I co-lead ITT Improve Thyroid Treatment group (currently on Facebook, but hopefully a website soon) We work on certain pieces of work with Thyroid UK and The Thyroid Trust.
In August 2023 NHSE issued 2 pieces of guidance related to T3 prescribing - They contradicted each other, but one said all patients should be de-prescribed T3.
We need evidence to show if this is still happening, so we can feed back to NHSE.
Has anyone been told they can't keep their T3, or they can't start T3, because of national or local guidance/ policy? If so, please can you give details, and say which area you're in? Many thanks.
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TaraJR
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I would be interested in what the other document says, you say contradictory, does it say prescribe T3?
I had my Thyroid removed in 2009 and was at suppression levels, now stopped. I have always been a low converter and have asked my doctor about T2, he is coming back to me at the end of the month. Mind you getting a T3 test is hard enough, it used to be automatic for Thyroid cancer as part of a yearly test. Almost a conspiracy not to test T3 which would show up low conversion.
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My liothyronine prescription was discontinued. My normal GP retired and nowadays we see a different one each time. It was a game of annual Russian Roulette as to when I'd get the wrong GP. The younger GPs don't have the confidence to make decisions and so follow 'guidance'. My GPs are now too scared to prescribe.
I was given a referral to my local hospital endocrinologist but as I live in NW London the referral was intercepted and I was passed onto a 'liothyronine clinic'. This turned out to be an endocrinologist with poor thyroid knowledge who is being rewarded for discontinuing patients' liothyronine prescriptions. This problem is now with the GMC. See my previous posts for details.
Another issue is that NHS England and NICE give lip service to patients' concerns and draft guidelines that have some degree of reasonableness. After an interval they then do an 'update' (without patient involvement) which sabotages patients' input into the initial guidance.
A further strategy is that anti-T3 doctors offer 'training' that goes against the spirit of the guidelines. This has a deep long-term effect on new doctors. An example is the MIMS video on Hypothyroidism mimslearning.co.uk/learn/co... (you have to register and pretend to be a doctor to view it). Although the NICE guideline is a consensus document this training video takes an extreme anti-T3 view, there is no attempt to present a consensus view. Studies from the USA are used to suggest there is over diagnosis in the UK (USA doctors diagnose more than twice as often as UK doctors).
The persistent problem we have is that these extremists have control of the guideline process and seek to change guidelines once patient groups have left the meeting.
The GPs say they have no knowledge of prescribing liothyronine and so can't take responsibility for prescribing. I was told by one GP that she would continue my private prescriptions if I got an endocrinologist to monitor me she would prescribe.The issue I have is I need around 45 mcg daily and I don't know if an endocrinologist would prescribe this. My TSH remains low if I come off hormone, I don't know if this is because it was suppressed for a long time or pituitary damage from a major car accident we had in 1999. That's why I accepted a referral to a local NHS endocrinologist, I hoped they would check this out, he said he would. He was lying, hence it's with the GMC
The impression I get is the GPs have been got at, a mix of scare stories and intimidation. I think my GPs want to help but are fearful. I feel I should go for the head of the snake.
When I stopped adding one grain of Thiroyd desiccated thyroid extract to 100 mcg levothyroxine, my TSH was still suppressed after three months, and responding when tested after 5.5 months. Despite increasing my dose of levothyroxine, my TSH was over range at 5.8 miu/L [0.3 - 5.0] within nine months of ceasing the source of T3. The range for fT4 is quite wide at 9.0 - 25.0 pmol/L, which poses its own problems, and the lower limit of the TSH range has been increased to 0.55 miu/L.
I told my GP in Croydon that I’m in this forum and that members are getting T3 and wanted him to refer me to an endocrinologist recommended that would prescribe it. He said it’s not possible to get t3 and I wouldn’t be successful in getting it. What’s happening to get this resolved?
Jgoodwin977 what reason have you been given given in the last 12 months? Has a doctor said that the local or national policy is not to prescribe T3?
In fact, all national guidance does say a consultant can initiate a trial of T3 if you're still symptomatic on thyroxine and other causes have been ruled out, so it IS possible to get T3 on the NHS (albeit often not as easy as it should be)
Thyroid patient charities and groups have been fighting this hard since 2017 - it's extremely difficult, but we have made progress!
That’s what my GP said to me on Monday as he’d struggled to get it himself for another patient. He didn’t say why, he just said it’s impossible to get. So pleased you’ve made progress and can’t believe the amount of ignorance involved. What’s the plan next?
I wonder if you could ask him the reason for it? As national guidance does say you can have a trial from an endo, if you're still symptomatic on thyroxine and other causes have been ruled out.
good to know, thank you. I will book in next week and ask and tell him. Unfortunately the criteria doesn’t apply to me, so I guess I’ll have to get it privately, but it may help his other patients.
Hi TaraJR I had my T3 de-prescribed in 2019, in London. T3 was prescribed by a consultant I saw regularly at a London teaching hospital. They had px'd T3 because I was a 'poor converter'. I felt so much better taking it, more positive, motivated and 'alive'. Then about a year later my NHS GP stopped the T3 px without telling me. I was shocked and upset that they would do this without notice or conversation. When I queried it, the GP referred me to another endo at a different hospital whose job, it now appears, was to wean me off my "dependency" (their word, not mine). They told me that T3 was bad for me, there was a risk of osteoporosis and arrhythmias, and I didn't need T3. I've not had T3 since and I don't feel as well as I did. The 'dependency' endo hasn't responded to my messages since I stopped taking T3. Until I read this thread I didn't think it was possible to get T3 anywhere in the NHS and I'd given up trying. I believed the 'dependency' endo that said the T3 was damaging my health. I'd love to feel as well as I did when I was taking it but obviously I don't want to risk my health in other ways to do so.
Hi I've been told & had letter stating as such that a T3 trail will not be funded as I live in the East Lancashire NHS trust area, I seen an endocrinologist at Airedale hospital which is North Yorkshire trust I think any way is nearer to me than Burnley Hospital. He asked me to lobby my MP etc of which I'm trying to do. Email to MP went but the cc Haven so I'll have to do them separately. Took me 30 years to see an endocrinologist various dosages thanks to the health unlocked I've improved using betaine HCL for low acid(no pepsin in stomach) & better vitamins but still not just right hence recommend for a 3 month trail maybe have to fund myself🤦 so I'll keep you updated. Cheers nice to know others out there☺️👍
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