Hi my name is Trisch. I'm 29 years old & I have had 9 pregnancies. I have 3 healthy children. I had 1 miss in between my 2nd & thrd the other 6 were back to back 2004-06. in Nov 05 I saw a specialist. He did a series of bloodwork & diagnosed me with the MTHFR mutation. I now take 2 MG folic acid & 1 baby asprin daily. I am desperately trying to get pregnant again.It has now been 7 months since my last miss & nothing.I'm sure all of you know what I'm going through. I am looking for a little support. I am so glad i found this site.Looking forward to hearing from all of you. ↑
Hi Trisch, welcome. I'm sorry for your loses. Did your doctor tell you if you had MTHFR on both chromosomes or just one? As you can see from this board, we're all doing something slightly different, but I think many are taking folic acid (I'm now taking 5mg) and B 6 and 12. My ob gave me an Rx for Folgard which has all 3 vitamins. You may just want to ask your doc about it. Best of luck to you! ~ Cheryl ↑
Hello, thought I would share the rest of my story in case it helps someone. Following my info posted above, I have the double C and A mutation on my MTHFR gene so I had my homocysteine levels tested and they came back low. This is very good. I went to the cardiologist like was recomended and he said there was nothing to treat me for. All my tests came back great. However, the information I wanted to share here has to do with my future testing. He said I should have my homocysteine levels tested again around the age of 40 to 45 (I'm 36 now) since the lowering of my hormonal levels due to menopause could cause my homocysteine levels to rise. During all this my husband was found to have the same double mutation (C and A). He will now need to have his homocysteine levels tested. Men who have the double mutation are more likely to have heart trouble from it that women since our hormones buffer us at least until menopause (all this is what the cardiologist said). The genes of both my husband and I MAY have led to my miscarriages. I read a study where they tested a large population of healthy babies (they tested the neonatal cord blood). They found many babies with single mutations (C or A) and some babies with the double mutation (C and A). They did not find any babies with triple or quadruple mutations on the MTHFR gene and they were looking for them. Their conclusion was that those babies are not able to survive. If anyone understands genetics it will help you with this next part. We are having my parents tested to see if we can tell if I have one mutation on each chromosome or two mutations on one. We were going to have my husbands parents tested too but they are being uncooperative. Anyway, here is one gene example. Say I have 2 mutations on one of my two chromosomes and the other is "clean" and my husband has 2 on one of his leaving the other clean. Each of us could have given a baby our double mutated chromosome and that child would have 4 mutations and could not survive. There are other scenarios I could run for you that would leave a baby 3 mutations with us for parents and that baby could not survive either. SInce I have four healthy, beautiful children I can assume that they have any combination of 2, 1 or no mutations. Since I had no miscarriages until after the fourth child I have a guess that the mutations for me and the mutations for him are on a single chromosome in each of us. This scenario gives us a higher probability of children that will live more often. My children should be tested for homocysteine levels at 10 - 15 years old (the cardiologist says) and my son (I have 3 girls and 1 boy) should be tested sooner (10 - 12 years) due to him deing male. At this time I will have them tested for the mutations as well because some of them may not even have any mutation issues. If they have mutations and normal homocysteine they do not need to be tested again until their 20s and again at child bearing for the girls. We have been given the green light to try again. I am taking the generic to Folgard, a prenatal and an aspirin every day. I will always have to take the Folgard and aspirin I am told and the extra prenatal is just for when we are trying, We are moving so we may skip one more cycle. I will keep you posted. DId anyone notice a change in their cycles after starting the Folgard or folate suppliments? Anyone more regular? Anyone usually running several days late on a regular basis (without being pregnant) and then all of a sudden starting on time now? Just wondering. Hope this info helps someone. ↑
I was also told never to take the pill. No one with MTHFR homo or compound hetero should take estrogen drugs, due to increased risk of clotting problems. ↑
HI want 1more
When my doctor explained the mutation he said that there are 2 types of mutations & i'm very lucky because the other one is more complicated. It was a little confusing to say the least so he described it like having a cash lane on an all easy pass highway. So I can use the easy pass lane. had I had the other mutation there would be very little to be done. (Does this make sense?)
