NICE Guidance for Thyroid Disease!

NICE Guidance for Thyroid Disease!

I have just been approached by NICE to register as a stakeholder for new NICE Guidance for thyroid disease.

I have, of course, instantly registered and Thyroid UK is now a stakeholder which means I will be invited to a Scoping Workshop in London on 19 September 2017.

We will be working with our advisers to write a report to submit to NICE as soon as the consultation starts which will take place between 16 October 2017 and 13 November 2017. This ties in nicely with our T3 campaign!

This is something that Thyroid UK has wanted for many years and we hope that NICE will listen to patients and that we can change the current guidance for the diagnosis and treatment of hypothyroidism.

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40 Replies

  • It's such a good news!!!! Thank you for letting us know ;)

  • Oh, I do hope this means a voice will be given to those who fight to get diagnosis/treatment on the NHS due to having a 'normal' TSH, those who cannot convert T4 into T3 properly, and those relying on T3 to keep them well.

  • According to my GPs this doesn't exist!

  • Exactly!! Things need to change, people need to be told.

  • The best news today and thank you for sharing it.

  • Excellent news, Lyn. How can we get you as a stakeholder onto BTA too?

  • Working on it! 😀

  • Fabulous news!

  • Fantastic news.

    Thanks for letting us know.

  • Well Done - Thank You :-)

  • Great news! I hope T3 and NDT will be reintroduced soon.

  • Excellent news............onwards and upwards! :)

  • Welcome news !

  • This is great news, made my day.

  • A foot in door! 👍

  • Very good news.

  • Wonderful news. Thank you for all your ongoing hard work Lyn.

  • This is great news! I hope that, finally, the patient's voice might be heard and, more importantly, be listened to, especially on the T3 front. That, combined with a new licence holder for T3 in the UK, might mean it will be more widely available in the future... We can only hope!

  • Existing guidelines, statements and other such documents have been put out from time to time, as we know.

    Aside from the critical issues such as lack of patient voices, sometimes poor science and medical practice, and questionable interests of those who wrote them, there are other issues:

    Lack of formal review;

    Lack of a proper mechanism for handling corrections and updates;

    Lack of standing - holding up an RCP or BTA paper puts little pressure on a doctor to follow them. (But they do provide a straitjacket that can be worn should a doctor not wish to look outside them.);

    And the difficulty people have in knowing where to look to find them!

    Obviously, if you know it is a BTA paper, you can try looking on the BTA site. But you need to know about the BTA and that they might have guidelines available! I suspect many GPs don't have that at the fore when they look. The obvious place in the UK to look is the NICE site.

    Further, the spread of existing information/guideline. Like the BTF (and I assume BTA) have said that levothyroxine prescriptions should be for longer periods. The MHRA report on levothyroxine makes a recommendation of three months. But local guidelines often mandate shorter (e.g. 28-day) prescribing. So we have diametrically opposed views and no way of resolving the argument.

    Whatever NICE might end up saying, we have one place and there is a forum for discussion.

  • A great result Lyn!

  • Exciting and thank you..I hope your expertise is valued and applied x

  • This is fantastic! How can I get involved to contribute to better care for Graves?

  • Excellent news, well done.

  • Brilliant - well done you! Sending you a few ounces of virtual energy to keep you going!

  • I'd like to make the point (hopefully to be included in the guidelines) that it can take up to 3 years for a patient to adjust to Levothyroxine. This happened to me. With so many awful symptoms, I wondered what on Earth was happening to my body over the first 3 years.

    Towards the end of this time a very old Benefits Doctor informed me of this fact, which was a great relief! I guess he had enough experience to have seen the same problem in many patients.

  • Thanks I never knew that. I've been on it 2 years!

  • Brilliant news Lyn, well done!

  • Brilliant! You go girl!




  • Fantastic news! It has cheered my soul! Well done and good luck to you! (and all of us) xx

  • Fantastic news Lynn well done you x

  • Great News!!!

  • Congratulations!

  • Great news, for those who follow the link you can sign up for their newsletter etc.

  • Sorry I know this will seem a stupid question but what is the difference between Hashimotos and Hypothyroidism? Thank you

  • Hashimoto's is an auto-immune disease that results, eventually, in destruction of the thyroid. That destruction results in hypothyroidism.

    On the way, people have increasing hypothyroidism, sometimes with periods of hyperthyroidism.

    Hashimoto's causes most hypothyroidism in the UK and USA. In some other countries, iodine deficiency is the leading cause of hypothyroidism.

  • Oh well done Thyroid Uk where would we be with you, sending love xX

  • This is absolutely fantastic news! :)

  • excellent, thank goodness :)

  • Thanks for the information Lyn and wont it just be excellent if they listen to you and make sensible decisions which suit the patients and not the 'specialists'.

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