Mthfr

ALC08

Has anyone been diagnosed with mthfr and been prescribed high dose folic acid and went on to have a healthy pregnancy??
I miscarried twice in 8 months and was recently diagnosed. After doing some research, i'm concerned the folic acid may not solve the problem. Really don't want to go through this again.

PlainJane8350

I was and I'm currently 27 weeks. They have me Folgard, then I switched to Fab Tab and I take one pill, twice a day.

Do you have access to a geneticist at your doctor's office?

I've read things that say it needs to be folate, not folic acid, but a fertility specialist prescribed it to me while we were investigating my loss and my current doctor, a perinatologist, just refilled it last week.

PlainJane8350

Thank you and I'm so sorry for your losses. Did they find a clotting issue, hence the aspirin?

Fab Tab is just the genetic version of Folgard, although it's the same price so no clue. They gave me a choice of three and Folgard was the only one my pharmacy carried at the time. I started taking it as soon as they diagnosed me, before we started trying again, and felt a difference in my energy level/mood immediately. I see a high risk specialist, too. Someone there should be able to talk to you about it. I go back on July 10th and I'll ask, I've wondered about it anyway.

ALC08

Thanks so much for responding! I'm not aware of a geneticist in my drs office but he is a high risk dr. I have read the same thing, that folic acid in the synthetic version cannot be processed correctly with the deficiency. I'm Just worried it won't be the solution and I'll end up miscarrying again. I think folgard is what i will take. May i ask why the switch and what the difference is? I am also supposed to take baby aspirin through pregnancy. Congratulations on your pregnancy!

ALC08

I'm not really sure about clotting issue. He didn't specifically say. All of this is kinda over my head. He said i had mthfr and there were two parts or something like that and i am deficient in both? I don't really understand the specifics. I will probably talk to the nurse when i call for the prescription. Thank you! It's good to talk to someone with the same issues. Maybe that is why i feel so run down all the time. Especially in my pregnancies, i had no idea it would affect me so bad so early on.

PlainJane8350

I don't know that it's supposed to give you more energy, but I felt like it noticeably did me even before I was pregnant again. Now that I think about it, I was less tired during this pregnancy, too. I don't know much about it either, but here's my email if you ever want to chat:

Plainjane19792001@gmail.com

I would ask if you have a clotting issue as they usually advise against aspirin during pregnancy unless you do. Baby aspirin is so small that it may not pose a risk and it is a very common recommendation.

Did they check your progesterone and your husband's sperm? Did y'all do any testing on the babies themselves?

ALC08

They checked progesterone during second pregnancy. They watched me like a hawk since i had a previous miscarriage. I went in twice a week for bloodwork until my second us showed no development past week 6. I was put on progesterone supplement early on. I had to have a d&c after my first miscarriage because of infection. They tested remaining tissue and said it showed trisomy 16.

PlainJane8350

Ah! O.K. I don't know anything about trisomy 16, but mine was a trisomy 13 loss. Who knew there were so many trisomies! So are they assuming that your other loss was genetic and therefore random?

ALC08

Yes. Although now i wonder if mthfr affected it also? 16 is very common and incompatible with life so there was no chance anyway. I guess it would have even without the chromosomal issue. I had no idea so many things could go wrong

PlainJane8350

I know, it's so scary! I consider myself as lucky as I can with any miscarriage that my first pregnancy was trisomy 13 and, like yours, incompatible with life. I would have lost that pregnancy either way, but because of that loss I started investigating and found the folic acid deficiency. I always tell people that's not why I lost the first one, but it would have caused me to lose a healthy pregnancy.

Campow83

I had 2 miscarriages both @ 8 weeks and tests came back with the 2 mutations of MTHFR. My husband and I stopped trying and I started taking methyfolate, our body will not absorb folic acid and I stopped the prenatal. I added methyl b12 & B6, order all online. I took this cocktail for 3 months and we started trying again. I am now 39 weeks pregnant with a completely healthy baby!!!!! I had to go thru 3 doctors before I found one that supported MTHFR. I had no known blood clotting issue but she also put me on baby aspirin and lovenox just as a precaution!!!! We are our own best advocates!!!! Believe that MTHFR causes miscarriages and take control of your own journey to have your beautiful baby!!!!!! Feel free to message me if you have any questions!!!

ALC08

How did you come up with that cobination and in what amounts? Did your dr prescribe a high dose of folic acid?

