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Pregnancy successes with MTHFR, PAI-1 and NO Lovenox?

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Sadin2009 Posted: 11-10-2010 6:03 PM

I've been worrying about this again lately although thankfully my pregnancy seems to be progressing well. I am homozygous for the C677T mutation of MTHFR and heterozygous for PAI-1 (4g/5g). I lost my first pregnancy (suspect a subchorionic hematoma I developed early on) and experienced complications this time (early intrauterine bleed that my doctors attributed to Lovenox, which thankfully cleared up after 2 weeks strict bed rest, episodes of second trimester unexplained bright red spotting).

I am taking daily baby aspirin, prescription FolTabs (generic of FolGard), prescription prenatal vitamin and extra folic acid for the blood clotting stuff (also Synthroid for Hashimoto's thyroiditis and Vitamin D because my levels are low). I was reviewing some information (read: Googling) and am concerned about not being on Lovenox. I mean, I know why my doctors stopped it and certainly I wouldn't feel comfortable restarting it, especially not now at 31 weeks...but I keep reading about the dangers of the two bad copies of MTHFR I have and also that my hematologist said that PAI is actually the more dangerous one.

Anyway, I'm looking for success stories of women with blood clotting disordes and no Lovenox. ETA: How was your labor and delivery--any problems with clotting? Also, did you go back on Lovenox after delivering your babies? For how long? Any complications? 

Thanks for any help 

32 years old, EDD 01/12/11; first pregnancy ended in miscarriage at 6 weeks 5 days (subchorionic hematoma); Hashimoto's thyroiditis

Thyroid--175 mcg Synthroid daily

Homozygous for MTHFR mutation--2 copies of C677T, heterozygous for PAI-1 (4g/5g). Had to stop Lovenox injections at 5 weeks gestation due to intrauterine bleed, which thankfully cleared after 2 weeks strict bed rest; switched to daily low-dose (baby) aspirin, prescription prenatal vitamin (PreNate Elite), 2 tabs of generic of Folgard and 3 tablets of 800mcg folic acid (generic drugstore brand)

Acupuncture once a week for 3 months seems to have helped with luteal phase defect/ problem with corpus luteum

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AngieB replied on 11-10-2010 11:03 PM

You weren't tested for your clotting disorders within 6 weeks of either pregnancy, were you? Because pregnancy hormones can throw off the blood clotting tests results, but I've seen a lot of doctors make that mistake.

(Sorry, I don't have a lot of helpful experience to offer.)

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Sadin2009 replied on 11-11-2010 3:44 PM

AngieB--no, testing was done around 11 months after I lost my first baby, and that was a couple of months before Hubby and I successfully conceived our now-gestating Peanut.

Why do you ask?

32 years old, EDD 01/12/11; first pregnancy ended in miscarriage at 6 weeks 5 days (subchorionic hematoma); Hashimoto's thyroiditis

Thyroid--175 mcg Synthroid daily

Homozygous for MTHFR mutation--2 copies of C677T, heterozygous for PAI-1 (4g/5g). Had to stop Lovenox injections at 5 weeks gestation due to intrauterine bleed, which thankfully cleared after 2 weeks strict bed rest; switched to daily low-dose (baby) aspirin, prescription prenatal vitamin (PreNate Elite), 2 tabs of generic of Folgard and 3 tablets of 800mcg folic acid (generic drugstore brand)

Acupuncture once a week for 3 months seems to have helped with luteal phase defect/ problem with corpus luteum

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Posts 1,923
AngieB replied on 11-11-2010 4:43 PM

Just making sure! I've heard of several women who were told that they had a blood clotting disorder because they were tested while they were pregnant or newly postpartum (and hcg can definitely affect the results, so this is a big no-no), and then later found out they actually didn't have a clotting disorder. Just wanted to make sure that it wasn't a possibility for you.

I hope everything goes smoothly your last few weeks!

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Sadin2009 replied on 11-11-2010 5:13 PM

Oh, I see (had a feeling that's why you asked but figured I'd check anyway). Yeah, I definitely have these    :(  but hopefully everything will go smoothly. Thanks for the well wishes!

