Antiphospholipid Syndrome

How’s that for a sexy title?

First of all, thank you to everyone who threw some extra love my way after my last post. I truly needed it. This was a rough week, but your kind words helped my heart hurt a little less.

Second of all, I mentioned offhand in the last post that all of the blood tests for my recurrent miscarriage panel were normal. Well, apparently that’s not true.

Some backstory: I had few tests done in December, right after I found out the baby wouldn’t make it. One of these was a test for something called anticardiolipin antibodies. The short explanation is that these antibodies can cause blood clotting issues.

The anticardiolipin test came back “slightly elevated,” but my doctor said that could just be because I was still pregnant.

So I had the test repeated a few weeks later. It was still elevated. At that point, my doctor referred me to a hematologist for further testing. The nurse I spoke to told me that my doctor “wasn’t that concerned about it,” but wanted me to go as a precaution.

I saw the hematologist on the last day of January. He drew a bunch o’ blood, and a little over a week later, his nurse called and told me the labs were all normal.

Apparently she was just kidding about that, because the evening after I wrote my last post, the hematologist himself called and left me a voicemail. It said:

“All of your labs were normal except for the anticardiolipin antibody, which was high. This is part of Antiphospholipid Antibody syndrome. I think you should go ahead and take baby aspirin with low-dose Lovenox the next time you get pregnant. Nothing to worry about—this just helps us plan better for the next time.”

He of course was not in the office on Friday, so I can’t talk to him until Monday. And my own doctor didn’t have the report yet, so I couldn’t talk to her about it either.

So right now I am just trying to do some research to figure out what the heck this all means. Here’s a definition below from the Mayo Clinic, in case, like me, you’ve never heard of this syndrome before:

“Antiphospholipid syndrome occurs when your immune system mistakenly attacks some of the normal proteins in your blood. Antiphospholipid syndrome can cause blood clots to form within your arteries or veins. It can also cause pregnancy complications, such as miscarriage and stillbirth.”

This condition is often treated with blood thinners, which is what the hematologist recommended in his message.

My actual number on the last test was 96. Apparently anything below 13 is normal. Anything above 80 is strongly positive. I don’t know what my numbers were on the two draws before this one, but I find it weird that they were only “slightly elevated” and my doctor was “not that concerned,” when this one was so clearly high.

Meh. I’ve got more questions than answers at this point.

If anyone has this syndrome or has any information about it, I am all ears! My friend over at Spirit Baby Come Home sent me some helpful links, but most of the other stuff I’m finding online is just broad overviews.

I don’t want to get too ahead of myself before I know more, but could this be the reason for my miscarriages? Could this even be the reason for our infertility? Some of the things I’ve read said that this syndrome messes with implantation, so in that way it can cause infertility.

Could this really have been our problem all along?

47 thoughts on “Antiphospholipid Syndrome

  1. I didn’t get to comment on your last post but I was planning to come back on here and comment. I have MTHFR and another clotting factor (can’t remember which one – might be this). I am on Lovenox and baby aspirin for my entire pregnancy and I am always on baby aspirin regardless. (I do switch from Lovenox to Heparin in the last weeks of pregnancy as it is safer at the end to use Heparin). My clotting issues DID cause implantation failure in my case. I also had a VERY hard time getting a DR to take me seriously and allow me to continue treatment in my pregnancy. Even in my second pregnancy, AFTER it was already proven that I needed Lovenox, my OB tried to take me off of it. It is just VERY very hard to find a DR who understands and treats clotting issues in pregnancy. I’m glad you are seeing a hematologist. I am also glad that they recommended treatment and that you are able to get that taken care of. It very well may have been the cause of your infertility as well as the miscarriages. I wish you all the best moving forward and for a healthy, happy pregnancy. 🙂

    1. Thank you so much for sharing your experiences! That gives me hope to hear that not only was clotting a problem for you, but also to know that the problems was essentially solved and now you are successfully pregnant.

      The extent that we have to be self advocates on this journey is annoying. Sometimes it make me feel like not only am I fighting with infertility, but I’m also fighting with my doctors as well. It’s exhausting. Due to record transfer annoyances, I STILL haven’t talked to my RE about this yet, but if she doesn’t take it seriously I’m fully prepared to switch doctors again…which I really don’t want to do because I love my clinic.

