November 2014 Moms

MTHFR??

I just received some of my blood work results from my doctor and found out that I have MTHFR. It was explained to me as a blood disorder, but some of the things I am seeing online are scary and confusing. I was told to take a baby aspirin everyday and that my doctor would talk to me about it at my next appointment. But, my next appointment isn't until June 12th! That's so far away, and a really long time to worry and wonder how this could affect my pregnancy. I don't think I could handle another loss. Has anyone has any experience with this condition or issue? Some happy stories from moms with experience would really help to easy my worries right now!

TTC #1 since November 2008

3 MC: #1 at 8wks (blighted ovum) opted for D&C, #2 at 6wks natural, #3 at 12wks (no heartbeat) opted for D&C.
EDD 11/11/2014..... Heard a heartbeat for the very first time at 8w2d and I couldn't be more excited!!! The fact that this LO has a heartbeat gives me hope that I may get to be a mother after all!!

Re: MTHFR??

  • MrsG1019MrsG1019 member
    edited May 2014
    I have MTHFR and it's just your body's inability to process folic acid properly.. So in addition to my regular prenatal.. I have to take 5 additional folic acid pills daily 4000mg daily. It's not a death sentence or anything to worry about. Many doctors (even my RE) doesn't even believe in MTHFR or it meaning anything.

    ETA- i also take baby aspirin but that's because I have a blood clotting issue as well (prothrombin)

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  • I have it too. Was explained that I wouldnt absorb folate properly. Wasn't told to take aspirin but I do take a ton of extra folate 4100 a day. There are two markers and you can have 1 or both. I only have 1 so he was less concerned. Good luck!
  • MrsG1019 said:
    I have MTHFR and it's just your body's inability to process folic acid properly.. So in addition to my regular prenatal.. I have to take 5 additional folic acid pills daily 4000mg daily. It's not a death sentence or anything to worry about. Many doctors (even my RE) doesn't even believe in MTHFR or it meaning anything.
    I considered upping my vitamin intake, but then I read a blog online that mentioned that taking folic acid supplements will contribute to the issue because they are synthetic and that the best choice is to eat more foods that contain folic acid and take vitamins similar to folic acid. Now this is a blog and not from a doctor so I can't say if it was accurate or not. I just came across it and thought I would share. I hope you are correct and it isn't anything to worry about. I just worry constantly because of my previous losses, which the nurse informed me were caused by the MTHFR, which adds even more concern and worry. 
    MTHFR isn't a disease, it's a gene.  It helps process amino acids for your body. It also helps with chemical reactions of folic acid within the body.

    There are a few different things that could be wrong with yours - some issues have not been known to cause any problems. Although, some are known to cause birth defects. (Not trying to worry you.)

    I am assuming your doctor is aware you are pregnant, and still choosing to see you on June 12th. If he was overly concerned I'm sure there would be much less time between the appointments.


    ETA: T&P's and I wish you the best of luck. Keep us updated.
    And thank you for this! It eased some of my worry. I didn't even think about the doctor changing the appointment if it was serious, so i'm going to try not to worry. Thank you!

    TTC #1 since November 2008

    3 MC: #1 at 8wks (blighted ovum) opted for D&C, #2 at 6wks natural, #3 at 12wks (no heartbeat) opted for D&C.
    EDD 11/11/2014..... Heard a heartbeat for the very first time at 8w2d and I couldn't be more excited!!! The fact that this LO has a heartbeat gives me hope that I may get to be a mother after all!!
  • I have it too. Was explained that I wouldnt absorb folate properly. Wasn't told to take aspirin but I do take a ton of extra folate 4100 a day. There are two markers and you can have 1 or both. I only have 1 so he was less concerned. Good luck!
    I think I only have 1, because the nurse mentioned something else but said it was negative. I'm a little uninformed at the moment so forgive me. I hope to learn more at my appointment when the doctor goes over it with me.


    TTC #1 since November 2008

    3 MC: #1 at 8wks (blighted ovum) opted for D&C, #2 at 6wks natural, #3 at 12wks (no heartbeat) opted for D&C.
    EDD 11/11/2014..... Heard a heartbeat for the very first time at 8w2d and I couldn't be more excited!!! The fact that this LO has a heartbeat gives me hope that I may get to be a mother after all!!
  • abbyfulabbyful member
    I considered upping my vitamin intake, but then I read a blog online that mentioned that taking folic acid supplements will contribute to the issue because they are synthetic and that the best choice is to eat more foods that contain folic acid and take vitamins similar to folic acid. Now this is a blog and not from a doctor so I can't say if it was accurate or not. I just came across it and thought I would share. I hope you are correct and it isn't anything to worry about. I just worry constantly because of my previous losses, which the nurse informed me were caused by the MTHFR, which adds even more concern and worry. 
    I have absolutely no experience with MTHFR, so take anything I say with a grain of salt.

    I just wanted to comment on the folic acid bit: 
    Folic acid is the synthetic version of folate. You can buy folate supplements. I know Solgar brand vitamins makes one, they are a reputable vitamin company. 
    There's also 5-MTHF, which is a type of folic acid supplement. Don't know much about it, I've just seen it before.

