I am new to the site, and thank goodness I've found it. Nice to know it's not just me.
When I was first diagnosed with ITP in 1996 post pregnancy, my count was about 80k. It stayed between 60-80 for about 14 years, but has been slowly decreasing over the last two years, and now seems to be between 20-50 (but spikes to 80-100 when I have antibiotics). I don't normally have any treatment, and have only had steroids 3 times since 1996.
My platelets have been about 20 since August and I feel washed out most of the time. I get hot flushes at night (no, I'm not menopausal yet) and have had a sore throat and swollen tonsils since August.
I live abroad (HM Forces posted overseas) and where I am they have no interest until the platelet count is less than 15k, and/or one starts bleeding everywhere. The doctor said that ITP has no correlation with fatigue and that I might be depressed (no); but that wouldn't explain why my platelet count seems to be consistently descending.