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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.

Kristina....My Dr told me to call him as soon as I get a BFP and then we would start the Heperin shots. We are doing IUI on Friday. It worked the last time now let's just hope that the baby aspirin and Vitamins are enough to get the baby started until I get the Heparin shots.

Hi Erin,
First of all - congratulations on being pregnant - please keep us posted on what is happening.
I had a miscarriage at 11 1/2 weeks (baby only measured 9 weeks) in April and a chemical pregnancy last month. The doctor took blood tests and found that I have a low/medium risk for blood clotting and said something about me having a MTHFR mutation. He recommended I take baby aspirin and folic acid every day and is sending me to a specialist. Does this sound like I have a heterozygous mutation? I have read so much stuff on the internet and am confused.
Praying for a healthy pregnancy,
Katherine

Low/medium risk suggests that you are either heterozygous (one defect) or compound heterozygous (two different defects). Homozygous (two of the same defects) is the more problematic. I am currently ten weeks. I saw baby and heartbeat at nine weeks, but as you can well understand, I am not out of the woods yet and still very frightened. I do have tons of morning sickness, though... although it's easing up a bit now. Fingers crossed. I have an ultrasound on Feb. 10th for nuchsal translucency.

Hi ladies. I am new to this site, and Erin - what a joy it was to read through all your entries and to follow you into this pregnancy! Best of luck to you. My heart goes out to all of you on this forum, and it is such a relief to know that I am not alone. I had my first m/c back in April, and then I had another one just a month ago. Katherine - when I read your entry, I found your history so strangely similar to mine. With my first m/c, I started bleeding at 8 weeks; with the most recent, I was not bleeding so I thought that all was okay. However, I soon found out that the baby had no hearbeat. I had a D and C and had pathology done on the baby. My husband and I were even more upset when we learned that the baby had Trisomy 22. So although I did not have a chemical pregnancy, the timing of our losses is uncanny. I then tested positive for one mutation of the lovely MTHFR. Needless to say, this has all been a roller coaster. Has anyone of you had the awful experience of finding out that your baby had a trisomy disorder? The irony of all of this is that I am a special education teacher...I see young children with so many issues each day. :( My next question is about Folgard and the prenatal vitamin. My new specialist told me to take Folgard instead of the prenatal...is this the advice that any of you all received? I guess I should talk to him again, but I am so nervous about absolutely everything these days. Thanks to anyone who has some answers (or even if you don't have answers..it would be great to hear from you! )

Amy...Hi to my fellow MTHFR. My Dr said the prenatals are not needed because it's the Folic Acid that is the most important. My Dr too told me to stop the prenatals. My first miscarriage I started spotting at 5 weeks until I had a natural miscarriage on my own at 7. They think it was a Blighted Ovum because they never saw a sac. Then my second pregnancy was ended at 9 weeks because there was no development in the 2 sacs. They gave me Cytotec and I miscarried very painfully at home. So testing was done on the tissue. They did the blood tests on me and found the MTHFR with a slightly elevated homocystine level. We go on Saturday for our second IUI and hopefully with the Folic Acid and Vitamin B's and baby asprin it will be enough to start the pregnancy.

Hi Gigi ~ thanks for the fast reply. :) And thanks so much for the info about the Folgard vs. prenatals. That makes me feel much better. I just read up a little bit on IUI, as I am very new to all of these acronyms. I so hope that it works out for you. My doctor told me that we could start trying again as soon as I got my second post D and C period. So sure enough AF is here for the second time, and I am now very excited but filled with dread at the same time about the future. Is there a benefit to having IUI even if you have conceived the good old fashioned way in the past? I am wondering if we should be looking into something else. I am just desperate for 'the answer' I guess..and I suppose that for many of us here, there might not be just one answer. Thanks for listening!

Hello,
I read the post between Erin and Trish about homocysteine levels. How you were told by a specialist that if you level doesn't test high that it wouldn't be the cause. I have been trying study everything I can about this I read of a study done about caffeine causing a raise in the homocysteine level. And that its affect with people with mthfr even tea can affect the level. Which indicated to me that levels fluctuate. So how do you know if at the given time what your levels are if its possible it can change?
I hope the best for everyone here.
Thanks,
Rae

Good Point! Because I read that just having a miscarriage can cause homocytine levels to rise and I had my blood work done right after the miscarriage. My Pharmacist said to truley know if you really have elevated levels you need to take a break from the treatment and then be tested again.

Gigismith- I have been trying desprately to find more information about what can cause homocysteine levels to be raised so that I would avoid those things. I recently read that some medications and herbs can also raise the levels but the site did not specify on what they were.
If anyone finds more information about this please post it.
Rae- 1 child 9yrs. 4mc's
Dec.03,March 04,June 05 &Jan 06.
before last mc at 10 weeks I was on Heparin,prometrieum,folgard,prescription prenatals and 81mg of asprin.

