Our eBook of collected papers now available - Thyroid UK

Thyroid UK
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Our eBook of collected papers now available

Frontiers in Thyroid Endocrinology have informed me that our eBook collection of papers is now available from the site:

frontiersin.org/research-to...

Tihs collection is a large part of our work that shows a) the individual nature of thyroid function parameters (i.e. each person occupying their own narrow range within the much wider general populaion range), b) the incorrectness of using the healthy TSH normal range as a diagnostic for therapy, c) the effects of nonthyroidal illness on thyroid parameters, d) the important role of direct T3 production by the thyroid as a controller of T4-T3 conversion by the rest of the body, e) the absolute need to monitor FT3 in therapy, f) the collapse of the control system when all thyroid activity is lost and the resulting fundamental change in T4-T3-TSH relationships. and g) because of individuality in thyroid parameters and response to treatment, the need to go back to patient symptom presentation as a key part of diagnosis and treatment. The overarching message is the individuality of patients and the resulting essential need to treat them as individuals rather than the "shoehorning" present diagnostic approach of "in or out of the normal range". It also urges a serious examination of combined T4/T3 therapy in suitable patients (no matter T4/T3 or NDT).

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Wow, that’s fantastic. Thank you so much. Plenty to read and digest.

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Brilliant xxxxx

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That's great. Thank you for all that you do.

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Thank you for this valuable resource. Wish we could send them to our Endos, but I haven't got the courage.

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Brace up! If you don't do, you'll never now! Not all endos have cloth ears.

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diogenes I don't think I dare upset this one as he is the best our local hospital has got. At least he is learning a little bit more as we go along. Last time he tested for trembling and the time before he asked me if I was taking the co-factors for B12. He does at least test me for FT3 even though he does not prescribe it. we learn so much from your papers.

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Terrific! Thank you so much! And congratulations!!!

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Thank you so much for posting. I look forward to reading tomorrow and live in hopes that the info may help to turn the tide with respect to thinking amongst GP's and thyroid "specialists/endos".

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Brilliant ! Seeing my endo on

Friday. I’ll send him the link/ print him off a copy/talk to him

about it. He was open to prescribing T3 so may be more progressive than some. Thanks Diogenes.

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Fantastic news Diogenes! Thank you so much for all your work and for flagging it up. The Ombudsman recently upheld my complaint that the the NHS Endo refused to see my daughter who remained symptomatic on T4 because her bloodtests were within normal range. I am now about to contact the NHS Board in Glasgow to ask for a 2nd opinion for my daughter. I will print the papers out and send with my request. It is perfect timing. I will keep you posted on outcome. Thanks again!

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Thank Heavens for you and your team.You give me

hope!

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Thank you so much for this.

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Thank you so much for this and for all that you do to support the now very many of us who do not fit the “norm” and just fall through the cracks and are left to look after ourselves. There are now so many of us, perhaps we are now the “norm”?

Some “light” reading for us.

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Thank you for this!

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Perhaps now is the time to approach the British Thyroid Association for an attempt to reconcile your brilliant research with them and perhaps even NHS England?

Could Thyroid UK or your good self forward the research for their comments?

From your response to j_bee, are you happy for us to share with our GPs and Endo's?

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Lyn Mynott has forwarded to the NICE Guidance committee our paper on the fallaciousness of reliance on randomised clinical trials and meta-analyses to explore preference of combined T4/T3 therapy over T4 only. We have pointed out that simply trawling once again through faultily designed trials will simply come up with the same tired answers. The problem with the new Guidelines Committee is that apparently they will only countenance RCTs and M-A's as valid Evidence-Based material for analysis. You can see the unholy mess they will get into and the dangers of misunderstanding the basis of what they are using.

Re: using our eBook evidence: do so wherever you can and however you can.

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Many thanks for permission to use your eBook.

Re. NICE, when I looked at the NICE Developing NICE guidelines page on their website they say that: Evidence is Information on which a decision or recommendation is based. Evidence can be obtained from a wide range of sources, including randomised controlled trials, observational studies and expert opinion (of practitioners, people using services, family members and carers). BTW I know that what people/organisations say they will do and what they actually do can be very different.

In the NICE Clinical Knowledge Summary for Hypothyroidism, they use the RCP statement and the BTA statement , Bernadette Biondi's review of thyroid and heart problems, Akintola's meta analysis, ATA Guidelines etc. as evidence

Your eBook is a shift in the paradigm which is why I am suggesting that Thyroid UK have meetings with NICE, NHS England, BTA, BMJ etc if possible.

