mthfr, folic acid & twins

jodiann808 · 09-01-2009, 02:46 PM

Hello,

I found out I'm homozygous for C677T. My question is how much folic acid should I be taking? I've heard other people say I should be taking 2 Folgard a day (one for every copy of the C677T mutation).

I asked my doctor's nurse about this, and she told me to continue taking my prenatals (which have 800mcg folic acid) plus one Folplex (a Folgard equivalent with 2.2 mg folic acid) a day.

I'm also wondering if I end up with twins (we're doing IVF), will this be enough folic acid to support twins? I asked the nurse about this as well, and she said if I do end up with twins, then to ask my OBGYN about whether he wants me to take additional folic acid. My feeling, though, is by that point, isn't it too late to prevent neural tube defects and the other problems that develop in the first few weeks of pregnancy?

I'm wondering if I should just go against the nurse's instructions and take additional folic acid, B6 and B12 on my own. How much extra should I take? Can too much be harmful?

Thanks in advance for any advice.
Jodi

lila · 09-08-2009, 06:42 AM

Jodi, I also have MTHFR and am homozygous C677t. My re had me on on Folgard in addition to my prenatal which has 1 mg and a baby aspirin everyday and then once I got my pos hpt(I cheated and poas at 6dp5dt) I called the re and they had me increase to 2 Folgards/day. My re wants me on one/day and as soon as pregnancy is confirmed increase it to 2/day regardless of how many babies are in there=) I hope this helps!!!

jodiann808 · 09-08-2009, 08:27 AM

Lila,

Thanks so much for your reply. I knew someone out there must be going through the same thing I am. Congrats on your BFP!

Jodi

lila · 09-08-2009, 02:21 PM

Jodi,

Have you had your homocysteine level checked? Also, have you had any other rpl tests done? I only ask b/c I wish someone had told me before I went on to IVF. I got bfp with twins with my fresh cycle and I had a miscarriage and then my RE checked me for a few rpl tests and that's when I found out about my MTHFR. I then got bfp with my frozen cycle and I lost that baby as well. I am now learning that I should be on lovenox b/c homo c667t is the mutation that most likely causes clotting. I was on baby aspirin with both pregnancies and I lost them both and there were no other issues. Our problem is male factor. I had a chromosomal analysis done on my first pregnancy and it was normal so we know it wasn't that. Now after two IVF's and two miscarriages he says I need to be on lovenox and I would really hate for you or anyone to have to go through the same thing that I have gone through. It just makes me so mad that I had to lose 2 pregnancies before the dr will take action. I went to a hematologist last week and had a lot of other rpl tests done and I currently(anxiously) awaiting the results. Anyway, I hope that this helps you and I would strongly recommend speaking with your RE about Lovenox and also looking up others who have Homo c677t and had success with Lovenox. Oh yeah, have you been on baby aspirin before?

Good Luck to you and I hope you get your BFP!!!

jodiann808 · 09-08-2009, 03:04 PM

Hi Lila,

Sorry to hear about your losses. I've had two miscarriages as well, but with this cycle I've switched to a new RE. With this new doctor, we've done a bunch of tests: MTHFR (I'm homozygous C677T so doc is prescribing aspirin & heparin, which I think is similar to lovenox), natural killer cells (I tested high so I'm doing intrallipids), antiphospholipid antibodies (normal), TH1/TH2 (normal), karyotyping (husband was normal, mine came back w/possible mosaic for Turners Syndrome but genetic counselor said that sometimes happens with people over 40 and didn't think it was the problem), hysteroscopy was normal. HSG showed tubes are not blocked, thyroid & blood sugar were a little high so doc has me on meds for those. What other tests did your doctor have you do?

