Medical mystery
I have no clue about what is going on right now. If anyone has any advice where I should go and how to make doctors listen, I would appreciate it. I’m in the UK.
So I have has low cortisol for last 7 ish years. I did a test that showed very low morning cortisol before being diagnosed with another autoimmune condition. It went under the radar as I took steroids for that conditions. I’m now also on immunosuppressant so any autoimmune conditions wouldn’t get worse.
But. I came off the steroid a year ago. Since then I’ve been having low cortisol again. As I tapered I felt worse as well. Adding t3 thyroid medication has helped overall but days like today, I get these weird episodes. I feel like I used to with some extra symptoms. I’m my usual low cortisol symptoms include anxiety, feeling weak, dizziness, etc. I have had Addisons antibodies done (neg immunosuppressant will keep them neg even if I have it), short synacthen test came back normal. When I do home tests, they all are low though. These days when I get these episodes I also feel freezing, have diarrhoea and feel nauseous and dizzy. I don’t throw up though. It lasts about one or two hours and I feel back to tired usual. This usually happens when I have a head cold. I also have low stress tolerance and it takes me a couple of days to recover from stressful events.my worry is that I have budding Addisons that never fully destroyed my adrenals and I’m living this weird half life.
I’ve seen one endo, my usual diabetes one, but they just say nothing wrong because the SST was normal. Do I have to live like this the rest of my life? Is there a doctor that understand? Are there more tests?