Heterozygous MTHFR and Lovenox

Jen5782 · #1 June 29th, 2009, 10:40 AM

In the past year I have had 2 miscarriages. I have PCOS and Hyshimoto's Disease (thyroid) but neither seemed to be the cause. After several test, my doctor finally saw something that most likely caused the miscarriages. I have the Heterzygous MTHFR, which is a single mutation blood clot disorder. The way she discribed it to me is that I am a carrier for blood clots, so will never be affected by any that could harm me, but I do have tiny clots in my body that could harm a developing fetus. There are two ways to treat this next time I get pregnant: one would be to talk a baby aspirin everyday and that may work since I have the less dangerous of the two versions (homozygous MTHFR is the double mutation where both you and the baby are affected by clots), the second more aggresive option is to take Lovenox shots everyday for my whole pregnancy. I'd rather be safe than sorry so I'm leaning towards the shots. Has anyone ever had something similar? Right now, I just got my latest BFN and am waiting for AF to start.
Thanks for any feedback!

mdredmon1 · #2 June 29th, 2009, 10:56 AM

I had a stillbirth in April of 08 at 27 weeks. AFter extensive testing to see what happened I was diagnosed with the same thing. At first I was really freaked out about it but I talked to 2 different doctors and they said it is not a big deal. They told me that I needed to take baby aspirin but I also need to take additional folic acid. I am currently taking a prescription of folic acid along with my prenatal vitamin. I am currently ttc so hopefully all this will help because I can't go through another stillbirth. The crazy part is that I have a 9 year old son and this wasn't a problem before. I guess as you get older, I was 22 when I had him and 30 when I had her, things can show up.

farasha · #3 June 29th, 2009, 12:22 PM

Hi there! I'm sorry for your losses. I'm currently trying to make the same decision after two losses, but I am heterozygous for different clotting gene mutations. I polled the girls on this board, and most are recommending aspirin before trying Lovenox. It's a drug, it has side effects and it is expensive, and the Dr. tells me that one of the biggest risks is that if I were to miscarry again, I would loose a lot of blood. I haven't made up my mind yet about what to do.

I am definitely not a doctor or an expert, but I think I've heard that the MTHFR is a recessive mutation, which would mean that being heterozygous should not affect you or the baby. That said, I've definitely heard about women who are homozygous for the mutation taking Lovenox. I've also heard about the extra folic acid. That seems to be key, as defects in MTHFR usually result in defects in that metabolic pathway. I went to a seminar on that a few months ago, and it made a lot of sense. I've heard that's a common and successful treatment. Unfortunately, most of the research I've read and doctors I've talked to don't really have the evidence to support these mutations in the cause of miscarriages. But who knows...

I totally understand how frustrating all this is and I think the bottom line is that after weighing out your options, you need to do what is best for you. Good luck! I hope you'll stay around the board and get your BFP soon!

Jen5782 · #4 June 29th, 2009, 01:36 PM

Thank you, that helps a lot. I did read about the folic acid. My doctor was clear that the baby aspirin may work and I may not need the lovenox shots. It's the "may" that bothers me. She said I could try the baby aspirin and if I miscarry again we would try the shots next time. I'm thinking why not just do the shots if that will improve my chances. I have time to decide though. I wouldn't start until I got a BFP and then we can discuss some of the pro's and con's.
My husband and I have a blog about this whole experience, My Sperm Your Egg

starrsgirl · #5 June 29th, 2009, 05:49 PM

Hi! Just wanted to say I have the exact same thing. Currently I'm on baby aspirin and extra folic acid. I'm going to give it one more try with this stuff and see what happens. I have PCOS so I already take a lot of medicine a day. I'm very much a non-interventionist so I don't want to take anything more if I don't have too. But, if I have another loss, I will do the shots.

AliciaF · #6 June 29th, 2009, 06:18 PM

I am hetero MTHFR for C677T, but I also have APS, another clotting disorder.

I tried the BA and folic acid but had 3 chemical pregnancies. After starting Lovenox and Prometrium at 3dpo, I am currently 19w5d!

KDD · #7 June 29th, 2009, 08:29 PM

I'm sorry for your losses and wanted to wish you well with whatever you decide.

.:Shortcake:. · #8 June 30th, 2009, 04:01 AM

I'm so sorry for all your losses and I hope whatever you decide to do works for you and you all get your sticky babies!

Jen5782 · #9 June 30th, 2009, 06:50 AM

Thank you everyone for your responses, it is SO comforting to know there are others out there in the same boat. There is not a lot on this and I was beginning to think I was the only one.

Alicia - what dose of Lovenox do you take? Are the shots horrible or do you get used to them?

AliciaF · #10 June 30th, 2009, 10:11 AM

Quote:

Originally Posted by Jen5782

Thank you everyone for your responses, it is SO comforting to know there are others out there in the same boat. There is not a lot on this and I was beginning to think I was the only one.

Alicia - what dose of Lovenox do you take? Are the shots horrible or do you get used to them?

I am on 40mg once daily. I also take increased folic acid and a baby aspirin daily.

The shots aren't horrible. They do burn and sometimes they burn worse than other times but you do get used to it. I've had some bruising, but nothing like you'll see if you google it. You learn where you are more likely to bleed/bruise when you inject and which places are better.

It is an expensive drug though and very hard to get covered through insurance. I've been on it for almost 5 months now and just finally got it pre-auth'd correctly last Friday. My co-pay is $100 for 28 doses.

Without the insurance the cost is around $1,000/month.

rebeccabaltimore and more · #11 June 30th, 2009, 01:38 PM

I don't have any blood clotting disorders, but they do run in my family. My sister is heterozygous for MTHFR and has APA, her treatment plan when she starts TTC and gets pg is baby aspirin and extra folic acid.

You may also want to check out High Risk Pregnancy - JustMommies Message Boards, I know there are a number of girls there that are currently pregnant with blood clotting disorders, they may have some insight.