Girls with MTHFR... come in please

countrymice06

I have a question that I hope you can answer.  So, I have recently been diagnosed as homozygous for MTHFR (c6777), and I am on Folgard and a baby aspirin.  Then, I got my homocysteine levels back, and they were normal.

What does this mean?  Does that mean that my body is getting folic acid or not?  If everything is normal, why do I have to take the baby aspirin?  Also, because I didn't find out until my seventh week, I have been very worried about whether my baby was getting enough folic acid to prevent neural tube defects.  I guess I just don't understand how you can be homozygous with normal levels of homocysteine.

 Thanks.  I know I sound like a raving maniac, but I can't talk to the doctor until Monday.

Gummybear

Hi there!

I am homozygous for MTHFR (c6777) as well, with normal homocysteine levels. I found out after my first m/c, before DD. I am also on Folgard and BA, and I also take Lovenox every day (did with my last successful pg. too).

I think that the only way to know if your body is metabolizing the extra FA is to have a test for a deficiency. https://www.webmd.com/diet/folic-acid

BUT, I am no MD so be sure to ask the Dr

You don't sound like a maniac, trust me.

ginleigh

I am homozygous MTHFR and hetero Factor V Leiden and have normal homocysteine levels.  I lost my first child to preeclampsia and HELLP syndrome, presumably related to the excessive clotting caused by these disorders.  This time around, I take a hefty dose of Lovenox twice a day to prevent those issues, and I am now 3 weeks "more pregnant" than the first time around, and probably 10 weeks "more pregnant" than when I showed the earliest symptoms the first time around.  So, I feel as if the Lovenox is working so far, though I still worry all the time.

And, I will probably scare you though I don't mean to. My son, we found out at 17 weeks, will be born with the neural tube defect Spina Bifida. I was, unfortunately, not taking more than the average dose of folic acid until about 9 weeks myself because I was advised it wasn't necessary - my dr. seemed to assume that I didn't need the extra until further along because it would be good to help with the clotting issues, but wasn't otherwise needed. Of course, there is no way to tell if that would have prevented the situation, or if these are the cards we would have been dealt regardless.  I wish I had been on more - because then, even if Spina Bifida was still in the picture, I would have known for sure it couldn't have been prevented with an extra couple of pills instead of always wondering.

I am telling you this because this is the reality of my situation, but it likely won't be yours so I hope you don't worry about it excessively - though I know that is easier said than done.  There is only the smallest chance of Spina Bifida in any case, and there is no reason to believe your child will face this.   

countrymice06

Thank you both for your responses, both of which were very helpful.  ginleigh, if you don't mind my asking, did you get an NT scan?  Are the doctors able to detect/suspect Spina Bifida at that time? 

I am worried, but more information actually helps me, I think.

countrymice06

Also, I wonder if I should ask about Lovenox as well.  I wonder if the baby aspirin is enough...

ginleigh

I did get an NT scan, which detected no issues whatsoever.  I got the integrated screen to go with the NT scan, which had two levels of bloodwork.  That came back abnormal, as a 1 in 4 chance of neural tube defects.  The day after my dr. got my blood work I was scheduled for an ultrasound anyway, so he waited until the ultrasound, and confirmed the Spina Bifida, to tell us.  We found out at 17 weeks.

ginleigh

Also, ask about the Lovenox and if you are not seeing a high risk, you should...at the very least for their opinion.  I know lovenox in fairly high doses was prescribed for me because of the significance of clots in my last pregnancy - pathology found dozens in my placenta after the loss of our firt baby.   

Gummybear

I ABOSULTELY think you should ask about the Lovenox and I wholeheartedly agree that if you aren't being treated as high-risk, you should! I was immediately referred to a peri. and had an u/s every 4 weeks to check for IUGR and adequate bloodflow etc. I was told I would, under no circumstances, be allowed to go past due, regardless of any levels. I was induced and ended up with a c/s. I stayed on the Lovenox until 6 w PP. This is VERY VERY important because after delivery, esp if you have a c/s, DVT and PE are a very real risk, even for women whom don't have clotting factors!

Regarding the Lovenox: I take the Lovenox even though everything is OK, because I want to be as careful as possible. My Dr.'s (OB, RE, peri. and hemo) all told me it won't hurt anything, so why not. But, it is rather a matter of medical opinion, when I was being seen for my DD at my OB practice, one Dr. would chew me out for being overzealous, another would be indifferent, and another would practically bow at my feet for being so proactive because she had seen some pretty terrible things with MTHFR.

Also, I think I had a discussion with my hemo. that homocysteine levels can shift dramatically during pg.

W&J'sMommy

I am homo for MTHFR with normal homosystine levels.  I have been assured by 3 different Hemotologists that, b/c my homosystine levels are always normal, daily aspirin (always, not just during pregnancy) and pre-natal vitamin are enough. 

I am on Lovenox now, but it is to treat the Lupus Anticoagulant that I also have.

This is an excellent site to explain the MTHFR/ homosystine levels importance.

https://www.fvleiden.org/ask/51.html

https://www.fvleiden.org/ask/

 

Dobie_Mama

W&J'sMommy:

I am homo for MTHFR with normal homosystine levels.  I have been assured by 3 different Hemotologists that, b/c my homosystine levels are always normal, daily aspirin (always, not just during pregnancy) and pre-natal vitamin are enough. 

This has been my experience, as well.  I am currently on daily baby aspirin & extra B6, B12, & FA.   

My homocysteine levels are being monitored during pregnancy.  If they become elevated, my hematologist will put me on Lovenox.

fit4ever1379

I am on Folgard, Neevo Prenatal and baby aspirin. I saw a Per and she thinks the BA will do the trick. My homo levels were also normal.

GL!