      1. I definitely hear you on the self advocating being exhausting! You may be able to convince your RE to let you try Lovenox and low dose aspirin even if she doesn’t really believe it’s a big deal. My RE wasn’t fully sold on it being an issue but he was still willing to treat me were as my first RE refused to even check me for clotting issues even though I suspected they might be present. That was my main reason for switching REs.

        I hope you are able to get it all treated properly and without having to put up a fight.

  2. I hope you get answers soon. I imagine it is scary to be in limbo but potentially could be a relief to have an answer and one that sounds pretty treatable. Keep us posted. Xo

    1. Thanks, Mamajo. I agree that this could be a good thing. I talked to the hematologist earlier this week, but haven’t spoken with my RE yet. i’m really anxious to talk to her and see if she’s on board with this.

  3. I have a friend/acquaintance who had recurring miscarriages and I recall that she started taking baby aspirin during the early weeks. She now has two little girls 🙂 I can connect you with her if you want. I’m not sure if she had the same thing, but it definitely makes me wonder!

    1. Hi, Jess! That’s good to hear that your friend went on to have two girls! I may take you up on your offer to connect with her if I still have questions after I talk to my doctor (which still hasn’t happened yet, ugh). Xo.

  4. Argh, I really wish FS’ would do testing like this before people embark on IVF. I was only tested for blood clots after our 4th failed IVF cycle, and it was shown that I had a ‘blood clotting factor’ although they didn’t tell me exactly what it was (I am going to email to ask). I was put on Clexane (similar to Lovenox) and when I was on that I had researched and read sooo many positive stories regarding prevention of miscarriages. My FS also said that he has had a lot of success with this type of therapy for women with repeat ivf failure and miscarriage. It is great that they have found at least ‘something’ to explain possibly why. Have your Natural Killer Cells been tested by any chance?

    1. Thanks for sharing! At what point in your cycle were you put on Clexane? The hematologist said I should be on it as soon as I get a positive test, but I’m thinking earlier makes more sense if it can effect implantation.

      I haven’t been tested for natural killer cells! It seems like most practices near me don’t get too much into the immunology stuff, although I wish they did. Have you been tested for them?

      1. They put me on them on day of embryo transfer. And I was on steroids from the day of egg pick up so 5 days before transfer (I’ve researched this since and they say that steroids should start a few weeks before transfer possibly cycle day 1 to fully dampen your immune system). No clinics around me really test for them I have had to find someone in Sydney (about 5/6 hrs away from me) and I will be getting tested when I consult with him. If you could convince your doctor or find a doctor that could do a test it could help, but even If you manage to get on some steroids (this is to treat killer cells) and lovenox it could definitely help. I really hope it helps, I can’t imagine why it couldn’t for you particularly since you have had previous pregnancies before.

  5. I think it’s definitely a good thing that something has been found and that you have a doctor who is taking it seriously and suggesting treatment for next time round. Hopefully this could be the thing which helps you achieve a healthy pregnancy next time round.

    It’s always worrying, because you think that maybe it’s something else and not just that which is causing the problem, but in my experience you just have to trust your instincts and push for the right tests and treatment to help you out. Hopefully once you have a proper chat with the doctor you’ll have some more answers too and it sounds like lots of women on here have experience with this which is great.

    I think just educate yourself and push for what you need. Really hoping that this is all you need for next time round 🙂 xx

    1. Thanks! I definitely think it could be a good thing. And you are right, I’m always going to wonder if it’s something else in addition to this, but I’m going to try and keep those worries under wraps…for now. I think if I had another loss I would seek out a reproductive immunologist, but i don’t think I’m ready for that yet, as there are none near me, or ones within driving distance that take my insurance. I’m praying this is it, though, and I don’t ever have to think about this crap again!

      That said, if I talk to my fertility specialist (which still hasn’t happened yet) and she’s not on board with the blood thinners, I’m fully prepared to put up a fight or switch practices if need be. I hope I don’t have to do either, though, because that just sounds exhausting.

      Thanks for your support!