Jodi

lila · 09-08-2009, 03:55 PM

Jodi, I am so sorry to hear of your losses. It sounds like your new re is on the right track=) After my first miscarriage my re tested me for mthfr, lupus anticoagulant, factor v leiden, Anti Cardiolipin IgG, IgM, IgA. Then after my 2nd I asked to have more tests and they said it wasn't necessary so i went to a hematologist and he ran them for me. I am waiting for results on Prothrombin 20210 Mutation, Anti Thrombin III Activity, Plaminogen Activator Inhibitor, and my homocysteine level. I got the results for my Protein C and Protein S activities and they were normal. I am getting to anxious for my results b/c I had the blood drawn last Monday and they said 3 days. I keep calling everyday and they just tell me that it's still being worked on. Ugh!!. I really think that re's should test you before you go through IVF for RPL b/c if you can't get pg than how would you know if you have rpl and then they wait til after you spen so much time, money, and heartache with IVF and test you. It's so frustrating!!! Sorry to rant. Do you know of any other tests I should have?

Thanks!

jodiann808 · 09-08-2009, 05:37 PM

I totally agree that they should test you beforehand! Even though the tests get expensive, I keep thinking about how much money we could have saved if we had done all the testing before our first IVF.

If you haven't done these tests, I would recommend having a blood glucose test (if you don't have your glucose levels under control early on, your baby could have birth defects) and a thyroid test (my RE said my thyroid was OK for "normal" people, but for fertility purposes he wanted it lower so he put me on a low dose thyroid drug). To control my blood sugar, I was put on metformin, which is a diabetes drug. It's inexpensive (insurance covers it) and my RE said it even helps prevent miscarriage.

You might also want to get a sonohysterogram or a hysteroscopy to make sure the inside of your uterus looks ok. If you have polyps or fibroids in the uterus it can prevent implantation. My first IVF cycle was cancelled because I had polyps. There were a lot of them and by the size of them I'd had them for awhile. The old RE had done several ultrasounds but never caught them, and I had even complained that I was bleeding for THREE WEEKS, which is one of the symptoms of polyps, but they just said it was breakthrough bleeding from being on the pill. Yeah, right!

Did you do the tests for natural killer cells, antiphospholipid antibodies, and TH1/TH2? They're very expensive tests - about $400-$500 each - and you have to send your blood to a specialty lab for processing. Most REs wouldn't know what to do with the results, so you'd have to have an RE that knows about immunological issues. If you want to learn more about this stuff, you should check out Alan Beers' book, "Is Your Body Baby Friendly?" It's kind of scientific, but has a lot of good info. I have to admit I flipped through it when my friend gave it to me, then didn't pick it up again until a year later. I think the only reason I went back to it was because I found out my new RE wrote the forward to the book!

lila · 09-09-2009, 05:37 PM

Hi Jodi, that is so frustrating about your polyps. Some of these RE's make me wonder. Mine is supposed to be the best where I live and I question him sometimes too.
I have had the Antiphospholids, blood glucose, and thyroid and all came back normal. I also got my results today and they all came back normal. I also had a hsg and hysterscopy/endometrial biopsy and they were normal too. On the one hand it's great that everything's ok but on the other it makes me wonder why I keep losing my babies. I guess it's b/c my re made it like the MTHFR alone wasn't a big deal but then why am I losing babies? He did say he would put me lovenox but not until pregnancy is confirmed and I feel like I would like to go on it after ovulation. It's very frustrating and I can't find an re who will put me on lovenox after ovulation. One of the re's I spoke to said he wouldn't put me on it until I had another miscarriage!!!! I was astounded. After all we have to go through to get pregnant he wanted me to lose another baby!

Anyway, when are you having your retrieval? It's very exciting. My dh and I were talking today about when we will do it again. Sending lots of baby dust=)

jodiann808 · 09-09-2009, 08:57 PM

OMG - I can't believe that RE wouldn't even consider putting you on lovenox until you had another miscarriage! Isn't two enough??!! Geez! I would think they would want to put you on it earlier since the blood clots can prevent the embryo from getting the necessary nutrients and can cause miscarriage. I haven't gotten my final calendar yet, but I'm pretty sure they're going to start me on the heparin around the same time as I start the stims.

