Symposium on T3/T4 combination therapy

[diogenes]

Just found information on an upcoming symposium on the topic:

EVIDENCE BASED USE OF T3 + T4 COMBINATIONS

Endocrinologists are frequently asked to consult on patients taking L-thyroxine (T4) but appear dissatisfied with their therapy. However, the use of combination therapy with liothyronine (T3) remains highly controversial with conflicting results from clinical trials. Recent scientific studies have provided new insight into the complex relationship between serum and tissue thyroid hormone levels justifying a review of the evidence base for the use of T4+T3 combinations and the design of future clinical trials in this area.

This innovative symposium will occur simultaneously on Sunday 3rd November 2019 in Chicago, US and London, UK, representing a collaborative effort between the ATA, BTA and ETA, to bring together leading experts in this area from North America and Europe. It will be a live meeting in both locations, with the UK audience accessing a webcast to view the US presentations and the US audience accessing a webcast to view the UK presentations with the opportunity for both audiences to ask questions to all speakers.

The symposium will conclude with fully interactive workshops on the use of combination therapy in the UK, and a patient discussion forum in the US. Co-chaired by U.S. based Jaqueline Jonklaas, MD and U.K. based Colin M. Dayan, MA, FRCP, PhD, the anticipated goal is to use the symposium content and discussion as material to produce a consensus statement about the design of future combination therapy trials and to assist endocrinologists in advising their patients on the current evidence base behind combination therapy.

None of us are invited and the whole business is to keep the debate within the little cabal of "experts" who have up till now dragged their feet over T3/T4 therapy. It is they, after all, who must "lead the field" in seeing the light, and not erks from the margins like ourselves. That would never do would it? Sorry, sarcasm has boiled over.

[Marz]

So who will be asking the questions ? Have they too been carefully selected ?

[diogenes Remembering in reply to Marz]

Surely. We all must hang together or swing separately.

[jgelliss in reply to diogenes]

UNITED WE STAND . DEVIDED WE FALL .

I feel it's such a waisted time . It's just for the selective Dr's that are invited . But where are the Thyroid patients that are the Most Important Players in all this ??? They most Importantly Count Know and Feel ??? Ask Them How They Feel With T4 Only ???

[sy28]

thank you, diogenes ... I wonder how long it will take for the consensus statement to be published and how would we access it? The endocrinologist I am seeing suggested I should seek an appointment with Dr Colin Dayan, who in the past has spoken to the Thyroid Trust, but I am not sure he supports T4/T3 combination treatment, I do hope I am wrong.

[Gcart in reply to sy28]

My friend saw Dr Dayan about 1 year ago and yes he definitely supports T3 .

Unfortunately he is in Cardiff and a Welsh script isn’t useable this side of Bristol Channel 🙁. Don’t know where u are living though you may be ok.

I think I am correct in saying he left one authority because of their lack of T3 support etc .......

Don’t quote me on that though !

[helvella in reply to Gcart]

I believe that Welsh prescriptions are legal in England - and vice versa.

They can also be used to purchase from Germany (at present).

[Hidden in reply to helvella]

Hope so, except in Wales we don't have to pay for scripts!

I can't use my bus pass in England

[Hillwoman in reply to sy28]

From what I've read in several places over the years, Colin Dayan is very cautious in his support of treatment using T3, though he appears to favour it in a small number of patients. I haven't gained a favourable impression of him, partly because of his faint-heartedness in this respect, but largely because of unwarranted, disparaging remarks he has made in print about Drs Skinner and Peatfield. He is very much of the mainstream, so perhaps it might be unwise to raise your hopes too far.

[sy28 in reply to Hillwoman]

I agree, thank you, that follows with papers I have read

[LindaC in reply to Hillwoman]

Appalling! Drs S & P knew so much and understood how silly ranges could be; of course they had the skills to actually practice medicine, not needing to sneer and disbelieve patients who didn't 'fit into their limiting criteria'. Take care and be well xox

[jgelliss]

Thank You Diogenes for the heads up for This Innovative Symposium . I'm sorry to say that I don't have much hope for this symposium. Unless thyroid patients would be included so that thyroid patients can Share Their Own Experiences and the Benefits they Derive from dosing with T3 /NDT /T4 thyroid meds combo.

And For Most Patients that are on T4 Only and Not Feeling their *Optimal* Ought to be included .

I'm Very Concerned having Only Dr's at this symposium will Not Change nor Benefit thyroid patients wanting to be on some T3/NDT/T4 To Feel their *Optimal* self .

I'm afraid that this symposium is headed for Major Failure with no changes/improvements made. The major characters and witnesses are Missing from this picture.

[JGBH in reply to jgelliss]

Unfortunately I totally agree. They clearly don’t want to have to rethink the dire situation.

[MissGrace]

‘Innovative’ - seems we feel it will be a load of the usual faces slagging off T3. Nothing innovative about that. Nothing at all. 🤸🏿‍♀️🥛

[JGBH in reply to MissGrace]

Agree.

