I have had a diagnosed under active thyroid for twenty years, since I was27. Over the years with a supportive GP my thyroxine intake increased to 150mcg plus 20mcg of liothyroinine sodium, otherwise known as t3. T3 lowers tsh levels making it impossible to read blood tests in the usual way, but I had no symptoms of being hyper so my GP was happy to leave it as it was as I felt well and had been able to lose the 3 stone I'd put on when first ill.
3 years ago I was diagnosed with M.E/CFS.
We moved to wales from England two years ago. The health service is distressingly bad and our GP practice awful with no alternatives.
Two months ago my GP decided to cut my liothyroinine sodium totally and my levothyroxine to 50mcg!! I argued strongly that this was unscientific and if anything cut the liothyroinine sodium then retest to see if any indicators that levels too high, but no. Eventually she spoke to an endocrinologist and agreed to only cut to 100mcg! Still a massive drop for my poor body.
I have been making slow but steady progress recovering from my hellish M.E. Then 3 weeks ago suddenly started getting a relapse and reoccurring of symptoms like tingling and thrumming I hadn't had for over a year. It took me a bit of time to realise it was 3-4 weeks since my thyroxine had been so drastically cut.
I know my GP won't care and certainly won't increase my medication and I doubt that an endocrinologist will either as he sanctioned this ridiculous approach to my medication. So I guess there is nothing I can do. But I can not describe how distressed and desperate I feel at having my progress so violently halted, perhaps never to recover. What on earth can one do? It' s insane and I really object to the complete lack of science!