Congrats on getting normal test results, but sometimes don't you just wish they'd find something wrong so they'd have something to treat? Seems a little silly, but I was almost relieved when they found out I had MTHFR and elevated natural killer cells. Now they can try something different and hopefully this time it'll work. Even though I just turned 41 years old, I just have this gut feeling that my "old eggs" are not the problem :-)

I think treating you for MTHFR *is* a big deal (whether you're trying to get pregnant or not). Are they also giving you supplements for extra folic acid & B vitamins? You should continue taking extra folic acid/B vitamins and low dose aspirin the rest of your life to prevent the blood clots. From what I understand, if your body doesn't absorb enough folic acid & B supplements, it causes your homocystein levels to rise, which is what can lead to blood clots.

I'll be starting the stims on October 2, so my estimated retrieval is around mid October. So it sounds like you guys are still shopping around for a new RE? Lots of baby dust to you too! Where are you located? I'm in the San Francisco Bay Area.

lila · 09-10-2009, 02:19 PM

Jodi, That's so exciting that you know around the time of retrieval. It's so nice to have that to look forward to.

I have been on folgard and baby aspirin and the thing that really frustrates me is that I was on baby aspirin during both pregnancies and folgard during my second and I still lost them. In fact, I went in for my first beta and it was 77 and everything looked promising but by the time I went for my second one is dropped to 50.4 so it's clear that I need to be on lovenox before pregnancy is confirmed b/c it was too late. I am having a hard time finding someone who will prescribe it to me before pregnancy confirmation. I live in Orlando, Fl and I have spoke to every RE in the area. My current RE said that if I do IVF he'll put me on Lovenox when I begin stimming but not for IUI. That seems a little shady to me. Why will he put me on it for IVF but not IUI. I can only think of one reason, money!!! It really frustrates me. I feel like I should find a new RE but mine is the supposed to be the best.

I hope you are doing well and talk to you soon!!!

09-01-2009, 02:46 PM	#1 (permalink)
jodiann808 0-99 post 2 of hearts Join Date: Aug 2009 Location: San Jose, CA Posts: 16	mthfr, folic acid & twins Hello, I found out I'm homozygous for C677T. My question is how much folic acid should I be taking? I've heard other people say I should be taking 2 Folgard a day (one for every copy of the C677T mutation). I asked my doctor's nurse about this, and she told me to continue taking my prenatals (which have 800mcg folic acid) plus one Folplex (a Folgard equivalent with 2.2 mg folic acid) a day. I'm also wondering if I end up with twins (we're doing IVF), will this be enough folic acid to support twins? I asked the nurse about this as well, and she said if I do end up with twins, then to ask my OBGYN about whether he wants me to take additional folic acid. My feeling, though, is by that point, isn't it too late to prevent neural tube defects and the other problems that develop in the first few weeks of pregnancy? I'm wondering if I should just go against the nurse's instructions and take additional folic acid, B6 and B12 on my own. How much extra should I take? Can too much be harmful? Thanks in advance for any advice. Jodi

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09-08-2009, 06:42 AM	#2 (permalink)
lila 300-399 post 5 of hearts Join Date: Jun 2009 Posts: 320	Jodi, I also have MTHFR and am homozygous C677t. My re had me on on Folgard in addition to my prenatal which has 1 mg and a baby aspirin everyday and then once I got my pos hpt(I cheated and poas at 6dp5dt) I called the re and they had me increase to 2 Folgards/day. My re wants me on one/day and as soon as pregnancy is confirmed increase it to 2/day regardless of how many babies are in there=) I hope this helps!!!

09-08-2009, 08:27 AM	#3 (permalink)
jodiann808 0-99 post 2 of hearts Join Date: Aug 2009 Location: San Jose, CA Posts: 16	Lila, Thanks so much for your reply. I knew someone out there must be going through the same thing I am. Congrats on your BFP! Jodi

