# MTHFR knowledgable ladies, help me please!



## 2sweetboysmom (Aug 1, 2006)

Is a single copy gene mutation enough to be a problem...possible cause of my losses??? I am 99.99% sure I am pregnant again, I have all of my usual early symptoms. NEED to figure this out.

Some of you know my history, but here is a quick recap
1st marriage--Total of 5 early losses (prior to 6 weeks) assumed to be progesterone related, (LPD) and 3 live births (youngest was IUGR),
Second marriage--Married last fall, pregnant right away. On progesterone from the beginning. Son Michael stopped growing at 12 weeks, died at 14/15 weeks. Cytotec delivery/hemorrhage/D&C.
Pregnant again in May. On progesterone, took extra folic and baby asprin. Daughter, Providence stopped growing at 12 weeks, died at 14 weeks. Labor/cytotec/delivery/hemorrhage/D&C/transfusions.
Chromosome testing on both of us is fine. Thrombophilia panel for me shows only a single copy of gene mutation on C677T and no other problems.

From your research and experience, is one copy of this gene mutation enough to cause a problem? I don't have internet right now and 3 young boys at the library is fun but no good for researching thrombophilias. In the little work I have done it seem to have opinions in both directions.
HELP!!

Also is there a difference between folic acid and folate?


----------



## Emerging butterfly (May 7, 2009)

I wish I could answer this one for you...I know how you must be agonizing over the thought of losing all over again. ((HUG)) to you and just holding you close in my heart....keeping loving thoughts of a healthy vital baby bean in your arms.


----------



## claireb (Apr 7, 2009)

Quote:


Originally Posted by *2sweetboysmom* 
Is a single copy gene mutation enough to be a problem...possible cause of my losses???

In the little work I have done it seem to have opinions in both directions.
HELP!!

Also is there a difference between folic acid and folate?




First of all, I'm so sorry for your losses.







I have lost 3 babies just this year, and am probably losing another one of my twins now...I hear you.









I also have MTHFR, but I'm compound heterozygous, which is commonly considered to be the "second worst" form.

I did A LOT of research after my second m/c. Unfortunately, the information is VERY mixed and experts opinions are mixed as well.

Standard treatment for MTHFR is one tablet of Folgard (medicine that is Folic acid + B6 and B12) PER mutation (so for me, it was two tablets daily, and for you it would only be one) AND one baby aspirin daily. Some people insist that they have not had a successful pregnancy without the addition of Lovenox (injectable blood thinner).

Before I became pregnant again, I got on Folgard (twice daily for me given the two mutations) and baby aspirin. Upon positive pregnancy test, I insisted upon Lovenox because I didn't want to take any chances.

However, about two weeks ago, my perinatologist suggested strongly that I go off of the Lovenox and the baby aspirin, because I had two rather large internal blood clots in my uterus, and he was afraid that I'd lose this entire pregnancy if I started bleeding those clots out. I was nervous to go off of the blood thinner, of course, because of all of the anecdotal evidence I have read about that says that with compound MTHFR, pregnancy is more successful with Lovenox (of course, there is equal evidence saying it's not medically necessary, so...







)

But I decided that there was DEFINITELY a danger of the blood clots bleeding out and miscarrying and there was only SOMEWHAT of a danger of clotting if I stopped the thinners. So...now I'm JUST on two tablets of Folgard daily.

Now, for one copy of the mutation, many docs say that no treatment is necessary at all, especially if your homocysteine levels are normal (a hemotologist would have to check that). I tend towards caution, having lost so many babies, so if I were you, I'd treat it to be safe...

Your choices are:

No treatment.

Treatment using one tablet of Folgard (or Fabb is the generic version) daily.

Treatment using one tablet of Folgard (or Fabb) PLUS one baby aspirin daily.

Treatment using one tablet of Folgard (or Fabb) PLUS one baby aspirin PLUS one injection of Lovenox daily.

