NICE Guidelines Draft Guidance on management of... - Thyroid UK

Thyroid UK

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NICE Guidelines Draft Guidance on management of Thyroid disease consultation

PR4NOW
PR4NOW

Michelin posted this a few hours ago. Is this not a draft of the proposed new guidelines we've all been wondering about? Did I miss someone posting on this? PR

nice.org.uk/guidance/indeve...

nice.org.uk/guidance/GID-NG...

16 Replies
helvella
helvellaAdministrator

Unusually, yes, you did miss the links being posted and some discussion. :-)

PR4NOW
PR4NOW in reply to helvella

Rod, thank you, I totally missed it. Nothing really new in the guidelines. PR

helvella
helvellaAdministrator in reply to PR4NOW

I don't know about that.

They appear to plumb new depths of incompetence and ignorance. :-)

galathea
galathea in reply to helvella

They certainly do.... where do they get the idea from that if the upper level in the eange for tsh is say, 4.5 you shouldnt give replacement meds till it gets to 10. Any ideas?

lidoplace
lidoplace in reply to galathea

This is the confusing thing - diagnosis above 10 but once medicated keep TSH in range the top of which varies from lab to lab and country to country. Also the construct of subclinical has nothing to do with how the patient feels but all about clinical testing

helvella
helvellaAdministrator in reply to galathea

I have always thought it is based, as so much, on ignorance.

If you imagine that in primary hypothyroidism, to begin with, TSH rises to top of range, then slowly and continuously gets higher and higher. If that were the case, waiting for 10 could mean that thyroid hormone levels have been low for long enough to prove that it was not a transient situation.

Trouble is there are so many things that confound this simplistic idea.

1) It is well-known that in autoimmune hypothyroidism the output of thyroid hormones varies, sometimes widely - as in Hashimoto's flares.

2) There is no solid body of evidence as to the pattern of TSH elevation over long periods of hypothyroidism.

3) It implicitly relies on the ability of the individual to produce more and more TSH.

4) It largely misses situations in which the body struggles to maintain the biological imperative of adequate T3. While able to maintain T3, the person might be surprisingly well and TSH might not rise that much.

5) It takes people who are generally only visiting the doctor because they feel poorly, gives them a test which indicates at the very least that something is wrong, and then refuses to do ANYTHING.

6) Without also doing FT4 and FT3, even if unrevealing at the time of the first TSH test, they cannot see what has happened to thyroid hormone levels.

7) Almost everyone assumes that the thyroid reduces output steadily. Where is the evidence? Might be true for some, but we need it to be true for everyone.

I suggest that in quite a few people, the capacity of the thyroid reduces over time. Imagine the person needs 100 micrograms of T4-equivalent a day as their absolute maximum output. But they can only produce 90. The first impact would likely be at times of greatest need. That is, in cold weather, when under physical stress, in illness. On a nice warm day, with little stress and not much physical activity, they seem fine. You would expect TSH to vary depending on those same factors.

Tipping over from that 90 capacity to 80, to 70, and so on could be extremely fast or take years.

Obviously, 2) means it entirely misses central hypothyroidism. I suspect that pituitary inadequacy is actually fairly common. (I want to put a number there and would if this were a guideline paper. :-) ) I remember a paper, Swedish (I think), that showed that some degree of pituitary damage was widespread. And to look at it the other way round, I suspect that in healthy people, sudden thyroid removal would not make TSH shoot up very high simply because their pituitary has never previously needed to produce that much.

In my personal case, over many months, my TSH showed a straight line headed upwards. It went from just over two to just over five. The graph I produced was nearly perfect. I was tested for Thyroid Peroxidase antibodies - negative.

By the time I reached five, I had numerous symptoms. I can't let my imagination take me to 10.

(Just for the record. I do accept that people can have one-off high TSH test results. I'd be stupid not to given that all sorts of things can affect TSH levels and TSH tests.)

Aurealis
Aurealis in reply to helvella

They seem to have mainly ignored the plight of those of us for whom T3 has been withdrawn, or is under threat of withdrawal. Heads in the sand :(

As those who produced this document reject without question the prescribing of NDT under any circumstances, then what is the point of them publishing anything at all?

I can have all of my relevant blood tests perfect by taking Levothyroxine alone, but be unable to even walk 50 yards to the corner shop and back without then collapsing and then unable to do anything at all for the next 3 days. With NDT I can walk several miles to the town centre and back with no problems, then do some serious DIY work for several hours before feeling tired in any way.

For me (and many others) life is intolerable without NDT.

Why do these idiots reject the truth when there are thousands like me who know the truth for themselves and constantly complain, but we are treated as if WE are the idiots?

Hidden
Hidden

I seem to have missed it too!

Ploughing through parts of the guidelines now.

One thing I do agree with is the disclaimer (emphasis added)!

"The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and, where appropriate, their carer or guardian."

