Update on work done nationally by joint thyroid groups

[TaraJR]

I posted this on another thread, but more will people will see it as a separate post:

Since 2018 the groups below have worked closely together as a consortium, as well as doing their own work. We produced the Liothyronine dossier requested by DHSC and Lord Hunt., and also sent to NHSE. The British Thyroid Association also supported us on this.

bit.ly/LiothyronineDossier2...

Thyroid UK has pushed for better treatment since 1998. The Thyroid Trust started in earnest a few years ago. Thyroid Patient Advocacy has been working for years.

British Thyroid Foundation are long established.

ITT Improve Thyroid Treatment Group (on FB) was formed in 2017 to fight for better thyroid diagnosis and treatment overall, but we have worked a lot on the T3 campaign.

Thyroid Support Group Norfolk (on FB) and Midlands Thyroid Support Group were the local groups involved on the dossier. The Norfolk group campaigned for 3 years and won their fight to get the CCG to reinstate T3.

I help to run ITT and Thyroid Support Group Norfolk.

The joint groups also had input into the 2019 RMOC T3 guidance, after the draft which they saw needed improvement, producing a better final version.

ITT, TUK, TTT, BTF, TPA were also stakeholders to the 2019 NICE NG145 guideline Thyroid disease: assessment and management.

We've pushed NHSE and NHSCC to issue statements saying T3 should be prescribed to patients who need it. We know it's not happening everywhere though, and we've produced 3 reports with evidence showing how many CCGs are complying with national guidance. These have gone to NHSE and DHSC.

We've got the T3 situation into Commons and Lords debates. After the latest in January, Lord Kamall (parliamentary under-secretary of health in the Lords) agreed to meet Lord Hunt and Lord Borwick who support us, with TUK and TTT to discuss the T3 saga, and hopefully move to finally sort it out.

Obviously there's so much more work needed than just about T3, but it's taken most of time and energy just to do what we have. It is HARD work!

People are welcome to join ITT and help us there. ITT has various templates and advice on various things, including how to fight for T3.

The charities welcome help too.

I hope this helps to give an idea of what has gone on. And of course, much of it goes on in the background. We know that thyroid disease is like the Cinderella of the endocrine world, and we aim for much more change, but it's a long long haul!

[PrincessAnnie]

That’s amazing👏👏👏

[jimh111]

Although in the past I always felt it was fine for most primary hypothyroid patients to be on levothyroxine monotherapy I have recently changed my view. I have recently posted about how levothyroxine proliferates cancer and will within a few days do a short post about studies that show that higher fT4 within its reference interval leads to adverse outcomes and shortens lives. The studies show fT3 has no such effect or a much reduced effect.

The bottom line is that the evidence shows that L-T3 / L-T4 combination therapy is safer than L-T4 monotherapy. Liothyronine levothyroxine combination therapy should be prescribed to most patients on the basis it is a safer option that levothyroxine monotherapy.

[waveylines in reply to jimh111]

Thanks jimh111 thats fascinating. I did not know this. I didnt get on with mono therapy or the synthetics, happily settled on a ndt. I live in (forelorn) hope that the medical fraternity wakes up to all the harm that is being done with the late diagnosis (or none!), poor under treatment approach they gave these days to the treatment of hypothyroidism and their insistence that mono therapy is all thats needed with minimal intervention. Truly scary. Ive often wondered if the consequence is life limiting.

[Blu-cat11 in reply to jimh111]

Hi, Apologies for being late to this conversation, I found it researching for advice. I have been advised by Functional Health Doctor that I need Liothyronine as levothroxine is not working for my hypothyroid disorder. I saw an NNS Endocrinologist a couple of years ago who would not prescribe it and was in fact quite undermining. A new GP at my practice had referred me again to an Endocrinologist as I am still suffering and have more symptoms. Can anyone suggest an NHS Endocrinologist who will prescribe Liothyronine and monitor me? I will go privately or travel if I have to but I am hoping I can find some help through the NHS.

[TaraJR in reply to Blu-cat11]

Thyroid UK has a list of private and a few NHS endos who people have found helpful. No guarantees of course.

Contact: thyroiduk.org/help-and-supp...

If you are on Facebook, do join us in ITT Improve Thyroid Treatment Group. We have template letters and lists of all the pieces of national guidance on T3 that ICBSs (used to be CCGs), endos, GPs should be following as best practice.

[Blu-cat11 in reply to TaraJR]

Many thanks for your help in this matter. I am speaking to my GP today and will look you up on Facebook too. This has been such a battle for me and I am really grateful for forums like this who can help. Good luck with all the work you do. 😊

[Star13]

We are all very grateful for all you do. Thank you!👏👏👏

[Shelleyblue]

Hi TaraJR , I have recently only experienced problems with being prescribed and receiving L-T3 treatment. I was diagnosed as clinical need due to diagnosis of defective DI01 &DI02 gene. My endocrinologist consultant has been great. HOSPITAL pharmacy and APC/MOT and GP not so good in the last week. I have had great advice from your teams of people in the ITT, & TUK. I have managed keep my prescription for now. I would like to join TUK and help fight for better treatment for all thyroid patients especially those who are suffering with hypothyroidism. Having liothyronine has change my life in such a short time. I don't want to lose it. I may end up having to buy my own liothyronine at some point if things don't work out or my consultant retires. I don't want that to happen. Thank you so much for all your hard work in trying to get better treatment for us.

[Lovecake]

Very grateful for all your hard work. I follow ITT and am a member of TUK too.

Hope our issues with T3 prescribing get solved sooner rather than later and than our doctors have a better understanding of what we go through.

[mfinn]

A big thank you for all your hard work, it's very much appreciated. Unfortunately it might be even harder now that Prof Simon Pearce is president of the British Thyroid Association.

[TaraJR in reply to mfinn]

Yes!

[wellness1]

Brilliant. Huge thanks to you and to all involved for their efforts!