Antonio Bianco has stated his intention to write and publish a book on the problems of correct thyroid hormone dosing, coming out in the autumn. Here is his preamble and intentions. This at least shows how the tide is turning:
Rethinking Hypothyroidism: Why Treatment Must Change, and What Patients Can Do
Antonio Bianco
Goal: This book will be published by the University of Chicago Press in the Fall of 2022. The book is about the treatment of hypothyroidism, its history, underlying science, and the changes that occurred over time.
Most patients respond well to daily tablets of levothyroxine, but about ten to twenty percent (some two to three million individuals in the United States) are far from living a typical life. They exhibit “foggy brain”—low energy, confusion, and poor memory. Many doctors have shrugged off their complaints, believing they are unrelated to the thyroid disease.
In this book, I offer an accessible overview of the disease’s treatment and make the case that the current approach is failing some patients. I call for alternatives to improve lives, and I equip patients and their families to advocate for other treatments.
Written by
diogenes
Remembering
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Sounds good. The ten to twenty percent figure is of course derived from the subset that achieve diagnosis via blood test results. There are many more who fall outwith this group. However, it is a welcome step forward.
Sounds promising. Writing even that much 20 yrs ago, would have seen him in the 'alternative/ renegade' bin. It will be interesting to see what he writes in full.
I'm not so keen on the choice of of "'foggy brain', low energy, confusion , poor memory" as a description of the rather more serious and life altering issues many of us face , but i'll take it for starters.
I also really doubt that it is just 10/20 % . of those officially diagnosed and treated on Levo.
I strongly suspect there are at least another 20% of those patients, who are 'counted' as having 'adequately treated hypothyroidism' , and coincidental co-morbidities of CFS /fatigue/ somatic disorders/ depressive disorders /etc etc.
But, hopefully the people who need to read this will actually do so!Here, we are very fortunate to have life saving support but I often wonder how many poor souls are slowly fading away behind closed doors because the people charged with treating them are incapable of doing so.
I read " Tears behind Closed Doors " as the title simply highlighted how I coped :
I then invested in Elaine Moore for Graves Disease - though I had already had the RAI thyroid ablation and discharged as " normal " :
Barry Durrant-Peatfield was then the turning point for me, as his books were written for the patient and enabled me to take back some control and slowly my confidence in myself was restored and now I'm self medicating and much improved.
Last time I looked all these books were available through Thyroid UK .
Thank you, I'll have a look at these. I too have had RAI and supposed to be normal. Gone private last September, trying T3 with my levo but though better in some ways, still struggling x
I agree! Also, many people are not very self-aware as to how they feel. They could not tell you if a particular substance, food or drug made a difference in how they feel. My mom is one such person! Boggles my mind.
The 64000 dollar question is: will Bianco (and with our help) put to bed the idea that low FT3 levels are not diagnostic of sufficient biological activity in the cells. This seems to be the bedrock on which (TSH and FT4'ers only) stand as regards sufficient or insufficient dosage. FT3 measurement has been merely cast aside as inadequate in this regard whereas of course, it is crucial in forming an informed diagnosis. The discipline will have to stand on its head to get the right vision. At the moment they are upside down and accuse anyone else standing upright of being upside down in turn.
Thyroid Hormone Resistance in various forms, low cellular T3, cellular hypothyroidism - a rose by any name!
This eventually turned out to be my problem but there is little written about it - or understood - as far as I can ascertain.
A supraphysiological dose of T3 has resolved much of my symptoms though at age 76 I guess not all can be overcome!
I'm now convinced ( based on my sketchy medical/ family history and considerable digging) that I was born this way but nobody was able to join up the dots and instead suggested various syndromes and ailments throughout my life which never convinced me. Possibly including the removal of my tonsils at age 4, serious early childhood earache ( which I've read can be an early indicator of RTH) "soft" teeth despite robust attention to dietary requirements and so on to CFS and FM and more. I had to repeat primary one, not because I lacked ability but because I missed so much time in school and had to catch up.
