Testing after miscarriages

Hello

Does anybody know when it became standard to test for Hughes / antiphospholipid after recurrent miscarriages?

I've requested a copy of my medical notes from 2001 when I had numerous blood tests after my losses but nobody said anything was positive. I would like to see if I've ever been tested for Hughes before though.

Thanks

Kelly

18 Replies

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  • I don't think it is standard to be tested I could be wrong though x

  • It is standard to test after 3 miscarriages. We think this is wrong and intend to campaign to allow women to be tested after one miscarriage.

  • I totally agree with this, they don't take into consideration the emotional trauma having a loss causes. It's not right to let somebody go through such an horrific experience unnecessarily x

  • Well I'll see if I was tested in 2001 but was never told. I know the results could still show negative even if I was tested but I just need to know.

    Completely agree on testing sooner. I've lost so much and been through so many traumatic pregnancy issues, I hope nobody else has to go through this.

  • Big hugs to u. Sending u lots of love.

  • I had a stillbirth baby in 1987, Aps wasnt known then. But I had a stroke in 2000 & 2003, I wasnt diagnosed until 2006, Prof Hunt went back through all my medical notes, she established that I had acquired APS between the age if 18 - 25 years old. I was clear at 18, but had tested positive at 25 (1987). Dont know what tests were done! Just excepted results.

    Apparently I had the tests done after my strokes in 2000 & 2003, always came back positive but the neurolorist never followed thru.....

    I never took up on any of this was just pleased I finally got diagnosis.

  • I'm sorry about your baby.

    I just need to know to help me move forward. I had three miscarriages, an iugr baby who was delivered at 29 weeks due to placental failure who died in special care aged 6 weeks, 2 normal pregnancies on aspirin and a concealed placental abruption! It wasn't until 5 years after my last pregnancy that I had TIAs and a spinal clot that was diagnosed after damage was caused.

    I just need all the pieces to fit x

  • Totally understand-we are all so unique in our own health. I am so extremely lucky for some unknown reason but to my fortune I had 2 full term babies. The last one was born with no immune system - 5 years in hospital but now now 26 and ok.

    I think our desease is still so unknown but together progress is totally a learning curve but we are getting there!.

  • I had 3 miscarriages in 1994-1996 then was referred to a high risk obstetrician in Chicago, who prescribed aspirin and heparin shots twice a day for the first 4 months only . It worked and I had my first baby via c-section in 1997. Subsequently told I didn't need aspirin and heparin by my regular OB. Then had 2 more miscarriages. So put myself (husband a doctor) on heparin and aspirin again had a full term delivery but had some major complications following the c-section birth of my second in 2000 with a blood clot in my pelvic vein, infection, and ileus 3 weeks post partum. It was then that they officially tested me , found I tested positive for all three antibodies, was given Coumadin for 6 mos, but never diagnosed and treated for Hughes until just 2 years ago.

  • I'm sorry to read you e suffered a lot as well x

  • Criminal

  • It is pathetic that so many have to go through this☹️

  • So pathetic, so frustrating

  • As my Rheumatologist told me, while laying in the hospital with a large clot in my left leg......

    You have to be in a flare up for the bloodwork to really show the high antibodies, sedimentation rate, etc that would allow the doctors to diagnose you....

    Previous history helps, but there is nothing like a current crisis to drive the decision making.m

  • Hi Kelly,

    I wish you the very best of luck in your mission. Do you know what antibodies you test positive for?

    When I went through this process I looked at all results and highlighted anything that was out of range and then began researching to join the dots for myself, as many gps have no clue and can't answer your questions.

    Good luck again.

  • Thank you xx Yes I am positive for lupus anticoagulant. I've spent the last few years searching for answers so I wi t give up, nearly at the end in piecing things together- and I will get there!

    Thank you

  • Good on you! Be a dog with and bone and show those medics how it's done ;-)

  • I intend to! I was discharged and dismissed by 4 neurologists and finally number 5 diagnosed my spinal stroke!!! I'll show them they're not always right and hopefully teach them about Hughes / APS along the way! X

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