Bianco, Dayan & Joncklaas have begun a research topic inviting offerings from others as well as they to discuss the need for redefining hypothyroidism and how to diagnose it (especially looking critically at TSH as a measure). This shows that in USA and UK (Dayan) the suspicion that diagnosis and treatment of hypothyroidism has not been adequate in the past. This especially shows the idea against T3 as a treatment is declining. Summary of goal below:
(Re)defining Hypothyroidism: The Key to Patient-centered Treatment
A C Bianco, C M Dayan, J.Jonkclaas
About this Research Topic
Hypothyroidism was first described in the 19th century, with effective treatment introduced approximately two decades later. Despite large experience accumulated over a century, some modern-day patients continue to experience persistent symptoms despite appropriate treatment. While a stated goal of the treatment of hypothyroidism is to resolve symptoms, most physicians focus on normalization of serum TSH values, which is the marker used to diagnose hypothyroidism and adjust the replacement dose of levothyroxine. However, complete physiological replacement has not been possible in other hormones deficiency syndromes, and it may be presumptuous to assume that it can easily be achieved in hypothyroidism. Given the residual symptoms and metabolic abnormalities experienced by some patients, there is therefore a need to question and redefine therapeutic success in hypothyroidism. Potential issues to consider are whether there are other biomarkers of thyroid status, in addition to TSH, that may be important, and whether different biomarkers are important for different tissues. In addition, the relevance of the origin of the hypothyroidism and how to balance benefit in long-term versus immediate clinical outcomes. This collection seeks to compile research that (re)defines success in the treatment of patients with hypothyroidism beyond normalization of TSH levels. We welcome (mini)review, perspective, or original research articles contributing with this effort. Potential topics include, but are not limited to:
1. (Re)definition of successful treatment of patients with hypothyroidism
2. How to correctly attribute symptoms to their underlying cause
3. Does the aetiology of hypothyroidism and/or the level of residual thyroid function matter?
4. Is TSH the best biomarker of euthyroidism?
5. The relationship between serum and tissue levels of thyroid hormones 6. How can thyroid-related quality of life questionnaires be adapted for routine clinical use?
7. How do we evaluate long-term outcomes?
8. Should T4 to T3 ratios be used to guide thyroid hormone replacement? 9. Update on restoring native thyroid function by generating thyroid follicular cells from stem cells or immunotherapy.
10. The role of exercise, sleep, and diet in reversing residual hypothyroid symptoms
11. Design of a combination therapy trial specifically designed for those with unresolved symptoms
12. Understanding why patients prefer desiccated thyroid extract over currently protocols used.
Written by
diogenes
Remembering
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5. The relationship between serum and tissue levels of thyroid hormones
Encouraging!
Hopefully one day, now that T3 is being given slightly more attention, they will expand research to investigate low cellular T3/cellular hypothyroidism!I need high dose T3-only to function and it took decades to discover this.
Many thanks Diogenes! This looks like a very promising development and a long overdue review of the urgent need to reconsider hypothyroidism diagnostics, treatments and consideration of patients with a prevalence of symptoms that just don’t respond adequately to the current “standardised” treatments and tests! I love the proposals to look for other potentially more useful bio markers of thyroid status! Muchas Gracias!
"(Re)defining Hypothyroidism: The Key to Patient-centered Treatment"It seems to me that the missing component of every piece of research/analysis etc that claims to be ‘Patient Centred’ especially to do with hypothyroidism, is the patient perspective. It is always based on the medic/researchers experience and their assumption/interpretation of that experience. Not patient experience. Where is the patient voice?
‘modern-day patients'? Makes it sound like those of us not getting on with Standard T4 is a new phenomenon. Is it or is it just that people were given T3/NDT previously? To me this hints at the ‘in your head’ response we are all so familiar with.
‘despite appropriate treatment’??? Really. Surely a paradox? How can it be appropriate treatment if the patient has persistent symptoms? Isn’t that the crux of the ongoing problem? Again, hinting at the outcome of this research - in our heads!
