The Bianco book I recently headlined has been read by another member, who mailed me their impressions. It acknowledges that 10-20% of patients don't do well on T4 only. However, while advocating combination therapy, the suggested T3 dosage is inadequate to make much of an effect. Also he insists that for optimal dosage TSH must lie within its reference range - hasn't learned anything there! Finally he doesn't mention our work at all.
Don't feel this book has moved things on - Thyroid UK
I was always suspicious of his real grasp on things. No understanding at all it would seem. Omitting to mention your work speaks volumes about the man.
Based on what I've seen of Bianco's research papers, I came to the conclusion some time ago that he's clueless. Doesn't he know that some people need exogenous T3 way above the dose levels he's being using in trials? He needs to focus on the people in this category and exclude others. I do wonder about the scientific credentials of many of the medical researchers involved in thyroidology. They seem frightened to death of T3.
Thank you Diogenes… What an ignorant and probably most arrogant man! It is quite despairing that such ‘dinosaur’ views are still held by so many so called researchers.
That is so so disappointing!
He has said he does not use T3 in his medical practice. So I guess he has little practical experience. He has been very supportive of people engaging with him on twitter who have been clear about the need for some people to use t3 or ndt.
So sorry to hear that Diogenes.
After all the patient waiting for the final publication of his recent research and work on thyroid diagnostics and treatment, and despite all the promising early releases and all the accolades, it seems he has flattered to deceive! A repetition of the 10-20% of patients that don’t appear to do well on T4 alone, with little more to add to the mix of combination therapy treatments with low T3 is a huge disappointment and the TSH diatribe is probably best summarised as two steps backward with no step forward!
.. i wasn't expecting much more to be honest , (but i'd allowed my hopes to be raised by the tone of his recent comments to Pearce) .... so i was expecting to rate it "close, but no cigar"
presumably some patient' are helped with just a small dose of T3 , and a few of those might be able to keep TSH in range....... but sticking so firmly to TSH boundaries denies the opportunity to find optimised treatment to so many more .
For what it's worth .. i judge the credibility of thyroid experts by whether they have the cahonies to refer to your work, and do so thoughtfully.
Without reading Bianco's book for myself it seems unfair to rate it ... but then it's equally unfair for him to pretend not to notice your recent work .. so i've down graded my rating to " ......no cigar"
He should know better! He acts like he does know better in the FB group.
I couldn't bring myself to click on "like". How absolutely disappointing especially for you but know that the people on this forum are extremely grateful for all that you have done and are still doing.
please can you bring a book out instead? Call it ‘evidence based treatment for thyroid’ 🦋💚🦋
We're thinking about it precisely on the level required.
Please do it and quickly. There are thousands of us being traumatised by utterly stupid, bullheaded GPs who tell us we are making our symptoms up when we're not even on minimum bodyweight dose, and who cannot actually see an intelligent, suffering human being but only a number to be 'managed to correct target TSH'. Since I saw my GP during the week I have stopped sleeping and am feeling hopeless. I must be one of thousands at least.
It's not a thing to rush into, unlike Bianco's effort. I think the ducks are in a row, but the task ahead won't be simple. However, when we've drawn breath - another paper accepted and due for publication soon - It will get onto the agenda.
Is there anything we can do to help?
Could be as trivial as reading a few pages and commenting, or as dedicated as proof reading.
I imagine some members have a wide range of skills including graphics, typography, etc.
Obviously I cannot speak for any individuals, but I'd be surprised if you didn't get quite a number of responses if you were to ask for help.
It's possible that the cost to us would be significant initially. We'd welcome any small contributions UK or posters might make to the cause. If the book does get significant royalties, I for one would pay them back.
I'll chip in! Can we start a Go Fund Me?
The reason I called out to Lyn was partly because our guidelines do not allow any form of promotion/asking for funds other than to the benefit of Thyroid UK.
It would be down to Lyn to look and decide what could be allowed.
I think, after talking with Rudolf Hoermann that we will do the book as an eBook. Far cheaper than hardback or paperback. What we can do is to put it behind a small paywall in order to get revenue, my part if any going to TUK. We didn't think it wise to link too closely to TUK because of the obvious inference of vested interests and suspicion of pressure. I plan to send a copy direct to TUK, avoiding the paywall, so that posters can decide whether to buy or borrow.