I have no doubt that, of recent years, my body was slowly shutting down and without much reading and much support from here I may not now be able, alive even, to regularly rant on this amazing forum forum.
So totally, I agree with your 64,000 dollar question....cellular T3 level is a vital discussion, and all the more so when other solutions are not forthcoming. Since this is where T3 becomes active it seems obvious to me (who had no idea what T3 is until I arrived here) but it seems to be overlooked, ignored or misunderstood by practitioners.
I had to go against medical advice to find the answers and to self medicate to improve my quality of life....it worked!
A recent heart scan showed a healthy heart and my bones are strong!
My entire life and that of my supportive close family would have been different had I known why I was struggling over the years....at times in a very dark place. Medical science has hugely progressed over the intervening years but still this condition remains in the dark ages.
I realise I've partially bared my soul and that I may sound like the proverbial drama queen but this has been no drama ...it is stark reality!
The tide must turn ...for the sake of all those who are struggling as I have done for most of my life and for those who have yet to come. I stand upright!!
Thank you for all you do for us....and to Antonio Bianco.
I'm certain that in the totality of possibilities, it is not the case that everyone is in the reference range, whereas those with any form of T3 resistance will lie well outside as a separate group. I think there is a continuous spectrum of subjects, producing values that lie just above the range to well above it. This will in rarer subject with lesser resistance, potentially give problems in diagnosis.
it is not the case that everyone is in the reference range
I recently had some blood tests done by my GP - not thyroid-related. In discussing the results with a GP I was told that one of them was elevated "but that's normal for you". Nobody had ever told me this was the case, and I thought I had copies of all my NHS blood test results, but clearly they've hidden a few from me. I wondered if this was the latest phrase being used to dismiss patients, particularly older women like me.
Doctors must think that over-the-range TSH is "normal for me" too. They ignored it for several years without ever telling me about it, and I only found out when I bought a copy of my GP records.
But how can this ( badly understood) problem of significant resistance be addressed?
This cohort of thyroid patients, many of them (allegedly) being neglected and left to suffer without a therapeutic dose of T3, need help.
The numbers may be relatively small but that does not diminish their suffering.
Recovery currently relies basically on trial and error....if trial is ever an option.
Man has successfully put the James Webb telescope into deep space yet there appears to be no-one in the medical world prepared ( or permitted - there are examples) to think out of the box to and to give this group the medication they need. It's not rocket science!
I hope Professor Bianco succeeds in his worthy mission to change things for the better. I fear it may be another case of, you can take the horse to the water trough but....
There is more resistance involved here than just thyroid hormone resistance ... methinks!
I have suspected for some time that I have a form of thyroid resistance, and yesterday found a snp, with published paper explanation as to what it does to the pituitary gland. I will be pursuing this with vigour.
Others of us have a problem where our FT3 is inside the range but not very responsive and nothing is energising the cells. I haven't yet, in years of trying Levo only, now combo, managed to get my FT3 to 50% of range, despite over range FT4 or below range FT4. So my GP says I'm fine and "it's not your thyroid" but I'm on my knees (except I can't be because it hurts too much). I can tell, for a few hours after a dose increase, that some hormone hits the cells. I can walk properly again and I have energy. But it never survives a night's sleep. Next day, back to where I was before. Something is blocking the T3 from reaching my cells. I am looking at rT3, and as a result I've reduced my Levo dose, but that dropped my FT3 as well. Every intervention seems to reduce FT3. Now I'm trying to push the T3 dose up, but I have to be very careful because I live with permanent atrial fibrillation (which I'm sure is caused by low thyroid hormones in the cells) and dose increases can and do impact my already rubbish HR and pattern, at least for a time.
