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.
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.
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.
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 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'.
Great News Lyn and not before time that NICE recognise and acknowledged the good work and wealth of patient input as to Thyroid signs, symptoms etc made avalailable on TUK!
Congratulations and I wish you well at the Scoping Workshop in September.
Is there any way "the [wo]man in the street" can get an input into this? Not just organisations like TPUK etc.
I got invited to a recent consultation on Raw Milk, and was able to put my points across in Committee - I feel it was the system actually working for a change. Re this: I'd like, as someone who self-medicates with NDT paying privately, to get my point over too - it isn't just the people with problems with what their doctors do, its people like me who cannot get the doctors to diagnose in the first place, but who are well when taking NDT.
Unfortunately, individuals are not allowed to participate. I've been trying to get Lorraine Cleaver (Scottish Petitioner) a place but they have refused.
Good news. Please fly the flag for patients who've been treated for thyroid cancer and now hypothyroid. A smaller group than those with autoimmune thyroid disease but left on their own to cope after traumatic surgery, suffering with no effective support from GP's.
This is wonderful news and I truly hope that Thyroid disease will be looked at in it's entirety with the emphasis being placed on the different variations, Graves, Hypothyroidism and Hashimotos etc, being recognised as different and not being pushed into a single 1 size fits all. Also the impact of adrenal stress and the possibility of developing diabetes as the endocrine system fails.
Brilliant! My GP says the NHS will not do any other tests apart from TSH, so I hope we will all be able to have the full range of tests in order to be prescribed the correct medication. I've been banging my head against a brick wall since I had a thyroidectomy.
Great news! Will there also be a campaign to get NHS to license T3 and procure it from other companies at the very reasonable prices that Europe are getting? I'm afraid I don't understand why they continue to use a company that is charging such horrendous amounts. The cost, it seems is the main problem.
One other company has already been granted a licence and we know of another company that is going through the process. Whether this will bring the prices down is another matter.
I will inform my pharmacy about this as they are still using Mercury. If they can get my meds cheaper I will be happy to help them if only to save the NHS a tiny amount of money.
Great news , my daughter has been turned down by ccg for NDT even though endo and Dr say she is not well on Levo ...things need to change . TUK is such a great source of information and knowledge and support ...you will be invaluable at this debate .
Just seen this, excellent news!! Can the case be made to check the thyroid results of all women visiting their GP with problems trying to conceive please and to be treated if the TSH is above 2 ideally, 2.5 at worst?
Our youngest daughter is subclinical 3.54 and having major issues ttc, gp refuses to medicate. Our eldest daughter is currently going through IVF and I am a member of fertilityuk here on HU. The board is awash with stories from women who have been ttc for years or have had numerous heartbreaking miscarriages and many of them finally get diagnosed with hypo many years down the line.
Often these women, after a few months of levo treatment (as fertility consultants medicate if over 2.5 to bring it down to under 1), get pregnant often naturally whilst waiting for their turn at IVF and with careful monitoring and altering of dosage give birth to perfectly normal beautiful babies!
By this time many of the women have been trying to conceive for 10 or more years! The cost not least emotionally but also in monetary terms for IVF services, more invasive tests before referral etc, are immense!
Our son in law who is going through ivf with our daughter is a GP himself and has told me that 3.54 would not be seen by him, with his GP hat on, as a problem when trying to conceive. Heartbreaking!
You may have picked up on my ongoing struggle for continued DHEA replacement (my first thread on this forum)? I wonder whether it is too late to ask that DHEA be put forward as a prospective treatment for autoimmune thyroid disease, please? With its anti-inflammatory and immunomodulatory effects, it has been proposed as a treatment for ATD (e.g. Hashimoto’s thyroiditis in patients with normal thyroid-stimulating hormone levels, Expert Review of Endocrinology & Metabolism Vol. 7, Iss. 2, 2012). I know the NICE Scope acknowledges ATD/Hashimoto's as the underlying cause of hypothyroidism in most cases, but I'm not sure whether they intend tackling it in their guidance.
I'd be so grateful if there were any way of promoting DHEA as a prospective treatment, especially in the case of patients in whom, as in my case, DHEA and DHEA-s levels are low without replacement.
I saw my doctor last week and asked fro my T3 to be checked as well as T4, he said they won't test for T3. also asked about NDT he says they don't prescribe that either.
I am currently taking 125mcg of levo.
I was overactive but after treatment with radioactive iodine am now underactive, I have had 2 heart attacks but not sure this is related. where can I get NDT and is it expensive. I am so fed up with constant tiredness, dry skin. dry hair, muscle weakness and muscle spasms and not being able to lose weight. I am having a Vit D test on 16th as I suspect I am quite low.
your story sounded identical to mine except for the heart-attacks lets hope things change for the best . Have had no joy with my GP so going to use my hard earned money to see a private dr . Let's hope you get your symptoms sorted soon . Good health and kind regards annie 123
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