Another article decrying TSH as a diagnostic in... - Thyroid UK

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Another article decrying TSH as a diagnostic in therapy

diogenes profile image
30 Replies

This recent article adds to the growing evidence against using TSH as an accurate diagnostic for treatment.

Front. Endocrinol., 16 June 2022 | doi.org/10.3389/fendo.2022....

Redefinition of Successful Treatment of Patients With Hypothyroidism. Is TSH the Best Biomarker of Euthyroidism?

Stephen P. Fitzgerald1,2*† and Henrik Falhammar3,4,5†

30 Replies
carorueil profile image
carorueil

Thank you I've downloaded it.. Do you think this would be enough for my endo to 'ignore' by THS levels? I'm trying to gather scientific data to draft an email prior to sending her my latest test results (blood & cortisol) : I'm hypo (hashi) and she insisted I was hyper as she looked at TSH figures... thanks

diogenes profile image
diogenes in reply to carorueil

It will be worthwhile. For a GP it's more approachable than our very mathematical paper, even though it misses some important points.

carorueil profile image
carorueil in reply to diogenes

Well I'm hoping that my endo reads it! So far she prescribes NDT without knowing how it functions differently to levo... and seems to be obsessing with THS which mine is very low.. I think I'll gather the 'evidence' and present it to her at our 'physical'consultation rather than email.. but thank you!

helvella profile image
helvellaAdministrator

In very approximate figures (just to give a flavour of the real numbers):

60 years of dessicated thyroid.

20 years of levothyroxine growing to the point of desiccated thyroid more or less disappearing.

40 years of the levothyroxine/TSH regimen dominating.

That is three generations of hope - for those who got treated. Followed by three generations of despair - for those who did (and continue to) not get treated as they needed.

The scale of this is, or should be, shocking. And would be for anyone finding out for the first time.

carorueil profile image
carorueil in reply to helvella

Yes it is very depressing - and even more depressing when you have to do battle with endos who already prescribe NDT without really understanding how it works! I never felt well on NDT.

helvella profile image
helvellaAdministrator in reply to carorueil

Desiccated thyroid is not some cure-all that works for everyone. Just another option which, in my view, should be readily available and used to best help patients. Taking great care to avoid bandwagon effects and allowing any combination of products that might be needed by each individual.

diogenes profile image
diogenes in reply to helvella

The problem that the existing doubts emphasise that NDT has far too much T3 v T4. So, T4-only is safe because the body converts enough to T3, and NDT is unsafe because it is assumed there's no change ie T4 is converted to T3 as if the existing T3 wasn't there.. A greater example of chop-logic thinking would be hard to find.

helvella profile image
helvellaAdministrator in reply to diogenes

That does, indeed, sum it up very nicely. Thank you.

pennyannie profile image
pennyannie in reply to diogenes

So. if there has been a medical intervention and the thyroid either surgically removed or burnt out by RAI thyroid ablation do endocrinologists accept that there is no existing T3 ' there ' - where is ' there ' - the thyroid gland ?

and that these patients will likely ' do better ' on the full spectrum thyroid hormone replacement option ?

dolphin5 profile image
dolphin5 in reply to pennyannie

Nope absolutely not!!!

pennyannie profile image
pennyannie in reply to dolphin5

Oh, I know, it's absolutely ridiculous - I just keep playing devil's advocate when I can and now self medicate and mind my own business, most of the time !!!

dolphin5 profile image
dolphin5 in reply to pennyannie

Same here!!!

diogenes profile image
diogenes in reply to pennyannie

No, for a couple of weeks after thyroid removal, there is enough T4 bound on to circulating blood proteins as a reservoir to satisfactorily convert enough to T3, whose reservoir is much smaller. The ingrained belief is that if you are on combined therapy, your dose should closely match to give the FT4/3 that you had when well. But: Hey, wait a minute! We don't know what that was because it was never measured. So we'll just go for the statistical averages we got from a group of healthy people when we set the ranges. And (scratch head!) is that going to be OK for this individual? Unlikely.If we give T4 only can we achieve FT4/3 as in health? No again, for the same reason. So, plough on regardless, using TSH as a measure of success. So, if by T4 or T4/3 combined therapy we can't exactly mimic the orignal situation, that's no different from NDT. In this case, yes the ingested T4/3 is different but the body simply downgrades T4-3 conversion to get the right amount of T3 (the active hormone) for the individual, but staying with a somewhat smaller FT4 level (the inactive prehormone). The body "knows" what it is doing and adjusts accordingly.

pennyannie profile image
pennyannie in reply to diogenes

Thank you - so what happens a year or two down the tracks ?

So I'll stay on NDT, self medicate, and trust my body as it knows more than the medical profession.

This makes perfect sense in the imperfect system we are destined to rely on until we become so ill, to resort to seeking answers for ourselves.

I believe the NHS website did, does, recognise Thyroid UK as an accredited website on which to research and read further around thyroid health conditions.

Thyroid UK support this amazing forum - maybe the NHS should visit this forum and understand how cock-eyed the dogma has become.

Welcome to a parallel universe !!!

TSH110 profile image
TSH110 in reply to diogenes

No grasp of it all being dynamic.

Musicmonkey profile image
Musicmonkey in reply to diogenes

unless you have a conversion issue presumably?

nightingale-56 profile image
nightingale-56 in reply to helvella

I agree with you helvella , that desiccated thyroid is not a cure-all that works for everyone, but it is frustrating that some NDTs do not work as well as others and the best one for many has been taken off the market. Even the one that I was particularly good on still allowed my FT4 to be a little higher than FT3.

