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Talk to me about your MTHFR protocol...

post #1 of 17
Thread Starter 
I'm compound heterozygous (A&C) and am having my first successful (so far ) pregnancy. I am on 81mg of aspirin daily along with Metanx (B12) with my food based prenatal. I feel great and baby girl is doing well.

I have had my research feelers out all over the place because the backup OB my midwife uses said I would need to stop! (ack!) the baby aspirin at the beginning of the 3rd trimester due to babe needing to transition from placental breathing to air and being unable to do so if I continue on the aspirin. I'm nervous. What I'm doing is working! The researcher who I had looking at articles/research on this didn't come up with anything but one of their maternity authors responded that MTHFR wasn't an issue maybe I have APA (which I don't!) and that baby aspirin wouldn't make any difference so whether I was on it or off didn't matter.

It probably wouldn't be such a deal except my first loss happened about 2 weeks after I stopped (at a different OBs direction) taking the baby aspirin and I have totally made the connection between aspirin being life saving. Sigh.

So, what's your protocol? Were you on baby aspirin? Did you stop taking it? Did you do heparin? Did you stop that? What would you do in my shoes? Any articles/research on the issue would be awesome!

Thanks!
Jenne
post #2 of 17
I am compound heterozygous too. I take Folgard and I was on baby asprin too but that was partly due to the IVF because I think they have everyone on the baby asprin. I think they had me stop taking that after the positive beta. My midwife's backup high-risk OB told me that all I needed to do is remain on the Folgard but I didn't need any sort of blood thinner.

I know that many women on blood thinners of any sort have to stop at some point late in their pregnancy due to bleeding risks during the birth but that's all I know. Sorry that my story isn't much help. Maybe you can try to talk with one perinatologist and just see if everything the OB told you is correct.
post #3 of 17
Thread Starter 
Thank you for your response gemasita (congrats on your little one!). Isn't this just a really exciting time?! I'm feeling gushy about pregnancy, life, and babies this morning...must be hormonal! I'll take it!

Your answer makes me less worried now about stopping the baby aspirin. Hopefully some other mamas will weigh in too...

Jenne
post #4 of 17
Hmm. I'm also compound heterozygous and take a low dose aspirin and Folgard. My OB has not said anything about stopping the aspirin, and I'm 34 weeks - well into the 3rd tri. I'll ask about it on Monday.

I guess it would make sense to stop at some point. Most docs would want you off aspirin/ blood thinners before any surgery, but I don't think it needs to be for more than a few days prior (although, unlike elective surgery, most of us don't know when labor will start!)
post #5 of 17
Thread Starter 
Tinynyota- Yes, that was my plan...to stop taking the baby aspirin at like 39W5D or something. Which is a total guess on my part but is the best I could come up with in terms of when. If you don't mind, please let me know what your OB says/thinks about this. There just is a real lack of evidenced based research (and only a few anecdotal studies which showed no difference in outcomes) which makes sense I suppose since there is so much controversy over MTHFR in the first place. Thanks for your response!

Jenne
post #6 of 17
I am homozygous for MTHFR, plus I have several other blood clotting disorders (for which I am on a low molecular weight heparin). For the MTHFR I take 5mg of folic acid a day....I am taking a methylfolate form of folic acid. Regarding the BA, I started on BA before TTC and stayed on it until about 10 weeks. My hematologist does not believe that you need BA unless you have APS (which I do not). He did not believe I should be on it, but said I could stay on it until the third trimester if I wanted (as stated, I stopped it at about 10 weeks). He said something about going off in the third trimester for the developing heart....sorry, I don't remember exactly what it was.

Tracy
post #7 of 17
Thread Starter 
Yeah, Tracy, that is part of my angst! There is so much conflicting information about treatment...some sites/research/doctors say heparin + folic acid, some say BA + FA, some say just FA, some say it isn't real and no treatment is needed. I would assume that if you are on heparin you wouldn't want to be on BA because you are already on a blood thinner. May I ask if you'll stop that before birth?

Jenne
post #8 of 17
Jenne -
There are actually a lot of women who take both the BA and Lovenox throughout their entire pregnancy. I think my hematologist just feels it is unnecessary. Many women will switch from Lovenox to Heparin at about 36 weeks (it has a shorter half life - goes out of your system faster) and then are usually good to go before birth. I am on Innohep, which is like Lovenox, but my hematologist has no plan to change me to Heparin. I will either stop the injections once labor begins or if I go for an RCS (hiding head in shame, but it is looking like a good option at the moment for various reasons) then I will stop the Innohep a day or two before.