[shaws]

Well, diogenes it is just as well you are sarcastic otherwise you would 'blow your top'. I liked your phrase:-

"None of us are invited and the whole business is to keep the debate within the little cabal of "experts" who have up till now dragged their feet over T3/T4 therapy. It is they, after all, who must "lead the field" in seeing the light, and not erks from the margins like ourselves."

It is those kind of 'experts' who put nails in coffins for the suffering hypo victim of levo alone, if not recovering upon it.

[JGBH]

Thanks Diogenes. However I fear nothing will change because it will be a “jolly “ among doctors who have tunnel vision and are keen to remain so. Totally understand your frustration as you understand ours.

What’s the point of such symposiums when in fact it will be a close shop? Just a lovely time amongst narrow- minded doctors having a self-serving jolly good time together away from real work. Sorry sarcasm too.

[jgelliss in reply to JGBH]

Well Said JGBH. Just a lovely time amongst narrow- minded doctors having a self-serving jolly good time together away from real work.

[JGBH in reply to jgelliss]

Indeed and full of their own importance! WHO is paying for that huge expense? No doubt big pharma producing Levothyroxine might do? I hope it’s not the NHS.

[jgelliss in reply to JGBH]

Your so right. We are paying for these so called symposiums . Actually since we are all paying good and well for these symposiums . We ought to join and enjoy these symposiums too.

[MaisieGray in reply to JGBH]

Well to be fair, it's taking place on a single day, and on a Sunday, so is probably supernumerary to their normal working week, not instead of. And whilst it's not seeing patients it is still very much work, if they properly pay attention and actively participate, and not much opportunity for a jolly - whenever I've attended such things in my own profession, I very much expected to be properly fed and watered as a quid pro quo for giving up my day off.

[JGBH in reply to MaisieGray]

That might be the case BUT it will not change the situation, a change of attitude on their part. So I really question the point of such symposiums IF nothing new will emerge: They are not learning anything new, not prepared to think differently, to admit they might be wrong, so NO point in this, a waste of time which really will not benefit patients.

[LindaC]

Thank you diogenes - much appreciated. Well, here's a couple of 'blasts from the past'.

I posted some of this a couple of weeks back... not sure anyone could believe the 'reasonableness' and 'understanding' of these fine words. Hmm, not my experience at all, also not that of many others.

ncbi.nlm.nih.gov/pmc/articl...

Eur Thyroid J. 2012 Jul; 1(2): 51–54.

Published online 2012 Jun 28. doi: 10.1159/000338637

"What the ETA guideline does promote is that thyroid experts must engage with the sector of thyroid patients who suffer unexplained symptoms. This is commendable. Patients deserve access to the best quality of information about their condition and how it applies to their own individual circumstances. They need to understand the advantages and downsides of different strategies that may be used to address their symptoms. They must not be left alone to grapple with the mountains of misinformation that seem to abound in the mass media, generously provided by self-appointed experts with unspecified motives. Some patients are so driven by desperation that they are willing to take any risk and hang on to anything that offers hope. They are vulnerable and prone to exploitation. They will obtain supplies of T3 if not by prescription, by mail order, and will use it. It can be argued that even those thyroidologists who are unconvinced by the L-T4 + L-T3 approach and reluctant to incorporate it in their clinical practice have an obligation at the very least to counsel patients and supervise their combination treatment, if the patient choses to take it. The guideline rightly recommends that managing the patient on thyroid hormone replacement who has residual symptoms should be undertaken only by clinicians who are appropriately trained in thyroidology. This is useful and important and to some extent will help safeguard vulnerable patients from unaccredited practitioners."

Also, May 25th, 2014 - this again paints that picture of patients being listened to... hmm!

thyroiduk.org/tuk/guideline...

Then, PUBLISHED ON 02/08/2018 - during an Interview it was said...

What are the biggest challenges faced by your clinical specialty?

"We need to reverse the tide of unnecessary investigations and treatments relating to endocrinology, as this has an enormous negative impact on patient care and wastes large amounts of resources. Another challenge is attracting the brightest doctors and scientists to our discipline, and strengthening the links between endocrinology as a clinical specialty and as a scientific area."

Are there any controversies in your practice area?

"Some decades ago, we thought that we had solved the problem of thyroid hormone replacement. Yet, some patients remain dissatisfied, seek alternatives, and have recently launched a war against “conventional” endocrinologists. Unfortunately this is exacerbated by self-appointed experts from the dark alleys of alternative medicine, who exploit human suffering and desperation. However, on the bright side of things, this controversy has raised some valid research questions that are answerable by scientific investigation, and the new knowledge gained from it will help resolve some of these issues."

[helvella]

Link to a PDF of the agenda of the symposium:

thyroid.org/wp-content/uplo...

[UrsaP]

linda96 FYI

[thyr01d]

Just read your post, none of the replies, but I hope I can reassure you. I am 'under' Professor Dayan and the consultant I see is excellent. Prof Dayan has worked hard on behalf of those of us who need T3 in the past and I am sure he will be doing the same in this symposium. The team does not hand out T3 to anyone who wants it but they do recognise that some genuinely do need it.

[Gcart]

Good , that’s my understanding of Prof Dayan , So maybe some hope from this symposium 🙂 re Thy01d’s post