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. :) ↑
Amy...Like Kristen we are doing the IUI today as a matter of fact because my husband has slow motility and I have a scarred cervix from pre-cancerous cells removed. I am on a different dosage then the Folgard. I take 500mcg B12 100mg B6 and 1000mcg Folic Acid 2x a day. Plus low dose aspirin. My Dr seems to think because of the MTHFR with elevated homocystine leves that is the reason for my past miscarriages. But of course we still run the risk of having a chromosome problem ending in M/C too. If anyone has any questions for the infertility specialist let me know. I see Dr Lane at Kaiser in Vacaville, Ca. I live in Napa. ↑
Erin, I am new to this board after searching for info on MTHFR. I was diagnosed in Dec. with homozygous C677T ( the really bad one) and believe this is a cause of infertility. I also have an 8 year old but ttc unsuccessfully for years. I had one mc (6 wks) before getting pg again and having a normal term delivery with post partum hemorraging. I recently mc 2 months ago and had the tests done just because I work in the medical field and needed some kind of answer. I was floored when my results came back. It explains so much, I truly believe that as awful as the mc's were it is good to know about this coag disorder. Thank you all for sharing your experiences. It is comforting to know that I am not the only one out there that has this mututation. ↑
Thanks for your opinion. Since you seem to know so many stats about MTHFR I would have to think you missed reading the INTERPRETIVE REPORT that comes from the testing facility. Tell me why then are people who have homozygous C677T mutations or who are compound heterozygous C677T/A1298C mutations have a 2-fold increased risk of having a baby with complications of spina bifida and anencephaly? And yes the MTHFR mutation is seen in preg complications, generally combined with other coag disorders or autoimmune conditions. If you are hetero for one mutation (A1298C allele) then yes you are fine. But if you are hetero for C677T mutation you are still at increased risk of having a baby with these complications. The link between MTHFR mutation and fertility is my own opinion. It makes sense if your DNA metabolism is not functioning properly and if vascular/cardiac symptoms are present that fertility would be compromised. I am not a physician, but if you are one, or a medical researcher, you need to spend a little more time researching the mechanism of folate metabolism before posting again....... ↑
pattiedto babyonboard: AGE is the easy answer! After suffering 3 m/c's(ages 39,41 &42) that was the pet answer I was given. My last pregnancy was using the donor egg of a 26 year old and still resulted in an m/c.
I was diagnosed w/ mthfr after the 2nd m/c but, my RE didn't make a big issue of it just given extra folic acid & baby aspirin. After my latest m/c in 9/05 my RE dug a little deeper and found I have compound mutations. I do not find these ladies paranoid at all. We all desire motherhood and are dealing with this
frustrating obstacle known as MTHFR! ↑
Thank You Loraine and Pattie!!! And I know a woman who delivered a very healthy baby girl using the Levenox shots and the Vitamin treatment for MTHFR. It's not a made up paranoid thing. Because I have this double mutation my fertility Dr advised my parents and brother to be tested because they may have an elevated risk for stroke and other cardiovascular problems. PS The IUI went well and now we wait until Feb 13th to see if we will have a little pumpkin come October. Best wishes to all! ↑
LISA TO BABYONBOARD13-----WOW WHO DO YOU THINK YOU ARE?! have you experienced m/c or a problem pregnancy? if you haven't how dare you come on here and call us paranoid! if you aren't having any trouble and you don't believe that m/c are related to this condition why are you even on here???? This is a supportive website not one for you to get on and start judging those of us on here. You have no idea what most of us have been through! We have gone thru the testing and are being followed by high risk specialists. why would high risk specialist bother to test women with multiple miscarriages and problem pregnancies for mthfr if it isn't a cause of these things. I think you had better do some more research or stay off of this website. you must be having the perfect pregnancy to be coming on this website and spouting off like this. Everyone wants to blame everything on the AGE factor----bull. i know lots of women that are over the age of 40 and have had healthy babies so don't start on that. you must be very young and perfect. ↑
Erin--I don't think they know everything that MTHFR causes. my high risk OB said it is new within the last 10 years. Are you going too an ob specialist or a hematologist (blood spec.)? i have had one m/c after a severe toxemia birth at 27 weeks. I have a double mutation and have been to the hematologist but i don't have any answers because the OB office failed to send over the labs, but he says it is such a new condition that he had to do some serious research and would call me early this week. i know that my OB is testing habitual m/c and problem preg. for this . i was told my toxemia and all the disastrous mess that occurred were because of MTHFR. ↑
Babyonbord13: Its true at one time in like 1998 that mthfr wasn't linked to multiple miscarriage. However times have changed and there is not denying it. My doctor specificly told me that the I am homozygous two gene mutation and that it has been linked to miscarriages and that they will do what it takes to treat it. As far as age factor my first miscarriage I was 26 years old. I was barely 19 when I had my daughter and I almost lost her at the end of my 5th month. I didn't know I had mthfr double mutation until my 3rd miscarriage my fertility specialist tested me for it. Don't come here saying its psychological. ↑
Lisa: Hello. I was diagnosed with MTHFR 2 gene mutation. My fertility specialist ran a test for it. When I had a discussion with my regular OB he didn't know much about it. I am not suprised that your OB doesn't know much about this, but the specialist you will be seeing should know more about it and hopefully get you though a successful pregnancy.