09-08-2009, 02:21 PM	#4 (permalink)
lila 300-399 post 5 of hearts Join Date: Jun 2009 Posts: 320	Jodi, Have you had your homocysteine level checked? Also, have you had any other rpl tests done? I only ask b/c I wish someone had told me before I went on to IVF. I got bfp with twins with my fresh cycle and I had a miscarriage and then my RE checked me for a few rpl tests and that's when I found out about my MTHFR. I then got bfp with my frozen cycle and I lost that baby as well. I am now learning that I should be on lovenox b/c homo c667t is the mutation that most likely causes clotting. I was on baby aspirin with both pregnancies and I lost them both and there were no other issues. Our problem is male factor. I had a chromosomal analysis done on my first pregnancy and it was normal so we know it wasn't that. Now after two IVF's and two miscarriages he says I need to be on lovenox and I would really hate for you or anyone to have to go through the same thing that I have gone through. It just makes me so mad that I had to lose 2 pregnancies before the dr will take action. I went to a hematologist last week and had a lot of other rpl tests done and I currently(anxiously) awaiting the results. Anyway, I hope that this helps you and I would strongly recommend speaking with your RE about Lovenox and also looking up others who have Homo c677t and had success with Lovenox. Oh yeah, have you been on baby aspirin before? Good Luck to you and I hope you get your BFP!!!

09-08-2009, 03:04 PM	#5 (permalink)
jodiann808 0-99 post 2 of hearts Join Date: Aug 2009 Location: San Jose, CA Posts: 16	Hi Lila, Sorry to hear about your losses. I've had two miscarriages as well, but with this cycle I've switched to a new RE. With this new doctor, we've done a bunch of tests: MTHFR (I'm homozygous C677T so doc is prescribing aspirin & heparin, which I think is similar to lovenox), natural killer cells (I tested high so I'm doing intrallipids), antiphospholipid antibodies (normal), TH1/TH2 (normal), karyotyping (husband was normal, mine came back w/possible mosaic for Turners Syndrome but genetic counselor said that sometimes happens with people over 40 and didn't think it was the problem), hysteroscopy was normal. HSG showed tubes are not blocked, thyroid & blood sugar were a little high so doc has me on meds for those. What other tests did your doctor have you do? Jodi

09-08-2009, 03:55 PM	#6 (permalink)
lila 300-399 post 5 of hearts Join Date: Jun 2009 Posts: 320	Jodi, I am so sorry to hear of your losses. It sounds like your new re is on the right track=) After my first miscarriage my re tested me for mthfr, lupus anticoagulant, factor v leiden, Anti Cardiolipin IgG, IgM, IgA. Then after my 2nd I asked to have more tests and they said it wasn't necessary so i went to a hematologist and he ran them for me. I am waiting for results on Prothrombin 20210 Mutation, Anti Thrombin III Activity, Plaminogen Activator Inhibitor, and my homocysteine level. I got the results for my Protein C and Protein S activities and they were normal. I am getting to anxious for my results b/c I had the blood drawn last Monday and they said 3 days. I keep calling everyday and they just tell me that it's still being worked on. Ugh!!. I really think that re's should test you before you go through IVF for RPL b/c if you can't get pg than how would you know if you have rpl and then they wait til after you spen so much time, money, and heartache with IVF and test you. It's so frustrating!!! Sorry to rant. Do you know of any other tests I should have? Thanks!

09-08-2009, 05:37 PM	#7 (permalink)
jodiann808 0-99 post 2 of hearts Join Date: Aug 2009 Location: San Jose, CA Posts: 16	I totally agree that they should test you beforehand! Even though the tests get expensive, I keep thinking about how much money we could have saved if we had done all the testing before our first IVF. If you haven't done these tests, I would recommend having a blood glucose test (if you don't have your glucose levels under control early on, your baby could have birth defects) and a thyroid test (my RE said my thyroid was OK for "normal" people, but for fertility purposes he wanted it lower so he put me on a low dose thyroid drug). To control my blood sugar, I was put on metformin, which is a diabetes drug. It's inexpensive (insurance covers it) and my RE said it even helps prevent miscarriage. You might also want to get a sonohysterogram or a hysteroscopy to make sure the inside of your uterus looks ok. If you have polyps or fibroids in the uterus it can prevent implantation. My first IVF cycle was cancelled because I had polyps. There were a lot of them and by the size of them I'd had them for awhile. The old RE had done several ultrasounds but never caught them, and I had even complained that I was bleeding for THREE WEEKS, which is one of the symptoms of polyps, but they just said it was breakthrough bleeding from being on the pill. Yeah, right! Did you do the tests for natural killer cells, antiphospholipid antibodies, and TH1/TH2? They're very expensive tests - about $400-$500 each - and you have to send your blood to a specialty lab for processing. Most REs wouldn't know what to do with the results, so you'd have to have an RE that knows about immunological issues. If you want to learn more about this stuff, you should check out Alan Beers' book, "Is Your Body Baby Friendly?" It's kind of scientific, but has a lot of good info. I have to admit I flipped through it when my friend gave it to me, then didn't pick it up again until a year later. I think the only reason I went back to it was because I found out my new RE wrote the forward to the book!

