# Antiphospholipid syndrome questions/information?



## wilkers8 (Mar 22, 2004)

I posted this in my continous thread of my journey but since I know not as many people read that thread...I figured I would create a seperate one to get as many answers as possible.

I just got a call from my doctor. One of the bloodtests that the labs lost orignially my doctor had me retake a few weeks ago was to check a level which would indicate possible Antiphospholipid syndrome. My level was 61 and anything above 20 (for igm) is considered elavated. He said that I have to retake the test after June 22nd (6 weeks) to see if I get a second elavated level. I asked him if this was what caused Connor's death, he said he couldn't be sure (pathology couldn't confim) but this would be something he could at least highly monitor and help reduce reoccurance versus a cord accident. I told him that we were trying this month and would likely find out if we are pregnant around June 13th. I suddenly became terrified that this was something that had to be fixed before we got pregnant but he indicated that I would be getting heparin shots throughout the pregnancy (which helps thin my blood to balance clotting) if the second test turns out positive. I will now become obsessed with trying to read more about this. I'm afraid for me...I'm afraid for future pregnancies.

I didn't ask the doctor a ton of questions, mainly because until I get a second positive this is not definite. However, I hung up and suddenly became panic swept over me. I would normally call my friend, who is a doctor, but we're not really speaking these days. I would imagine that she would still want me to call but my pride just won't let me. I know stupid.

Does anyone have input on this?


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## SamuraiEarthMama (Dec 3, 2002)

this is a simple overview of the syndrome...

and this seems to be a very detailed, comprehensive look at the syndrome and its treatments.

(found 'em both via google)

it doesn't appear that it needs to be "fixed" before the pregnancy (or even that it could be)... the treatment, like your doctor said, is heparin shots. also, there seems to be a treatment involving aspirin. i'd check out more about deep vein thrombosis and work on those treatments, too (quitting smoking, changing diet, more exercise? i'm not sure).

i know that second url looks pretty daunting, but if you read it slowly and carefully, i bet you'll get a lot of your questions answered.

panic won't help! educate yourself, become the best advocate you can for your baby, and hang in there... with the proper treatment, IF you have this syndrome, it looks like you have a good chance for a happy outcome!

warmly, katje


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## Ms. Mom (Nov 18, 2001)

, I know it 'sounds' scarry. It's an antibody which thinks a pregnancy is a foriegn object in the body and therefore tries to attack it. This is why miscarriage and stillbirth rate is higher in those who test positive.

I have anticardiolipin antibodies which is very similar. I've had very positive results with Heprin, baby asprin and Progesterone suppositories.

You may want to ask your doctor if he feels it's beneficial to use the suppositories now. I used them from conseption on through the 14th week (along with the asprin). The Progesterone is a hormone that keeps the uterus optimal for implantation. I also used heprin injections.

It is very hard to detect these disorders as your hormone levles can change day to day.

Please keep us informed on how your doing and feel free to pm or email me if you









There's also a thread in Pregnancy after Loss discussing this that you may find helpful.


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## morgan's_mom (Aug 25, 2002)

I don't have it, but I have 2 friends who do. I know they are both active on a group called "Heparin Hunnies" on the tcoyf.com boards. You might find more information over there.


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## damongeau (Mar 5, 2004)

I dont have any scientific info for you, just a few words of support...

A good friend of mine went throught this...she just had a beautiful baby girl a couple weeks ago...I was lucky enough to be her doula. She had to have shots through the whole thing too. Its hard, and she hated the shots, but it can all work out .


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## JessicaS (Nov 18, 2001)

A positive thing from all of this is that you may have answers regarding your m/c and have a solution that may prevent future m/c. That is good news!

You'll probably have to be monitored more during your pregnancy and you will have to take extra good care of yourself. But having answers along with workable solutions is good.


















I know this is a really scary diagnoses..but it does have a silver lining.


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## ninafel (Apr 14, 2003)

oops, double post


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## ninafel (Apr 14, 2003)

I have a clotting disorder called Factor V Leiden. There is a very supportive board with good information on yahoo.....

http://health.groups.yahoo.com/group/FVL-PG/

The board is intended for women with FVL or other clotting issues. Some women have APS. Most women take baby aspirin and a form of heparin while pregnant. It's good to read about women having successful pregnancies who have suffered pregnancy losses--many have had multiple miscarriages or stillbirths due to their disorder and gone on to have healthy pregnancies.

Are you taking anything right now? Perhaps you might ask your doctor if there is anything you should be doing now to protect a potential pregnancy.

All the best,

Ninafel
3 early miscarriages in 2003.......currently ttc and 6 days dpo


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## whateverdidiwants (Jan 2, 2003)

I have antiphospholipid syndrome, had 3 first-trimester miscarriages before it was diagnosed. Using aspirin and twice daily injections of Lovenox (which is a low-molecular weight form of heparin) I gave birth to a very healthy girl in April 2002. One thing that the doctors might not tell you (or might not know) is that for the blood thinners to be MOST effective, you have to start them a few days after *conception* occurs, not after you get a positive pregnancy test. It can make a huge difference.

Because of APA, there was a high risk of IUGR so I had frequent u/s to make sure the baby was growing on schedule, and also had to see a hematologist monthly to monitor my bloodwork. It was a pain (literally, because the meds make you bruise really badly) but it was worth it.

Please feel free to PM me if you have any questions or want to talk.


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## doulamomvicki (Nov 4, 2003)

I have it and have dealt with ladies who also do. I too did baby asprin and heparin shots. I didn't have any problems except for the occasional nasty bruise. My MD has me take a baby asprin everyday still because APA increases risk of clots and stroke.


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## shannon0218 (Oct 10, 2003)

I've got it and am pregnant again now after 3 miscarriages. I'm on twice daily shots of heparin--and my belly is black and blue as well as baby aspirin which I've been on for 2 months now. Start baby aspirin now as that level is quite elevated, so even if the next one isn't so high, you may as well get a jump on it--baby aspirin has been shown most helpful 2 months before conception.
I too will be getting frequent U/S's to check growth and had cycle monitoring and IUI to conceive so there would be NO question of conception date. My last pregnancy, the baby measured 5 days behind with the first U/S but we kinda ignored it reasoning that it varies, in retrospect, the IUGR had already started.
Oh and I'm on progesterone suppositories as well.


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