many others) has been borderline unliveable due to this is heartbreaking.
Regarding the fact that T4 converts to T3, I just did a quick search using the search terms "conversion T4 to T3" with a date range of 1960 - 1970 on Google Scholar and based on the dates I was seeing that must have been discovered in the late 60s or 1970. By 1970 it already appeared to be an accepted, but fairly new, fact. Please don't take this as gospel truth.
Bianco says pretty much all you have said above. He gives a good detailed history of the research. As such, his work is useful. The other research he mentions is also very useful and detailed and interesting. It is a pity that he confuses things at the end by saying that proper adjustment of a combination therapy will finish up with TSH within normal limits, and it does not really gel with much of what he has written in his book about how different organs adjust T3 levels, with some maintaining T3 levels independently of levels circulating in the blood.
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