Right, now that's out the way, if anyone has any ideas I would be grateful. Will try and keep it short for ease. I have Hashimoto's and am hypothyroid.
Started self dosing with T3 last August after being on Levo for over a year and feeling dreadful (T3 was bought over the counter by me in Greece in late 2019 on holiday, and I am now fast running out). I dosed low and slow, and at this point in time am taking 100mcg T4 meds and 37.5mcg T3 meds (split over 2 doses a day).
Adding T3 has made me feel much better than I did, albeit it I'm still not well. However, I've gone from being like a zombie on T4 and barely able to function, to feeling just mildly exhausted (doesn't sound great, but it is honestly so much better than I was). Also, my hair has stopped falling out and grown back lots, and my low carb diet also started working again (it didn't work at all when I was on T4 only, and I had piled on around 4 stone). I've lost 3.5 stone, which has definitely helped with my aches and pains. I'm also completely gluten free.
Anyway, finally saw NHS endocrinologist in May. He wasn't happy I had started T3 (of course) but saw that it had helped me a lot. He agreed to write to my GP supporting my taking it, but refused point blank to prescribe it himself. I tried explaining that I knew an endo had to do a 3 month trial before sending it on to GP, but he refused to listen, just saying that he couldn't prescribe, the hospital wouldn't allow it, there was no funding etc etc.
Letter was sent to me and GP in June, and so I put in a prescription request. Of course, this was denied. I keep chasing it and being told different things. However, what I am now being told is that the endo has to apply for the funding, and that they keep on chasing but are having no response.
The endocrinologist is based in Peterborough, so that's Cambridge and Peterborough CCG, whereas I live in Northamptonshire so my GP is under Northamptonshire CCG.
I feel like I'm caught between the two. My GP surgery obviously can't force the endocrinologist to apply for funding. If he doesn't (and in both my appointment and the letter he sent he basically said there was no point as it would be denied). My GP can't prescribe it without the endo doing it first. I can't appeal any decision made by the CCG if it isn't applied for in the first place.
Has anyone been in this situation and managed to resolve it? Or got any advice on how to proceed? My only thought was sending a letter to the practice manager at the GP surgery, but not sure how far that will get me. The endo letter said he'd see me again in 3 months, that's now passed and no sign of any more appointments.
Thanks in advance for any help.
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Fluffysheep
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Endo is putting their career before you, the patient’s wellbeing. An endocrinologist has to initiate T3 via hospital pharmacy for 3 months, before writing to GP to request they take over ongoing cost of prescription with annual review back with endo
Thanks SlowDragon. I'd already looked up and saw that both Peterborough and Northamptonshire do prescribe. Was going to use that if I ever got to appeal the CCG decision, but I can't appeal if the endo doesn't apply in the first place!! It's so frustrating.
I had a chat with the pharmacist when collecting my last thyroxine prescription. I'm on good terms with him, as weirdly he used to be at the chemist I used in Northampton before I moved, and he was very helpful when I was trying to find dressing solutions after surgery. He confirmed that he has 2 or 3 customers who are prescribed T3 medication that they collect from his pharmacy - obviously he couldn't give me any more details than that.
Do you think going to PALS at the hospital where the endo is might be a good idea? That's the only other thing I can think of doing.
I did get the list a couple of years ago now. I gave 2 suggestions of where to be referred, and was referred to one. However, it appears that the one that was on the list for Peterborough isn't there any longer, and the staff I asked hadn't even heard of him. So unfortunately, I was stuck seeing the Dr that I saw.
I'm not sure if I can be referred to yet someone else? This is already the second I've seen (the first one wasn't long after I'd been diagnosed and was at the local hospital, total waste of time. Wrote different things in the letter to what we discussed, and referred me back to the GP).
I did write to her last year actually. It was asking to be referred to an endocrinologist (which she did) and asking to have my levo increased (which she didn't, but she did send my letter off and received advice from endocrinology not to, so her hands were tied).
I guess it's worth considering, as she is the head GP at the practice and also on the board of the CCG (but probably still has no sway on getting the endocrinologist to apply to his CCG).
Hi Fluffysheep, the process needed for applying for funding is called an Individual Funding Request (or IFR). Both your GP and consultant can make an application on your behalf. There is often a battle between consultants and GPs as the process is long and time consuming so neither party wants to do it and you get pushed from one to the other.
There is a contact email for the CCG on the Northamptonshire IFR page. If I were you I would contact the email and explain your circumstances northamptonshireccg.nhs.uk/...
If they aren’t able to help you, go through the CCG complaints process. The CCG hold the core contracts (which IFR is a part of) with the GP practices and hold the contract with the hospital, so should be able to influence both parties. The CCG have doctors working in there who will be able to take your complaint forward and hopefully reason with the GP, or consultant or both.
Have you considered writing to your MP. Endocrinologists are allowed to prescribe T3 if you can prove you need it. I was refused an NHS T3 trial by a local Endocrinologist in Chester. I went private and got my T3 trial. I’m a very poor converter and had the DIO2 gene test as positive. The trial was and is a huge success. Even after my success the NHS refused to prescribe. My private only Endocrinologist intervened and the NHS Endo was reprimanded I was informed by my GP. I now get T3 off the NHS. What swung it for me was the positive DIO2 gene test and the intervention from my private only Endocrinologist.
I have since written to my MP for back up as the NHS Endo has threatend to stop prescribing T3 if my TSH goes suppressed. Luckily for me, out of 19 T3 blood test results, it’s only gone suppressed twice. My MP has been very supportive so far. He’s my back up if the NHS Endo decides to pull the script. I get regular 3 monthly thyroid tests to build up my case that I need the Liothyronine. So far it’s all in my favour. You have to box clever and get some evidence built up I believe.
Terrible though isn’t it we have to play chess like this in order to keep well.
That's an interesting suggestion, thank you. Hadn't thought of that at all.
The NHS endocrinologist also wasn't happy as my TSH has been suppressed for ages. It was suppressed before I even started taking T3, although my T4 and T3 levels were good. However, he was going on about that. Wouldn't listen to me when I told him that it was likely to be supressed when I was on T3 meds.
That will be another battle I'm sure, but obviously the first battle is to just get it prescribed in the first place!
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