I don’t want to bore everyone to sleep/death, so I’ll be brief and answer questions later.
Two years ago, confused by the mismatch between my ongoing illness and the diagnosis of a London teaching hospital, I found this forum- and half an hour later, humanbean had correctly diagnosed a problem which has turned out to be beyond nhs medicine for 25 years. A catastrophic obstetric haemorrhage had caused secondary hypothyroidism, (Sheehans Syndrome). I thought my problems were over, but I had no idea how resistant these arrogant doctors would be to any input they hadn’t thought of themselves.
First, I bought t3 online- and came back to life!
Nhs endos clung to their unhelpful misdiagnosis of subclinical hyperthyroidism.
I went to see Dr Vanderpump privately. He believed me and prescribed t4. I became an nhs hypothyroid patient- until my gp saw my suppressed tsh, didn’t understand that it was meant to be like that, and withdrew Levo.
I was desperate for a while, but have now got a source of t3 sorted. It feels precarious and I don’t like the feeling of no support or guidance, but at least I’m functional.
I have an nhs endo appointment next month, and after all the harm and time wasting they’ve caused, I wasn’t going to go, but I feel that if I don’t persist, then they’ll think they did a good job and the service for nhs patients will go on letting them down, and they might not all be as lucky as me in finding answers.
I know there are a lot of gaps here and will happily fill in- but what do people here think I should do/say?