TTC After a Loss

MTHFR ?

Just wondering if anyone else is dealing or has experience with MTHFR issues...  I just found out I'm compound heterozygous for C677T and A1298C. I've been taking a prenatal with l-methylfolate this time around. My OB doesn't seem to think it's a big deal, but I want to make sure I'm doing everything I can. 

Re: MTHFR ?

  • I'm homozygous for A1298C and my RE likewise indicated it wasn't a big deal. She tried to put me on Folguard but I've read too much that questions whether folks with mutations can actually process folic acid to take that so instead I use my prenatal with Folate and I take an extra 400mg of methylfolate. She did advocate taking extra B6 and B12 and that seems consistent with what I have read so I take both of those (I use sublingual B12, not pills). The body apparently needs all three of B6, B12, and Folate to actually make something useful (this is my lay person talk). You might ask to have your homocysteine levels checked - people with MTHFR mutations sometimes have high levels of homocysteine which, again, understand this is my lay person explanation, means that the B vitamins are not being efficiently converted for use by the body. When I had my level checked it was fine. We actually were just talking about MTHFR on the TTGP TTCAL thread and I shared this nifty diagram which came from a research article (previously shared with my by a TTGP TTCAL grad who has the MTHFR mutation). It visually explains why you need B12 and B6 to make Folate usable. 

    Tbh, I have kind of just blown off the MTHFR mutation because my RE was so casual about it. However, when I was trying to find the below chart I came across a lot of alarming stuff about increased risks of RPL, preeclampsia, heart issues, and other scary things in people with  MTHFR mutations. Can anyone else shed some light on this? People who have one "normal" copy of the gene have fewer problems than those of us without any normal copies. I'm not much help on this as I haven't figured out if I should be more freaked out (I have unexplained RPL). I don't think I've run across someone with your precise mutation combination but I would think it's similar in severity to being homozygous for A1298C, which is not as severe as being homozygous for C677T, but I am guessing, maybe someone else has a thought on that.  

    I will say I can think of three TTGP TTCAL grads with some form of the MTHFR mutation who are currently enjoying successful pregnancies, so it's not like the MTHFR mutation. 


  • *lurking

    i have three different blood clotting disorders; factor v, low protein s and MTHFR which I also have TWO positive traits for (thanks Mom and Dad.) I recently saw my perinatologist for this and although I have yet to see a hematologist he did shed a bit of light. He told me that although it might not always be significant in pregnancy it’s good to know because it is “treatable.” I am currently pregnant again after my loss this past June and although he does not believe any of these gene mutations had to do with my loss he is currently treating it this pregnancy with a baby aspirin daily. I also take folic acid in addition to my prenatals. Although it can be a scary thing to hear you have knowing you have it can make all the difference! FX for your rainbow soon
    DS born 04/22/15, Pregnant again 03/01/17 however loss due to PPROM at 20+6 weeks now TTC rainbow
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  • Thanks!!!!

    @zamora_spin I also read some alarming things, so I was surprised that my OB was cavalier about it. I also suffer from anxiety pretty severely, but since I started taking folate it has really gotten better (I’ve even been able to wean off of my SSRI successfully) so there’s definitely something to be said for taking the right vitamins. 

    @shri929 congratulations on your rainbow! It gives me a lot of comfort to know that other people are having success with similar issues.
  • My sister is homozygous a1298c.  I actually just had labs done for myself Tuesday and should know in a few days.  It’s my understanding that one copy is really no biggie and something like 60% of the population carries it.  Homozygous is a little more of a problem and requires extra folate and maybe baby aspirin, and “compound heterozygous” can be trickier and at times require blood thinners - but I’m NO doctor and I haven’t talked to one about it yet; I’ll bring it up with RE at my first appt 1/23 once I know what I am.  My OB was on board to test me when I told her about my sis after my MC.  She is also TTC, one recent ectopic (which again, I’m not a doctor, but doesn’t seem related.)  
  • Mrs Carbo, if you find out any more about being compound heterozygous please let me know!  I've been on about it in the weekly thread, but my blood results just confirmed that I am the same and I'm really anxious about it.  My OB's nurse said "she looked it up and just one copy of a gene doesn't pose increased risks!" but I'm pretty sure they're thinking about just one copy with the mutation and one normal copy - not two different mutated copies.  I honestly won't know what to think until I ask an RE more about it.  Off to google I go!
  • val_mom2val_mom2 member
    edited January 2018
    I have homozygous MTHFR mutation C677T. After a miscarriage with my first pregnancy, a successful but hard second pregnancy, and another miscarriage after our rainbow baby, they finally did some tests to find out what was up. I am still not sure what this all means, but my doctor put me on a low dose aspirin and extra folic acid while trying to concieve and to continue taking throughout the pregnancy if I keep the next one. We are trying again, but it is very scary. It is nice to know I am not the only one. 
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