Thyroid UK
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Endo Apt. Update

Well finally had my first ever endo apt. today. They guy was nice, but straight away told me no chance of getting T3 on the NHS, as it was too expensive and wasn't the recommended treatment and there was one other person in my area he was seeing, that also wanted it and there was an ongoing saga, but they weren't going to get it either. He told me he had to be seen to be discouraging me from using T3, but I had two choices, one was to carry on self treating and using the T3 if I thought it was doing me some good, or two, he could work with me to find a dose of Levo not that suited me. He gave me 3 blood test slips so I could have a blood test every 4 weeks to allow for dose adjustments and I have to call his scecretary a day after each blood test to see if he needs me to change the dose.

I also have to have a short Synacthen test to check my adrenals, but he more or less said most people don't fail it anyway. And I am not really looking forward to it, having read a bit about it! :-/

He also talked a bit about NDT and said to stay away from that altogether as a pigs thyroid is much more potent than a humans...but I'm sure he said that that's why some people feel well on it and some feel awful, can't quite remember what he did say fully.

I started taking T3 along with my T4 in August and must admit I haven't felt brilliant all the time, so I am going to work with him to see if I can get on a dose of just Levo that I feel comfortable on, so have stopped the T3 as of today and he said for me to take 150mcg Levo for 4 weeks and then have a blood test. But I had a blood test last week and my TSH was unmeasurable, so I lowered it to 125mcg, which I told him about and in the end he's put up me up to 150mcg for these next 4 weeks. Oh well, onward and upward as they say...


3 Replies

Jill, TSH is irrelevant, so I hope he's also testing your FT4 and your FT3. Testing after just 4 weeks is just silly, you won't have the full effect of the increase, and could lead to over-dosing. 6 weeks is much better. Not impressed with his knowledge of thyroid.

1 like

Short synacthen test is pretty useless, but not uncomfortable (if you think you might fail it, take tissues) - I failed it! If you fail it, you just get sent for other tests (some really nasty) until something comes back normal so they don't have to treat you (unless you actually have full-blown Addisons).


Thanks! :-)


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