Abnormal MTHFR gene

rosegoldgirl

Hey girls, hoping someone has some insight, advice, or positive stories for me! I've had 3 early losses over the past 2.5 years. Went to a specialist who ran a ton of panels, and then put me on a slew of supplements. I ended up doing two rounds of Ovidrel for ovulation trigger. Long story short, 2nd one caused SO many problems that actually led me to the neurologist thinking I had some horrible life-altering condition. Nothing was found, and the symptoms started 24 hours after my 2nd trigger injection, so I have to believe that's what it is. Anyway, I requested all of my lab work from the specialist because I'm still trying to figure out what's going on with me two months later, and I look through it to find that it says "abnormal" next to the MTHFR gene. Probably something my specialist should have mentioned, right? I did my own research and found that's why she put me on CoQ10 and extra folic acid, which I have been taking for several months now.

Anyway, my question to you girls is if any of you have an abnormal MTHFR gene, had losses possibly due to it, started on CoQ10 + folic acid, and then became pregnant and carried full term. Anyone??

I'm going to my specialist this morning to consult with her more on my crazy symptoms, and I'll be asking her more about MTHFR to find out what "abnormal" really means.

Thank you! Hope you're all doing well!

PlainJane8350

Yes! After my loss, I found out that I have MTFHR. That doctor immediately put me on rx folic acid and, even before I got pregnant again, I felt like I had more energy from taking it. I'm 25 weeks this week and past the stage where MTFHR would have struck and caused abnormalities in this pregnancy. I'm no expert by any means, but you're welcome to email me any time:

PlainJane19792001@gmail.com

Campow83

Hi there. I had two pregnancies that ended up both in a loss in my second month. Had every test done under the sun with everything coming back normal except for MTHFR. However my doctor said there was no proof that MTHFR cause miscarriages. I decided to do my own research and discovered I should be taking folate not folic acid. I also take a methyl version of B6 and B12. I was taking these supplements for about three months before my husband and I started trying again. I am now 38 weeks pregnant and everything has been amazing. I switched doctors and found one that supported the MTHFR diagnosis. She also decided to put me on Lovenox injections which is a blood thinner because research shows that MT HFR can cause blood clotting and this can cause miscarriages. Please feel free to message me if you have anymore questions or concerns. I feel like I am a success story for us that are diagnosed with MTHFR and it's hard to find doctors who support this diagnosis.

meganelise17

I just found out I have MTHFR and I just found out that I am pregnant again. My doctor has me on aspirin, b12 and a ton of folic acid. Is that correct or should I ask him about other things? He did further bloodwork before we knew I was pregnant and he said I didn't need extra blood thinners.

PlainJane8350

Sounds right to me!

dc072175

@PlainJane8350 - what type of B12 are you taking? I have the compound heterozygous mutation, I'm 21 weeks and beyond exhausted so was thinking some B12 would help! 

rosegoldgirl

@Campow83, I completely missed your response somehow! Thank you so much for that information! I actually do think I'm on folate, not f.a. I will have to double check. I'm also on CoQ10 which is supposed to help absorb folic acid since the MTHFR issue can cause your body to not absorb it properly. I am also heterozygous. Also on B12, not sure about B6. I hope that now that I'm on all of these supplements, my pregnancy will stick (hoping I am pregnant now, but won't know for another week probably). Thank you girly!!

rojabonita

Hi ladies. I was diagnosed compound heterozygous a couple of months ago after 2 losses. I am newly pregnant (est. 4w2d today) and hopeful for this one. I am taking 5mg, folate, 1mg methyl-B12, and avoiding any foods fortified with F.A. Also a liquid b-complex, prenatal with all methyl-b vitamins, and a baby aspirin.

I have my first appointment on 9/10. I went in for the blood draw yesterday. The nurse said my doctor called in an RX for progesterone 200mg oral (twice daily) and to start right away. I didn't have low numbers (all well over 20) with my 2 losses. Has anyone been given progesterone 'just because'? I haven't started it yet. I'm worried about how it might make me feel at work and am thinking about waiting until my first count is back.

I'd love any insight, personal experiences, or feelings towards taking progesterone without low numbers. I've never taken it before and not sure how I feel about something that may not be needed.

Thanks and good luck to everyone!

bntfroggie

rojabonita said:

Hi ladies. I was diagnosed compound heterozygous a couple of months ago after 2 losses. I am newly pregnant (est. 4w2d today) and hopeful for this one. I am taking 5mg, folate, 1mg methyl-B12, and avoiding any foods fortified with F.A. Also a liquid b-complex, prenatal with all methyl-b vitamins, and a baby aspirin. I have my first appointment on 9/10. I went in for the blood draw yesterday. The nurse said my doctor called in an RX for progesterone 200mg oral (twice daily) and to start right away. I didn't have low numbers (all well over 20) with my 2 losses. Has anyone been given progesterone 'just because'? I haven't started it yet. I'm worried about how it might make me feel at work and am thinking about waiting until my first count is back. I'd love any insight, personal experiences, or feelings towards taking progesterone without low numbers. I've never taken it before and not sure how I feel about something that may not be needed. Thanks and good luck to everyone!

I'm on progesterone, just because, same as you 200mg twice a day.  Basically they told me you can't have too much, but you can have too little and it wont hurt anything.  I just take it at night in case it makes me tired, that way I'll already be asleep when I get drowsy from it.  I get to come off of it at 12wks if I have a good scan.

rojabonita

@bntfroggie Thank you so much for your reply! I have been searching and searching for info. Do you take all 400mg at night? Orally or vaginally? My Rx says orally but I've read there are less symptoms with vaginally. I'm going to cal my Dr and see what options she's willing to give me.

rojabonita

@dc072175 I take a 1mg sublingual methyl-B12 tablet. Found at CVS.

rosegoldgirl

@rojabonita, I don't have an answer for you, but I do have a question. What is "compound heterozygous" for MTHFR? What does that mean? Curious to know if it's the same thing as me or not. Thank you! And good luck!

bntfroggie

@rojabonita I mispoke I take it orally once a day so I'm on 200m pills once a day. That's why I can only take it at night. Honestly with the fatigue I'm tired anyway so I don't see that it makes a difference even when I take it. No visible side effects.

rojabonita

@rosegoldgirl Compound heterozygous is one mutation each at C677T and A1298C. Hope this helps. Good luck to you too!

rojabonita

@bntfroggie I finally called the nurse. Dr. said to do same as you, 200mg night only. Thanks for helping me with this!