Has anyone been diagnosed with APS/Hughes?

[beebuzzer]

If so I would love to talk to you.
I am in the middle of tests (1 positive,1 borderline) and am waiting until February for another one. I am not on any anticoagulation at the moment so I feel a bit nervous until the next test. Tested positive for LA after DVT back in January 3 months after daughter was born.
I havent found that many people (including my Dr and my father, a former Doctor)have much of an understanding of this illness so would be interested if anyone else did.

I know there is a Hughes Syndrome Foundation, but sorry to say I have no experience myself. You're right though to mention the shocking lack of awareness - a former colleague of mine had two miscarriages and a stillbirth as a direct result of Hughes and no-one thought of it as a possibility - she had to pay privately for the tests as her doctor was dismissive (but was thankfully then able to get treatment and have her family). Good luck with the tests, I hope it goes well.

I was diagnosed with LA (on both tests 8 weeks apart) after a loss at 20 weeks. I went into preterm labour. That was my 4th loss but i had also had 3 full term pregnancies. With my last pregnancy i had to inject heparin and take aspirin and also have a cervical sticth (my loss could also be due to weak cervix) but doctors have never sent me to a specialist or told me to take blood thinners daily, they seemed to think it was a pregnancy only thing!! I don't know whether to insist on seeing a specialist or not. I do get severe migraines whch could be related maybe. Anyway sorry i haven't helped but I can understand your feelings of needing to find out about this, no-one seems to know!

jellybeans, my former colleague had a fairly scary family history (relatives suffering blood clots and strokes very young) which looking back could all be explained. I really don't want to scare you, but in your situation I would absolutely insist on speaking to a specialist just to be sure.

Hi Beebuzzer,

Like jellybeans, I was diagnosed with Hughes/APS after one late pregnancy loss/pre-term labour at 25 weeks. As far as I know, it only affects me during pregnancy.

I became pregnant again last year and I took aspirin and daily injections of heparin (under guidance of a great Obstetrician) which resulted in my gorgeous DD!

Migraines run in my family so not sure if this is related. I carried on with my meds until 6 weeks after the birth of my DD and then was told I could stop them. I don't take the contraceptive pill due to the fact that it can increase blood clotting.

Check out the Hughes Syndrome website as there is lots of helpful info on there.