campaign

[camomile9]

Hello. Is there a group campaigning for better thyroid treatment (in UK)? My NY resolution is to try to get some progress for my family members, who struggle so much. I am thinking specifically of changing NICE guidelines. Some progress has been made with ME so why not?

[humanbean]

This is the only group I know of :

facebook.com/groups/ITTCamp...

Since I don't have a Facebook account I have no idea what they do or what they write about.

[jimh111]

ThyroidUK! ThyroidUK.org

[DippyDame]

Many have tried!

Good luck!

Campaign details...

healthunlocked.com/thyroidu...

thyroiduk.org/about-thyroid...

theyworkforyou.com/sp/?id=2...

thyroidtrust.org/scottish-p...

[camomile9 in reply to DippyDame]

Thanks. I will get onto it so I can at least say I've tried. I'm just starting with basics of T4 treatment for hypo, why some doctors aim for certain parts of the 'range' and others don't.

[Smogmonster]

The NICE guidelines have only recently been updated with consultation and input from ITT, Thyroid Trust, Thyroid UK and other patient forums. Unfortunately not everything was taken on board. Suggest you get familiar with the updated guidelines and then work out your strategy from there, however no point in reinventing the wheel, much groundwork has been done over the years so investigate the existing campaign groups and help build on their work..

[camomile9]

Thanks. I have no intention of trying to start another organisation or try to run a campaign alone. The NICE starting point is my concern: 'Evidence showed no clinically important benefits of maintaining TSH levels in the lower rather than higher end of the TSH reference range. ' I know they go on to qualify that but ultimately that first sentence is key. As far as I can see NICE is correct, there is no acceptable evidence. To me that is a problem to be addressed, and I haven't seen much campaigning around it. I am not primarily concerned with T3 or NDT, I will leave that to others more experienced.

[TaraJR]

Thyroid UK and The Thyroid Trust are the main charities campaigning for improvement.

The main Facebook campaign group is ITT Improve Thyroid Treatment, and very active. We have worked with the 2 charities above, and some other groups, since 2018 and produced significant documents and research to send to government and NHS. As a consortium we have the support of several MPs and members of the House of Lords, and have brought about some changes this way. But it is slow, particularly since the pandemic started of course.

Two people who run ITT also run Thyroid Support Group Norfolk, who won their 3 year long campaign to get T3 reinstated there.

Do join ITT anyway, and see if you can help.

facebook.com/groups/ITTCamp...

[camomile9 in reply to TaraJR]

thanks will do

[Timetraveler67]

Please could you tell me what progress there’s been with M.E. I also have m.e. and wasn’t aware of anything changing

[camomile9 in reply to Timetraveler67]

There now seems to be a huge and growing amount of research evidence now about the mechanisms of disease/s known as ME, suggesting potential treatments, plenty of summaries available targeted at patients and doctors; and the evidence accords with the experience of patients. NICE certainly used the evidence base to inform its new guidance this year, even if the new guidance is still not ideal due to pressure of certain vested interests. At least CBT and GET are no longer first line treatments. For hypothyroid I can hardly find any useful evidence to back up even the good advice given on this forum.

[Timetraveler67 in reply to camomile9]

Thank you for your reply I agree there is no help or advice for hypothyroid and like you say this forum is a God send. As for ME I gave up years ago trying to educate Drs I saw. thanks again for replying and well done with what your doing for hypothyroidism and making much needed changes to our treatment

[humanbean in reply to Timetraveler67]

Please could you tell me what progress there’s been with M.E. I also have m.e. and wasn’t aware of anything changing

A forum that is worth joining :

s4me.info/

And this is the sub forum with info on the latest guidelines

s4me.info/forums/2020-uk-ni...

[Timetraveler67]

Thank you x