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
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ITP_1992
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Hello Immy, you can get a referral from your GP or the consultant currently treating your ITP to an ITP specialist. Because ITP is very rare many doctors, specialists are not experts at ITP so you can see an ITP Specialist to review your case. The list of ITP Centres of Excellence is available from the ITP Support Association website at itpsupport.org.uk. You could choose to see any one of them but I would think for you the best option is see Dr Drew Provan at the Barts and Royal London hospital. He is one of the leading experts in ITP in the UK and anywhere else for that matter. Any problems please do let me know on anthony@itpsupport.org.uk. Do keep in touch and let us know how you get on.
Thank you guys. I did go to my GP yesterday and he said he will refer me to another consultant at my local hospital. I will try to get another appointment and ask if I can be referred to one in London
Immy in my opinion just go to one of the ITP Specialists listed on the following link.....itpsupport.org.uk/itpforum/.... You have a number of options but I would suggest Drew Provan is the best choice at the Barts and Royal London Hospital. Hope this helps.
I'd agree with Drew Provan in London but if Canterbury is easier for you to get to, then Gillian Evans at the Kent & Canterbury Hospital is Kent's ITP expert. There, you have a blood test half an hour before the appointment and the result is waiting for you. At the Royal London blood tests for us are done at the Haematology Day Unit and you don't need a doctor to order it so it's easy enough to arrange.
The London Hospital as is the centre of excellence for ITP, since the hospital that I go to has joined with Barts Health I have noticed a great improvement in the care I receive.
Iagree with the suggestions above but if you need another option my consultant at St Georges Hospital in Tooting is a world recognised specialist in ITP. His name is Dr Stasi and St Georges is recognised by the ITP Support Association as a Centre of Excellence.
If I am concerned that my platelets have gone done I can phone Dr Stasi and have a blood test and get treatment very quickly. There is a heamotology day unit and so I can get treatment between hospital appointments if I need to. I hope you get good support and care soon it really helps to make you feel safe and not so anxious about this rare condition.
I have seen two excellent doctors. Dr David Williams who works on Harley Street and Dr Francis Matthey who works in the Haemotology Department at the Chelsea and Westminster Hospital. They were both fantastic.
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