It still is very confusing but I have a lot of faith in my doctor.He reassures me that I will have another healthy baby. He has seen a lot of miracles. So I try very hard to stay positive.I have also found by doing at home ovulation tests that my body is not predictable.Even though my cycles are like clockwork. ↑
I have a double mutation on a single gene and my Dr didn't once tell me there is little to be done if I get pregnant. I will have to do the Levonox shots but I also know women who have a single mutation and also had to do the Levonox shots. I think they are just learning about this mutaion and since then they have moire knowledge on how to treat it. A friend of mine just had a healthy baby girl with MTHFR she had to do the shots and had some complications like low amnionic fluid which is common, and restricted blood flow which is also common. You just have to be monitored more closely. ↑
Krista M ~Thanks for sharing all of your information. I want to comment on your thoughts on Folgard. Interesting that you talked of being a few days later than usual with your cycle b/c that is exactly what happened to me. After my last miscarriage in December and after finding out that I have A1298C (single mutation), I was put on Folgard in January. That same month, my cycle was all messed up (stopping, starting, etc.). Then in February, I was 5 days late. I was hopeful that I was pregnant but was saddened when P finally showed up. This month, I am at the end of my ovulation testing kit time, and it has shown nothing. Ug. So yes - - I do share your frustration, as I used to be a very straighforward "28 dayer." Hope that everyone here is hanging in there. :)Amy ↑
Krista ~ Sorry, I just re-read your e-mail more carefully. I guess you were speaking of having been irregular in the past and now being regular. It looks like the Folgard did just the opposite for me! :) ↑
I just wanted to pass on what my doctors have told me about heperin, lovenox and MTHFR. I am being seen by specialists at a top reserach hospital in NYC. I have been told that until very recently, Lovenox and Heperin were recommended because MTHFR could cause clotting and so therefore it was treated like other clotting disorders of pregnancy (Factor V, etc...) However, they are now backing off the herperin and Lovenox, as the treatment for MTHFR is relatively simple - Folic Acid deficiency is the problem, and folic acid supplements should fix it. If a woman with MTHFR has high homocystein levels, then more aggressive treatment, such as Lovenox, will be considered. As for my experience, I am now 16 weeks into my 6th pregnancy. I have had 4 first trimester mc's for various reasons (2 blighted ova, an ectopid, fetal demise at about 8-9 weeks, most likely chromosomal). I am doing well this time, and perhaps it is due to the folic acid and baby aspirin. Maybe it's just coincidence. My homocystein levels are normal. And I do have a living child who I conceived and carried without any knowledge whatsoever of my MTHFR mutation (compound hetero), and therefore didn't take any drugs. I'm not sure what any of it means. But I'm happy to take the Folgard and the baby aspirin, as it can't hurt either way. ↑
I just want to add, that when I first had my diagnosis I was VERY eager to pin all my past problems on the mutation. My doctors were less convinced, citing the old (annoying) bad luck arguments. Now I'm not so sure they're wrong.... Just don't know. I say this only to inspire hope in those of you with MTHFR that maybe it isn't going to prevent you from having a successful pregnancy, and that if you are taking meds, you really should be just fine. ↑
I found this forum through Cheryl (want1more) and am thankful for it! March 7 I was told I had homo-MTHFR-C677T. I have one healthy boy (22months) and 2 m/c-Nov and Feb. I had bleeding/preterm labor with my son, but got to 38 weeks. He is fine--very stubborn, which I believe got him to term! My regular ob tested and caught the MTHFR, but only prescribed the equivilant of another prenatal vit. I am now seeing a specialist-maternal/fetal med, who has me on aspirin, prenatal vit, and one Folgard which will be increase to two with a pregnancy. He says that with this treatment our chances of a successful, viable pregnancy are that of "normal" women. I am so excited! Cheryl-I should ovulate March 23ish. Hopefully, we can be successful together! Thank you ladies and Nate for all your information--it is so helpful. Tracey ↑
Hi KristaM - thanks so much for your sharing all that you've learned. I'm also heterocompound and my homocysteine levels are normal. Have you heard anything about how much homocysteine levels may vary? When I got pregnant last I was travelling and had forgotten my prenatals, so missed 5 days during the second week (didn't know i was pregnant yet). I miscarried at 5 wks. I wonder if not taking the folic acid could have caused my homocysteine levels to go up for a few days. Does anyone know if they fluctuate much on a day by day or week by week basis? On another note, I'm seeing an IVF specialist at UCSF (which does cutting edge research in fertility) on Thursday and will share any info I get there on this and related topics. Keep positive all! Kristen ↑
Hi all ~ Kristen, I am eager to hear what your fertility center says....I guess UC means that you are in CA with Gigi Smith? And Erin, congratulations to you! I am so happy for you and reassured by the fact that you are 4 months. I' m rooting for all of you. :)Amy ↑
KristenR.....I would love to hear what your specialist says. I too live in Ca. I live in Napa and go to the fertility Dr at Kaiser in Vacaville. She is great but doesn't seem too concerned about the MTHFR so I will be happy to hear what you find out on Thursday. Because I am concerned about it. Best of Luck! ↑
Yes, the full chromosomal analysis is what revealed the MTHFR. My husband had the same work-up; this showed that he has completely normal DNA. We also had a chromosomal analysis conducted on our last m/c (I am not sure which type of chromosomal analysis you are inquiring about...so I will go ahead and include the info. on our last baby). It revealed the the baby had Trisomy 22. The high risk OBGYN does not think that my MTHFR has anything to do with this and calls it all a fluke. Let's hope that he is right. Good luck! ↑