I’m sorry, I don’t meant to be negative. But so much of this on the surface looks like it might be helpful going forward, but the tell tale signs are there.... in both these examples and in the:
10. The role of exercise, sleep, and diet in reversing residual hypothyroid symptoms
A hint perhaps of where they will be going with this research topic. Blame lifestyle....another overused familiar response.
Again, sorry diogenes I don’t mean to dismiss your post, but I can see so many flaws in the plan here. Rehashing old thinking. "We welcome (mini)review, perspective, or original research articles contributing with this effort." We all know that mini reviews and/or original research articles etc are too limited to show anything useful.
And yet again, talking about combination treatment. Why are those taking T3 only being ignored? I’m sure there is enough of us on HU to show that some need just T3? I’ve been on T3 mono for 12 years. It is not placebo effect. It works for me! I know it works for others. We exist!
We need to get away from the ‘lack of evidence of efficacy’, where it relates to publications and not to actual patient use, being the gold standard excuse to refuse prescriptions. Lack of evidence does not equate to lack of efficacy.
The field can only go at the maximum speed dictated by the intellectual "drag" of needful mass education, needed for rebuttal of the present protocols. No matter how the top researchers show a need for change, its progress to the norm for all patients will be slow. There is too much at stake for the effect on people's reputations to be acknowledged.
yes i suppose it's a bit like taking a Nursery Class on a day trip to London ...
"Now children , we are all going to get on this bus".
" Simon P , we are ALL getting on the bus.. you can hold my hand if you are feeling scared"
" Everybody hold hands with your partner ... yes i know you don't want to hold John's hand ..... no it's not Yucky .. his hand is fine.. well hold his sleeve then."
"Where's Geoffrey gone ?... Geoffrey !!.. put that pigeon down ".
"Now don't cry Simon W....yes i know you wanted us to go on the rickshaw .. but we're all going together on the bus "
... 14 years later ...
"Right, we're on our way now , isn't it exciting"
"Simon .. there's no need to sulk .. either of you"
Your bus analogy reminded me. My family moved to London when I was 4yrs. I was the youngest of 6. Mum & Dad needed to sort out the house, so on moving day Auntie G took us kids to London Zoo. Us kids being unfamiliar with the hustle and bustle of London, and Auntie G being unused to so many kids meant my closest sibling hopped on the wrong route-master.....and off it went. I think there was lots of screaming.
Also, one of my sister's got a rescue dog from somewhere. Joey was quite a street savvy dog, and could be trusted to walk without a lead, until one day he decided to hop on a bus on Putney bridge.........I'm guessing he smelt something tempting in someone's shopping. Also resulted in lots of screaming.
Yes, I do understand that side of it, but it is just sad that someone’s reputation is more important than the health of many. I d, massively, appreciate everything you and your colleagues are doing to help, and admire your dogged determination.
If our beliefs stand firmly in the "proven evidence" area, it would be downright cynical to try to dodge the conclusions. We've got an accepted paper (temporarily on hold until our leader comes back from vacation) which not only describes the situation in cases of "appropriately (or not) thyroid hormone treatment", but also explains how and why in nonthyroidal illness, the thyroid parameters change in the way they do. It is in short a description of how thyroid things work. The latter question of the control of nonthyroidal illness is quite outside the ability of the accepted model to explain. It's crucially important to derive something which is generally plausible, whatever the state of health. It isn't science to cherrypick what you'd like to happen as opposed to what actually happens. So I'm not being dogged merely a follower of Mother Nature's designs, and not inventing my own for merely argument's sake and wrong decision making..
Firstly, I hope you didn’t misunderstand my use of the words ‘dogged determination’. It was not meant derogatorily it was meant as a compliment to yours and your colleagues ongoing determination to keep going with your incredible efforts to try to get better understanding out there. My sincerest apologies if this was misunderstood. I have huge admiration for you all.
My concerns are more with the beliefs that stand firmly in the "proven evidence” . Proven evidence is only ‘true’ in relation to a set of subjective parameters.
