I just wanted to share what I can only describe as an amazingly positive experience.
I had my TIA in February, APS was first diagnosed in April and I was referred to an APS Specialist in September as the haematology team in my local hospital didn't feel they had the specialist knowledge to treat me longterm.
I'm triple positive, but pretty much asymptomatic (with the exception of the TIA) and medicated with life long warfarin.
He listened to my concern over hair loss on warfarin and immediately suggested I switch to Sinthrome, a different form of warfarin, which should stop the problem. I could have kissed him as every other Dr has just dismissed this as nothing they could do.
He'll support me in self testing (after my own GP practice / NHS Trust has flatly refused) and will ensure that I get the machine and strips I need when they've got me stable on Sinthrome.
He reassured me and gave me an over view of the care he would want me to receive if I decide to have another baby, why certain precautions would be necessary and explaining that apart from the necessary medication and check ups he's confident I can have another normal pregnancy and delivery.
And finally, he told me that if anything changes to contact his secretary and he'll see me as a matter of urgency and not to wait for my next appointment with him.
I honestly couldn't be happier with the care received from him!
For all those who have yet to see an APS Specialist, please push for a referral. The difference between a haematologist who does / doesn't specialise in APS is amazing!
Written by
SheRidesAUnicorn
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Hi, So good to hear that you have found that Specialist who really understands what it is all about!
That is what we try to tell others on here because we know how lifesaving it is. And to be properly anticoagulated and able to keep our level of INR in the therapeutic high range.
We are both triplepositive and have a bigger risque for thromboses. It is very good that you have been seen so quick like this when you have not got any more TIAs and PEs or other clots!
Thank you for telling us this! Have a nice weekend!
Hi there, thank you for writing such great feedback, really pleased for you. Good to see the recommended specialists list over at the charity is working well. MaryF
Glad to hear you had a positive experience from one of the consultants on the Foundation list as did I. I have self tested successfully for years, but the NHS won't pay for the test machine and test strips are a bit of a postcode lottery. I have to buy mine but am going to try my CCG again to see if they will give me the strips on prescription. But whatever the expense it has been worth every penny in giving me control. Good luck.
Hello, good to hear that you have got the help you need and from the hospital that I go to. I hope you don't mind me asking, but did you get to see Dr Thachil through the Kellgren Centre (Rheumatology)? Many thanks
No I didn't go through there - I was seen through the outpatients department (in the AntiCoagulation Clinic) at the MRI not the Kellgren Centre. I was just referred on the NHS by the haematology department at my local hospital.
I believe that Professor Ian Bruce is the APS rheumatology expert at the Manchester Royal, while Dr Thachil is clearly the APS haematology specialist to see.
Goes to show how our condition spans medical disciplines, but really good to hear that SheRidesAUnicorn had such a great experience
At least there are experts in both rheumatology and haematology there!
Thank you. Just wondered because Rheumatology (the Kellgren Centre) at MRI see people with Hughes syndrome which some dr's say I have and others say SLE, though I have warfarin because of heart problems, so was interested in that too!
Iv got go to that hospital on 16 this month to the lump us clinic never got to see a specialist yet just they sort me out I had a stroke in Feb last year got APS xx
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