Still refused NHS T3? Please let us know - we need evidence.

[TaraJR]

The thyroid charities Thyroid UK and The Thyroid Trust, and the online groups ITT Improve Thyroid Treatment and Thyroid Support Group Norfolk are continuing to challenge the contradictory T3 guidance wording from NHSE, and adoption of the proper guidance by local ICBs. We need your support.

In the past 2 years, if you have had T3 refused or removed, or been told that local policy restricts your daily dose, please help us. Are you willing to share the impact on your health, wellbeing and daily life including the ability to work or care for yourself or your family? Please comment below.

PLEASE add the area you live in, and the date/s this happened to you.

We will be sumitting joint evidence to NHSE and Department of Health & Social Care. Information will be shared anonymously.

[Obsdian]

My GP received an NHS endo rejection letter and read it to me saying there is no evidence to support the use of t3. So it's not even considered.

[Obsdian in reply to Obsdian]

That was my third NHS endo referral rejection, by the way.

[DippyDame in reply to Obsdian]

The level of ignorance is eye watering.

T3 is essential to life....full stop!

[JGBH]

Ten years ago, when I mentioned to my GP I should really be prescribed T3 in combination therapy with T4 and needed to be referred to an endocrinologist, she told be blankly that their surgery would never agree to prescribing T3 because of cost, even if I found an endocrinologist who would recommend the treatment. My surgery is situated in North West Leicestershire. I requested an appointment with an endocrinologist at the local hospital (situated in Derbyshire, in Derby, because the hospitals in Leicestershire are much further away, so patients tend to go to Derby because we live on the county border).

To my astonishment, I received a letter from endocrinology in Derby stating they would not prescribe T3 …. Therefore no appointment given. INCREDIBLE. So I decided to see a more unlightened Endo (did my research and GP also suggested his name) and went to see him privately first. He listened carefully and said he didn’t understand why I had not been prescribed T3 after my thyroidectomy in 1980… wondered how I had coped… It was quite a struggle! He then saw me at a Leicestershire hospital under the NHS and suggested a 3 months trial of combination therapy. I explained my surgery wouldn’t agree… he told me he knew about the problem with the surgery refusal to fulfill T3 prescription, so organised for his hospital pharmacy to do so. It’s only thanks to him I was allowed to be prescribed T4/T3 combination therapy. If I move away I probably won’t be prescribed this combination therapy.

[Kimmi01]

Hello

I went to my gp to ask for an increase in T4 to 75 from 50 as my blood test seem to point to a difficulty converting to T3 but slight improvement from when I was on 25mg. My gp was reluctant to increase further worrying about overdosing me on T4 and thought that T3 might be better. He referred me. I went to see a nhs endocrinologist privately. Who did not want to provide me with T3 and did not agree that I am woefully under medicated. He sain that all my symptoms could been down to menopause. I have been treated by a dr and consultant for menopause and my treatment for this is I think accurate. The endo eventually agreed a small increase 75/50 alternate days. I have been on this for a few Weeks now and don’t feel any different. I’m completely sick and tired of feeling sick and tired. I’m thinking of trying a naturopath.

[Kimmi01]

I think so but my gp says I’m on the right dose for my weight. My Dad was on 100mg for years and didn’t feel right until he got to that level and I do think I need more. The difficulty is actually getting it from the nhs. Yes, I checked about the endo and he is a diabetic specialist- you live and learn. Next time I see a specialist I’ll make sure it’s a thyroid one. Until I can get my gp to agree to increase I’m stuck. I think I may have to change my gp 🤷‍♀️

[Kerry124 in reply to Kimmi01]

Good idea 👍

[sparkly]

Blimey! I'm shocked that only 3 people so far have replied to Tara's post. Thought there'd be thousands of us. There are folk out there fighting on our behalf to help get T3 prescribed, so come on, shout out. If we don't, they can't help.