This evidence, IMO can be coerced and directed. As far as T3 & NDT is concerned evidence was deliberately or otherwise ‘lost’. IMO it was all too convenient to systematically withdraw T3 from patients from 2015, removing any statistical ‘evidence’, in readiness for a consultation that then promoted ‘lack of evidence of benefit’, to support the intended removal of T3 from prescription. I have become increasingly cynical in my old age, through all this.
Those self prescribing are too easily ignored.
The fact that this ‘belief’ relies on what is perceived to be ‘known’ and leaves far too many undiagnosed and under/untreated. What is ‘known’ can only be ‘known’ at a point in time.
The amount of people struggling daily even though on T4 mono therapy should be testament to the fact that the ‘known’. needs to be reassessed. I know of several, with hypothyroidism, who drag themselves around and through life looking like they are being dragged into the ground, but the Dr says their TSH is fine so they accept this is as good as it gets. V Sad.
Should medicine ever be considered a ‘known’? Isn’t all the ‘proven evidence’ really just ‘assumed’ based on the knowledge of the time and the parameters used to reach that assumption?
Are we, as a species, not continually evolving? The fact that we are all individual should also raise major questions to assumed medical practice, especially when the ‘standard’ treatments fail. So surely thinking on what is considered medicine, like any science, must keep adapting. I appreciate the lack of finance to support this ideology, but surely that is where research is needed? To investigate the anomalies? Surely there is enough of us ‘anomalies’, around the world, within thyroid health to warrant some real considered investigation.
I fear too much focus on any new research is looking back at what has already been assumed. I wonder how different treatments would be if we could disregard all perceived current knowledge and start again. I still doubt that whilst patient voice continues to be ignored progress will never be made. We are the best first hand evidence as to what is happening to us that medics will ever have access to.
You have my upmost regards and I can’t thank you enough for all your efforts to help us all.
Let me add to this. By "proven evidence" I mean a study that has been deliberately designed to test the theory to destruction. This isn't just one experiment (which is, or may be, a starter for 10) but a whole series of studies to find if there are other truths than those which the first study hinted at. A proper scientist is ruthless if the evidence eventually falls down. It's said that one should "be ready and able to murder one's children" (a gruesome analogy, but an essential one). Where the field fails in my opinion is to have performed preliminary work to find a solution, but once they were satisfied about the the outcome, didn't continue to test the model. And certainly not to destruction. There were too many loopholes left, which were blithely swept over and not challenged by work that should have been done. For example NDT was challenged as not being a tightly controlled product but by the 80's was standardised according to a Pharmacopeia. But the myth of variability in batch is still parroted, even in the face of the evidence. But no dynamic studies were performed to compare T4, T3 and NDT responses so that one is left in the dark, listening only to one voice proclaimingT4 as the way forward.
Thank you diogenes this is helpful. Are any studies designed to test the theory to destruction these days, do you think? And yes I get where you are coming from re the loopholes. I’m guessing this is down to the lack of funding and the time pressures to have a solution to offer, and the pressure from who is paying for the scientist. I remember the Dr Aubrey Blumsohn case in Sheffield. Best of luck.
Will patients be able to give evidence to this effort by AB, JJ and CD?
Also No 11. Levothyroxine only works because it transforms to T3. So having had a really good look at the combination trials it has struck me that since it is the metabolic activity effect on TSH that was important to all the trial authors, they should have written the trials as T3 vs T3+T3.
"However, complete physiological replacement has not been possible in other hormones deficiency syndromes, and it may be presumptuous to assume that it can easily be achieved in hypothyroidism."
I'm pleased to see that they have recognised that we are not alone, but I've no doubt that lots of people with other hormonal deficiency syndromes get told that "It's all in your head" too.
What a cosy little club they are - round and round in circles - wish there was some way we could get them to experience the results of their dithering - over 50 years of T4 only treatment but they bury their heads when confronted with those patients it doesn’t work for .
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BTA members say An over-reliance on TSH as a sole marker of wellbeing reduced opportunities for clinicians to address patient symptoms.
