Lupus Anticoagulant or Hughes syndrome, anyone got this?

[jellybeans]

Hi does anyone know about this blood disorder? I had a m/c at 20 wks and the lupus anticoagulant was positive on 2 tests 6 wks apart. BUT the doc still says I am at no risk of blood clots etc but that pregnancy would be high isk. They can't say whether I lost DD or my other 2 losses in relation to this. So I am now confused whether I have any condition or not. I get alot of migraines and cold fingers/feet and severe tiredness and anaemia. What does this blood test mean? Thanks for any help

Your GP should refer you to a rheumatologist who will liase with the haematologist and obstetrician about your mangement and treatment. There is a patients support group for Lupus (Also known as SLE)and Hughes disease (named after Professor Graham Hughes who first described it as a separate condition). I can't do links, but as far as I remember when you google these conditions, the link to the support group is near the top of the list. They are extremely knowledgeable and produce lots of information, and there are local groups you can join.

I am not sure if you are quoting the tests correctly, but have just consulted my resident expert who says you should definitely be referred to a rheumatologist ASAP.
HTH

Have to go shopping now but will check back later in case you have another question.

Thankyou very much for that info, will google. I have an appointment with GP next week so will ask for referral. It was my follow up apt from the m/c that confused me with the obsetricion, I don't feel she actually read my notes, she seemed to think I had only had one test for blood clotting. She just said if you get pregnant again they will test again, not nessesarily otherwise.

My mum was diagnosed with lupus about 18 mths ago, after years of mis diagnoses. When in her twenties she had several miscarrages, which at the time doctors said were "just one of those things", but the rheumatologist has now confirmed it was probably down to lupus. The good news is that diagnoses or not, my mum had myself and my brother, so something went right eventually. Definetly get refered though!!

Very important to see rheumatologist before trying to conceive again. I am so, so sorry you lost your baby at 20 weeks, that must have been devastating, and you say you have had 2 other mcs? I am a bit shocked at the obstetrician TBH - It sounds as if she hasn't read your notes. As far as obstetric management goes, you should be managed in a specialist clinic by the obstetrician, the rheumatologist and haematologist. Your condition can be managed, but needs the right diagnosis and treatment.

jellybeans, My dh and I, by coincidence, both have Hughes (or Antiphospholipid) Syndrome. I can only emphasise what 3littlefrogs has said and urge you to get referred to a specialist rheumatologist. GPs (and obstetricians) do not usually have much knowledge of the condition. It is surprisingly common but very under- diagnosed.

Thankyou so much everyone, I will ask my GP for a referral next week and let you know xxx