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Anticardiolipin Antibodies and Pregnancy

6 posts on this thread and the last post was on February 29th, 2008 9:26 AM
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mary74 - Oct 19th, 2007 1:56 PM
 [Original Post]

Hi,
I was posting on the Lovenox and Pregnancy thread, and just got some news from my hematologist that I wanted to share:

I suffered a stroke 8 years ago, cause was unknown. They ran every test they could think of, all came back negative.

Now my DH and I are wanting to start a family, and I had to see a hematologist to check everything out and see what kind of risks my health history might pose. He ordered my blood test results from the time of my stroke, but wasn't able to get them so he had my blood drawn and re-ran all of the tests. He called me this week to say that everything came back normal, EXCEPT my Anticardiolipin Antibody level (of IgM only) was moderately high - 22.25. He wants to do another test in 8 weeks to confirm that it is high.

What the heck? Why would it be high now, and not when I had my stroke? This opens a whole new can of worms for me, and I'm freaked out. He said I'm at an increased risk for heart attack, stroke, and blood clots, and that it would explain my past stroke. He said diet and exercise will not change these levels of antibodies, so there's nothing I can really do about it. He put me on aspirin daily, and said I should wait to get pregnant until we know for sure what is going on with these antibodies.

Is there anyone out there with high IgM anticardiolipins? Pregnant? How did it go/how's it going? Any problems with clotting, heart attack, stroke -pregnant or not pregnant? Do your levels of anticardiolipin fluctuate over time?
Anything you want to tell me about this I'm all ears.

Thanks!
Mary

lyly14 - Oct 19th, 2007 8:55 PM

Hi Mary,

In the past I have been positive for antiphospholipids and anticardiolipins. I have never had any symptoms (clots, stroke etc), but was tested because of family history and similar autoimmune symptoms to my mother who has lupus. I now test negative for these antibodies except for one. However, I take a baby asprin daily and extra follic acid for a MTHFR gene mutation that also puts you at risk for the same things. From what I know about the anticardiolipins and antiphospholipids they can fluctuate and they recommend having them repeated. They will usually not diagnose antiphospholipid syndrome with one positive blood test. However, with your history of stroke I would have to say you probably are at risk. These antibodies not only put you at risk for heart attack or stroke but many complications with pregnancy. Miscarriage and stillborn rates are much higher in women with these antibodies. Also fetal growth may be restricted and it also puts you at risk for eclampsia (pregnancy induced hypertension). Many women with this are treated with lovenox and monitored frequently throughout pregnancy. You would be considered a high risk pregnancy and should be seen by a perinatologist or a high risk obgyn. If you are trying to get pregnant you should see a perinatologist for a consult prior to getting pregnant to make a plan for what type of treatments and monitoring you need before and during your pregnancy. I hope this helps.
-Lyly


mary74 - Oct 24th, 2007 12:46 PM

Thanks for your reply. I've seen two high risk OBs to talk to them about a pregnancy, they think I'd be fine on Lovenox and aspirin. However, I'm not sure I have the guts to get pregnant anymore after this cardiolipin news.
This just all seems odd to me - no anticardiolipin after the stroke, and some without any thrombotic event? I feel like this anticardiolipin thing is a death sentence. I don't want to have this. I don't want to have another stroke.


mirry - Oct 24th, 2007 4:14 PM

Hi Mary74:

I know exactly how you feel. Ten years ago I was diagnosed with Lupus and no symptoms with the exception of a high ANA. I'm 20 weeks pregnant now and still no symptoms, but my ANA is still high and although my cardiolipin is on the weak end the doctors are asking me to go on Lovenox 40 mgs and a baby aspirin a day. I've been taking the baby aspirin for a little over a month now and after todays visit with a high risk fetal medicine doctor , will go on on the Lovenox. I won't be under the category high risk though and both my OB and the fetal medicine doctor are saying that everything should go on to be quite normal by being on this therapy. Doctors aren't 100% sure all the time and they even told me this. Both my doctors are surprised that I haven't miscarried or infertile. Thus far I'm proof, and I know there are several others that have had a baby, and said they were happy they went on Lovenox. You'll figure it out. Just think if you don' try to get pregnant you may never know. Wish you luck!


mary74 - Oct 25th, 2007 4:03 PM

Yeah, I wonder if I have Lupus - I know there is a lupus antibody, I'm guessing they would have tested for that, too?
What did your doctors say about having a high level of anticardiolipin? I feel like I could have a heart attack, stroke, or clot whenever. That is no way to live. I'm so depressed about it. I've had a stroke, and it SUCKED. I left the hospital 8 years ago like nothing happened because they told me there was nothing wrong with me. Now this news brings it all back. I feel like a ticking time bomb.
Can I have a normal life span, no issues and still have this elevated level of anticardiolipin?


mary74 - Feb 28th, 2008 11:02 PM

Holy CRAP everybody!

All this worrying over the last several months for NOTHING!!!! AGH!!!!

Well, I have great news - I don't have antiphopholipid syndrome. I don't even have high levels of any anticardiolipin antibodies. I have no blood clotting issues at all. I got a second opinion at the Mayo Clinic in Minnesota and they set the record straight for me once again.

I knew things weren't making sense. They were so thorough with me when I had my stroke many years ago. They tested for everything and all came up fine. It has been determined that I have May Thurner Syndrome - an anomoly of the descending aorta which puts pressure on the vein it crosses underneath it, which can cause clots sometimes. With this news, they think I will be okay without any medication while pregnant. I have asked them several times if the weight of a fetus pressing on that anomoly (which is in the pelvis) will make it worse and cause a clot there, and they have assured me it won't be an issue.

This doctor I saw at Mayo (which specializes in coagulation disorders) told me that many doctors out there do not test properly for anticardiolipin antibodies - that the tests they use are terribly inaccurate. The hematologist that tested me got numbers in the 20s, and this doctor got a reading of 7, where anything under 10 is normal. ??? Gah, all that worrying for nada.

If any of you feel weird about your doctor, PLEASE do not hesitate to get a second opinion. If I hadn't trusted my gut and got a second opinion I would have gone on a bunch of medication while pregnant that wasn't necessary.

I am going to TTC over the next few months, I will still be considered high risk because of my health history and May Thurner, so will be checking back with you all over the next few months! Wish me some baby luck!



CLADesigns - Feb 29th, 2008 9:26 AM

Good Luck to you and I am glad that you got another opinion.


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