Hi all, hoping for some advice. Having been suffering for a few years now with various symptoms and not really getting to the bottom of them (despite eventually getting a diagnosis of vitamin B12 deficiency), my GP ordered some auto-immune blood tests as he thought he would check for lupus. The lupus tests all came back normal, but the cardiolipin levels came back as raised. Given my symptoms (headaches, pins and needles, dizziness,/balance problems, fatigue, poor memory...), he felt it was worth referring me to a rheumatology specialist.
So, 7 weeks later I saw a consultant (in Manchester, UK) and they repeated the anti-cardiolipin antibody blood tests. The rheumatologist was very reluctant to re-test; he was annoyed the GP had done the blood tests in the first place, as I had not had any blood clots nor any miscarriages. He felt that the GP had had no cause to go looking! Anyway, the levels were very slightly higher than when the GP had done them a few weeks earlier and I still have all the same symptoms, which from reading the information on the Hughes Syndrome website, are many of the low-grade signs of the condition.
The consultant's letter states that he doesn't think the raised levels are of clinical significance as I have no history of clotting or miscarriage.
Do I just let it drop, and accept that I do not have the condition? Or, do I insist on pre-emptive treatment to avoid any future blood clots and take advantage of the fact that these tests have been done prior to me suffering any serious consequences? If I can avoid having any DVTs or strokes, simply from taking asprin daily, then to me that seems incredibly sensible and appealing.
I would really welcome some advice. I know virtually nothing of the condition, the diagnosis protocols or even the significance of raised cardiolipin levels in the absence of any actual blood clots or miscarriage. I am more than happy to argue with the GPs at my practice - I had to do that plenty before I got my diagnosis and treatment for the B12 deficiency so am prepared to do so again if necessary - but equally am willing to leave it alone if there is no case to argue.
Thanks in advance!