Our next key paper : W've just been told that our... - Thyroid UK

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Our next key paper

diogenes profile image
diogenesRemembering
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W've just been told that our article " Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis" in the Journal of Clinical and Translational Endocrinology is now in production for publication. When it is published it is open access, This is an important addition to our series because it looks at the different way in which, on the one hand, subclinical and overt hyperthyroidism manifest themselves and on the other, how overdose on thyroid hormone presents itself, from the point of view of the relation between TSH, FT4 and FT3. The situation relating these for hyperthyroidism in all forms is vastly different from socalled hormone overdose in therapy. So that believing wrongly that all three states are the same, [and that hyperthyroidism per se promotes bone loss and atrial fibrillation so that hormone overdose in therapy should do the same (diagnosed by suppressed TSH)] leads one falsely to include therapy overdose based on TSH but not FT4 or FT3 as leading to the same outcome. Once again its the FT3 that determines overdose not TSH or FT4.

Let you know when available. The paper is invited by Italian scientists to form one of a group of papers on therapy.

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diogenes
Remembering
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dolphin5 profile image
dolphin5

Sounds very helpful. Thank you!!! 🙏

Can't wait!

Especially as a recent result showed suppressed TSH, well over range T4 and just under range T3. And I do not feel overmedicated!

Valarian profile image
Valarian

Excellent ! When they pulled together the new NICE guidlines, there were several areas relating to being hyperthyroid which they said needed more research,.

helvella profile image
helvellaAdministrator in reply toValarian

What do you think the chances are of NICE taking this paper on board and updating the guidelines in a finite time? :-(

(It used to be that very slow things were described as "glacial", think that is going out of fashion now.)

Valarian profile image
Valarian in reply tohelvella

well given the glaciers are melting ....:(

But the more research done into being hyper, the better, and I especially like that Diogenes' article acknowledges the different states of being hyperthyroid.

helvella profile image
helvellaAdministrator in reply toValarian

The paper - I am delighted. Don't get me wrong, it was expressly the attitudes of NICE, BTF/BTA, ATA, and so on that were the target of my comment. :-)

Valarian profile image
Valarian in reply tohelvella

yes, I guessed ! :)

UrsaP profile image
UrsaP in reply toValarian

Valarian Research needed across the board! When the guidance deals with primary treatment only in both hyper and hypo. And hypo not considered outside of primary. Bearing in mind the idea is to make hypers hypo, give them T4 only and pass back to GP.

diogenes Thank you to you and your team of authors for all your efforts, surely with your article s now getting published they can’t be so easily ignored. Can they?

Valarian profile image
Valarian in reply toUrsaP

I don't disagree with the need for more research generally, but the NICE work specifically identified several areas where more research was needed into people who are hyper. Currently, there is no good treatment for someone who is hyper (as opposed to over-medicated on thyroid replacement), so our long-term prospects inevitably amount to picking the least unacceptable evil.

At the moment hypers who become hypo are treated in the same way as people who are hypo from the outset, eg because of Hashi's. If we understood more about the differences between hyper people while they are hyper, that might suggest differences in treatment when they become hypo (as often happens, one way or another). Ultimately this might help hypos too.

UrsaP profile image
UrsaP in reply toValarian

I understand what you are saying but there is no acceptable evidence/research on hypo’s either, especially those who do not fit into the T4 bog standard treatment box. Not all hypo is hashis. There is research re Graves, I believe and I’m pretty sure Kristein Boelaert said 80% of Graves was inherited. So this should be telling - AI - genetics need investigation. KB did say she wants to push for research including the DIO2 gene...but to what end I wonder, I’m very cynical. It seems to me that KB is pushing for RAI to be the first line of treatment for HypEr which I found very worrying. Destroying peoples thyroid should be a last resort not a first. And as far as I know there are procedure quota’s to be met each year to maintain ’specialist’ level. So do they perform procedures/ops for patient sake or career? And KB trains everyone in the UK who uses RAI.

The real problem lies in the fact that there is no good acceptable evidence of anything. So we are all in the same boat = poorly treated.

I asked Kristein about Hypo Graves - my Spina thy (if I have the name right) came back with this. She had not a clue as to what I meant, let alone be able to explain I to me.

She being clinical lead on the guidance. Seemed to have very limited knowledge, imo, of anything but RAI. Had not known of the Clinical Knowledge Summaries that NICE have had on pages for some time., until last May - nor did she know anything about the licensing of NDT - which I believe does not need licence as natural product, and is a grandfathered product, which does not need licensed - predates licensing. So question how can they make judgements on things they don’t actually know about. And will research under this type of direction help any of us?

When they wont recognise the need for different treatments for hypo as it is, they are not going to be suggesting different treatments for different hypEr patients when they make them hypo? Unfortunately the hypo = T4, one pill fits all, is all they know. Even tho they know T4 is inadequate - their answer is to give a greater dose of T4. No consideration for those who can’t take t4. They don’t exist. Even thought they know 10% of Hypos’ can’t get well on T4. The long referral wait might save some patients, give them time to investigate and research themselves, and hopefully leave them questioning the options rather than having them foisted on them.

Lastly who is going to pay for research? KB told us in the meeting on 25/1 that we were doing the right thing? I guess she meant speaking out, that maybe that will help promote funding somewhere, personally I can’t see it - thyroid id the new leper, no one wants to touch it. Too complicated. And even if research is funded in the future, will it be independent or will it have an intended end result?

diogenes profile image
diogenesRemembering in reply tohelvella

I come to the lamentable view that glaciers are "roadrunners" compared to medical acceptance of error. The problem with all erroneous medicine (look to past situations) is that nowhere is there acceptanceof error but only a sort of quiet unacknowledged change of heart (burying the past as an unconvient episode to be swept under the carpet). Likewise here. The only thing in question is when. The table is set. It's time for the guests to stop drinking and avail themselves of a different feast sobering up in the meantime.

in reply tohelvella

Slow, slow, stop, stop slow.

Back up, slow, slow...

Stop dead! :-/

JGBH profile image
JGBH

Thank you. Are NICE and other institutions likely to review their guidelines once they have taken read all the papers, do you think? If only.

TaraJR profile image
TaraJR

NICE will only consider randomised controlled trials. Because in hypo there aren't any/ enough, the committee used 'their own experience' to write the those parts of the guideline.

Nanaedake profile image
Nanaedake

Great, the question of what constitutes too much thyroid hormone and how to evaluate it is one I need an answer to. In fact, it will be invaluable to anyone on thyroid suppression therapy. I can't wait to read it. Once again thank you to the team for doing this research!

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