Compound heterzygous MTHFR? Anyone have success and how long?


#1

Hi everyone, I just found out I have compound heterozygous MTHFR and I’m wondering how long I should be on meds before I may conceive naturally or should I just do IVF. I would love to hear about some success stories of other women.

I have been TTC for over 2 years now. I have done 6 iui’s and I have done 5 months on clomid, 4 on femara before I found out I had this genetic problem. I also found out that I have high insulin levels. I’m not taking low dose asprin every day, metformin 1500mg and folgard. Hoping we can get a :bfp: soon! I have conceived naturally in 09 but had a mc at 9 weeks :wings: then had a chemical pregnancy in July 2011. I only started taking the new meds for about 6 weeks.


#2

Loveababy,

I am so sorry for your losses. Because you are compound heterozygous for the MTHFR polymorphism, you have a limited ability to break down synthetic folic acid (the type found in Folgard) to its active form, L-methylfolate. This puts you at risk for folate deficiency related pregnancy complications. You might want to ask your doctor about L-methylfolate. I work with NeevoDHA, a prenatal specifically indicated for women with the MTHFR mutation. It contains active L-methylfolate as an alternative to synthetic folic acid. L-methylfolate increases blood folate levels and decreases homocysteine levels more effectively than folic acid, which is particularly important in women with MTHFR. It is just something simple and safe you can do to be certain folate status is not an issue for you.

You are really smart to be taking all your supplements while trying to conceive. It is the most important time to make sure your folate levels are adequate. I think you are ahead of the game by being on them for 6 weeks and I am crossing my fingers for a bfp for you in the near future. Best of luck!

Holly


#3

[quote=loveababy]Hi everyone, I just found out I have compound heterozygous MTHFR and I’m wondering how long I should be on meds before I may conceive naturally or should I just do IVF. I would love to hear about some success stories of other women.

I have been TTC for over 2 years now. I have done 6 iui’s and I have done 5 months on clomid, 4 on femara before I found out I had this genetic problem. I also found out that I have high insulin levels. I’m not taking low dose asprin every day, metformin 1500mg and folgard. Hoping we can get a :bfp: soon! I have conceived naturally in 09 but had a mc at 9 weeks :wings: then had a chemical pregnancy in July 2011. I only started taking the new meds for about 6 weeks.[/quote]

I also deal with the MTHFR issue - I have a different form of it. I had spina bifida when I was in utero but it closed over before I was born so I am homozygous for the spina bifida portion (A1298C). I have to take Forbic - it’s a vitamin with elevated levels of folic acid, B6 and B12 vitamins to lower the chance of me passing the spina bifida on to my baby. I found out about this in October so it’s still new to me - but I’m just glad there’s something that I can take so I don’t pass this on - I was lucky that it covered up before I was born, otherwise my life would totally be different and if I were to pass it on to my baby they might not be so fortunate to have it close over before they’re born.

Just glad that modern medicine is looking at these abnormalities and is finding ways to help you get through them. It’d be nice if they couldn’t give you something to fix it totally.

Good luck!


#4

I have compound hetero too. I just started Neevo. It’s the form of folic acid that is already metabolized, which is what you need since MTHFR prevents your ability to process folic acid. It also has the necessary B vitamins you should be taking with MTHFR. For my next IVF, my RE plans to put me on heparin as an extra precaution. Best of luck!


#5

I am hetero for MTHFR. I take two mg of folic acid and a 1/2 of a folbic tab. (I got nervous about the amount of B6 so I take 1/2). I also am on a baby asprin and lovenox for blood thinning (I also have a transit form of the lupis anticogulant).

Best of luck


#6

Wow Thanks for the responses!
cmunksgard- I too just got the diagonosis in October! I hear there are different types but I don’t really know if any are better or worse to have.

Holly- Thanks for the info I will call my RE tomorrow and request the change! Its good to hear some positive information!

luv4rachela &Perseverance- Do you know if you are compound Hetero? And how long have you been ttc since you got on meds to correct this problem?


#7

I am compound hetero. All this is very new for me too. I just had a miscarriage in Oct, and wanted to figure out what went wrong before my next IVF in Feb. I started self medicating with the extra folic acid, B vitamins, and baby aspirin, but my RE said to take the Neevo and baby aspirin instead. He said the DNA mutations prevent me from being able to metabolize folate, so even if I overload it, I still can’t process it. I have met several women on this board who take Folgard, etc, and are successful, but I’m going to take the Neevo since it’s what my RE recommended. I just started it last Sunday. I have noticed that for the first time, I do not have any trace blood in my urine when I do a dipstick test (I work at a lab :slight_smile: )