Where do NICE and the UK Thyroid establishment come from?

It never fails to amaze me that still after all these years, the UK thyroid establishment still fails to recognise the changes in the TSH reference range of "normality" especially at the hypo end that nearly all other countries have adopted since the arrival of sensitive tests. The reference range with present day sensitive tests is close to 0.6-3.5. Anything above that is NOT subclinical, it is overt. That is it needs treatment (T4) to begin with at steadily increasing doses until health is restored. Our latest paper in Nuklearmedizin - on file at TUK - contact Lyn Mynott or Louise Warvill for a copy - shows the reference range to be as above and certainly not stretching to 10. Even at TSH = 2.8 I personally would put a patient on watch to see if there was deterioration over time. Frankly, I do not understand the wooden intransigence of the UK specialists to reconsider and realise how out of step they are with everyone else. It's not clever; it's sheer ostrich behaviour by people who know best but apparently know nothing and learn nothing. The sensitive tests have for TSH increased its sensitivity. This does not mean that this has increased its utility, but requires more careful analysis of what the results mean.

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17 Replies

  • I would suggest they are a bunch of arrogant men or women who have never experienced thyroid symptoms but consider themselves capable in deciding what is best for their patients without having a clue how those symptoms affect daily lives.

    As an ex_nurse this has had a huge effect on me finding this attitude. I wrote essays during my training on stereotyping and how the medical profession needed to address this issue and they have not moved forward 20 years on!

    I would very much like to read that paper and will email Louise.

  • Well said. I too find it quite extraordinary. Am I right in saying that the TSH blood test only became gospel in the 70s? Presumably before that, a patient's symptoms were taken into account? I will get a copy of your paper.

  • The UK medical establishment has been so intransigent for so long, has caused so much suffering, and shortened so many lives, that they are probably terrified of being sued.

    Alternatively of course, they could just be so arrogant that they think they can't possibly be wrong.

    I think there is a historical prejudice against women and their health problems. Giving women diagnoses of ME, CFS, fibromyalgia and/or somatoform disorder, is (in my view) just the modern way of diagnosing hysteria and neurosis. And the pain, weight gain, brain fog is probably just considered typical of whinging, lazy, greedy women.

    The fact that some men get swept up in this puts them in the role of innocent bystanders who get hurt too.

    Oh - about somatoform disorder... It has been renamed to somatic symptom disorder since the DSM V came out, and is now a group of disorders, not just one.


    It just gets worse and worse. The medical profession is making it impossible for people with rare disorders to get diagnosed at all.

    Edit : I am not suggesting hypothyroidism is rare.

    Edit 2 : Sorry, this turned into a rant.

  • Yes it is mainly an old boys club so there is a definite bias against women. Sure it was the Black report that indicated this too way back when - but that could be my memory screwing with me.

    It stinks and a rant is absolutely acceptable! :)

  • Well said humanbean. Agree completely with your comments. I've never considered myself a feminist but really feel that women are getting a raw deal health-wise.

  • No wonder. We are entitled to rant.

  • Diogenes, here, here, I couldn't agree more. Unfortunately it is not just the UK, the US participates in this fraud also. PR

  • Thanks Diogenes. You are so right and they are so wrong. How do we know, because we've been at their mercy. Just as a certain one at the ATA 2013 Meeting said that the first person to get levothyroxine was in 1892!!!! That the TSH is the, perfect I think was the word he used, and that if our TSH is in range and still dissatisfied with levo but still have symptoms we actually have a Somatization Disorder even though the pain we felt was 'real'. I think you probably have seen a reference about that before.

    Dr John Lowe sent a Rebuttal to the British Thyroid Association about their False Statements re NDT. Despite 3 yearly reminders, they never responded. They are ignoramuses despite any qualifications they may have.


    Thanks to you and your team. I wonder how long it will take. Dr Skinner was up against them all the time as he diagnosed as he was trained but again hounded. One particular "specialist" said to a patient (unknown to him also seeing Dr S) "we've got him now". She told Dr S.

    One person took Dr T's paper to her doctor the other day, hopeful, wherein it says how low the TSH should go or the addition of T3. I think he said she was now in 'normal' range at 4+ but refused to read it as he already had?? Didn't increase her medication.

  • Another glorious non sequitur from the other post on NICE and subclinical hypothyroidism, The post stated that they say that some people with TSH between 4 and 10 have hypothyroid symptoms, yet by their definition are sub clinically hypothyroid. You can't be both sub clinically hypo and have hypo symptoms - it's a logical nonsense because you have overt clinical indications. Actually they kicked firmly through their own goal by admitting the existence of hypo symptoms in people with TSH >4 - but will no doubt weasel out by saying that not all people are hypo in that range. But the adverse longterm implications (heart etc, cholesterol) for true SUBCLINICAL hypothyroidism (TSH modestly above the range up to 10, but FT4 normal) are also well studied and imply the need for some T4 therapy (perhaps not permanent if the patient returns to normality but worth doing while they are in an abnormal state). So a bigger logical mixup by their own admission is hard to beat.

  • Do you have a link to this Diogenes?

  • That came from a post three or so below mine

  • Diogenes, It's utterly ridiculous for a symptomatic patient to be told "it's not your thyroid" when s/he has a TSH of 4.8 in a range 0.4-5.0 but to get a diagnosis of hypothyroidism confirmed when TSH reaches 5.1.

    The GP presumably ordered a thyroid function test based on the presenting symptoms but strict adherence to guideline ref ranges means intelligent interpretation of where within the range the results lie isn't happening. Too often "it's not your thyroid" seems to be the only diagnosis the patient gets and s/he continues to suffer the symptoms which made them see their GP in the first place.

  • Agree with this but conversely when they set the ranges stick rigidly to them but the moment you ARE 5.1 or 5.4...oh but you are only marginally out of range therefore no treatment - the range is the range until it suits otherwise!

  • totally correct and of course this rigid reliance on just TSH is ignoring all those with Central/2ndary/pituarity Hypothyroid who will always have very low or non existant TSH plus equally low Free T4 and Free T3

    They are ignored as a non entity when actually theres far more of them than they want to admit

  • I realise how lucky I was to become hypothyroid around 20 yrs ago when the rules were not applied so rigidly. My GP was willing to monitor my TSH for just 3 mths, and when he saw the direction it was travelling in (from around 4ish to over 5) he began to prescribe Thyroxine for me, and increased it until it normalised.

  • Diogenes, do you know how many/which countries have changed the TSH range? I know that the USA changed it in 2003, but have since changed it back!

  • I believe Germany certainly uses around 4 as top of the TSH range and often below. Probably Japan also and France/Italy that I know about. I think the problem is the royal mixup in the US/UK end brains about subclinical hypothyroidism and real hypothyroidism (overt). Somehow they have got it in their heads that a subject with normal FT4 and moderately raised TSH (up to 10) MUST fall into the subclinical hypo group, and that if they show clinical symptoms then it must be something else that's causing the symptoms. I think that this category includes both overt (symptoms) and non overt (subclinical - no symptoms) and like everywhere else there is overlap of categories. It seems to be shoehorning all with moderately raised TSH into the subclinical category like it or not. That's why nothing is done till you reach 10 - because that is the arbitrary thinking point that puts you into overt hypothyroidism by their criteria. But it is illogical and putting people into categories according to "goalpost" mentality (within or without the chosen limits).

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