09-09-2009, 05:37 PM	#8 (permalink)
lila 300-399 post 5 of hearts Join Date: Jun 2009 Posts: 320	Hi Jodi, that is so frustrating about your polyps. Some of these RE's make me wonder. Mine is supposed to be the best where I live and I question him sometimes too. I have had the Antiphospholids, blood glucose, and thyroid and all came back normal. I also got my results today and they all came back normal. I also had a hsg and hysterscopy/endometrial biopsy and they were normal too. On the one hand it's great that everything's ok but on the other it makes me wonder why I keep losing my babies. I guess it's b/c my re made it like the MTHFR alone wasn't a big deal but then why am I losing babies? He did say he would put me lovenox but not until pregnancy is confirmed and I feel like I would like to go on it after ovulation. It's very frustrating and I can't find an re who will put me on lovenox after ovulation. One of the re's I spoke to said he wouldn't put me on it until I had another miscarriage!!!! I was astounded. After all we have to go through to get pregnant he wanted me to lose another baby! Anyway, when are you having your retrieval? It's very exciting. My dh and I were talking today about when we will do it again. Sending lots of baby dust=)

09-09-2009, 08:57 PM	#9 (permalink)
jodiann808 0-99 post 2 of hearts Join Date: Aug 2009 Location: San Jose, CA Posts: 16	OMG - I can't believe that RE wouldn't even consider putting you on lovenox until you had another miscarriage! Isn't two enough??!! Geez! I would think they would want to put you on it earlier since the blood clots can prevent the embryo from getting the necessary nutrients and can cause miscarriage. I haven't gotten my final calendar yet, but I'm pretty sure they're going to start me on the heparin around the same time as I start the stims. Congrats on getting normal test results, but sometimes don't you just wish they'd find something wrong so they'd have something to treat? Seems a little silly, but I was almost relieved when they found out I had MTHFR and elevated natural killer cells. Now they can try something different and hopefully this time it'll work. Even though I just turned 41 years old, I just have this gut feeling that my "old eggs" are not the problem :-) I think treating you for MTHFR is a big deal (whether you're trying to get pregnant or not). Are they also giving you supplements for extra folic acid & B vitamins? You should continue taking extra folic acid/B vitamins and low dose aspirin the rest of your life to prevent the blood clots. From what I understand, if your body doesn't absorb enough folic acid & B supplements, it causes your homocystein levels to rise, which is what can lead to blood clots. I'll be starting the stims on October 2, so my estimated retrieval is around mid October. So it sounds like you guys are still shopping around for a new RE? Lots of baby dust to you too! Where are you located? I'm in the San Francisco Bay Area.

09-10-2009, 02:19 PM	#10 (permalink)
lila 300-399 post 5 of hearts Join Date: Jun 2009 Posts: 320	Jodi, That's so exciting that you know around the time of retrieval. It's so nice to have that to look forward to. I have been on folgard and baby aspirin and the thing that really frustrates me is that I was on baby aspirin during both pregnancies and folgard during my second and I still lost them. In fact, I went in for my first beta and it was 77 and everything looked promising but by the time I went for my second one is dropped to 50.4 so it's clear that I need to be on lovenox before pregnancy is confirmed b/c it was too late. I am having a hard time finding someone who will prescribe it to me before pregnancy confirmation. I live in Orlando, Fl and I have spoke to every RE in the area. My current RE said that if I do IVF he'll put me on Lovenox when I begin stimming but not for IUI. That seems a little shady to me. Why will he put me on it for IVF but not IUI. I can only think of one reason, money!!! It really frustrates me. I feel like I should find a new RE but mine is the supposed to be the best. I hope you are doing well and talk to you soon!!!