I'm so tired of it all. Ready to hang up the towel, but don't have a decent pension so can't.
rT3 doesn't cause symptoms. It's inert. And, it only stays in the body for a couple of hours before being converted to T2. So, if you feel bad, it's likely to be due to your low FT3, rather than anything else.
Very much doubt an endo would even have heard about rT3, actually. They're not very clued up on thyroid, as a general rule. So, even if your rT3 was high, doubtful he would have any idea what that means.
This might explain further the previous links I gave you
Reverse T3 might not give symptoms of it's own, but it is a potential by-product of diodinase activity. I know I have Dio2 issues so I could also have issues with Dio3 converting too much T4 into rT3 and even possibly some T3 into T2 (see thyroid patients Canada for more about that). The automatic result of such activity is too little T3 in the cells but the answer may not be more hormone. It might be, but it might be changing the ratio of T4 to T3, which is what I'm trying at the moment.
My private endo has heard of rT3. I'm not sure how far his knowledge goes but he agreed with me when I told him what I was going to try and why. But sadly so far I'm seeing no improvement.
I am currently dropping my Levo and increasing my T3. I'm hoping I can get some relief before needing to be T3 only. I'd rather not do that if I can avoid it. But it's where I am headed.
I hope the Danish work on the hypothalamic–pituitary–thyroid axis can be included to make more sense of what actually happens with the thyroid hormones....
Interesting about the possible RTH and earache, I hadn't heard that before. I had that too, badly, recurrently, and as breathing was affected and has resolved with quitting dairy, I wondered if that was the reason for me. Later I read Peter D'Adamo in Eat Right for Your Type (yes, I know, disregard if you wish!) who says that any child can develop chronic ear problems if they are eating a food that they react to and rarely is a favourite food not the issue. He says type O is often gluten/dairy, type B usually a viral infection leading to a bacterial issue resolved by stopping tomatoes, sweetcorn and chicken. Type A is often dairy, type AB dairy and sweetcorn, but both are prone to mucous secretion, lack of complement and a lectin, which means that reducing sugars usually helps the immune system to resolve the problem. (For the record, I am an O and have a gluten problem as well as the dairy, which I also found by chance and before I read the book, make of it what you will......) Dr P mentions tonsillectomy (in book mentioned above) as the shared blood supply between thyroid and tonsils can be damaged and lead to hypothyroidism over time. But my FT3 is now beyond a joke, so who knows. I am so glad that you are standing upright and thank you for sharing some part of what you have experienced. Best wishes
Many thanks, Diogenes! I’m just as excited by the prospect of a publication that seems to be geared towards a change in the range of treatments and options for patients. Like you, I have a few questions on the extent to which the critical role of fT3 in blood serum samples, conversion rates from fT4 and the cellular uptake, and biofeedback systems at cellular levels, including the roles of rT3 and T2, are largely ignored by the narrow TSH and fT4 protagonists! I am encouraged by some of his earlier work and the comments that…
“In this book, I offer an accessible overview of the disease’s treatment and make the case that the current approach is failing some patients. I call for alternatives to improve lives, and I equip patients and their families to advocate for other treatments.”
I hope this also extends to a consideration of the broader range of patients that are represented in the 10% to 20%, who remain ‘poorly’ treated on Levothyroxine alone, but with a myriad range of potential complaints beyond the typical Brainfog, Concentration, Memory and Energy and a broad spectrum of individualism beyond the normal range!
It’s encouraging to see authors willing to acknowledge some of the failures in past practice and open to the consideration and encouragement of alternative approaches!
I must admit, I'm apprehensive about this book coming out. I've read some articles and papers by Bianco (quite a few years ago now so I don't remember exactly what my issue with the content was) that didn't do us any favours particularly in terms of anything to do with T3.
I don't know anything about endocrinology politics but Bianco could end up making patients' lives a lot more miserable than they already are if his theories end up appearing to save money for governments, health services, and the medical profession.
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Survey by Dr Antonio Bianco and colleagues
