Hi there, I've used the site before but as my rheum told me he was pretty sure I didn't have Hughes I disappeared for a while...
3 years ago I was tested for Hughes as part of a work up done by my migraine specialist. My IGg levels came back at 300+ (normal 1-10) but were followed by a normal result 6 weeks later. Nothing more was thought of it until this blood test was repeated less than a year ago while being tested for Behcets, and came back once again very high, this time 200+. I was referred to a rheumatologist who was very concerned by the high level and ran a repeat blood test which once again came back normal. He was very confused by this and said it shouldn't happen. He repeated once again, and once again it came back within normal range. At the end of June it was repeated again as standard by my neurologist migraine specialist, and it came back in the 200-range again.
I have to wait 3 weeks to see my GP as he's on holiday, and then I imagine he will ask the rheumy to see me again (he's one that HSF have on their database).
The thing is, every single high blood test result has been processed by a lab in Liverpool, and every time they repeat it elsewhere it comes back within normal range. It makes no sense and is very confusing.
I match the Hughes symptoms well, Rheum thought I did too and was talking Warfarin until we had a normal result again and then lost interest and said he thought it was unlikely that I had Hughes.
I'm sick of them messing with me to be honest, I just want a straight answer, or at least a heparin trial to see if it makes a difference!
Basically I'm just looking for some advice, what do you do when they can't make their minds up?! My neuro has referred to it as antiphospholipid syndrome in his letter to my GP, so it seems as far as he's concerned that's what I have? But whether rheumy will agree is another matter. It's just so your life in their hands and it's frustrating!