Campow83

Yes.... All doctor recommended!!! Folate= 4000
B12= 5000
B6= 5000
1 baby aspirin

40mg lovenox

SuzyHomemaker07

I have compound heterozygous MTHFR mutations. Meaning I have one bad copy of both mutations and one good copy (we all have 2 copies of each gene- if you have one bad copy(heterozygous) you are less affected than if you have 2 bad copies (homozygous) of the same gene). It's really beneficial to know how many copies you have bc that can guage the severity and you should know which gene. One gene affects the methyl folate reaction and one affects blood clotting. It's important to know this as well to effectively treat.

Having one single bad copy of both I was originally prescribed folgard (synthetic folic acid) and lovenox (blood thinner). I questioned the effectiveness of synthetic folic acid on folgard bc if I can't absorb it- what's the point? My dr said bc I have one good and one bad copy I can still absorb some so a higher dose tries to get more through. I also chose to seek out a organic prenatal (found simply at gnc). The organic prenatal has organic folate (in the natural form we can absorb and not synthetic). The lovenox blood thinner was to prevent blood clots and help absorption of the embryo to implant and those injections stated at first positive pregnancy test.

THEN! Then I went to a mfm(high risk ob) to monitor once pregnant. He literally told me that reproductive endocrinologists (fertility drs) do a lot of voodoo and it's not supported by research. I was floored by this and stated doing a lot of research. Turns out he was right! There is more research now to support not treating MTHFR (unless you have homozygous-2 bad copies of one gene). The American college of gynecology (ACOG) medical journal outlines the unnecessary use of lovenox in pregnancy from unnecessary MTHFR testing. They clearly recommend stopping lovenox unless you have 2 bad copies of MTHFR (the one that affects blood clotting) or if you have had blood clots previously. I only have one bad copy and no personal history of blood clots so I chose to go off lovenox bc it does have risk factors during pregnancy for the baby. I also chose to continue with my organic prenatal and stop folgard at my mfm's recommendation bc there is no research to support that high doses of synthetic folic acid help retain pregnancies. I don't like taking medication I don't need, especially while pregnant. I am now 30 weeks, only taking organic prenatal and baby aspirin (bc I had preeclampsia with last pregnancy) and have no issues.

I will also add- the hematologist I saw while taking lovenox told me she could go either way having a pregnant woman with one bad copy. She would allow me to take it if my RE wanted it but it wasn't necessary. She said in her practice ppl who have 2 bad copies of MTHFR that affects blood clotting having already been seen bc they have had a blood clot in their personal history. Those that have one bad copy are usually unaffected. Her recommendation was to go off lovenox after first 12 weeks (bc I was already that far and it CAN help with implantation in early pregnancy). So I followed her recommendation due to fetal risk factors from lovenox and the delivery complications of being on a blood thinner.


It's sooo much. Try to do your own research. If you have any questions feel free to message me!

ALC08

This is so frustrating for me!! I just want to know what will actually help. My dr only recommended baby aspirin so I'm not really concerned with that vs. lovenox. Personally after suffering two losses back to back there is no way i am comfortable trying again without some form of treatment. It's the synthetic vs natural folic acid issue that is driving me crazy. What is the organinc prenatal that you take? Is it easy to take and does it have dha? I tried a few that were horrible and I couldn't get down. Thanks ladies for all the info.

PlainJane8350

I take select O.B. I chew the prenatal, it tastes like blueberry, the D.H.A. that comes with it has to be swallowed.

ALC08

Thanks. Is that a rx prenatal? I spoke to the nurse and I apparently have the compound heterozygous mthfr also. Hence the baby aspirin. So at least i understand a little more now.

PlainJane8350

Ya, it's a rx. I had trouble with the pills and even some of the gummies. When I started seeing my perinatologist at 11 weeks I was taking my folic acid, Flintstones, D.H.A. and trying to take calcium, but it was making me sick. She opened a sample of the Select O.B. and told me to chew it right there. I was scared because everything else I had tried was so bad, but it's not bad at all. Food masks it pretty well, too. I usually pop it in my mouth with a bite of food and it blends right in.

Glad you got a little bit more info! I called the specialist who diagnosed me and talked to his receptionist. I told her why I was calling, because I've read different things online, and she advised me to trust my doctor...not stuff I read online. I do trust him so I'm going to take her advice, plus the folic acid seems to be working for me, but everyone should do what they feel is best for them. ☺

ALC08

Thats kinda what I 've been thinking. I should trust my doctor more that what i read online. He is a high risk dr and the reason why i changed when i found out i was pregnants is because he came highly recomended.

