I had RAI and currently on T4/T3 combo. I have been getting a private prescription from my GP for the T3 as in 2018 she said our PCC wouldn’t fund it. She is now retiring and my new GP wants to refer me to an Endo to discuss the need for T3 as I have possibly been having heart arythmia recently (getting ecg monitor next week) My TSH is undetectable and this is a risk. I want to find an Endo who is sympathetic to T3 prescription and I am willing to go privately. Could someone give me the link to the list of possible Endos (Somerset area) Thank you
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R2d2c3po
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I am intrigued you got a private prescription from your NHS GP? If so, I wonder how many GPs would do this if asked? The endos in my area seem to rule with a rod of iron. They are quite fair though and have a go at GPs as well as patients. Is there an etiquette about this? Basically, dare we ask?
We are very fortunate to have an old fashioned GP surgery where we are given time in consultations and can develop relationships with one of the 3 GPs. I have had my Gp for 20 years, she is female, so may be more aware of thyroid issues, and a personal friend as well (she lives in the village where the GP surgery is located, our children grew up together and I taught her children) so it was easy to ask. However she is very professional and would not have written it had she thought it was not ok. She knew that T3 and T4 should be in the upper part of the range (unusual for GPs) and on seeing my private blood test results agreed with me that this was clearly not the case when just on T4. (Funnily enough when the nurse took my blood for my first medicheck bloods she told me she was NDT that she got from America.) I discussed the risk factors of osteoporosis and arrhythmia with my GP and she agreed to prescribe as I was aware of the risks. I did discuss the lack of medical research on those of us without a thyroid so these risks may not be valid for that group of patients. (I am a scientist)
Unfortunately I may now have developed arrhythmia (I did have Covid this year which could have caused this maybe?) and my new GP is wary now about prescribing the T3 because of this so has suggested I go and see an Endo. There is an Endo in the South West on the list provided by Thyroid UK (he has also been recommended by others) that is open to T3 and NDT treatment so I am going to go and see him. I think finding GPs willing to prescribe T3 may be as hard as finding an Endo that will do the same so I am lucky. I did go in with my blood tests as evidence and had tried to read medical research papers. My GP couldn't prescribe it on the NHS because that can only be done by an Endo. My GP did a private prescription because she knew our PCC wouldn't fund it so there was no point seeing the Endo (though this was 4 years ago things may have changed.) One of the UK pharmacists on the thyroid UK list dispenses T3 at 50p for 20mg which I split in 4 so almost as cheap as when I got it from Germany but I don't think the NHS can get it for that price so it is still deemed too expensive.
My son is actually training to be a GP and did a year of research in endocrinology and he was pretty sceptical when I discussed my issues with him. I think new GPs stick more closely to rules laid out by NICE and are less likely to deviate, particularly when they can be sued for negligence. I can see it from both sides, so many people use Google to self diagnose and it must be hard for GPs to deal with us presenting with a view that conflicts with their training.
As far as asking your GP, it depends on your relationship. The worst they can do is to say no.
Gosh what a lovely and complete answer R2d2c3po. I particularly appreciate your post this morning as I have allowed myself to get a bit down after listening to podcasts and videos yesterday, where doctors were talking about us patients in a very disparaging way. I feel like I have only just discovered how trapped we are in all this. Your post was enlightening. I never thought to ask for a private prescription from my own Gp. I will definitely do that. As you say he can only say no. What have I got to lose? At worst it’s another piece of the puzzle. Thank you.
Good luck in talking with your GP. As I said I am aware I may be very lucky with my GP, but there is no harm in asking. Let me know If you are successful and I can message you where to get the T3 in the UK on prescription.
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