Congrats on the pregnancy ....here is to an easy and uncomplicated remainder with a healthy babe at the end! This babe will be my second rainbow baby (first on blood thinners) and I really think my treatment is what is allowing things to progress...thankfully! I think if I were in your situation (again, this is just my personal opinion) I would stay on the BA until sometime in the middle of the third trimester and then go off. Hard decisions, I know.

Best of luck,
Tracy
post #9 of 17
I am homozygous for C677T. The WORST combination.

I take Thorne brand 5-MTFH, and nothing else. (I got pregnant easily both times, have never had a miscarriage, and never had a pregnancy complication.)

I wouldn't take Folic Acid for a million dollars. I can't believe they are still recommending that!
post #10 of 17
Quote:
Originally Posted by Lady Lilya View Post
I am homozygous for C677T. The WORST combination.

I take Thorne brand 5-MTFH, and nothing else. (I got pregnant easily both times, have never had a miscarriage, and never had a pregnancy complication.)

I wouldn't take Folic Acid for a million dollars. I can't believe they are still recommending that!
I'm compound hetero and I'm only taking methyl folate by folapro but only about 1600mg now I feel like I'm really not doing enough . I'm 5 months pregnant and this is my 2 nd pregnancy. I didn't know I had the gene with my first pregnancy and all was fine. I've also never had a miscarriage and got pregnant really easy this time. Where do you get your info lady lilya? I'm looking for a more natural approach I really don't want to take baby aspirin and I'm wondering If I should up me folapro.
post #11 of 17
Thread Starter 
Quote:
Originally Posted by Lady Lilya View Post
I am homozygous for C677T. The WORST combination.

I take Thorne brand 5-MTFH, and nothing else. (I got pregnant easily both times, have never had a miscarriage, and never had a pregnancy complication.)

I wouldn't take Folic Acid for a million dollars. I can't believe they are still recommending that!
Well, I think part of the problem is that (at least in the US) when one says "folic acid" one could be talking about methyl folate or folic acid since it is all labeled the same thing.

Jenne
post #12 of 17
Jenne,
In our practice the OBs generally do not recommend anything other than extra folic acid (ie Folgard) for our MTHFR patients, though they do not discourage baby aspirin if desired. For women on baby aspirin the recommendation is to stop by 36 weeks mainly for blood clotting, I've not heard of fetal issues on this low dose though it's not my area of expertise. Congratulations and best of luck!
post #13 of 17
There are several threads about MTHFR in the Health and Healing forum.

Jenne, the problem in the US is that it all IS folic acid. There are only a few companies that make a methylfolate supplement. The technology is too new. And it hasn't been all that long since they discovered that a third of us can't use folic acid as if it were methylfolate. Most doctors still have never heard of this.
post #14 of 17
Thread Starter 
Yes, I agree it is all called folic acid even when it is folate or methyl folate. I have posted on the MTHFR threads in health and healing some. Thanks for the reminder!

Jenne
post #15 of 17
Quote:
Originally Posted by Lady Lilya View Post
There are several threads about MTHFR in the Health and Healing forum.

Jenne, the problem in the US is that it all IS folic acid. There are only a few companies that make a methylfolate supplement. The technology is too new. And it hasn't been all that long since they discovered that a third of us can't use folic acid as if it were methylfolate. Most doctors still have never heard of this.
ya as far as I know the only way to get methyl folate is folapro or thorne. I've read a little there about mthfr in H&H.
post #16 of 17
Thread Starter 
Well, Metanx (which is what I take) has L-methylfolate Calcium,
Pyridoxal 5' -phosphate, and Methylcobalamin which are all the compounds needed for the methionine synthasis to occur.

The prental I take is a combo of folate and folacin.

Anyway, I was really looking for discussion on the need for blood thinners/baby aspirin and what the protocol is for the 3rd trimester and birth.

Thanks,
Jenne
post #17 of 17
I've never taken a blood thinner. I've never been on an aspirin regimen.

Have you had your folate and homocysteine levels tested? As I understand it, a high homocysteine level would have to precede any clotting. If your homocysteine is fine due to getting enough folate, you wouldn't need to do anything to thin blood.
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