32 years old, EDD 01/12/11; first pregnancy ended in miscarriage at 6 weeks 5 days (subchorionic hematoma); Hashimoto's thyroiditis

Thyroid--175 mcg Synthroid daily

Homozygous for MTHFR mutation--2 copies of C677T, heterozygous for PAI-1 (4g/5g). Had to stop Lovenox injections at 5 weeks gestation due to intrauterine bleed, which thankfully cleared after 2 weeks strict bed rest; switched to daily low-dose (baby) aspirin, prescription prenatal vitamin (PreNate Elite), 2 tabs of generic of Folgard and 3 tablets of 800mcg folic acid (generic drugstore brand)

Acupuncture once a week for 3 months seems to have helped with luteal phase defect/ problem with corpus luteum

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JessieLynn03 replied on 11-12-2010 3:46 PM

Sadin, both of those clotting disorders are based on genetic mutations, so even if you had been tested while pregnant, the results still would have been the same. Some clotting disorder results can be messed up when done during pregnancy or too close to pregnancy though. Pregnancy naturally puts the body in a hypercoagulative state so tests of specific clotting proteins will be abnormal during pregnancy and shortly thereafter. I think these are the Protein C and Protein S deficiency tests if I remember correctly. 

I do not have MTHFR or PAI-1, but I am heterozygous for the Factor V Leiden mutation. I didn't know I had it until after I had my twins. I was on baby aspirin while TTC since I had a history of recurrent miscarriages. When I got pregnant with my twins through IVF, I stayed on the BA until the end of the first trimester. I was on no blood thinners until I developed a DVT and PE in the 3rd trimester. I think it was around 31 weeks in the pg that they were found. At that point, I did start a high dose of Lovenox twice a day to treat the clots and prevent new ones from forming. I had the clotting bloodwork done at that point. 

A few weeks before we found the clots, I went into pre-term labor an was hospitalized for a few days. When I was released I was put on light bed rest where I could get up to make food, use the bathroom, etc, but to try to limit activity as much as possible. I spent about a week at home on bed rest when I had to be hospitalized for a few days with the blood clots. Then about a week after I got home from that hospitalization, I had to be hospitalized again because my son had suspected IUGR. I was in the hospital for about a week when my water broke. It broke right before I was supposed to have my nightly dose of Lovenox. I had no issues with excessive bleeding during the labor, but I was not able to get an epidural until I was dilated 8.5 cm. That was the first point where my blood tested ok enough that the anesthesiologist would do one. That was over 24 hours since my last dose of Lovenox. Waiting that long for the epidural was pretty awful, but I had no plans to do a natural labor and was totally unprepared for the pain. 

In the end, I needed a c-section. Initially it was fine, but I had to resume a high dose of heparin immediately afterwards which caused some internal bleeding in the incision. That formed a hematoma which burst through my staples and bled everywhere. My incision had to remain open and packed with gauze for 6 weeks as it healed. That was the worst part. I did 6 months on Coumadin after the birth since I had the DVT and PE. I've been on no thinners since then, and no more clots. 

This might give you the flip side experience of going into labor while on Lovenox. Some doctors switch patients to heparin around 36 weeks because it can be reversed, but I delivered at 34 weeks so that was a moot point for me.  

If I remember correctly, MTHFR is usually not a concern for clotting unless your homocysteine levels rise and PAI-1 doesn't actually increase your tendency to clot just makes it that much harder for your body to break down a clot if it forms. I would think a BA would be sufficient for you without a history of clotting. I know it's got to be scary though. 

Jessie
Aidan, ASD and SPD dx
Addie, neurotypical toddler
SE Journal

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LPD33 replied on 11-12-2010 9:27 PM

I have PAI-1 (two counts), MTHFR (compound hetero), Factor V Leiden, and Factor II (Prothrombin).  I was told by my doctor that I didn't need blood thinners, but if it made me feel more comfortable, I could begin them at 12 weeks.  He told me if I had MTHFR only, I wouldn't need any blood thinners and they explained to me that PAI-1 isn't dangerous by itself, only when it is combined with other blood clotting disorders.  I took baby aspirin and extra folic acid and B12 and B6 for the first 12 weeks, and then added Lovenox.  I am actually glad I did add it in because I had issues with pre-e and HELLP and can't imagine what would have occurred if not for the Lovenox.  However, if I had only had PAI and MTHFR, I probably wouldn't have considered it.  I think you will be okay and if I had intrauterine bleeds, I would not consider going back on Lovenox. 

Good luck--these disorders are scary, but it is possible to have a perfectly normal pregnancy with them as long as you keep an eye on things.

Me (31) and Him (30), DS (2)

Our family is happy and complete Heart

Battling autism one day at a time.  And we're winning.

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