Looking for answers

I am just beginning the journey of searching for answers and am hoping for some advice. I am 27 years old and I have three healthy children. I have lost three to miscarriage, 2 early, and the most recent was my son at 17.5 weeks. I had early onset pre-eclampsia with two of the children, and with the other one my blood pressure was perfect until 37 weeks where it suddenly shot through the roof and the induced me that day. My children were also all very small. My first was 4.0 lbs full term, and the other 2 were 5lb 6oz. I have struggled with daily headaches for the past two years but I assumed the were tension headaches. Oh, and the baby I just lost had an extremely small placenta. The paperwork says it was 2x3 cm but I almost feel like that must be a mistake. I asked the ob that I saw in the ER to check for a clotting disorder and he ordered an antiphospholipid antibody panel and they only drew 2 vials of blood. The stories I have read on here talk about 8-10 vials. Did he only do one test? I'm wondering if this is negative, should I request more testing? I haven't noticed other symptoms but I don't want to ignore this if it may i fact be something.

4 Replies

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  • Hi there, and welcome, you have landed in the right place. If I were you I would go to the GP and ask them to do some tests, all of them this time, but do take the forms along to the hospital as they are time sensitive the samples if left lying around for collection.

    Here are the tests: hughes-syndrome.org/about-h...

    Also here is our list of specialists, for the UK, if you are not I will endeavour to help you further: hughes-syndrome.org/self-he...

    I suggest you do have a really good look around the whole of the charity website.

    MaryF

  • Can you ask for the names and numbers from the tests that were done in the ER? With that information you will be better armed to push for treatment or additional tests. Your symptoms sure sound APS-y to me. Good luck.

  • Thank you very much. I will make an appointment with my regular doctor and ask for the other tests. I need to call to ask for the name of the test they did, but I believe it was something like antiphospholipid antibody panel a b. The lady that drew blood said it included most types. I'll call today.

    Also, I live in Farmington, New Mexico. I know most people here go to a rheumatologist in Durango, Colorado. That may be my best shot. Also, Albuquerque is not to far away if you know of specialists there. Thank you again for your help!

  • Keep in mind that some of these levels do go up and down. Even if your tests are negative, ask your doctor to do them again in six months. ( or earlier if you are continuing to have symptoms )

    I was tested for times over the course of 2 years, and two were negative and two were positive. They originally thought the first test was a false positive because I had a current blood clot and was taking heparin . ( Mine is positive for the lupus anticoagulant)

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