Just to say I saw Professor Khamashta on Thursday at London Bridge Hospital. Fab man (If I had wanted to see Prof Hughes - the waiting list was 'til February 15).
Prof Khamashta has said I'm fine on Dabigatran - when I showed him my inr booklet for when I was on warfarin - he said I'm much safer on Dabigatran as I was so unstable and nearly alwasy low (about 1.3 - 1.7 over a 2 month period) He is currently testing Rivaroxaban with the team at St Thomas's and so far it's been a very safe option. The only downside is that he suggested it was too risky for me to carry on diving - as he said risk of haemorrhage is higher and if anything happens under water.................... (he also said you can't lower the risk like you can with flying - by wearing flight socks etc)! but not do much to lessen the risk when diving.
But if I just have to give up diving well, so be it. For peace of mind it has to be worth it. He's asking my GP to refer me to him at St Thom's under NHs so he can check me annually (unless something more urgent is needed when I would see him). Re my daughter with CFS/ME - he is also asking our GP to refer her to him at St Thom's so he can test her to ensure it's not primary APS or SLE also - and that it is in fact CFS - due to many symptoms being similar - and she is only 18 so he said it would be good to know for her future.
All in all well worth the £220 fee for a positive consultation. And for info I have been vegetarian all my life (do eat fish as well though). One difference it makes is that it's harder to get inr levels right on warfarin! Although they say diet makes a lot of difference to CFS/ME sufferers - and eating more small meals a day helps with migraines/headaches.
Have a fab weekend all.