    Just a wanting to throw out a couple ideas for you to research if you were interested.
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  • MrsG1019MrsG1019 member
    edited May 2014
    I actually don't take folic acid. I take L-methyl folate by Solgar 800mg-- which is the pure broken down-easy to absorb version of folic acid/

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  • KMW08KMW08 member

    This link/blog post explains it pretty well: https://lifebalanceinfertilitycoach.wordpress.com/2008/10/07/the-mthfr-tutorial-genetic-mutation-and-cause-of-miscarriage/

    I was diagnosed with the Hetero A1298C form, it's the least worrisome of the possible combinations. My RE advised me to take an 81mg aspirin for the rest of my life and to do an additional 1000mg of folic acid + what's in my prenatal. After doing my own research I learned that MTHFR also affects the absorption of B-vitamins, with my RE's approval I started a super-b-complex along with additional b6 & b12. 

    I also want to add that there's plenty of doctors who believe MTHFR has nothing to do with loss & miscarriage, but there's some who do believe it factors in. This is why there's so much conflicting information out there on this topic.

    I do know some of the other combinations of MTHFR, ladies are placed on lovenox during pregnancy. I really don't know much on this as I don't have to do this protocol.

    Also, Metanx and Folgard are both prescription strength vitamins designed for MTHFR. I actually looked into the ingredient/contents of them and based my vitamin strength off of these.

    BFP#4 3/17/14 - rainbow Baby BOY arrived 11/10/14 !!

    DX: Uterine Septum - Resection 9/5/13 || MTHFR Hetero A1298C || My Chart

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  • This is kind of true. MTHFR has many variations. Most of which aren't a huge deal. There is one strand which is, and it's more than just ending more folic acid. It causes miscarriages, etc. I have a mutation and was supposed to take extra FA. I never took my PNV's let alone the extra very consistently. Some strands warrant a baby aspirin. Come to think of it, my RE didn't care about it last time or this time. It was one of the OB's prior that had me on extra FA, but he wasn't educated on fertility treatments. If your dr doesn't want to see you immediately then it's no cause for concern.
    TTC #2: 12/2012
    Back to our beloved RE 10/2013
    BFP #5 3/5/14
    Beta 1: 47. Beta 2: 87. Beta 3: 482!

    Baby CCH v2.0 due 11.14.14

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  • MTHFR is actually more common than you think. I have compound het. (One of the A and one of the C). I take extra folate along with a prenatal with folate instead of folic because it's easier for me to absorb, a baby Asprin until 38 weeks and a B complex with folate in it.
  • I have MTHFR as well. My dr told me to take a baby aspirin daily, and extra folic acid with this PG. Last PG, (which resulted in a 36 weeker BTW) I had a massive blood clot resting on my incompetent cervix; so dr had me take lovenox injections twice daily. Since I'm not bleeding this time around, he seems to think the daily aspirin will control it. I've had almost no complications so far, any that I have had are not related to MTHFR.

    I would think if it was serious your DR would have rescheduled you to come in sooner for sure. Hang in there, and try not to get too overwhelmed with worry.

                                10/16/04 ~ lost our first baby boy at 20 weeks due to IC

                                                  3/05 ~ another loss at 12 weeks

             2/14/06 ~ Our sweet valentine miracle was born after a nightmarish 8 months!

                        Surprise Baby Boy, born sleeping at 31 weeks on 9/21/14

  • sAAmFamsAAmFam member
    For now on let's just call it the motherfucker gene. Some people have motherfucker but it sounds like you will be ok. I wouldn't worry too much about motherfucker. I can't help it!!!!!! I'm laughing hysterically. Sorry we love you!!!! =))
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  • For the ladies on aspirin. Do you have one marker it two? Anything else. Curious why I'm not on it. Adding that to my list of questions for my MFM appt on Wednesday
  • For the ladies on aspirin. Do you have one marker it two? Anything else. Curious why I'm not on it. Adding that to my list of questions for my MFM appt on Wednesday

    I am compound het. so I have one of the A and one of the C. I believe either the A or C makes you more prone to clotting so that's why the need for baby aspirin. Since I have both I don't remember which one makes you more prone to clotting. Your doctor will tell you.
  • Spoke with my MFM today and he basically laughed and said he wished REs would stop doing that test. He doesn't want me to take any aspirin but is ok if I take extra folate. He doesn't think MTHRFR really changes anything. Take that for what you will.
  • mtusnowmtusnow member
    As pp mentioned it's a problem with processing folic acid. My dr put me on 5-MTHF. This is a methylated form of folic acid. Usually the body does this methylating proessing step, but those with the  gene issue have issues with this processes, so by taking the methylated form our bodies are able to get what we need. I take the THORNE brand.
  • mtusnow said:

    As pp mentioned it's a problem with processing folic acid. My dr put me on 5-MTHF. This is a methylated form of folic acid. Usually the body does this methylating proessing step, but those with the  gene issue have issues with this processes, so by taking the methylated form our bodies are able to get what we need. I take the THORNE brand.

    I take that brand too and an additional active mthf from Complementary Prescriptions.
  • RachelC79RachelC79 member
    edited May 2014
    Hey! This is way more common than I thought when I first got diagnosed last year. My husband is also hetero for both of the genes, and our doc put him on L-Methylfolate as well as methylcobalamin (which is what your body synthesizes B-12 into). I'm homozygous for one, 1298, I think, and my doctor just has me on methylfolate.

    How the doc explained the MTHFR gene to me is that it means your body doesn't break folic acid down into methylfolate as efficiently. It's why he put me on methylfolate instead of upping my folic acid intake. I mentioned this all to the OB and she wasn't concerned, just told me to keep taking the methylfolate. I've been told it really doesn't mean that much for pregnancy on its own, but if you have clotting disorders as well it should definitely be addressed.

    ETA: the doc had us both on deplin, but our insurance stopped covering it, so now we're taking methylfolate from MethylLife.
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