MTHFR - Anyone Else Have This?

Updated on February 08, 2010
S.D. asks from Largo, FL
6 answers

EDITING: It won't let me put this on the bottom of my post, but I just wanted to say that I am already on extra Folic Acid (total 4mg) due to seizure meds. And thank everyone so far for their responses!

So, long story short, I have PCOS, was able to get pregnant on my own after Clomid failed to work, went back on BC after him, then decided to try for another only to have 2 miscarraiges last year. My OB/GYN did some labs and diagnosed me with MTHFR, and also some Factor V thing (don't really understand it yet). So, they told me to schedule an appt with a reproductive endocrinologist and take baby aspirin until I do get pregnant, then I'll have to do heparin injections (blood thinner) because apparently this can cause clots to form under the placenta. My miscarraiges were early ones, so this clotting issue was probably the cause. Oddly enough, they have said that it's something genetic so I had it before my son was born and just got very lucky that we had no pregnancy problems with him. He's apparently more of a miracle child then I ever thought :)

Anyway, the whole point to this is to see if anyone else has this or knows someone who did. I'm just curious to find out other stories of moms with this. I'm looking forward to seeing the RE so that I can get more answers. I'm glad we have a treatable diagnosis, but I still have so many questions........ Sorry this turned out long, just looking for advice and like I said other moms stories. Thanks!

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L.S.

answers from Grand Rapids on

I have both MTHFR and Factor V Leiden. I had my DD now 3 1/2 and had no problems. Then I had 2 m/c's and found out about these. I now have a 6 month old. I did not see a speciallist just my OB who happened to be a high risk ob. We did the baby aspirin (which you should do the rest of your life) and Lovenox shots daily until 35 weeks at which point she didn't feel the need to make me do the heparin (because my m/c's we also early) so I stopped those and just did te aspirin until 37 weeks and ten I was induced at 39 weeks. I did have ultrasounds every 4-6 weeks after 20 weeks just to make sure te baby was growing properly. I am not trying to scare you but give you some facts. But they did the ultrasounds because you can pass these disorders on to te baby and it's possible for the baby to form a clot and for no one to know it. ince te Lovenox/Heparin don't cross the placenta they do not help te baby only you. If you have any questions please feel free to ask. It is not an easy 9 months if you get pregnant but it will be so worth it in the end. I am even trying to talk my DH into having another..lol

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C.C.

answers from Melbourne on

MTHFR is a genetic variation in the folate cycle. It can cause your homocysteine levels to increase if you don't have enough folic acid/folate in your diet. I also have it and also did my masters thesis on it. As long as you have adequate folate intake, you should have nothing to worry about. The bigger issue is the Factor V Leiden. This is one of the most common genetic clotting disorders we know about. It can predispose people to deep vein thrombosis as well as clotting the placenta which will lead to miscarriage. That is what the heparin is for, to keep your blood thin.

I'm pregnant with my second child and have not had any miscarriages. While pregnant, I take an additional 3mg of folic acid a day. I have known other women with genetic clotting disorders that are on heparin the entire duration of their pregnancy and they do very well. Just some tushy bruises. Good luck with everything.

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M.B.

answers from Tampa on

I wanted to share my story as well.. I do not have factor V, I do have MTHFR though and this is how I found out...out of pure luck I got pregnant was told all my life I would never be able to..long story wont go into all those details. I miscarried...then 6 months later I got pregnant again..was totally shocked..by the 8th week I was on bed rest due to the swelling in my legs. Besides the bed rest all was great until 3 weeks after the baby was born. I had a horrible headache..I am 15 minutes from the hospital..I felt bad enough that I needed to go to the hospital. During that 15 minutes I was so confused all I knew was my first name. I had had a stroke. I almost died...had I not made the decision to leave immediately and go to the hospital I would have. They had to do emergency surgery on my brain to try to get the excess blood out of my brain (this was the first surgery at Morton Plant Hospital like this...this is mostly seen in the heart..not the brain). The swelling in my legs that caused the bed rest..they were DVT's. MTHFR is nothing to mess around with. I lost all of my memory and my speech. I had to go through months of therapy to regain that. I am still not where I used to be and still have issues thinking of words. My son and I learned things together and still do. I will be on blood thinners for the rest of my life. I also had a Green Field Filter installed to prevent clots from traveling up to my heart as another preventative. I was told to never consider having another child. I thank god daily for my life and don't take any moment for granted.

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L.F.

answers from Chicago on

I have it, but I am heterozygous....as is about 30% of the population. The only reason I was tested for it was because my sister gave birth to a stillborn baby girl at 39 weeks. Despite extensive testing of my sister and the autopsy on her daughter, there was never any cause found for her death. When my niece was born, she looked perfect in every way. She died in the womb a few days before my sister noticed that she had stopped kicking. My sister had some follow-up testing done by her OB and it was found that she is homogygous for MTHFR. They thought this may have been what killed her daughter. It was recommended that for her next pregnancy she take extra folic acid and be given blood thinner shots everyday.

My sister subsequently switched to an RE since she is now considered high risk due to the stillbirth. The RE explained to her that even though she has MTHFR, it is not the kind that causes blood clotting. (I'm not sure if this is Factor V. It is just too complicated for me to comprehend.) Her RE told her NOT to get the blood thinner shots and that MTHFR did not cause the death of her daughter.

I was pregnant with my second child when my niece was born, and because I had the testing done and was diagnosed with MTHFR, my OB insisted that I take baby aspririn and extra folic acid. I also got a lot of extra ultrasounds and had non-stress tests every week during the last month because I was considered high risk due to the diagnosis. I took the extra folic acid but didn't take the aspirin. My son was born healthy with no complications.

Sorry this is such a long post! My point to you is....make sure a specialist sees your test results so he can determine whether or not your MTHFR mutation is the one that causes blood clots. If it is not, then you do not want blood thinner shots or aspirin that may cause more harm than good. Regular OB practices are not very well informed about MTHFR. FYI, my sister had a healthy baby boy before her daughter was born, and she recently had another healthy baby boy.

Since your miscarriages were early, they may have just been random genetic mutations that had nothing to do with anything. (So sorry that you had to go through the two miscarriages, by the way.) I have known SO many people who got pregnant after they stopped takling Clomid! I hope you are able to meet with a specialist that you like, and I hope you are able to get pregnant soon. Take care!

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K.L.

answers from Washington DC on

A friend of mine has it. She is now 12 wks pregnant through IVF without any problems.

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S.B.

answers from Tampa on

I have MTHFR (Compound Hetero) You'll need to find out what kind you have to be sure you get the right treatment... I had 2 miscarriages (that I know of) & my OB did testing. She has the same Dx. I need Lovenox, extra folic & baby aspirin to stay pregnant. I have a happy healthy 2 1/2 year old thanks to my OB. She also gave me prednisone due to research she has done- but that is NOT common practice (but it worked :) so I plan to do it again. I am doing IVF this time (for genetic testing, not due to infertility or MTHFR) & have my transfer tomorrow or Mon & will be on the exact protocol.

My best advice is to do research, find out your type & the proper protocol (some types do not need blood thiinners) & then find an OB that agrees with your research. Some OB's do not treat w/ Lovenox or blood thinners because they do not believe in it. That is not their choice. I was 39 & had never maintained a pregnancy until I was on this protocol.

Other random thought- if you are ever bedridden for any period of time talk to your Dr about bloodthinners- They sent me to a hematologist at the Florida Cancer Institute & she was an amazing help in understanding this fairly rare mix.

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