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MTHFR?

1346 posts on this thread and the last post was on October 2nd, 2009 9:33 PM
There are currently 4889 members logged in.
Anna - December 5th, 2005 2:53 PM

Hi Erin, I do not think it is a coincidence. I feel the same way. Whenever I take folic acid +b6+b12 I feel more energy and do not get tired easily. So, keep taking those no matter what ....
I did read all your emails and I got some sense what is going on. I am also 37 years and got diagnosed with mthfr (2 compounds) 2 years ago.
I had my friends (not very close) over yesterday and I asked her if she is planning for a second one (she has a 6 years old girl) and she said that she recently had 2m/c-s and was diagnosed with mthfr. She did not have any m/c before her daughter was born. She did not take any Folic acid and B6/B12 before. The doctors now are offering her shots if she becomes pregnant. In my mind I was thinking it was a miracle that she had a girl. (Like in your case) Then I told her my story. (below)
My story is little different. I have a 5 years old son. I got diagnosed after I had a m/c only 2 years ago, BUT I had 6 m/c before my son was born. After 6 m/c-s I was so frustrated of hearing that nothing is wrong with me just a " bad luck "(all tests found nothing). I went to John Hopkins University Medical center back in year 2000. They told me that only 30% is known to the modern Medicine and they have no idea what is wrong with me since all my test were negative (at that time no one even was mentioning mthfr b/c I guess it was just discovered in late 1990-s and probably tests were not available at that time). But they instructed me to take baby aspirin + PROGESTERONE right before getting pregnant. So I did and a month later I started a healthy pregnancy (I had blood too during that pregnancy ). I gave a birth to a healthy boy (thanks God). At that time I was thinking I found a magic formula (progstoerone and baby aspirin) until I was ready for a second child. So it did not work for the second time and I had a m/c. That is when they did a test and found me positive for mthfr. (They offered me shots too.)

SO MY CONCLUSION IS THERE ARE COMBINATION OF FACTORS THAT ARE CAUSING M/C-S. MTHFR PLAYS A BIG ROLE BUT SOME OTHER THINGS ARE INVOLVED TOO WHICH WE DO NOT KNOW. Maybe progesterone supports placenta? maybe you need a right amount of folic acid and b6/b12, I do not know. But you can suggest your specialist the progesterone - it is better than shots...... I do not know now. I was thinking I found a magic formula for successful pregnancy but after a m/c while I was on it changed my thinking. Maybe it is combination of rest, right amount of progesterone, folic acid, b6 b12, aspirin and a strong fetus that can "survive"....... everybody's body id defferent too. THANKS. Apamb@novainternational.com


Erin - December 6th, 2005 9:33 AM

Anna, thanks for all your great information and very sorry to hear about your losses. I was on progesterone with the last preganancy, which miscarried at 10 weeks, which was the longest any of my pregnancies has lasted except for my little girl... The embryo was reabsorbed and the ultrasound showed an empty sac after previously showing baby with good heartbeat... So doctors thought progesterone was doing its job, but there were other problems... they did the blood tests after that and found the MTHFR mutation. I also had a 21 day progesterone level test, and it was 26.6 - slightly above the normal range, so my progesterone seems OK, but I will definately ask the new specialist if I should take it next time as well.... I get pregnant so easily, I'm sure there will be a next time. Whether it comes to fuition is another story.


carol - December 6th, 2005 1:54 PM

Hi Erin - I found out that I have a slightly elevated homocysteine level. I take additional folic acid, B6 and B12. The high level can cause neural tube defects and is linked to causing miscarriages. Taking the vitamins brings the level back to normal and removes all those risks. It's caused by a mutation on your DNA (I have a single mutation, some people have multiple mutations). But the good news is that it's fixable.



Tara - December 7th, 2005 6:45 PM

I Erin. I am a mother of two and I had a fetal dimise back in July at six months. I just found out I was pregnant 5 and a half weeks. The doctor ran hcg and they looked great but I have MTHFR. The specialist can't see me until Mon. Have you heard if it is hopeless if you don;t start theropy before you get pregnant. Thanks


Kara - December 16th, 2005 8:04 PM

Both of my husband's sisters just found out that they have MTHFR. One of them thought she couldn't get pregnant, but turns out she was having very early m/c's. The other sister, who has had a history of blood clots, went to go get tested when she heard about the other sisters results. She had a missed m/c at 17 weeks between her first and second child. She almost died after the birth of her third child due to a blood clot in her brain. She has had other blood clot problems, but never knew that it was MTHFR causing them.


Jennifer - December 16th, 2005 11:22 PM

Hi girls! Well I have to say it is nice to find people that have the same gene mutations. I actually have MTHFR and Factor V Lieden. Two blood clotting disorders. Some history...I had two early miscarriages about 6 months apart. After the second one, my doctor did a whole bunch of tests and I came back positive for the two gene mutations. They immediatly put me on baby asprin, and folex. I went to see a few high risk doctors and they put me on baby asprin, b6, b12, and folic acid. Well the third time I got pregnant, it stuck. As soon as I found out they took me off the baby asprin and put me on the lovenox injections. 30 mg, once per day. I had lots of first trimester bleeding, but after 14 weeks it stopped. (thankfully) I had a healthy baby boy 6 weeks early (I guess a common thread among those on blood thinners during pregnancy)....we are all fine...I took the blood thinner until 6 weeks postpartum....then I was finished. (anything to do with my low milk supply?) But now I do not take anything, but I am thinking abotu getting pregnant again and I am going to pray that the thinners and asprin and vitamins give me another healthy baby. My doctors really did not consider me high risk (cleveland clinic ones) but the original one did...and said I would need extra appts....went to cleveland clinic....they were great. They did, however, send me to a hemotologist who checked all of my levels once a month (all were normal).