I understand your feeling hopeless with regard to your GP focusing solely on TSH. I've faced similar battles with mine over the past few years. I'm one of the fortunate ones where covid is concerned....no blood tests for two years so I could ignore their desire to "treat suppressed TSH" by dropping my dose. I know from previous experience and blood tests that my suppressed TSH does not have the same dire consequences for my body and my well-being as a lower dose of thyroxine.
My fall hitting the whole of the back of my body including my head on solid concrete with the full force of all my body weight did not leave me with cracked nor broken bones. I'm 76.
I've told my GP's I do not want to reduce my dose. Now I am back on the brand which suits my system best, my thinking is so much clearer.... and despite the return of the aches and pains in my joints, I feel better in myself than I have for a long time.
Maybe see if you can see a wiser GP? Take along all of your results so you can clearly see where you're at, and where you need to be? and check which brand/s of levothyroxine you're been taking?
bit of a contradiction in terms at our practise. The one sane one left; I've tried 3 others and they're all as rude and blinkered. as each other. I am a TSH number, nothing more. Thanks for your time & kind reply, but I don't want to hijack post, was just adding my voice to those encouraging @diogenes to write that book in case other GP's are capable of actually reading it (doubt) or taking notice (miracle).
well obviously I don’t know as much as you diogenes because I’m only a patient, but one willing to learn.
I’m about to start chapter 7. So far I’ve been really fascinated ( and impressed) by this book. I have learnt about the history/politics/research which I’ve enjoyed.
I’m obviously missing something as I feel he is accepting that T4 mono therapy is not always the answer.
Isn’t that a good thing? 🤷♀️ Surely if he has changed his mind about T4 only can we not feel some optimism about that ?
Of course I haven’t reached the “treatment “ part of the book yet….,,,,
the problem is that it is old news , (or at least it should be) for anyone involved in treating thyroid patients. There is already a mainstream professional acceptance that some ?10/20% don't do well on levo. ~ That % has been 'deal with' in guidelines for years by saying 'we need to do more research' '
And the history is indeed fascinating/ very angering the first time you are made aware of it ,,, but anyone with any professional interest in improving things for the 10/20% would already be well aware of all of that history .
So the status Quo for the last few yrs has been "we know some of you aren't ok , and we know some of you say you feel better with some T3 , and we might even let a select few of you have it ,if you manage to find out about it , but we WON'T let you have TSH out of range , because we believe that if the TSH is too low it means you are overmedicated and you're gonna die "
The Thing that needs to move on for anything to really improve with treatment of difficult cases of hypothyroidism (like us lot) ..... is the understanding of TSH ... Diogenes group have published loads of work which shows clearly and indisputably why TSH doesn't always mean what they think it means... and until that concept is included, then Endo's agreeing we can try a bit of T3, or even offering to to us with open arms , will not be much help ,,, because they'll just take it away again the minute the TSH is too low,
Thing here tattybogle, is that we're all going to die eventually, whatever else we do. Isn't the question "How would you prefer to live your life? feeling as well as it's possible for you to live? or simply have a longer life feeling awful?"
please can you post links to Diogenes' group as you mention above?
i was deliberately vague with the word 'group' as i couldn't remember off the top of my head which of their many papers was best for showing what, and who was involved in authoring which , or indeed the names of all of those involved in the 'group'.
But for starters:
Dr John E.M. Midgley , and Dr Johannes Dietrich .... details here : thyroiduk.org/about-thyroid...
and a very Lazy Sunday Morning attempt at a search for 'Midgley' in ThyroidUK's website gave these results :
.... but whether they are the most relevant/ current papers i can't remember .
Sorry that's not as much help as i could be... my filing system is ...erm 'sub-optimal'
There was a wee rush of hope up here in the land of ‘No T3’ a few weeks ago, with a report in The Daily Mail. I know, not the best source of information. However Dr Razvi looked promising, a bit like Bianco sounds, a bit more open to T3. I did a bit more research. I watched him interviewed by someone very pleased with himself. It was a site for doctors, somehow an advert (Merck?) where everything was TSH really. It included a dreadful crack at patients by the interviewer. Razvi to his credit did not seem to rise to the bait. It could have been old but at least someone up here in the land of ‘No T3’ is broaching actual use of T3 and possibly under great duress. So whilst they still can’t get over their basic fear and misunderstanding of TSH, these doctors with this view are not going to be able to help us any time soon. At least we are learning who to avoid - no matter their perhaps genuine attempt to help. Roll on diogenes book. In the meantime we must look elsewhere.
