I haven't posted in about a year or so, so I hope you'll bear with me explaining it a bit of background. I'm now 40 and was diagnosed with an underactive thyroid when I was 21 - have been on levo all my life and never felt well.
About 5 years ago things took a turn for the worse in regards to fatigue and muscle pain and I started to investigate things in a bit more detail and saw an endo for the first time. He diagnosed Hashi's and also low Vit D and B12 so I've been on prescribed Vit D and B12 injections for a few years now (not that getting levels optimimum has impacted on symptoms).
I have some autoimmune stuff going on - confirmed lichen planus and possibly sjogren's syndrome - I don't have antibodies but rheumatologist thinks that I *may* have it due to my symptoms. I'm on hydroxychloroquine which I generally find helpful.
Anyway I've been seeing an endo in London who was recommended for the last couple of years and also my local hospital will no longer prescribe T3.
I was originally on 150mcg of levo and that was reduced about 3 years ago when T3 was first introduced so I have 100mcg of levo and 20mcg of T3. I've never felt introducing T3 has helped and neither endo would give me a higher dose due to supressed TSH when I'm on it. I've just had my latest bloodwork and I'm not really happy...........
Free T4 is 9.4 pmol/L (range 9-23)
Free T3 4.8 pmol/L (range 2.5-5.7
TSH 0.12 (range 0.3-2.0)
Basically my endo's advice is that he wants to REDUCE my T4 due to my below range TSH!!!!!!!!!! My TSH has only ever been low since I started T3 and I know T3 does supress TSH so it doesn't worry me. I think my T4 is barely in range as it is and I can't see what benefit it's going to be to cut it further. Surely it will only have a negative impact?
I've basically point blank refused to cut my T4 and the endo was pretty sharp/rude to me and he's said that they'll repeat the bloods in 2 months and if TSH is still supressed I'll have to cut my T4. He pretty much just said to me that I need to accept that this is as good as I'm ever going to feel and there's nothing he can do to improve things for me! I was stunned really
So I've now decided I'm done with that endo and I'm not planning to go back but I'm not sure what to do next? The endo I have been seeing was on the recommended lists etc and so was the one before that but I literally just feel like I'm getting nowhere with them.
I have thought about NDT but I've not found an endo who is happy to monitor me blood work wise while I'm on it and I'm just scared to try it if I'm honest, plus the financial implications of having to buy it in myself is an issue.