      1. Absolutely, that’s the one thing I’ve learned with all of this is that you have to trust your instincts and fight for what you think will help. If this is all you need then that’s amazing, it’s a real breakthrough and hopefully next time will be smooth sailing, I really hope so! Xx

  6. My doctors told me that the next time I’m pregnant, at the very least, I would be on a low dose aspirin. In my area, this is a normal procedure for women who have had multiple miscarriages (either three early ones, or a late one or a mixture of both like me). I haven’t heard of this condition, though, so I don’t know if it’s the same.

    1. That is very interesting that it is standard procedure in your area. It seems like the practices near me are veery conservative. I hope blood thinners are the answer for both you and me!

  7. This sounds like wonderful bad news. I hope this week brings you clarity and a way forward. I’d imagine it would be fantastic to put a name to what you’re fighting, and with a supportive specialist in your corner too – brilliant! xx

    1. Ha, that is a great way to look at it — wonderful bad news! Love it! Although I did manage to talk to the hematologist, I still haven’t connected with my fertility specialist. I’m really anxious to hear what she has to say and to hopefully get a plan in place!

  8. Very hopeful for you that this is the answer you’ve been looking for. I was on Lovenox and baby aspirin for both my pregnancies. Thinking good thoughts for you….

    1. Thanks, Lisa! i didn’t know you were on blood thinners. Did you have a clotting disorder or was it for another reason. Regardless, I’m glad they worked for you! I hope I have the same the good luck with them.

  9. Wow weird about the inconsistent messages about your results from the Drs office. I don’t know anything about this at all but I do take low dose aspirin. My specialist recommended it as apparently it does help with lining and implantation. My lining was def jucier on my last IVF cycle too. Hoping you get your answers soon! At least if this is an issue it is one that you can do something about. That is the best news!

    1. Right? Why does it seem like it’s so hard for a doctor’s office to have their shit together?! To add more fun to the situation, I STILL haven’t been able to talk to my RE about all of this because apparently it’s an impossible task to send and receive a complete fax. Finally yesterday I got ahold of the damn results myself and faxed them over. So my my doctor should now have everything she needs. I’m hoping to get a call from her on Monday because I just want a plan. And if she’s not on board with the blood thinners, then I’ll have to start the long process of possibly finding another practice. Blahhhh. But anyway, I really do hope this is the answer! I’m glad to hear that you had good results with the baby aspirin.

  10. Ugh, as frustrating as it is to do the “what ifs,” it’s kind of nice to have a possible answer that is fairly easy to “fix” in the future. I so hope that this makes all the difference for you!

  11. I know it’s horrible to find something wrong, but it is also really good that they have found this. I read about it before I was tested two years ago, wondering if it was my issue. Baby aspirin has been shown to improve pregnancy outcomes, so it could be the key to you getting through this. I know it’s SO awful that they didn’t test for this before (I felt like that about my celiac disease – maybe I wouldn’t have lost all those pregnancies before I turned 40 and got too old!), but we can’t turn the clock back, only head forward armed with new information and hope in our hearts. xxx

    1. You are right — sadly, we can’t turn back the clock, so onward we go. I really do hope that this is it and that I can move forward with hope. What kind of tests did you get to discover your celiac? I’ve wondered for years if I have celiac or a gluten sensitivity. About a year ago, I gave up gluten because I was tired of feeling like crap. I still occasionally have some in small quantities, though, like in soy sauce. I’d be curious to see if I truly do have a sensitivity to gluten or if it’s all in my head!

      1. I had a blood test after I did a home test that was faintly positive. In the UK they like to follow it up with a gut biopsy, but you have to continue eating gluten (as soon as you stop, your gut starts to repair, so the test can give a false negative). However, there was a wait of 6+ weeks and I was so ill and unhappy – and of course the link with miscarriage – that I stopped without a “formal” diagnosis and went immediately 100% gluten free. I’ve never looked back to be honest. I just wish, wish, wish I’d known sooner (found out 6 weeks after a loss at 11.5 weeks and the baby was perfect – will always wonder if it could have been different). If you have been low/zero gluten for a while you will probably not be producing the antibodies that they test for. The only way to know for sure is to go back on a full-gluten diet and I think it needs to be for quite some time – something I’d never be prepared to do. I think even if you’re not coeliac, many people’s bodies really struggle with gluten, so staying away when ttc is no bad thing.