I hope you're right, but don't hold out too much hope as Razvi is on the BTA Committee.
I have no idea about the politics, only suspicion. However if Razvi has anything about him it’s good he has some interest in T3. He is up against it here in ‘No T3 Land’. You know what they say, it’s easier to change things from the inside than the outside. I hope he is up to the task. I however will be going elsewhere for help.
I’ll wait until I get the book and read it in detail.
It is rather perverse that he advocates doses that only restore serum T3 levels when he has done so much excellent work on deiodinases. It should be obvious to him that if there is insufficient D2 (T4 to T3 conversion) then restoring serum fT3 will not restore the local T3 that is generated by D2.
This is a common problem in endocrinology that the doctors have a back to front (to use the polite terminology) view of science. They dictate that restoring serum hormone levels must correct all problems. In any other branch of science we would experimentally find what happens and then adjust our theories to fit.
My view is the most common cause of needing T3 therapy is a subnormal TSH leading to insufficient deiodinase activity with consequential low serum and local T3. This is very much in Bianco’s field but he doesn’t seem to apply logical deduction to his expert knowledge of the subject.
Thank you. I just cancelled my order.
How very disappointing! A missed opportunity there. My TSH will remain suppressed and my Dr will continue freak out about it 😞
please read the book before you decide. 🙏 diogenes is my guru, but surely one is allowed to have an opinion 🤷♀️
Of course....that's the beauty of a free society. We are all free to consider and think for ourselves. The sadness comes when those who influence others, and the treatment of yet others, ignore research that disputes, or puts into question, their own theories which they are promoting.
ok . Point taken. But have you read the book? 🤷♀️
No, SarahJane1471. I haven't read it as Christmas is coming, I have presents to buy and food etc, and bills to pay. I am following what you say, as I am also following what others have to say, including diogenes. Shall I buy this book? Not before next year, if at all.... but I read, consider and think.... xx
well I’m almost through the book now and all I can see (so far) is that Bianco has pulled together research of 100 yrs and admitted in every chapter that what he was “taught” is wrong. That makes me optimistic about the future and I hope his influence on further research will help us all.
you have persuaded me
I am ordering a copy
well it’s £18 on Amazon. You may feel differently to me about this book. I’m hopeful…… but a relative newbie to all this. I’ll be interested in your views SD 🤔
Just reading the book now... fascinating insights into the power of Big Pharma at the beginning. I did skip to the end and saw the discussion of the TSH needing to be in range. Have to say this bit still worries me, although I have still started NDT - have read so many different studies saying conflicting things about the risks of suppressed TSH, although the articles you post in this group are really helpful on the issues of AF and osteoporosis. I do think one of the big wins of the book so far is the big acknowledgement that T4 alone is not for everyone. And this is repeated with apologies several times over even in the first few chapters. I actually wonder if the 10 to 20 per cent that is mentioned of people with "residual symptoms" is actually higher than this, but people just cope with some improvement, but they are still not well....
i 've always thought that there is just no way the 10/20 % can be even remotely accurate ~ assuming this figure is based on examination of some sort of medical record databases. somewhere ?
Remaining symptoms are not being recorded as 'related to thyroid' .
In my case , and i've seen my full GP notes and referral letters .. all references to still being symptomatic once on a stable dose of Levo, are recorded as being symptomatic of 'something else'.
I kept going in for years saying "i'm improved from the 30 % normal function i had at diagnosis ,but i can now only function at 50/75% of my previous, not 100% .. and i keep 'crashing' intermittently and need days off work if i don't very carefully control the energy i expend. I'm not properly 'better' and i can't function in my family / work / social life as i could before my thyroid condition appeared."
But if anyone was doing a data search of my GP looking for numbers of patients with unresolved thyroid symptoms,.... would i be counted as someone with 'residual thyroid symptoms on levo ' ? ...... i can't see how .... i'd presumably be counted as have 'fatigue ' or 'Chronic Fatigue' or '?CFS/ME' that (coincidentally !) started following my successful treatment for hypothyroidism.
i daren't hazard a guess as to what the real number of 'not fixed' people is.... but i'm pretty certain no one has counted me.