In my experience, simply forwarding evidence does not initiate the expected actions, but meetings are more productive in this scenario. It seems to me that your work is too important not to push it as far as possible. As one of the authors, it would be great if you could attend any meetings as some (nearly all) of the maths and concepts are beyond my ability to disseminate. Not that I am saying I could or want to do that when others (Lynn, yourself, greygoose, etc.) are more able to do it.

I don't want to come across as pushy, its just that your eBook is a great leap forward.

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The problem is simply, I'm not a medic. Basically, I was educated as a biochemist/physical chemist and got my doctorate many years ago under Nobel Laureate Cyril Hinshelwod. I've had careers in two universities, business (working for a company and on my own behalf) and acting as archivist for the Cochrane Collaboration on gastroenterology treatment RCT's. Not belonging to the medical cabal makes it easy for them to ignore my work, which they have been assiduous at through my working life in the area. Indeed, I can say ruefully that what I've done elsewhere was met with withering disdain and outright attack of 30 years duration that hasn't completely ended yet. Ironic that one by one the attackers slipped away without any admission of the sterility and futility of their attacks (i.e they were wrong but never admitted it). That's life for you if you stick your head over the parapet: expect bullets in plenty.

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I'm not a medic either. Ironic indeed as many endocrinologists don't start out as "doctors" but as biochemists themselves. This may account for the lab centred approach. I'm not a medic or a barrister, but my understanding of evidence is that outside of a criminal court, where there are rules of admissible evidence, anything put in front of a judge, Tribunal or Panel is evidence. It is for the Judge, Tribunal or Panel to assign their own weight to it.Your CV is impressive indeed. In my view your CV should carry a lot of weight as would the integrity of the research.

On a different tack but in the same area, using the above and the Ali v Newham case, it is probably time for Thyroid UK, TPA, UK, ITT and others to produce an alternative statement to the BTA's statement. Your eBook is a fantastic basis for that statement. It -legally- carries more weight than the BTA statement. Plus your co-authors also have impressive CVs.

In my view.

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Thyroid UK and the other groups are now working together on a dossier for Lord O'Shaughnessy. We have a meeting with Lord Hunt next week to talk about future steps. The BTA are quite clear about patients needing T3 and I have hopes that the next set of guidance from them will be more inclined to allow patients a trial of T3.

There is more research coming which I think may well change things and we hope that we can help to get further correctly designed research on T3 and NDT.

When we finally get around to finishing our new website I think we will be putting a position statement on there about T3 and NDT.

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Hi Lyn, that's great news, thanks for your input.

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It was the 'sticking my head over...' that led to eight years of diabolical stress. Coming through and out of the other end, tipped into menopause - WHAM - double, triple... then endocrinology [aka "The Dark(est) of Ages] = Ducking Stool that I'm still teetering on. I'm not done with them yet... :-) x

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Hi Diogenes, this seems like a fantastic leap forward but am I the only one who doesn’t understand it? I’m new to this and I’m by no means lacking intelligence but I could read it a dozen times and still not fully understand it.

If I showed this to my Doctor who insists my TSH is suppressed and dangerous would it allay her fears? Does it have credibility and if it does why? I hope it’s ok to ask and please don’t think me rude 😟

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I would show it her, and use my summary of its results as I put at the post head. If you want more re TSH. Here goes. In health, you can obtain a healthy normal range from a panel of subjects. In health, the thyroid isn't just a factory producing T4 for the body to convert to T3 as it needs. It also produces directly on average about 25% of the T3 that the body produces. So the FT3 that governs health is the combination of direct T3 from the healthy gland and T4-T3 conversion by the body. Now let's do a thought experiment and abolish the thyroid altogether. Now give the patient only T4. In this case the body conversion has to work harder to produce not only the T3 that came from conversion, but also make up for the T3 the thyroid used to make. But you will need more T4 to force this to be achieved, if indeed you can achieve this. So if you give more T4 to get the same FT3, you will suppress TSH more than in the healthy state. Ergo, the TSH range in health is not applicable to treatment, where a much lower TSH will be needed, indeed usually below its healthy range lower limit.

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Now that is a clear explanation and... logical.

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Thank you Diogenes that makes a lot more sense. I will try and read all the information again now you’ve given me a better insight. Thank you for taking the time to reply it’s very much appreciated. 💐💐

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Just seen this - well done! Oh thank you so, so much. I've much information - John Lowe, Mark Starr, Broda Barnes, Hertoghe... to more recent stuff. I do 'take them on' and this will help enormously with my much larger piece of work, which is taking me so long due to increasing illness. I'll get there, or die (65:35 at the moment ;-) ) Excellent!

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Thank you.

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