  12. I’ve since learned that more proactive docs treat aPL Syndrome with both LMWH (Lovenox or its generic variations) *and* Prednisone as well as the low-dose ASA. I have asked for more information from the great gals at RISKIT but so far nothing more I can pass on but this. The story as far as most Western Medicine goes is that aPL Syndrome should be responsible for second trimester losses. Dr. Braverman however would tell you in a flash that this finding – and your high numbers relatively speaking – could be indicative of other immune issues that warrant investigation and possible treatment and monitoring. I don’t like to push that unless there is reason to believe immune issues could be at play and some women have no issues other than the elevated aPL which is successfully treated by blood thinners and sometimes steroids (prophylactically – without comprehensive immune testing). Something to think about asking the hematologist and or your doctor when you do get to speak with them at last perhaps? As I said privately I will also happily ask my Dr if/when you have more questions or would like his thoughts after you get some of your initial questions answered. Personally I am inclined to believe that where clotting is a potential issue implantation and proper vascularization during placental development can be impaired or even prevented. I’m no MD but that’s my gut feeling on this. Sending you so much love, support and peaceful thoughts this week. This stuff is never easy. I’m sorry you’re hurting, my friend.

    1. Thanks for all of this! I talked to the hematologist on Monday. He said that you need either three early losses or one later loss to be officially diagnosed with aPL. Since I’ve had two early losses he can’t technically diagnose me with aPL, but since my number was so high he wants to treat me as if I have it. So that is good. I asked him if I needed any further immunology testing and he said no, but I’m definitely doing to as my RE as well. Due to people’s inability to fax and receive records, I STILL haven’t talked to my RE about any of this. I’m very anxious to talk to her and get this sorted out. I’m hoping she’s on board with the hematologist’s recommendation, but if not, I guess I’ll have to switch practices again, which I really don’t want to do. I will keep you posted. And thanks again for finding information for me!

      1. I find those rules around diagnosis so frustrating even though I get the rationale generally behind them. I am glad your hematologist is being proactive about it. I hope your RE is receptive too.

  13. I do not have any information for you but I am thinking that if this is what has caused mc and indeed fertility issues it is something that can easily be resolved! My siblings have a blood clotting disorder called Factor 5 Leiden and have had miscarriages, I brought this up with the consultant I saw following mc and he did not think I needed to be tested! (nhs are so cost driven). When I see the fertility specialist again I am going to mention it as I have read they could be a link. I think before ivf we should be tested for blood clotting disorders, but it is not something that is routine. I hope you do get answers and hopefully this is something that will allow you to move forward. x

    1. I agree, everyone should be tested for this stuff before IVF! The tests are so easy there should be no reason not to. And I definitely, definitely think you should be tested for Factor 5 with your family history! That’s preposterous that they wouldn’t test you, It makes me mad just thinking about it!

  14. Wow, I can’t believe the kept telling you the results were normal and no big deal. Antiphospholipid syndrome is one of THE major preventable causes of pregnancy loss! As much as I ache for your terrible losses, in a way it’s good news that they’ve found a problem that has a clear treatment.

    I’ll be going on Lovenox for my next pregnancy too, thanks to Factor V Leiden and clotting found on the autopsy after our 4.5-month pregnancy loss. I’ll be interested to hear what it’s like for you. Wishing you good news soon!

    1. Thanks for stopping by! I’m also sorry to hear about your recent loss. Losses are just devastating.

      I know, I really do find it so weird that there was a seeming lack of concern about the results. I still haven’t talked to my RE about this in person so hopefully I can get some clarity on what the deal was. I’m keeping my fingers crossed that the blood thinners do the trick for both of us! I’ll be following along to see how it all goes for you.

  15. My niece has this. She lost a set of twins to miscarriage and a baby boy very late in the pregnancy to this. She has since managed to have a healthy baby, but it was hard getting anyone to listen to her that something was wrong because doctors in our area don’t start calling it recurrent pregnancy loss until the loss of at least three pregnancies. The twins were viewed as one pregnancy, of course.

    She had constant monitoring and lovenox/heparin throughout her last pregnancy.

    1. Thanks for sharing about your niece! I’m glad that she has since had a successful pregnancy. It’s infuriating that the rule is three miscarriages. ONE miscarriage is plenty, thank you very much. And you’d think that since one of her losses was very late that they would have immediately taken it seriously. Ugh — seemingly arbitrary medical practices make my blood boil.

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