I wish you the best.
Rae ↑
Hello ladies. I am so glad to have found this sight. A few hours ago I found out some news that even my OB thought was unlikely. See, I have 4 healthy children (8 1/2, 7, 5, 2). Then we were shocked to find out that we were pregnant last March 05 with an unplanned baby #5. After we got over the shock we settled in to excitement. I never had any problems before - no known miscarriages and 4 healthy pregnancies. When I went in for my 8 week ultrasound the baby looked 6 weeks and we soon found we had lost the child. Devastated. The Dr said I was "getting older blah, blah, blah" (I was 35 at the time. Then I conceived in November and miscarried this December 05 (I was not as far along as the first time.) The first was a D&C and we did not get it tested. The second was a regular bleed out but nothing was available to test. I decided to have the suggested "1st round" blood work done on myself and that all came back normal. The Dr. suggested some further testing "the 2nd round" and just because it was part of this 2nd round, genetic testing was done on me. The Dr. never thought anything would come back from this based on my history. Tonight my OB called me at 9:00 pm (odd) to say that I have the MTHFR double abnormality of C677T and A1298C. Shocked. After reading all the Dr. jargin on many sights and squinting at the hastily taken notes from my OB conversation, I was annoyed. I am so thankful to find you all. I know my story is different than most, but that just shows how varried and different this thing can be for each woman/family. After reading the enteries I am struck by and reminded of the miracle of life in general. I do not know what things would have been like for us if I had known about this thing before we started having children. Now I need to learn all I can for myself, my children and then decide if we will try for another child. My husband and parents will be tested soon and we have to see specialists. Babyonboard13 should just shut it. She violated the "Terms of Use" for this forum as far as I am concerned. Continue on ladies, stay strong, God Bless. I am inspired by you. I will let you know how things go. ↑
Hi, I would just like to say I had two miscarriages before discovering I had one abnormal mthfr gene and my husband had two. My doctor said i should take 5mg of folate and that was all. I decided to do research and discovered it was beneficial to take B6, B12 and baby asirin, for homozyges but i am the other, the miscarriages really got me down and i have never really recovered. I was determined to do everything in my power so i wouldn't have another miscarriage, so i thought if these vitamins do no damage why can't i take them anyway. I asked my doctor and she said it was fine to take the vitamins because they are water soluable and everything that is not used by your body you pee out. so that is what i did with my next pregnancy, i took the vitamins and baby aspirin and i now have a healthy, smart, beautiful little boy 13 months. I am pregnant again and have just been to the doctor, i told him what i was taking and he said you should stop taking aspirin it causes miscarriage. I said to him i it worked for my son. anyway i freaked out again and decided to come on the web and do a little research. I think it worked for me anyway. when they examined the placenta from my second pregnancy they said it was like a spounge and i think this is because of the lack of blood flow {only a theory} My son has two abnormal genes ↑
Karen~ I am so sorry about your miscarriages (I have had 2 as well), but I am inspired after reading that you now have a healthy baby. We are getting ready to try for the third time, and it is very scary. I am surprised that your doctor told you that baby aspirin would cause a miscarriage - both of my doctors (my reg. OB as well as my new specialist )recommended baby aspirin. And actually, my OB recommended it before we even knew that I had the MTHFR issue. So...who knows right? I realize that doctors do know a great deal; however, they can definitely vary in their opinions. I say go with your gut and best of luck to you. :) ↑
Hi Amy, I remember what it felt like when i was trying for the third time and i was scared but now i really beleive there is more and more answers. You are lucky you have a good doctor, all of the doctors i have seen haven't heard anything about mthfr mutations and the genetic councillor i went to said it wasn't the cause of the miscarriages. Everything i have learnt i have learnt from people like you. Anyway take care of yourself, i am sure you will get there but i know what it feels like. One of my friends had an eptopic pregnancy about 6-7 years ago and she has polyps on her other tube the doctor said she wouldn't be able to have children, she is now pregnant with her third child. The same doctor delivered her second child but she didn't say anything to him. ↑
To Lorraine.. aren't you the same person who posted you had 11 abortions in 2 years and caused alot of controversy on this forum.. Because alot of the terms you used in your answer was the same thing you said to everyone else about being on a "high horse", judging people and being so perfect... does it ring a bell. You posted this topic on all the forums and the site had to remove you... remember... Looks like you're causing problems again... Please be aware ladies... ask around.. you'll see that "Lorraine" is a fake! You know what Lorraine.. alot of women do come on here to talk but what is the story with you? Why do you feel the need to cause problems. Can't you find something better to do or are you hurting that much that you're glad to see that these women are in pain? These woman don't need to be stressed out more than they have to. And don't write back calling me all kinds of names because I know you're a fake. Not like last time Lorraine, you won't fool me. Honestly ladies, I'm just trying to warn you. If you ask around you will know what she's done. I hate to see people on here do this kind of thing. I'm not hiding behind a fake name.. ↑