Erin - December 17th, 2005 8:19 PM

Hi everyone and thanks for writing. My homocystine levels came back normal, but my doctor is keeping me on the folex and baby aspirin anyway.



Erin - January 2nd, 2006 3:39 PM

Hi everyone. I just came back from the specialist who has had me on progesterone (even though my levels are good) Foltx and baby aspirin and I am 6 weeks 3 days pregnant. I saw the baby on the ultrasound, heartbeat and all, just this morning. Fingers crossed for me - I got farther than this last time and still lost the baby. Hopefully the FOLTX and baby aspirin will make the difference this time. I am heaving with morning sickness all day long.


Kristine - January 6th, 2006 7:39 PM

Congratulations Erin. I wish you lots of luck! I've had two mc's (August and November) both at around 7 weeks. Your postings here and others have been very informative. It is so much information to absorb. My doctor just called and said MTHFR A1298C was detected in my blood tests but not MTHFR C677T. I tested negative for Factor V. She said I am a heterozygote. After these postings, I am going to request my homocysteine levels be checked.


Erin - January 7th, 2006 10:16 AM

The homocystine test will determine if MTHFR is behind your problems or not. If it's normal, either bad luck, unfortunately, or keep looking elsewhere for answers. Lots of luck!


Erin - January 7th, 2006 10:19 AM

Heterozygotes usually are no problem. Homozygous and COMPOUND heterozygotes are the ones with the risk. But if homocystine levels are normal, even they are OK. It's all in the homocystine levels and keeping them normal. Homo and Compound Heteros should take FOLTX to make sure the levels don't become elevated.


gigismith - January 15th, 2006 7:29 PM

I am so glad I found this posting. This gene which in my family we like to refer to it as the Mother....you know what gene is very complex and confusing. I was tested for this after my 2nd miscarriage and tested postive but I do not know if it is hetero or homo, my Dr didn't tell me. All he said was take a daily dose of baby aspirin, Folic acid twice a day and Vitamins B6 and 12 and I will be fine. So I have an appointment on Tuesday for my ultrasound to start the IUI procedure again. It worked but we didn't know about the gene so the twins didn't develop and I lost them at 9 weeks. I'm just very scared that this treatment isn't going to work. Keeping our fingers crossed. Thanks to all who have shared their stories.


Kristina - January 18th, 2006 6:11 PM

Hello all: I just came from my doctor's office and received results that I am MTHFR homozygous. He gave me a prescription for folic acid, but said if I'm taking prenatal vitamins, or a multivitamin that I did not need to take the extra folic acid yet. I guess I should have started that I lost my pregnancy at 21 weeks about 10 weeks ago. I'm going to my maternal fetal specialist on Monday to discuss what they think I should do next. I don't know what my homocysteine levels were, or even if they were tested for. I was just kind of relieved that I had something wrong that could be fixed so I wouldn't lose my next baby. He also said that I would probably be put on heparin injections. Has anyone had to do that? and does it hurt? I have a phobia of needles, but will do anything to have a child. He also told me that I would have more frequent ultrasounds, but that I really wasn't high risk. I guess what I want to ask is, should I start heparin shots and extra folic acid before becoming pregnant or wait until I go in for my first visit. I have those questions to ask the doctors on Monday, but I'm a little anxious and would like to hear what you all have to say.
Good Luck to all of you trying again.


gigismith - January 18th, 2006 7:03 PM

I'm finding not all doctors say the same thing. I went yesterday for my baseline ultrasound before starting the Clomid and IUI and talked to him about the MTHFR and he said according to the fertility specialist I will have to do LMW Heparin shots as soon as I get a BFP because I have the double gene and an elevated homosyteine level. I am currently taking the Folic Acid, and Vitamin B6 and 12. I now believe the miscarriages have saved my life for the future. People like me who have this condition could have, hardening of the arteries, stroke, heart attack and vascular disease. I will be considered High Risk and will be monitored more closely but if that means having a healthy baby I'll take it.


Erin - January 19th, 2006 9:14 AM

You will only need heperin if your homoscystine levels are elevated. I am compound heterozygous (two different mutations on the same gene, rather than double mutation, or just single mutation). I am on FOLTX and baby aspirin. I am seeing high risk doctor for the first time. I'm having an ultrasound and am terrified, as this is where I lost my last baby, around nine weeks. I had seen the hearbeat that time too, so I am a wreck.


Kristina - January 21st, 2006 10:58 AM

Thanks to this website I'm learning more information. My doctor only put me on 1mg of folic acid right now. I'm going to the specialist for a consult and I will ask about the vit B6 and B12. since I have a double gene mutation as well, and elevated homocysteine levels. I want to ask when I should start the heparin, as I'm told I have to be on as well. I just hope I can get to my doctor in time since at nine weeks I had a bleeding problem that my doctor thinks was contributed to MTHFR. Anyway, I want to wish you luck Erin on your ultrasound. I know it's easier said than done, believe me, but just take a breath and relax. Now that they know how to treat you, everything should work out fine. I have to believe that myself, b/c when my husband and i start ttc again, I'd like to be holding my screaming baby for Christmas. and gigismith, I believe the same thing, that my angel boy saved my life for the future, and also in the present time b/c if i hadn't gone to the hospital when I did, I could have also died b/c of an Infection I got. I also believe that I'll do anything in order to ensure my pregnancy goes smoother next time. My doctor said I'd have to have more ultrasounds. about every 2 weeks from week 12. i'm happy to do it. i get to see my baby grow that way. My thoughts and prayers go out to each one of you. I hope everything works out for us all.


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