Unfortunately this is fundamental to the outright lies put out by the anti T3 lobby. Sorry I don’t know the actual quote, I will check. “Lies, outright lies. And statistics!”
yep I think about this too. I have a dear friend who I recently discovered has been on Levo for 20 years. Dosed only on TSH and T4 has been ‘fine’ ‘normal’ all that time with dose up dose down etc. I talked about my symptoms and testing and diet and vitamins and she was amazed ‘Oh, she said…. “I’ve had periods of fatigue, aches, xyz symptoms over the years, I thought it was just me.”
There will be millions of stoic, ‘crack on and suck it up’ hypo and inoptimally medicated warriors out there.
10-20% my arse
Evidence based treatment would require indivialised treatment, with holistic care for all the added complications/co existing conditions for all. Not just those feeling worst. 🦋💚🦋
I'm greatly in favour of Bianco posing the problem of the need for combined therapy. It's the way he goes about a solution that bothers me. He cannot succeed in his ideas if a) he insists that normal TSH is essential for success, and b) therefore T3 should be taken in amounts too small to have an effect. As for NDT having the wrong T4/T3 ratio -does he really think that the body is going to lie down supinely and deliver hormones to the cells without change (ie the body deiodinases simply stand by and do nothing)? And what about T4 only? He doesn't take that tack at all; he assumes that the body will take appropriate action re T3 production, whilst at the same time admitting for some it won't. See the contradiction: no change when he doesn't like something and all change if he does.
More from my correspondent:
I have just finished reading Antonio Bianco's new book 'Rethinking Hypothyroidism - Why Treatments Must Change and What Patients Can Do'
It read pretty much as I expected it to read.By page 17 out of 257 Bianco had already stated that if TSH is low or suppressed that the patient is clearly on too much thyroid hormone. He never shifted from this viewpoint.
But he had some positive things to say
.He repeatedly acknowledges that 10-20% of patients on T4 only only have residual symptoms. He believes this is due to low FT3 levels - and that some of the brain fog/cognitive issues etc. that thyroid patients on T4 complain about is due to lower T3 levels in brain tissue.Repeatedly he illustrates from past studies that it has been known for a long time that patients on T4 only therapy were shown to have low FT3 levels, and even below range FT3 levels, and that some studies in animals proved that correcting this with T3 fixed any cognitive symptoms and the FT3 level of the test subject.
But he also reiterates that endocrinologists were in total denial that T4 leaves patients low in FT3 and symptomatic, so locked in were they to the idea that T4 always converts to enough FT3. He seems to believe that this view is changing. This isn't what I keep hearing by the way - I still hear from as many thyroid patients who are not getting listened to by their endocrinologists.
He supports trialling combination therapy for those patients with residual symptoms on T4. The doses of T3 he discusses are fairly modest ones and below the ratio of T4:T3 contained in natural desiccated thyroid (which he considers to have too much T3). I fear that his modest levels of T3 would not be sufficient for all the patients left with residual symptoms on T4 monotherapy.
He mentions that normalising FT3 should be a goal for treatment - but clearly alongside keeping TSH in range. This is at least a positive statement.
One half to two thirds of the book is about his experience over time and much history and stories of discussions with other endocrinologists and some of the important research that has been done over time. I found it quite dull as I am aware of a lot of this. I am also a pragmatist and wanted to hear what exactly was going on to create change.Then finally in the final few pages of the book he talks a little about the poly-zinc T3 (PZL - L for Liothyronine) that is being developed to keep T3 levels stable over 24 hours.
He also mentions some other promising approaches being developed including using a patient's own stem cells to regrow a thyroid gland - although how this would not be destroyed once again by autoimmune attack in a Hashimoto's patient I don't know.
I wanted to read it. It was a bit of a dull read to be honest. It left me wondering how any change is really going to be made to happen. I wanted to hear from him about this point as having your own thoughts is fine. Yes, he can practice these things with his own patients but what thyroid patients need to hear is how wide-scale change is ever going to occur.
Then finally in the final few pages of the book he talks a little about the poly-zinc T3 (PZL - L for Liothyronine) that is being developed to keep T3 levels stable over 24 hours.
I wonder why he thinks this is a goal worth pursuing. Healthy people with healthy thyroids don't have stable output of Free T3 over 24 hours. It has an output distribution similar to TSH according to Figure 1 in this thread :
So clearly healthy people cope with fluctuations in Free T3 level, so why should it be undesirable for patients to deal with fluctuations?
