MTHFR help needed


#1

Hi,
I had MTHFR testing done in October last year and as per the geneticist I had a “minor variation in the MTHFR gene which can be taken care of by additional intake of folate”. I was told to take 5mg of folic acid a day, which I have been doing. She also told me that I can take 50mg aspirin a day as this is a form of empirical treatment used on women where the cause of miscarriage cannot be diagnosed.
As per the lab report I have “CT and AA genotypes sugesting heterozygous status at 677 and homozygous wild status at 1298 positions respectively of the MTHFR gene”. As per my understanding, 1298 is “normal” for me but 677 is the problem.
Is 5mg folic acid a day and 50mg aspirin enough? Is there something else I should be doing? Do I need to take a blood thinner like heparin?
Please share your inputs!


#2

I also have MTHFR. I have the heterozygous 667 gene mutation as well. If I were you, I wouldn’t take and extra “folic acid”. When I found out I had MTHFR, I did A LOT of research. I found that people who MTHFR can not metabolize or break down folic acid, as well as other vitamins (like B vitamins). Therefore; we need to take “METHYL FOLATE”. Methyl folate is already broken down to main chemical, so therefore your body doesn’t need to break it down, and your body WILL absorb it. Your body has to break down four/five chemicals in folic acid to reach the methyl folate stage. Since we have MTHFR, our bodies can not break it down, therefore; we are not absorbing it. I would recommend just buying methyl folate if I were you. That’s what I take :slight_smile: Hope this helped.


#3

I have mthfr c677t 2 copies homogyeous (sp). I dont understand it yet but so far my RE has me taking lovenox, and 81mg asprin. I don’t take any extra folic acid. I could use some extra information on the subject as well. It seems information on this is hard to come by.


#4

Thank you [B]Kemiracle[/B]! :flower: Do you also have to take any blood thinners in addition to the folate supplements?

[B]journeyoffaith[/B], I have found it difficult to find much information as well and most of what I find is difficult to understand as well.


#5

Who did the testing

Hi All,

Was just curious, who initiated the testing to find the MTHFR gene mutation? And when was the testing done (was this done in the beginning before any cycles were done or were they done once you had multiple MC?).

Thanks,
Ula


#6

[quote=bluefish787]Hi All,

Was just curious, who initiated the testing to find the MTHFR gene mutation? And when was the testing done (was this done in the beginning before any cycles were done or were they done once you had multiple MC?).

Thanks,
Ula[/quote]

Hi Ula,
The MTHFR test is one of the recommended tests for a woman who has had multiple miscarriages. I had this done as well as several other tests after my 3rd miscarriage/chemical. My experience has been that different doctors have different opinions on the usefulness of these tests so you may have to hunt around for a doctor who recommends these tests.


#7

[QUOTE=bluefish787]Hi All,

Was just curious, who initiated the testing to find the MTHFR gene mutation? And when was the testing done (was this done in the beginning before any cycles were done or were they done once you had multiple MC?).

Thanks,
Ula[/QUOTE]
I basically wouldn’t do another ivf unless they checked everything. i asked for a blood panel bc of blood clotting and heart problems in my family. i dont think the dr REALLY thought i needed it but I’m sooooo thankful i did it. u hav to really push for ur way in the infertility world. gl!


#8

Oh, and we didn’t check for it till my second ivf. the first i had NO implantation out of 4 trans. The second i had 100% implantation out of 3 but 2 stopped growing early on like 5-6 weeks. don’t know y.


#9

I have a single mutation of the MTHFR C677T as well. Best info I’ve found is here: MTHFR Mutation | MTHFR Gene Mutation | What is MTHFR? - MTHFR.net (Dr. Ben Lynch’s site.) It also appears to be the Doc who is doing the most research. Since this (epigenetics) is a new field, most docs will not have learned about this in school, so won’t necessarily know anything about what it means for you.

I cut out regular folic acid, switched to Thorne Prental (which has the right form of mythylfolate in it,) and take additional methylfolate, methylcobalamin and ubiquinol as wel. If I had more stamina, I’d probably be taking a few more things, but since I’m healthy, as far an anyone can tell, I’ll reserve further supplementation until I am pregnant, if that ever happens. Like Krill oil w/astaxanthin and other things he recommends for pregnant women with the mutations.

Just switched to these supplements about 2 months ago, but I’d say my nails are actually tougher than they usually are, so hoping the supplements are helping in other arenas as well!

Best,
N


#10

Blood thinners depend on what copy you have, and how many. If you have two copies of C677T, or one copy each of C677T and A1298, then I would push for lovenox with 81mg aspirin. Also important is to take the right kind of folate, as mentioned above. You can find them in the prenatals, Neevo and Vinate, just to name two. (Vinate is cheaper than Neevo). It is also in Metanx, often used while ttc, but not necessarily a prenatal vitamin. All of these vitamins have the active form of B6 and B12 as well, since the mutation preventing folate metabolism is usually accompanied with a deficiency in B6 and B12 metabolism.
I personally was tested after the karyotype of my mc came back normal. I have one copy each and I take Vinate, 81mg aspirin, and lovenox for it. I have taken heparin and lovenox and personally prefer lovenox since it is less painful, bruises less, and does not require blood tests to check platelet levels.
JourneyofFaith- make sure you get the Rx for LMethylfolate in Vinate or Neevo. I can’t believe your RE hasn’t put you on it already. You can get the script from you primary or OB if your RE says no. If you still have problems go buy them separate at GNC, but you have to have it.


#11

My ob ended up giving me Folbee RX after I started seeing them. My RE’s office didn’t think I needed it but I was sure I did. I’m disappointed that I didn’t start the Folbee until 12 weeks but better late than never I guess…


#12

Folbee and Folgard, as far as I know, have 5mg folate, which is a very high dose of regular folate. It works under the principle that if a person takes a mass dose of folate some of it is bound to make it through. :frowning: If your body has a mutation converting it into the useable form, mass doses don’t quite solve the problem. Sure, something will get metabolized, but why not just take the already metabolized version, guaranteed to be able to use? Since you have the worst combination of MTHFR- 2 copies of C677T, I’d go for the Lmethylfolate- that way you know for sure you and your baby are getting enough. Maybe your OB would give a script for one of the other prenatals mentioned my myself or the previous posters, with Lmethylfolate.


#13

Oh really? I have an appointment scheduled for next week. Ill be sure to ask them to change it to one of the other prescriptions. Thanks for that info!


#14

Hello,

I am still learning about this. As for me I have 2 copies of CT667 and for me it can cause blood clots as I try to get preg from ovulation to the time I can test (I think this happens someone times). It can also cause M/C around 6-8 weeks where I m/c.

When I had my DD I was on baby asparin and maybe that was enough. After DD the Dr told me that I did not need it. This new Dr has us on Neevo, Nexas, folic acid.

There is a FB group you can join.
MTHFR & Genotype Support & Education


#15

I forgot to mention I will be on baby asparin and heparin as well.