Thank you diogenes , for this post.

UrsaP profile image
UrsaP

Keep them coming!

TSH110 profile image
TSH110

I didn’t even managed to wade through it all I’m afraid. Bar the Maths your recent paper was much more digestible for me. I took exception to this statement:

Similarly, patients’ symptoms, whether physical or psychological, though of some value (51) lack sensitivity and specificity (1, 50).

Of “SOME VALUE” what are they on about? What else is of any value when treating us and trying to get us feeling as well as possible? That’s the real problem with throidology they conveniently forget they are treating real living people in favour of a wallowing in a useless load of numbers. We aren’t numbers, I am not a number! My symptoms are/were real and a huge problem for me. How much specifics do they need and what on Earth relevance is sensitivity here? Isn’t the idea to get rid of symptoms not measure and catalogue them? The symptoms have been known for over 100 years (and shamefully a lot better in the past than now), how much more information do these people need to take symptoms as serious and important indicators of a problem and the real nub of the matter.

I get so fed up with it, we already have the answers but they simply won’t allow anyone to access the medications we need whilst supporting us in deciding when we feel well again. No they number juggle with little or no understanding of the numbers anyway ignore our symptoms, patronise us and if we ever actually get diagnosed remove all our choice of available thyroid hormone therapies. We know best like it or lump it. I cannot believe they can get away with such malpractice and disempowerment of thyroid patients.

No doubt this article is a step in the right direction of demolishing this whole rotten edifice but I get really dispirited up with glib statements like that, disguised by qualifiers.

greygoose profile image
greygoose in reply to TSH110

Well said!

TSH110 profile image
TSH110 in reply to greygoose

Sorry I just had to get it off my chest!

helvella profile image
helvellaAdministrator in reply to TSH110

I think the start of diogenes' (et al) paper is quite possibly one of the most readable and excellent I have ever read.

"I am not a number! I'm a free <originally "man" but insert your choice>!"

Picture of The Prisoner's car KAR120C
TSH110 profile image
TSH110 in reply to helvella

Ah the prisoner exactly who I had in mind - great photo 😎

I found the paper quite mind boggling with both positive and negative feedback mechanisms working away in cascades to keep it all in perfect balance. It was like nothing I’ve ever read before about the thyroid. Like entering a completely new universe of understanding! They are in a different league to all those mundane one dimensional plodders.

diogenes profile image
diogenes in reply to TSH110

Their problem I think is trying to put forward their ideas without really letting go of the old models. Of course one must carefully assess "cause or coincidence" on every occasion. Sometimes there are so many possibilities that linkage becomes difficult. I think they should have been more careful in their language.

tattybogle profile image
tattybogle in reply to diogenes

They still seem to be having more than a little difficulty embracing the concept of 'individuality'

There are many enlightened statements in this paper that are refreshing to read .

But i find parts of it are sailing dangerously close to replacing " TSH must be in-range' with "fT4 must be mid-range "

We want treatment guidelines that take the handcuffs off .

Discovering they had just been changing for leg irons would be ...unfortunate.

DippyDame profile image
DippyDame in reply to TSH110

The symptoms have been known for over 100 years (and shamefully a lot better in the past than now), how much more information do these people need to take symptoms as serious and important indicators of a problem and the real nub of the matter.

Exactly!

I'd suggest that it's not information they lack, instead, it's the ability/willingness to source, understand and use the relevant information/science that is already widely available.

They won't admit that they are wrong

Charlie-Farley profile image
Charlie-Farley

Another one! Thank you diogenes- might have to just run into the kitchen and do a little dance! 😜👍

DippyDame profile image
DippyDame

Thyroid hormone resistance as well as laboratory artifact may be misdiagnosed if reliance is only placed on biochemical evaluation.

How many medics are aware of the content of that short sentence?

None that I met over most of my life!

Not a clue!

The endo I did see said when asked...No, definitely not RTH!

Wrong!

Then proceeded to say he couldn't interpret my labs!!

Fortunately I had already started to self medicate by then...so said goodbye.

CFS, FM, IBS etc....suggested instead over decades

Had that sentence been highlighted in student notes I, would/may not have been aged 70 before I found the answers that medics failed to find.

Neither may I have to cope with some of the damage caused over time by low cellular T3, that latterly supraphysiological doses could not resolve.

But, I am hugely grateful that T3 has allowed me to function again....unlike my grandmother who was bedbound for years and I suspect also with RTH.

It was thanks to much reading, trial and error with medication and support from this amazing forum that I discovered RTH and how to treat it.

Hopefully an age of enlightenment is dawning for thyroid patients....asTSH obsession fades.

Hopefully.....

shaws profile image
shawsAdministrator in reply to DippyDame

I'm sorry your grandmother was bedbound. I am glad for you that you've found T3 relieved your symptoms. For me, T3 was also miraculous.

DippyDame profile image
DippyDame in reply to shaws

Thank you!

Granny more or less tried to run the household from her bed!

I only ever remember her in bed and in much pain....and more.

Good to know T3 saved you too.

I just wish the medical profession would admit they need to revise their thinking on T3....And listen to the scientists

My heart goes out to those suffering behind closed doors, with no help.

There are no excuses...

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