You will just have to search for a hemotologist or doctor that will prescribe Lovenox to you. I basically played the card of "I've lost so many babies already, and I want to do EVERYTHING I can to prevent losing this pregnancy too...so even if it doesn't help, it can't really hurt that much."

Of course, for me, when it DID start "hurting" (e.g. the blood clots and the danger of internal bleeding from too many blood thinners) I had a choice to make.

I'm sorry you're dealing with this too, since it's frustrating that there's so little really known about it.

I hope this helped.

Claire


----------



## claireb (Apr 7, 2009)

AND...congratulations!!! (With all of the info, I forgot to add that!!)


----------



## pianojazzgirl (Apr 6, 2006)

I have homozygous MTHFR mutation. When I was tested (non-pg) my homocysteine were normal and the dr didn't seem to think it had anything to do with my (then) 2 mcs. I got pg again after those mc's and decided, on my own, to take Folgard (well, non-prescription B6, B12 and folic acid in the same amounts as Folgard contains), as well as fish oil (natural blood-thinner) and garlic (natural blood-thinner). This is what I felt comfortable taking without the dr's go-ahead (he didn't think I needed to take anything). The B vitamins are water soluble and any excess will come out in your urine and will not pose any risk in the amounts given in Folgard (larger amounts of B6 could be risky but not that amount). Baby aspirin is definitely worth talking to your HCP about. I just didn't feel comfortable taking it on my own, thus the natural blood-thinners.

That pg ended well (my ds), but I got pg again recently and took those same supplements and had another mc. So, who knows if the supplements had anything to do with the successful pg, or if MTHFR even had anything to do with any of my mcs. It's all so confusing and there's a serious lack of knowledge in this area, IMO.

Sorry you are going through this mama. I know how (incredibly) stressful it can be to wonder what if anything you should or could be doing to "make" your pg successful, not even being sure what caused previous losses.

BTW Folgard is: 2 mg Folic Acid (which is the same as Folate), 500 mcg B12 and 25mg B6.

Congratulations on your pg, and good luck getting this all figured out!

p.s. you can certainly ask your HCP to have your homocysteine level and B vit levels checked. Perhaps an earlier-than-usual first prenatal visit would be a good idea in your case.


----------



## jtrt (Feb 25, 2009)

I am heterozygous for MTHFR A1298C and the MFM insisted it was of "no clinical significance." After three losses, I wanted to try everything possible. This time, I took Zervalx, progesterone, baby aspirin and heparin 5000u twice a day. Regardless of MTHFR status, this regimen seems to help other women with unexplained recurrent losses and I wanted to try it.

I am 28w3d with a healthy baby. I do not know-and will likely never know-why those three couldn't stay and this one did. But I will always know that I did everything I could to help. Aggressive empiric treatment for recurrent losses is not widely available. ACOG's official party line is "Just keep tryin'. You are likely to get a viable pregnancy eventually." Not nearly good enough....

Sending you positive vibes, momma.....

Amy


----------



## pianojazzgirl (Apr 6, 2006)

Quote:


Originally Posted by *jtrt* 
ACOG's official party line is "Just keep tryin'. You are likely to get a viable pregnancy eventually." Not nearly good enough....


----------



## 2sweetboysmom (Aug 1, 2006)

Pregnant, yes I was, and miscarrying already, only 4w&change.

While I am sad to have lost another one, I am so relieved to have lost so early. Later losses are so physically demanding for me. In light of loosing Michael and Providence this hardly feels like anything...but then I am still basically emotionally numb most days anyhow.

Thank you all for your help. I am going to take the suggested amounts of the B6, 9, and 12, and the fish oil too, and use the progesterone in my luteal phases. I don't want to feel caught off guard and unprepared for another pregnancy. I really believe there is _someone_ still waiting to join our family...hoping and praying I can carry a little one to term.


----------



## Amy&4girls (Oct 30, 2006)

I am so sorry.


----------



## expatmommy (Nov 7, 2006)




----------



## pianojazzgirl (Apr 6, 2006)

Oh mama, I am so sorry for your loss.


----------

