Action for full thyroid testing

[Molly139]

Hi everyone, has there ever been a campaign or a group complaint about the poor NHS thyroid test we get? If there’s anything on here I’d love to read up on it x

[SlowDragon Administrator]

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[Molly139 in reply to SlowDragon]

Thank you SlowDragon I look forward to reading these

[TiggyN]

Yes - the ITT (Improve Thyroid Treatment) Group. They are working really hard to improve the current, almost criminally negligent, pathway for diagnosing and treating thyroid conditions in the UK. You can find them and join them on Facebook.

[Molly139 in reply to TiggyN]

Thank you, I’m now a member of the ITT.

I’ve had a bad 4 years with lots of illness and symptoms and equally I’ve lost confidence in GPs. I need to educate myself on this disease and get my health back

[TiggyN in reply to Molly139]

We have to take charge of our own diagnosis through private testing, it’s incredibly hard when this disease leaches all energy and affects motivation so terribly. If you’re up for lots of research and knowledge about what’s happening to your body, I can highly recommend a facebook group called Adrenal Fatigue and Thyroid Care. Also two books by Janie Bowthorpe - “Stop The Thyroid Madness“ and “Hashimotos: Taming The Beast”. Based on decades of patient experience rather than the useless platitudes of ignorant GPs and arrogant Endocrinologists.

[TaraJR]

A number of UK thyroid groups now work alongside each other, as well as doing their individual work. They all produced a Dossier requested by NHS England and Lord Hunt of Kings Heath bit.ly/LiothyronineDossier2018 . This was to evidence the harm done to patients when T3 was refused or removed. The groups are named in there.

Then they had input into the RMOC Liothyronine Prescribing Guidance June 2019. They're still working very hard for improvement in diagnosis and treatment, and are still in discussions with NHSE.

Thyroid UK and The Thyroid Trust are both charities.

Improve Thyroid Treatment is a very active Facebook group, with instant access to many other members who face similar problems, and where you'll hear the latest news on their work, and get advice if you are having difficulties.

[Molly139 in reply to TaraJR]

Thank you TaraJR this is so helpful to start my journey. I’ve also bought Hashimoto Protocol by Izabella Wentz

[Algic]

I've just suggested a standard letter relating to this I'm not proposing the prescription of t3 but at least getting the test back. The actual Prescription of T3 is another issue. But how can it be managed or the need even be identified if the testing has been stopped. It's a if we ignore it , it goes away approach. I just feel that has been used to long. We ignore doing the antibodies test so your diagnosis takes longer. It's not going to kill you to wait. I think I will be joining ITT too