Scientific Research Paper April 2019 - Why have... - Thyroid UK

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Scientific Research Paper April 2019 - Why haven't things changed????

Loafinabout profile image
27 Replies

bmcendocrdisord.biomedcentr...

The above research upholds everything we know about the current testing regime for hypothyroidism. It’s not for the layperson (that’s me) but I picked out two sections that will chime with all of us:

“Using the overall preference expressed by patients at the end of double-blind studies as a proxy, patients mostly favoured T3/T4 combination therapy [52]”

AND

“Conclusions

Until the situation is clarified all currently available treatment options should remain on the table and the focus should remain on facilitating the free choice of prescriptible treatment options rather than imposing new restrictions. The biochemically based reason for the rise in patient complaints has to be addressed, not a shift on to them of blame and burden of proof.

This invites a resume of the current state of affairs.

It appears that what we are witnessing constitutes an unprecedented historic change in the diagnosis and treatment of thyroid disease, Conclusions

Until the situation is clarified all currently available treatment options should remain on the table and the focus should remain on facilitating the free choice of prescriptible treatment options rather than imposing new restrictions. The biochemically based reason for the rise in patient complaints has to be addressed, not a shift on to them of blame and burden of proof.

This invites a resume of the current state of affairs.

It appears that what we are witnessing constitutes an unprecedented historic change in the diagnosis and treatment of thyroid disease, driven by over-reliance on a single laboratory parameter TSH and supported by persuasive guidelines. This has resulted in a mass experiment in disease definition and a massive swing of the pendulum from a fear of drug-induced thyrotoxicosis to the new actuality of unresolved designation of hypothyroidism. All of this has occurred in a relatively short period of time without any epidemiological monitoring of the situation. Evidence has become ephemeral and many recommendations lag behind the changing demographic patterns addressing issues that are no longer of high priority as the pendulum has already moved in the opposite direction. In a rapidly changing medical environment, guidelines have emerged as a novel though often over-promoted driver of unprecedented influence and change. Treatment choices no longer rest primarily on the personal interaction between patient and doctor but have become a mass commodity, based on the increasing use of guidelines not as advisory but obligatory for result interpretation and subsequent treatment. Contrary to all proclaimed efforts towards a more personalised medicine, this has become a regulated consumer mass market as with many other situations. This is of little benefit to patients who will continue to complain, and with some justification, that the medical profession is not listening, thereby abandoning one of its primary functions in the doctor-patient relationship.

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Loafinabout
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27 Replies

Exactly!

helvella profile image
helvellaAdministratorThyroid UK

That paper:

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

The lead author is John E. M. Midgley who also posts here under the name diogenes - and yes, he does understand. As do the co-authors. :-)

Loafinabout profile image
Loafinabout in reply to helvella

Oh I saw a Dr Toft but didn’t realise it was ‘the’ Dr Toft whose papers we refer to. I can’t imagine why this hasn’t been taken further?

helvella profile image
helvellaAdministratorThyroid UK in reply to Loafinabout

Yes, the very same Dr Toft. :-)

Because no-one wants to.

That doesn't mean, you, me, members here, diogenes, et al don't want things to change. Of course we do. But the medical establishment doesn't accept this and other papers. If they did, the NICE guidelines - nice.org.uk/guidance/ng145 - would not have been so disappointing.

Loafinabout profile image
Loafinabout in reply to helvella

Primum non nocere or "first, do no harm." NICE guidelines pretty harmful to an unknown number of ill people - how shameful! Thanks for letting me know that there are some like Dr Toft understand our predicament.

helvella profile image
helvellaAdministratorThyroid UK in reply to Loafinabout

It sometimes feels as if Primum non nocere has been replaced by First, do no thinking. :-(

m7-cola profile image
m7-cola in reply to helvella

Quite!

