TSH Not The Total Picture of Clinical Symptoms - Thyroid UK

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TSH Not The Total Picture of Clinical Symptoms

PR4NOW profile image
8 Replies

Another little gem from the American Association of Clinical Chemists website. PR

aacc.org/publications/cln/2...

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PR4NOW
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Marz profile image
Marz

...and that was 2011 :-) - just more evidence of how slowly things move in the world of medicine. Thanks for posting.....

shaws profile image
shawsAdministrator

Thanks. It's a pity the Endocrinology Societies do not acknowledge this phenomenon.

diogenes profile image
diogenesRemembering

A big problem with the American thyroid diagnostic world is the grip that the socalled "gurus" have on procedures and tests. One thing in the article is untrue - TSH has NOT been the gold standard for thyroid testing since the 1970's. Up to at least the end of the 80's, free T4 had as big if not bigger role to play. Only when TSH tests became sensitive did matters change. One thing about the American way of doing things - it is significantly different from the European way and was from the outset. Unfortunately the UK diagnosticians, managers and procurers of tests have swallowed the US line rather than the European (but even they go the TSH only route from cost reasons). The US has always had the undercurrent of reluctance to take up free T4 testing, because of both the Not Invented Here syndrome and rubbishy totally wrong studies analysing how the tests work, which was bogus but influential. The Americans have never taken to free T3 at all, and if they do T3 testing, it's total T3. Only a minority of "mavericks" like Henry Lindner see the need for the elevation of free T3 testing to its rightful place in diagnosis. And of course the hopelessly inadequate products from the manufacturers produce the poisonous combination of little use for the test, therefore it's expensive, therefore few use it, therefore there is no incentive to improve, and anyway it would cost companies millions to do it, which is a poor return on investment, so they don't do it. As the regulators are asleep at the wheel, there's no one to force removal of inadequate assays from the market.

tegz profile image
tegz

The regulators will stay asleep at the wheel until shaken out of it by external patient action.

As to who the regulators are- that is the question as the RCP don't have a statuatory position to defend, from what I read. I think their view comes under the advisory umbrella rather than strict rulings on diagnosis and treatment.

The blind sided 'good bit' on TSH is adhered to slavishly and the' iffy difficult bit' about following up symptoms ignored.

diogenes profile image
diogenesRemembering in reply to tegz

Hello Tegz,

The regulators are for example the FDA in the USA and the European counterpart. I know personally some people who were involved in regulatory affairs. This was a dull, hugely detailed, hugely controlled business. Producers of tests must go through a large number of formally demanded and devised testing hoops to demonstrate the viability and validity of their products. Usually after a pioneer product has been through the initial baptism of fire, then the regulators rely on "equivalent" performance when rival copycats are produced. The problem is that for free T4 and especially free T3 (much less for TSH) a) they've quite obviously failed the equivalence test b) they use the definitions and demands that are suitable for total analyte tests (e.g. TSH) but require significant modification and extension for free T4 and free T3 tests (actually free anything, like steroids) and c) the whole process invokes handle turning without thinking, but just crossing the t's and dotting the i's of a predevised worksheet. If the boxes are ticked, OK.

tegz profile image
tegz in reply to diogenes

As suspected! Thanks for clarifying some.

I think Levo derived from the Synthroid line in the US.

Likely, we just follow the drug makers rules on use.

Problem is -we don't have the somewhat more flexible [ if less available] health care that they have over there. They can also get NDT more readily though I understand T3 is not commonly used, with or without T4.

With significantly lower upper limit for TSH [3.0] they still have an estimated 13m. undertreated thyroid cases by reports I 've seen, here and there.

Does this show in a lower relative 'level of distress' over there? - we do seem to have an accepting attitude in the UK towards medics which doesn't do us many favours.

We seem to be stuck in a T4 time warp.

vajra profile image
vajra

Ta PR, music to my ears, and fits with my experience.

Endocrinology to my mind got stuck in its high castle (ivory tower?), and is to a very large degree refusing to reach out to face the real world.

I can't say for sure, but it feels like the group long ago decided that its role (and likely the real money and status) was in positioning as 'experts' (the by now discredited variety of detached theoretical scientist) in the management of serious illness.

This as opposed to engaging in the down and dirty (and hence time hungry and probably less profitable) business of working with (stroppy) people and/or holistic practitioners and the like to prevent or to catch early stage health issues, and to restore well being.

It tends to pay to look carefully at actions when trying to figure out what people really believe about something. The long standing (and from my experience quite determined) deafness and blindness to patient symptoms and input, and the associated tendency to categorisation of supposedly insignificant variations in hormonal status from the individual's norm as harmless (experience is more and more clearly showing that these often lead on into chronic illness) seems to speak volumes in this regard.

The good news is that (whether as a result of a different training, or of pressures arising in the real world - or just that I got lucky with my current guy) there do seem to be some coming through now that are much more health and patient centred - far more progressive, and much less dogmatic...

ian

paigie profile image
paigie in reply to vajra

When I asked a UK g.p. last week about the strength of the medication he suggested, which was 25% lower than the manufacturer's leaflet, he replied : "That figure's not within our guidelines". Who sets these blanket solution "guidelines" ? The RCP, the Government, or BNF ? What happens to some of us individuals who are not exactly average ? I don't pay for this medication, so was he trying to save the (chaotic) nhs some pennies ?

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