PlainJane8350

Same here and, from what I understand, it's not that we "can't" absorb it at all, its that we don't absorb as much as a person without the deficiency would. Hence the quadrupled amount.

plainjane78

Hey ALC08. I just found out I'm pregnant 4w3d and also have MTHFR Heterozygous C677t (one gene is effected)

As others had mentioned I am on Folgard. I was also immediately at 3w6d put on injectable Heparin 2X's a day.
No baby asprin. I'm learning too.

plainjane78

Plainjane8350 do you also have MTHFR? I might have missed where you posted.

Are you comfortable taking Folgard? I keep having all these MTHFR groups (found online and FB) telling me its DANGEROUS

If so then why did my high risk OB prescribe it?

I've had 2 losses and I'd love for this one to stick.  I am also on twice a day Heparin.

Thanks

PlainJane8350

My twin! Yes, I am. I'm a worrier in general so, after Googling, I asked my nurse about Folgard vs another form of folic acid, too. Not only does my perinatologist support Folgard, but the fertility specialist that I saw before her prescribed it as well. I never disagree with anyone and tell them what to take, but my nurse told me to trust the professionals so that's what I choose to do. I'm no expert on our condition by any means, but from what I understand we do absorb folic acid, just not as well as people without MTHFR do...so we take four times the amount that someone without it would take.

Why do these groups claim that it's "dangerous?" I've heard people say that they think taking the form that Folgard comes in is pointless, but I've never heard that it's dangerous. Are the people in this group fertility specialists, perinatologist, etc? I don't even feel like regular OB's understand conditions like this because when a patient has one, they usually refer them out to specialists. I'm sure people who work at Vitamin Shoppe or are chiropractors or just have a passion for health and fitness know some things, but when it comes to my pregnancy I trust the experts now. I did do my own research initially, though!

With that said, I'm so sorry for your losses and am excited for your current pregnancy. It's so scary, but super exciting at the same time. Did the pin point the cause of both losses to MTHFR? I can only tell you how I feel about it, but here's my e-mail if you just want an MTHFR pregnancy buddy!

Plainjane19792001@gmail.com

plainjane78

Awesome Plainjane8350, I plan to email you soon. I'd love a MTHFR pregnancy buddy.

ALC08

Hey Plainjane8350, I in boxed you to see how things are going! What I have read about folic acid is that the excess we can"t process builds up in our bodies and can cause several health issues. Not necessarily pregnancy related or anything that affects baby. I am transferring my records to my family dr to get his input.

Plainjane78 sorry for your losses, I have had two as well. Hoping you get a different outcome this time! Twice is more than enough for us to endure this pain. I know some have to more than that. I am hoping to be pregnant again soon, soon. Is the heparin due to another issue or MTHFR? Just wondering why both if only one gene was affected. If I understand correctly mine is from two separate genes. I am just learning about all of this.

I have also read about possible connection between MTHFR and autism, Have either of you come across anything. not sure that it causes it but some stat about a high percentage of ppl with MTHFR (may have been compound heter) also being autistic? More worries..

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plainjane78

Hey ALC08, sorry for your 2 losses as well.  I am taking the heparin due to the MTHFR ... those with MTHFR tend to clot, and essentially what happened both times it the blood in the very tiny vessels in the placenta clotted and the pregnancies ended.

Which 2 genes do you have effected?  Mine is one C677t, the most common and the one with less issues.  I don't know what to say about the whole NO folic acid thing .... I take folgard, which has folic acid but I need to to keep my homocycteine levels at bay (higher the level more risk of heart attack and stroke, normal is a 7 or lower, I was a 15!)

I'm not worried about the effects of autism and MTHFR .. there are like a million conditions they link to autism .. it is what it is at this point, ya know?

Don't be afraid, keep trying! I hope you get your rainbow soon also!

Steinium

I have the MTHFR gene mutation as well and am taking Methyl CPG (it is a methyl folate). Needs to specifically be the methyl version (same B12 vitamin) for us to absorb it properly.  I am only 7 weeks, but my acupuncturist and doctor both attribute getting pregnant to taking that supplement. TTC to 3 years prior. First positive, so hopefully all goes well and the little one sticks with me!

plainjane78

Best Wishes Steinium!
Since you have MTHFR you might want to look into being put on blood thinners (either Heparin or Lovenox) since those with MTHFR are VERY prone to blood clots.

That is why I lost my first 2 pregnancies. I didn't know and the placenta clotted   Good luck

hope2432

Those taking baby aspirin for clotting, did you do so throughout your entire pregnancy? Or did you stop shortly before delivery

nkeppel

Anyone take Deplin for folic issue?

PlainJane8350

@ALC08 I just saw this, stupid app... If we haven't talked about it already e-mail me! I have no idea how to find my Inbox on this thing...

Plainjane19792001@gmail.com