I had the blood work done and that revealed the MTHFR. I inguired about the chromosome testing and my Dr said it's very expensive and there isn't anything you can do about your Chromosomes anyway. Which meant that if there was a chromosome abnormality that would be preventing us from conceiving then they can't fix it. ↑
Gina from Napa~ You have such a good point. We cannot change our DNA. Our doctor recommended the full work-up on us after the baby came back with Trisomy 22. I think that he wanted our genetic counselor to have the most accurate information when we met to talk about our chances/risks for having more babies with the same issue. It was really costly as you said, but surprisingly many insurances will cover it with enough proof that it is needed. I hope that this helps someone. :) Amy ↑
hello to everyone. Just wanted to share my story. We've been diagnosed with unexplained infertility after 1 yr trying unsuccessfully. Started on IUI in December 04, pregnant in March 05, all seemed fine, had m/c at 10 weeks. Testing of the fetal tissue was inconclusive. Took time off and began first cycle of IVF in Oct 05, got pregnant with twins lost first one on Dec 2nd and second on January 3rd, 06. I requested that they do the full work up - chromosal testing and all. All was normal, except that I was diagnosed with MTHRF (levels within normal range). My fertility Dr. isn't too concerned with this. She put me on 1.6 mg of folic acid and daily aspirin. She's confident that I can go to have a normal pregnancy. Will start my next IVF cycle this month. Chromosal testing is expensive and there is nothing that can be done to repair it but I think it's good to know so that you can go to make decisions on future pregnancies. Best wishes to everyone. ↑
Hi - my name is Kelly. I am new to this site and am so thankful to have found it. I had a pregnancy loss on 10-29-05. Since our loss, we have been to genetic counseling, blood tests, etc. I have the MTHFR, but have normal levels of homocestine. They said I have 2 changes in my gene, but do not know yet if the 2 changes are in the one gene, or if there is one in each. Can anyone please help me? I am so confused. We are going to see a perionatologist next Wednesday, and I want to be as prepared as possible. Thank you all for any help you may be able to give me!! ↑
The reason I asked about the chromosome testing is b/c I was told I have the mthfr defect and thought that was the cause of my 2 m/c's in the past 6 months. Then my dr. got the chromosome test results. Dh is normal, but I'm not, I have 3 different strands of chromosomes (just the sex chrom. is messed up) and therefore that's why I'm m/c'ing they strongly suspect. They said I could continue to try to see if a pregnancy takes (hope that a normal chromosomed egg is fertilized), get a ovary donated and do ivf with my dh's sperm, or adopt. I feel like the only person going through this, didn't find a forum on it so that's why I was asking. I go to get a 2nd opinion in a month from a RE (so far have talked to my ob and a genetic counselor) ↑
Hi Mm - I'm really sorry you are going through this. You aren't alone. I would get more opinions before moving to donor egg and/or adoption. Have you been to an IVF expert yet? They can do genetic testing on embryos prior to implantation. They usually test for the standard problems, but I recently heard about a couple who had a custom screen made for their own particulary genetic problem. I'm on my way to the UCSF IVF consultation now and will report back. ↑
Hi I am so glad that I found this site! I am 7w4d and just found out that I have MTHFR and I am So scaredI have had 3 misc last year and found out early this time so they wanted to do some test and found this mutation. I don,t know what kind I have, like I said I just got the call this morning but I was wondering did anyone have to get an amnio and after i start the folate pill will I have to be on them for ever? ↑
Hi all - just back from UCSF's IVF consult. Dr thinks it is too early to turn to IVF as we've had 2 pregnancies in the last yr. IVF doesn't do much to prevent MCs. He didn't think that MTHFR was involved in the MCs that I've had. He is participating in a research study on this very topic and thinks it is an unlikely cause. He said that folic acid should prevent it from being a factor and I've been taking that for 2 yrs in my prenatal vitamins. Hmm. Anyway, Kaythans - congrats on being pregnant!! Take your folic acid and try not to worry. We're all pulling for you. Keep us up to date on how it goes! ↑
Hi everyone! I'm new to this forum. First of all, thanks to all of you for being so helpful. You are amazing and have been my saving grace over the last 2 days! My backstory: I'm 36 and recently married, so we've just been ttc for the last 6 months. I had 2 m/c's 9/05 and 2/06. I have no problem getting pg, but can't seem to make it last longer than 6wks4dys. M/c'd at the same time for both! The first we just decided was bad luck, and the second we ran a fetal chromosome test which came back abnormal (maybe 23?) My OB wasn't too worried, but we agreed to do a major blood test now rather than waiting. All came back negative, except we found out I was postive for MTHFR. 2 copies of C677T. She told me immediately to start taking 5g folic acid and 100mg B6. That's total including my prenatals. She said it wasn't necessary for me to take B12, but as soon as I get a positive preg test, then I start 80mg of baby aspirin. My OB is wonderful, and feels certain that I will be able to get pg, stay pg and deliver a healthy baby. Even with the double C677T. Maybe 3 times a charm?? I'm seeing an internist next week to determine homocystine levels, and to find out how this affects the rest of my life. Anyway, we're going to try again in 2 months. Can't wait! Practicing being calm in the meantime..... ↑
Just wanted to tell you that my sister just delivered a perfect baby girl about 1 month ago and she also has two copies of c677t. She took folic acid and a baby aspirin until she was prgnant, then continued with the folic acid and was on a daily injection of Lovenox for her entire pregnancy.
