As I promised some time ago, Endocrine News, a journal of the Endocrine Society interviewed Rudolf Hoermann regarding our group's new understanding of the thyroid, its disease and treatment. This raised a lot of interest on this site. This has now come out as "A Second Opinion" in endocrinenews.endocrine.org
Seems to be easily available and a good read for TUK users. Now free to use and disseminate.
Written by
diogenes
Remembering
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"Denying these patients T3 normalization does not help their symptoms,” Hoermann says.
We should not place a TSH value, which we may yet have to fully understand, over patient complaints we understand well as a doctor.
This is not to say all is easy — there are non-specific and overlapping symptoms with other diseases, and over-treatment must be avoided.
However, it is equally clear there are residual symptoms in the presence of a ‘normal’ TSH.”
The guidelines have a role in standardizing patient care, but in doing so they tend to marginalize patients that do not fit in.
They were meant to provide general guidance only but not to be instrumentalized as a legal imperative to treat everybody the same.
“The endocrine mechanisms of the HPT control should be extended to address important aspects of T3 physiology, together with the predominance of presentation and uniqueness of each patient’s biochemistry,” he says.
Big thanks to Rudolf Hoermann and to you and your group Diogenes. The likes of Weetman and Pearce won't acknowledge it but hopefully you'll get through to some of the more intelligent, less bigoted endos.
And therein lies the problem because without the support of people like Pearce , nothing will change because he is instrumental in formulating the guidelines on which many Endocrinologists base their clinical decisions.
The endos who are able to think for themselves and seem to know something about T3 use ( and they recognise a patient's need for T3), seem unwilling to go against the guidelines of their CCG , and if they don't approve of T3 use you're basically stuffed.
I fear nothing will change in my lifetime, and I'm only just into my 60's. It's quite depressing really. Thankfully there are a few enlightened CCG's who do recognise their patients needs and respond appropriately, and allow prescribing of T3.
You're right of course knitwitty but I have to cling on to some hope, even if it's false. I'm a lot older than you and live with the fear of being incapacitated because I know I wouldn't be given the T3 I need to live. The blank eyes and stupid statements of (most) of the doctors I've met over the years tells me that.
Thanks for replying DippyDame. It makes me feel better that someone understands and doesn't rubbish my thoughts. There's no point in even mentioning it to anyone in my family, including my husband. This condition and my thoughts about it make me feel very much alone, which is why this forum is such a godsend. I hope you confound the so-called experts and live a very long and happy life on your supersize T3!
I sympathise their eyes glaze over when you mention thyroid , whereas if you ask about the latest theory of football tactics of their teams, they become fully engaged.
I fear that is true, coupled with a lack of interest in general of thyroid disorders , heaven only knows why diabetes is a more "sexy " endocrinological disorder to have an medical interest in, it baffles me why more doctors don't find it interesting.
I'm sure it would be very rewarding helping people to regain their former health.
Maybe there aren't enough kickbacks in thyroid disorders, but that just me being cynical !
I agree it is a fascinating area of medicine and science that should attract the best brains and ought to be very rewarding. I suppose the current state of affairs makes it highly unattractive proposition.
Yes I can understand that. I remain incredulous at the state of things and the injustice of it all but the weight of evidence is growing all the time to disprove the rot we are being fed now. It will prevail but I’m not sure I’ll live to see it - I hope I do & I’ll laugh like a drain knowing those silly mysogynistic old farts have been outed as frauds & completely out of touch with reality, their daft theories shown to be the nonsense they are. Most importantly, their power to torture us ended.
I see this possible future scenario. First, because we do not belong to the cabal under Antonio Bianco in the US, it will first, because of his position in US thyroidology, find resonance there quite soon. The problem in the UK is that they will want to repeat any studies, because there seems to be a fundamental inability here to change without checking oneself. The problem now is money for a long and detailed (and valid) clinical trial - not leaving out the up-to-now inability to construct a properly based study because of the intransigence of certain opinion-makers. The change in treatment paradigm is so far-reaching as to threaten the reputation of some specialists who I don't need to name. When these characters leave the stage I think the newer endos will be more flexible and open to argument.
I'm usually optimistic but on this issue I feel it's going to take a seismic shift to overturn the current erroneous opinions that are deeply entrenched and adhered to...
until they finally become recognised for what they really are.
An unmitigated disaster for thyroid patients.
Who knows who might fill the shoes of the current decision makers....
It won't be in my lifetime!
I hope you are correct because this scandal must end!
Maybe this new (.repeat).research can be funded by a family trust of the people who messed with t3 supply by buying the t3 factories shutting down all but one, and then inflating their prices by several hundred percent.They have since been fined something like a hundred million pounds for their corrupt practice but,as far as I am aware, haven't paid a penny . Maybe they can pay for this repeat research ??
In my first hint at the publication of this paper, I worried that it might not emerge because the opinion-forming dinosaurs might find it too rich to swallow. They didn't, but resorted to subtler tactics. First was the imposition of the title "A Second Opinion". Note the "Second". It sneakily downgrades the importance of the message. Next was an inserted statement the we were grateful to Prof A Bianco for his "insight". Nowhere were we "grateful" and have never been so but merely acknowledged his alternative proposition (if only he reciprocated. These insertions are highly political. A long-retired thyroidologist and a very old physical/bio-chemist can't be allowed to be in advance of the field, and, heaven forbid, teach the field to think again. Who do they think they are? They have to be taught the lesson that they are graciously allowed to publish so long as they acknowledge that their word can't be taken alone, is therefore only granted permission and is subordinate to the medical cabal.
i think you''ll have the last laugh... that bloke who made Jodrell Bank had to make it out of bit's of shed using his pocket money , but they are still using it today to see black holes crashing into each other .
'shed' was tongue in cheek , but there was definitely some scaffolding and some bits off an old battleship in there originally ... boor bugger ended up hundred of thousands of pounds in debt as a result of building it and in serious danger of going to jail.
diogenes you once quoted Drummond Rennie's wise words....
I quote again for those who may have missed that post
There seems to be no study too fragmented, no hypothesis too trivial, no literature citation too biased or too egotistical, no design too warped, no methodology too bungled, no presentation of results too inaccurate, too obscure, and too contradictory, no analysis too self-serving, no argument too circular, no conclusions too trifling or too unjustified, and no grammar and syntax too offensive for a paper to end up in print.'
You pose the question....
Who do they think they are?
I'm off an age ( ok ancient!) when I've become increasingly aware of an arrogant, entitled attitude pervading society.
We appear to be expected to accept anything we are told even if we recognise it to be wrong.
( We might think thyroid diagnoses and treatments)
If these errors are questioned then weak excuses are trotted out and then sometimes followed by an accusation of our causing emotional upset.
(I suspect most of us have experienced this in current daily life)
This attitude appears in all corners of society, in universities, in schools, in government, in business, on street corners, in the home and so on.
It is causing endless friction
Few listen ...but they all seem to have have a voice!
We had to learn to think, to listen to advice from older more experienced people, to see both sides of a discussion etc etc
You say,
They have to be taught the lesson that they are graciously allowed to publish so long as they acknowledge that their word can't be taken alone,
Exactly!
And until they are mature enough to engage in a conversation that is based on verifiable facts rather than unsubstantiated opinion thyroid patients will continue to suffer.
. A long-retired thyroidologist and a very old physical/bio-chemist can't be allowed to be in advance of the field, and, heaven forbid, teach the field to think again.
Yes!
That is the experience and knowledge we need to shake the very foundations of current thyroid towers ...which are built on unstable foundations
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