Yes, it's strange.
I'm interested to hear about this technology, because I'm pretty sure it would make a difference for me. I now split my dose into four, including a dose in the middle of the night. Each time I've split the dose I've had an improvement in symptoms, so if I was able to I'd try splitting it even more. But I think I am close to the extreme end of people who struggle with thyroid replacement. I'm still pretty disabled and in bed a lot of the time.
Whereas you feel like the patients someone like Bianco is thinking of are those who are the simplest to treat with T3. Probably the larger group.
totally agree, i too can't really see why that is that is a problem that needs resolving,, or at least i can't see why it is a priority to sort before just' getting on with it using what we've already got '
and my gut feeling is that there may in fact be some unknown benefits to having an fT3 level that goes up an down through (or even outside of) the range over the course of a day . Helvella once mused an interesting analogy of a tidal zone, where the fluctuating levels of water at the shore allowed for different critters to live... if the tide was the same height all the time, much of this biodiversity would presumably struggle, or even be lost entirely .
The body does have the ability to cope with some fluctuations in fT3 level even if it is the case that it tries very hard to keep it stable,..... and if a 'slower' release is needed by people who feel too much of an effect at the peak , or just don't fancy the idea of being over range for some points of the day , then split doses are an option that most users on here don't seem to find too difficult to accommodate... i'd certainly be happy to take 3 (or more) doses of T3 daily, if it gave me a functional life back. ..even if it was a complete pain in the ass to manage it with food, etc .
And i've always rather objected to the assumption that it's perfectly OK to do something so unnatural as dump an entire days worth of T4 into the system all at once. while the same people are kicking up such an unholy stink about how unnatural NDT ratio is , or single dose T3 is. Who cares how un-natural the ratio is, if it has the desired effect.. having a knackered thyroid is already pretty un-natural .
I think he’s trying to find away for it to be simpler for patients to take in one dose 🤷♀️
.... he's primarily trying to deal with the fact that one dose is likely to send fT3 'over range' for a brief period of time shortly post ingestion , and they are concerned that this is not a good idea , slow release will be a way to avoid this 'un-physiological peak ' without having to tell patients to take 2/3 doses.
I don’t take T3 but wouldn’t it be more convenient to take just one dose?
perhaps some might find that .. i can certainly understand why "would you like to try taking this alternative twice a day ?" might be a hard sell to someone who felt well enough on just Levo . But those people wouldn't be the ones desperately needing to try T3 would they ?
The ones who don't feel well on Levo only would presumably 'bite their hand off' to try it ,.... even if they had to inject it 3 times a day and it hurt.
I voluntarily choose to take my levo as a split dose .. it was my idea and i don't find it any problems at all , probably because i have a fairly laid back attitude to timing / food.. i don't let it control my life , and i don't get stressed about it .... i've taken time to understand how it's absorbed , and to get to know my reactions to 'a bit too much / a bit too little' and so i'm 'careful enough' to make sure my overall dose is consistent, but not so careful i can't say yes to a slice of passing birthday cake.
Plenty of people on here manage similar easy going attitudes to split dose T3/NDT use , (and many are perfectly fine taking it all in one dose) .... honestly ,if you've got to be bound to taking a tablet everyday for life with all the organisation that involves... i personally don't find it any more of a bind to take it twice.
(Mind you ... i thought that about having another kid when i already had one ... and i was wrong ... it broke my thyroid , and likes to buy shiny things .. so don't follow me cos i may be lost
I wonder about that too. We talk about Circadian rhythms but we all have rythms of our own. I would much rather respond to my ‘needs’. I tend to (when well) like to get up and get on in the morning and get to bed fairly early with the odd rave now and again. Some people are more night owls. I hate the wakefulness at night. It’s driving me bonkers. I don’t want a 24 hour thing going on unless it helps me sleep. I feel a certain amount of control by timing of T3 would be a good thing but maybe T3 covers both sleeping and activity and 24 hour release might work. Anyone know?
Possibly because he has a financial interest in it? I'm not saying he does, but if he did that would be a reason.
I'm sure he does have a financial interest in it. But many of his colleagues in endocrinology will just accept what he has to say because he is published - many times over, and he is an important man in endocrinology circles. But just because someone is important doesn't mean they are infallible :
It is possible that the more researchers and doctors say something the more it is believed.