Oh dear, don't hold your breath if you were hoping the guidelines might support T3 on the NHS.... They say 'The committee were aware that the use of combination therapy is a critical issue in

29 hypothyroidism. Based on the evidence available and the high costs of liothyronine thecommittee could not recommend its use. However the committee agreed that it is plausible in some people who are not responding to levothyroxine that combination therapy may be beneficial. Without RCT evidence to support this hypothesis, the committee agreed it was not appropriate to recommend the use of liothyronine even in this subpopulation however they made a high priority research recommendation for trials conducted in this subpopulation to allow for firmer guidance in the future.'

Great, so the treatment that has restored much of my functioning officially doesn't have evidence that it works and it costs too much so probably won't be recommended for the NHS 😫

Michael

Hidden
Hidden

Thank you PR4NOW.

Thyroid disease: assessment and management

I wonder who wrote it and how much did it cost ??

I am too old to digest the "pure unadulterated piffle" of NHS Consultations.

Others can put it more succintly than I can.

NHS confusing public by using 'gobbledygook' 29 March 2017

bbc.co.uk/news/health-39341411

drivenbyhealth.co.uk/other-...

Then we have -------

Consultation principles: guidance

gov.uk/government/publicati...

The government has published a revised set of government consultation principles. These principles give clear guidance to government departments on conducting consultations. We have amended the principles in the light of comments from the Secondary Legislation Scrutiny Committee and to demonstrate the government’s desire to engage more effectively with the public.

How do we get comments to NICE?

PR4NOW
PR4NOW in reply to prussianblue

Thyroid Uk is a registered stakeholder, you can forward your comments thru them I believe. Click the first link and read #1. PR

Hidden
Hidden in reply to PR4NOW

I discovered today that it all began two years ago with numerous posts relating to Thyroid disease: assessment and management when Thyroid UK was approached by NICE National Institute for Health and Care Excellence. healthunlocked.com/thyroidu...

Everyone had great hopes that at last there was hope.

Help develop national NHS guidance on thyroid disease

healthunlocked.com/thyroidu...

NICEGetInvolved 2 years ago

Hi Everyone,

Just to let you know that the National Institute for Health and Care Excellence (NICE) is developing guidance on the diagnosis and treatment of thyroid diseases.-----------

We're looking for patients and carers to join the committee to ensure the guidance is reflective of the experience and needs of patients.

The recruitment advert is here: nice.org.uk/get-involved/jo...

This explains more about the role, the commitment required and what we can offer to help you take part, including expenses, honorariums, training, and support. If there are any questions please get in touch by emailing PIPrecruitment@nice.org.uk or calling 0161 870 3020.

Thank-you for reading and thank-you to Thyroid UK for allowing us to engage with their members.

Mark, Public Involvement Programme at NICE

After reading in depth your links, I dont think things will really change.

I downloaded this some time ago--- radstats.org.uk/no096/Boyle...

helvella
helvellaAdministrator in reply to Hidden

I have long taken the view that although NICE guidelines might be no better than what went before, could even be worse, we at last have one target.

Until now we have had British Thyroid Association (and Federation), BCA (biochemistry), Royal colleges, and many other bodies, each deciding what to put forward. Potentially every doctor you saw could be going from a different set of guidelines.

And, hopefully, there will be a way of identifying outright errors and requesting correction. Also, documents will be controlled. They will have a review date. After that date, they will become historic and not active. Reviews will happen.

I identified an error in the BCA document (Beastall) and tried and tried to get it corrected. Beastall even agreed with me. But there was no way of achieving the correction. The "will be reviewed" date came and went and the document was still treated as gospel.

Hidden
Hidden in reply to helvella

Thank you helvela, such wise comments.

Sadly, the guidelines for thyroid disease in the UK, have become the bigoted opinions of egotistical “experts”, who resent the results of new research.

I do hope that ‘documents’ will eventually be controlled, as our lives are now being destroyed by the antediluvian dogma of CCGs, who are unable to differentiate between Hashimoto’s thyroiditis and a common cold.

Please forgive the sarcasm.

I became a member of Thyroid UK, long before it joined Health Unlocked, and before the new NHS structure (which was constructed like a House of Cards on foundations of sand).

Lord Rose advised:-

"The NHS must simplify, standardise, and share best practice. The NHS can and must make use of its diversity and scale by sharing experience and best practice. People must be able to talk between Trusts, organisations and across distance. This will break down barriers between organisations, inform managers, doctors and nurses, and above all benefit patients by bringing the collected wisdom of the organisation to bear on their treatment.

This will make the spread of best practice more consistent, more urgent, and more speedy. Individual NHS organisational identities should not shirk sharing between one another, and between sites; nor should they be a barrier to asking for help".

Until the NHS becomes less insular, and embraces the wonderful research which has been, and is being done, worldwide, and without the constraints of Big Pharma, thyroid patients in the UK will continue to suffer and die.

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