Hi everyone, I am new here and wonder if anyone can help :). I've had ITP since I was 5 (20 years now) at first it disappeared almost every 5 years and then came back again. I moved to the UK when I was 14 and went for almost 7 years without it until 2 years ago. I was admitted in hospital and stayed there for almost 2 weeks!!! The doctors in my local hospital didn't seem to know much about this condition so I kind of had to tell them how to treat me lol. I had 2 platelet pools, steroid therapy and IV Ig terapy, my platelets went up to about 180 and because my bleeding stopped they discharged me and I just took Prednisolone at home for about 4 months but my platelets dropped to 32 and i hated thos steroid so was put on Azathioprine (although it made my white cells drop). Once my doctor was happy with the platelet count he discharged me. In September 2013, I went to A&E with heavy menstrual bleeding and bruising and after a blood test my platelets were 4 so I was admitted for almost a week, i was on transexamic acid and methylprednisolone, then discharged after the bleeding had settled and my platelet count was 26. I then took Predisolone for about 2 months and I was very unhappy with them because I could not sleep, was too weak, felt drugged (high) and just wasn't myself so when my platelets went up to 90 I started reducing the steroids gradually (was first on 60mg). I'm not on any treatment at the moment but feel as if my platelets have dropped (sometimes you just know). What annoys me is the doctor I'm seeing is useless, on numerous occasions when I went to see him, I had to do a blood test a day or so before the appointment and I always make sure that he has booked me in for one. Every single time I arrive at phlebotomy and they tell me that he hasn't booked me in so I then have to call his secretary or look for him around the hospital, sometimes I can't get hold of him I end up wasting my day for nothing and when I go to the appointment he tells me there was no point of coming to see him if I didn't do a blood test. When I try to explain that he didn't book me in for one, he blames it on his secretary and when I call her she blames him. I had an appointment on the 4th Febryary and the exact same thing happened again so when I phoned the secretary she told me to go around the hospital and look for him!!! I just had enough and walked out of the hospital then phoned the secretary and told her to tell the doctor that I will be making a complaint. Can anyone please tell me about any good consultants/haematologist near Kent or London because I feel that the ones in my local hospital just don't seem to know a lot about ITP and I just feel like a guinea pig ready for their experiments.
P.S sorry about the long story, just so angry and worried my condition is getting worse and I have NO doctor to help me