Just wanted to let you know that there is success even with your mutation! Good luck to you! ~Heather ↑
vmt, I'm sure these 2 months will seem like a long time, hopefully you can focus on getting your body even more baby ready. :) The thing that bugs me about the dr. doing the chromosome testing and finding a problem (with the 23 chromosome) is that I've had 2 m/c's and I know a lot of women who have yet their dr. didn't do the testing so they kept trying and had normal babies. So maybe me and dh need to keep trying? I know the RE/IVF expert will tell us more about our chances, but really it's 50/50 either a pg will work or it won't, I'm so sick of statistics! venting does make me feel better!!! :) ↑
Thanks for the encouragement Heather! You made me feel better! And yes, Mm, ultimately I think all we can do is get as much info as possible about why we're m/c-ing and keep trying. What else can you do? Stats are just that, stats - and are different for everyone. My doc said the last time I m/c'd was chromosomal abnormality, nothing else. Nothing to do with the MTHFR. Now I know I have it, and am taking all the supplements. All I can do is hope for the best. This is something I have no control over. I can only be armed with info, and take care of my body as best I can, and do what my doctor advises. She did the fetal cell test just to give me peace of mind. I'm glad we found out about MTHFR, so I can try and help myself as much as possible, but I say just keep trying unless a specialist tells you otherwise! When I left the doc's office yesterday, she gave me a big hug and said "see you in 2 months when you're pregnant again!" I asked her flat out if I was actually going to be able to carry a healthy child to term, and she said "absolutely". She said she would tell me if she thought I needed to start looking into egg donation, IVF, etc, but she's sure I can do this. It'll happen when it happens I guess, and in the meantime, husband and I will have fun "trying" when the time comes! ↑
vmt, hang in there. My doctor said the same thing. Just keep trying. That's all we can do. It will happen for you as I'm positive it will happen to us. Stay positive and enjoy the "trying" part of conception. Best wishes. ↑
Hi! Thanks for everyone being so open and honest. I am new to the group. I just turned 34; my husband is 40. We have had three mcs all first trimester. The first one occurred in 1999; we conceived while on birthcontrol so we chalked it up to doing all the wrong things. We weren't trying at the time so assumed that it would be easy when we did. We had our next miscarriage Dec 2003. The last one was Aug 2005 on the same day as our first ob visit. We had an ultrasound that day and the baby looked great with a strong heartbeat. The OB told us that we had a less than 5% chance of miscarring at the point and for us to relax. We miscarried less than nine hours later. She did more their normal blood work and found nothing. She kept insisting that miscarriages are not something that you inherit. We went to see an RE at that time after the OB could not find anything, but tell us we were getting older. Prior to his additional blood work he stated that he would have us take a baby aspirin during pregnancy and prosteroen prior to andn through preganancy. The RE found the MTHFR gene mutation and my homocysteine level was elevated. It was like a light bulb went off when I started doign research. My Mother had two etopic pregancies, five msc, and one still born baby at 51/2 months. She found out that she had cervical cancer when we was pregnant with me. We both suffer from Migraines. Her father had migraines and had mutliple strokes. A another couple in our bible study group has just had their 5 mc. So the emothional toll trading off miscarriages is getting hard to stay positive or decide if you are wiling to subject yourself to possibly getting hurt again. The RE added 4mg of folic acid on top of our prenatal vitamins and I need to go back to have my homocysteine levels rechecked before we are cleared to try again. I need to go in the next week. He hasn't decided if he will change to heprin yet once pregnant yet. The RE pulled on thing out of our history that he felt was important and I was curious if any one has had the same experience. All of our miscarriages have been in the 8th bor 9th week and are what is considered complete. The sac passes fully intact to include the embreyo...just like you would see a picture in a textbook for that age. He felt this was important becuase it indicated that the pregnancy was goign great then something went drastically wrong in a very short period of time. Sorry if this was disturbing to anyone....I just really need to know if I am alone in this. My regular OB said she had only seen it once other time in her entire practice besides my cases. I am praying for all of you. I hate that anyone else is having to go through this. God Bless! ↑