diogenes profile image
diogenesRemembering in reply to Loafinabout

The basic problem is that there are too many reputations at stake to dare to make an abrupt about-turn. In 1985 or thereabouts the ultrasensitive TSH test came on the scene, and it immediately (for financial reasons especially) became the sole test for dysfunction, displacing what was up till then a three-way schedule using FT4, FT3 (total T3 in the USA who still don't get the advantages of FT3 over total) and the more insensitive TSH test which couldn't detect hyperthyroidism. Using the cheap senstive TSH gave the incentive to drop or reduce the others which were slightly more expensive but were seen to be semi-redundant. Over 35 years the paradigm that the thyroid makes T4, so if it fails you take T4 by mouth to restore FT4 and TSH levels back to health (I call it the simpleton's paradigm) has hardened into accepted fact. The rather awesome fact that this paradigm is wrong and needs comprehensive re-evaluation (because the thyroid directly produces T3 as well as T4 and in health fine-controls the whole body system) is too big a dose for the mainstream and current opinion makers to swallow (they didn't do the work so therefore it doesn't exist). To do so would be to admit that over the years they HAVE done and are doing harm to patients strictly against medical ethics. This could be forgiven if they accepted it, apologized and rethought the diagnostic/treatment system. But as I said, reputations are at stake and no one wants to step out of line. They have to face-save by proceeding altogether at snail's pace when at a certain date, lo, the new paradigm is accepted and the old one silently not referred to again. Time and time again this is a comment on medical history.

mountainice profile image
mountainice in reply to Loafinabout

I am sorry I can't recall and I printed it off but can't find it. There was one paper where someone discredited Dr Toft on a certain article so I thought I was to take no notice of him. Am I wrong?

Marz profile image
Marz in reply to mountainice

He changed his stance towards the end of his career - now retired I believe 😷

helvella profile image
helvellaAdministratorThyroid UK in reply to mountainice

It might seem like it, but I doubt any of them are 100% wrong, 100% of the time.

If they were, it would be a much easier job. We have to read and decide for ourselves who is right and who is wrong. That might include discussing here (or elsewhere). And what is right for one can be wrong for someone else.

There are several endocrinologists I profoundly disagree with in some areas but find quite helpful and illuminating in others.

mountainice profile image
mountainice in reply to helvella

thank you

Marz profile image
Marz

If you Follow diogenes you will be alerted to his posts concerning research papers 🤔

Loafinabout profile image
Loafinabout in reply to Marz

Thanks Marz I will do that

mountainice profile image
mountainice in reply to Marz

Thank you so much. Great.

vocalEK profile image
vocalEK in reply to Marz

Great idea! Thank you.

Loafinabout profile image
Loafinabout

Thankyou so much for this insight. I read somewhere that in the medical profession there is “strong pressure to intellectual dishonesty created by the need to be infallible” but I never envisaged that could be maintained in the face of the findings evidenced in this research paper. It gives me hope though that there are those such as yourself “knocking on the door” 👏

Marz profile image
Marz in reply to Loafinabout

If your response was for diogenes - he would not have seen it as you inadvertently replied to yourself 🌻

Loafinabout profile image
Loafinabout in reply to Marz

Doh! Thankyou for spotting that! I’ve sent it on. 🤪

Marz profile image
Marz in reply to Loafinabout

You can tag ...

diogenes

Well, it apparently takes around 17 years for research to hit the mainstream and the NHS is not known for being in the forefront of innovation so they have probably reached about the year 2000.

Hillwoman profile image
Hillwoman in reply to Angel_of_the_North

By the time things begin to change for the better, I'll either be long gone, or in receipt of my centenarian's birthday card from William V.

Loafinabout profile image
Loafinabout in reply to Hillwoman

🤣

Loafinabout profile image
Loafinabout in reply to Angel_of_the_North

😤 that sounds right!

loueldhen profile image
loueldhen in reply to Angel_of_the_North

We’re stuffed. There’s not even been any research. We were better off when they tried the ‘well this hasn’t worked so let’s try that approach’ using T4 T3 or NDT. Now it’s all ‘that’s not physiological’ so we won’t try it but the endos’ physiological model is not the way our very varied bodies work.

lidoplace profile image
lidoplace

TSH/T4 only regime is a long running experiment even if we take it from 1985 - how long will it take to rid the medical profession of this dogma , 2 generations ? As Hillwoman says many of us don’t have that much time left. The media ‘name and shame ‘ game does not seem to be working for thyroid related problems - a complete shake up of the pharmaceutical and testing related ‘health’ system is needed . Oh that a post- Covid19 world would bring back thinking caps and integrity and not just in medicine !

Loafinabout profile image
Loafinabout in reply to lidoplace

Thanks for your reply - I also will be ‘enjoying’ somewhat less than healthy ‘golden years” due to this regime

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