Antiphospholipid Antibody Syndrome - blood clotting?

40momma · June 2018

I've just recently had extra blood tests done and first tests have shown positive for anticardiolipin and antiphospholipid, Dr wants me to get tested again in 6 weeks. Now I'm googling like crazy and Dr Google basically tells me I'm going to die, which I know likely isn't the case. Has anyone else been diagnosed with APS? Dr said baby aspirin and heparin can help outlook on future pregnancies but of course it's not a 100% 'cure'.

Mack2342 · June 2018

I’m sorry for the diagnosis. I have no info on that. Hopefully though with a diagnosis that can treat and you can have successful pregnancy

tosh24 · June 2018

***lurking*** I'm sorry you are stressing about the diagnosis. I'm hopeful that it is your answer, though! I have seen plenty of women with clotting issues on these boards go on to have successful pregnancies once they have the proper treatment. My RE never gave me a RPL panel (I had to sneak around to another doctor to have it done) because she said there wasn't enough evidence to support that it was actually an issue, EXCEPT for APA. FX this information leads you to your THB!

char245 · June 2018

@40momma ugh I’m sorry doctor google is scaring you! But I’m glad you have some answers! I’m sure your doctor would have been more concerned and done something immediately if the stories you are reading on google are correct. FX that this is the answer you needed to go on to have a healthy pregnancy!!

40momma · June 2018

Thanks ladies. I'm a bag of mixed emotions. It's nice to have a bit of an answer and maybe a bit of hope. But it's also scary to know that there is something medically wrong with me that would cause miscarriages. I've found a couple of good websites that have given me a bit more info and clarity. Essentially APS can cause tiny blood clots that block the blood supply to the placenta. Depending on your severity of it, chances are 30% for a successful pregnancy without treatment and 70% with treatment. I'll take those odds for now.

obsessedwithoranges · June 2018

@40momma I have been going through the same thing this week. I had a missed miscarriage at 16 weeks. The pathology results showed "increased perivillous fibrin deposition" all over my placenta. This was enough for them to test me for APS, thrombophilia, etc. My test results came back negative, but I have been referred to a high risk OB. I think the treatment is generally aspirin and blood thinners. I'm really scared - waiting for my appointment with the high risk OB next week. It's hard to find out that not only did I lose the baby but potentially my body caused it.

40momma · June 2018

@obsessedwithoranges I'm sorry you are going through this as well. It's difficult to not blame ourselves when miscarriages happen. It's devastating to know that our bodies aren't working the way they should be. But hopefully you and I can both find some answers that can help us for future pregnancies. After a few days of contemplation I've come to realize that I feel better knowing something that can potentially be treated may have caused my last 3 miscarriages. Previously when I had no idea why they were happening, I didn't have much hope that I could go on to have a successful one. Now that I know what may have been the culprit, I feel more optimistic

MelissaMay82 · June 2018

@40momma That is so scary but at least you now know what is wrong. And on a positive note, at least there is treatment that increases of a successful pregnancy.

honeybeebub · June 2018

@40momma **Lurking** I had a lot of back and forth regarding APS and like you freaked out that I would have a clot and die at any second. I had a few tests: a low positive, then a negative at a different lab, and then an indeterminate level. Do you know how positive it was? The test is not entirely clear and can throw false positives based on things like illness or slight infections. I've also heard if you have any autoimmune disease that this can also throw the numbers. So it's really not an exact science (and actually I believe they won't formally diagnose you with it until you've had an actual event). Moral of my story was they put me on baby aspirin because there really was no harm in taking it. Feel free to reach out to me if you have any questions, I remember how scary it was being told this.

obsessedwithoranges · June 2018

@40momma Agree - it’s good to have answers and That there is a tangible treatment that will potentially help you. I’m hoping all you need is a baby aspirin and you’re good to go!

I have my high risk appt tomorrow and am also hoping that that’s all I need too

mamakate1616 · June 2018

Lurker here too. My panel came back with a protein s deficiency and I was referred to a hematologist for further testing. I didn’t test positive for APS or any of the other know disorders, but strangely my protein s level went down from my first panel which was unexpected (and unexplained). My doctor said it was likely there are other disorders that haven’t been discovered yet, similar but different from APS and is treating me accordingly - lovenox injections daily once I get a BFP. Like you mentioned research shows it takes the chances of a successful pregnancy from ~30% to ~85%, which is huge when you’ve had back to back MCs. Terrified of the shots but so hopeful they work when the time comes.

Edited to add - he also said these conditions were extremely rare and inherited - do you have any family history of clotting issues? When I told him I didn’t he relaxed immensely & added that lovenox/heparin is commonly presecribed for unknown cause RPL because it “doesn’t hurt and might help”

40momma · June 2018

@honeybeebub and @mamakate23 I don't have the numbers back but I was told it was a low positive. I have to go back for more tests in a few more weeks. I have 2 spots of vericose veins that I've had since a child so when I mentioned that to the dr they felt that was definitely a symptom but I don't have any family history of it, that I know of.

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