Back in 2012 I had a bad DVT in lower left leg and thigh and following further blood tests I was diagnosed as having APS and put on Warfarin 'for life' with a target INR range 2 - 3 . This is reviewed regularly by the hospital clinic and Hematology Consultant who manage it to the lower end of this scale with my test last week being 1.8. Even at this level I was not told to increase my Warfarin of which the daily dose is currently at 6.5mg.
For the last year or so I've been feeling really rough with fatigue, muzzy heads, memory problems, pins and needles, numbness in fingers and toes, cramps and mood swings. My left leg, the one that had the DVT has deteriorated since the event, having developed significant Phlebitis and I have regular bouts of Cellulitis. I now have a slight limp and walking any distance is a challenge. In April of this year I was hospitalised as an emergency admission, and once again in May, with chest pains and breathing problems but despite cardiac tests and lung tests nothing of significance was found.
Although I have raised the above and my concerns with my GP and Consultants little importance is attached as long as my INR is within target apart for the prescribing of antibiotics for the infections. I have asked if my APS has anything to do with it and have been assured that it does not. I find it so frustrating in that I feel that I'm not being listened to and being placated in that I have to learn to live with it . This does not reassure as I have also advised that my first cousin, a year older than I, had his left leg amputated due to a blood clot a few years back.
Having found the Hughes forum and read many of the posts it was in some way a sort of relief that others have had or are having similar experiences, but where do I go from here.
I would welcome any advice
Male - 59 years old