I was diagnosed with mthfr less than a month ago. i apparently have a double genetic mutation. i was immediately placed on Lovenox ( a form of heparin and a B-complex vitamin). Then I was sent to a hematologist which since this is such a new condition that he would have to do more research and more labs. i see a ob specialist and she was the one who said we needed to check into things a little more. i guess i should say that sept. 2003 i had severe toxemia, with pulmonary edema, congestive heart failure, kidney and liver failure. i delivered a 27 week preemie weighing in at 1 lb. 10 oz. the toxemia and premature emergency delivery of my son was due to this disease, mutation or whatever we are calling it. i had a lot of clotting that i passed at 20 weeks, given rhogam and everything stopped. at 26 weeks and 5 days the specialist told us the placenta looked abnormal and we would not carry to term. little did any of us realize that 2 days later we would be in a fight for both our lives. my son is a 2 yr old toddler with immune and anxiety issues, but praise God he is normal in every other sense. i am 22 weeks pregnant now and quite frankly scared. they found the mutation at 19 weeks. were you told to have your parents and siblings tested. i know we need to have my husband tested to make sure he isn't a carrier to be able to know if our little ones will be affected. i almost fell off the table when she told me that she found the problem with my 1st pregnancy. that my placenta clotted off and died causing the toxemia and they thought they caught it in time to save our little girl. i know at least two girls with this problem all have had miscarriages and one has had two children since being diagnosed, unfortunately i haven't been able to get in touch with either. lisa

So sorry to hear of all you have gone though! Hopefully the Lovenox will do the trick this time and you will go to term or close to term. Best of luck.

Hi all, this discussion has been really helpful to me. I've just found out I have compound hetero mutations. Have had 2 m/c in the last year but all other test normal. Homocysteine levels just came back normal, but Dr has me on folic acid anyway. I'm undergoing IUI and hoping for the best. My questions are: 1. what doses of B12 and B6 are you all taking (my dr just prescribed folic acid alone)? 2. did your partners get tested? I wonder if my homocysteine levels were normal and the problem wasn't the environment (i.e. my body), then maybe it was in the baby's DNA. If my husband has one or more mutations, would that cause m/cs? If so, I wonder if we should have genetic counseling or go to IVF where they can test the embryos prior to implantation. Any thoughts from you all would be great. I'm 39 and running out of time! Thanks.

Hi ~ I just checked my Folgard prescription for you and unfortunately it does not specify how many mg of B6 and B12 it contains. But I do know that this specific supplement has the 'recommended' dosages of folic acid and the other Bs. Also, let me back up and say that I am sorry for what you are experiencing...and I do understand, as I have had 2 m/c's myself. My husband has been tested; his chromosomal analysis appears to be pefectly normal. Even with his 'normalcy' our last baby tested positive for Trisomy 22 (we had pathology conducted on the 2nd baby but not the first...I now wish I knew about the first). However, the doctor told us this was a complete fluke and that 50-60% of all m/c's end b/c of random chromosomal issues such as these. I hope that this helps you somewhat...please keep us posted. ***Question for you: I'm wondering if we should also try the IUI next time. What led to your doctor's recommendation of IUI? Thanks....best of luck to you Kristen :)

HI Amy, I just looked it up. Folgard contains: folic acid 800mcg, vitamin B-6 10mg, vitamin B-12 115mcg. "Why include vitamins B-6 and B-12? Taking a folic acid supplement can mask a B-vitamin deficiency. Folgard™ includes vitamins B-6 and B-12 to help ensure this does not occur," says one drugstore website. On the IUI question, we did it b/c my husbands sperm counts and motility are low. In general, it just increases the odds that any given attempt will succeed by getting sperm and egg as close together as possible. It worked for us the first time we tried it (tho ended in m/c). It's so hard to know if we are just experiencing "bad luck" or if we try IVF where they can do genetic testing prior to implantation. My dr doesn't think the MTHFR mutations are a likely cause of the m/cs. I'm getting an IVF consultation in 2 weeks and will post the advice I get, if people are interested. Good luck, everyone!

Kristen ~ Thanks for the info. My doctor does not think that my single mutation is the reason for my 2 m/c's either. I have also been tested for lupus, diabetes, blood clotting factors, and a host of other potential causes. Have you been tested for these as well? It's so frustrating not knowing 'the answer.' Please do post any info. that you get about the preimplantation embryo testing...we are thinking about that as well since our last baby had Trisomy 22. Thanks again...I wish you the best. :)