hi everyone i have been reading this page all night tonight and its great! i am so happy to find you all! i was diagnosed in 2005 after having four m/c's with the not so great mthfr, c677t, (+ana) heterozygus, also the 4g/5g... homocystine normal though..i have had two normal healthy pregnancys but they were when i was 20 and 21.. i am 29 now my children are 6 and 7..my first question to the docs when finding this out was how did i have the girls with such great pregnacys and now this out of the blue they said cause the older i get the worse the mutation gets (as in how much the blood is clotting) all m/c were very early with one lasting eleven weeks listened for a heartbeat was not there, the baby was measuring 10 wks i had an dnc tested the baby and it also had the triploid kariotype problem which is just like the trisomy but with an extra chomsome in every cell.. very rare and crazy!! they say that that does no link back to the mthfr but who knows.. so i have had an iud in placed for over a year and recently taken out in october.. we want a baby and thought we would give it a go i have been tracking my cycles ,,, i think i have that down to a science.. lol.. but no sucess on a possitive test??? so frustrating... i am on 1 mg of folic acid, 1- 81 mg of asprin and a prenatal vitamin every day.. i recently went to see my doc wondering if i needed the heperin inj before i had a possitive or after she was not syre and is consulting another doc in the practice... if any one has any info that could help me out please please let me know..... ↑
aaimmskii, welcome! I would strongly push for the heparin (actually try to get lovenox--it's safer) and stay on the baby aspirin as well (it gets into the placenta to help with clots there and the lovenox does not). Stay on your prenatal but you need to up your folic acid from 1mg to more like 4mg. I take 5mg daily and 1 just isn't enough. I'd also add the vitamins B6 and B12. 3 of my doctors told me to do that as it helps the folic acid metabolize. Good luck to you!!! ↑
Hi, I posted a while back re a few articles stating that MTHFR can cause chromosome disorders. I would first like to say I'm sorry if I've upset anyone, like you all I'm just looking for support and answers. I actually found a company that does genetic research on the MTHFR gene and emailed them. A doctor emailed back and thanked me for my 'intruiging' question. He said that while studies do find a high # of mom's with MTHFR having babies with Downs, he doesn't think it CAUSES the Downs. 80% of trisomy 21 babies do not survive the first trimester. He states that there could be a greater likelihood of survival amog thse babies who inherit these polymorphisms (MTHFR). Basically, due to these metabolic abnormalities of folic acid/methylation metablism there might be some 'selective advantage' to survival of these babies. So basically I was lucky to have this disorder or I would have run a higher risk of losing my daughter. I hope I don't or haven't upset anyone with my questions or information. To be honest, I think my daughter is more than perfect! Anyone would be lucky to have a baby like her ~ so if you do find out your baby will have a genetic disorder its Ok to cry and feel shocked, but in the long run you will know how lucky you are. Again I'm sorry if I've upset anyone in any way. ↑
I have had two quantative HCG's, the first 197 and the second 579 which is great! Progesterone level is good too! My OB is out of the office this week and her partners do not feel comfortable dosing lovenox for me. They wanted to do heparin. So now I am being referred to a maternal fetal medicine physician. Oh the kicker with this one is he is leaving to go out of town today at 4:00. I am hoping he can review my info and make a recommendation before he leaves.
Sheilabeth, thank you for the information. Your little girl sounds like a sweetie! ↑
stefkay~i have been trying to get my prescription of folic uped but they have not gotten back to me,, so last night i uped it myself lol i took five of my one mg pills its just the folic so it should not hurt lol ~bjohnson~ my homocysten two years ago when i had all the miscarriges was 12 which was within the aloted reange on the lab sheet that i have.... who knows it may have changed.. problem im having is my ob does not know much about this gene disorder so as i ask questions they say they are researching it.... sooooooooo im very thankful to have you all whoi know so much more than them lol i as well continue to try to research online as well~shielabeth~ do you mind if i have the name or email address of the place you talked to i would love to ask them some things..... thanks to all amy ↑
aaimmskii, that is perfect...I was prescribed 1mg pills as well and my dr. actually told me to take 5 daily. The pharmacy explained that they don't even carry a 5mg pill and that is the way I have to take it to get the full dose, so maybe that is why they haven't gotten back to you because they can't find a 5mg pill! I know my doctor wrote my first script for a 5mg pill and the pharmacy took forever to fill it because they were confused as to what she was talking about! ha ha....anyways, just do it that way but ask your doctor to up the amount of pills in each refill. I think i get like 150 or some pills in each month supply. ↑
It has been a while since I have posted here, but have found myself in a dilema that I am looking for a little advise for. I, too, have MTHFR, and have exprienced a couple losses with it. Live in a small town in the midwest and have to drive a half an hour to do all the ultra sounds, and have that on "tele-confrence" mode with a neo-natologist from a town 2 hours away. It is so frustrating around here, as no one knows anything about this, I have to rely on a dr. that is 2 hours away to communicate with my dr. that is a half an hour away, and I am usually the one that tells them things they do not know. My husband and I finally have decided to try again, but I am just not excited at all because of all the headache that one has to go through to have a baby. I really want another baby of my own, but it is so hard to keep fighting the battle when there are so many speed bumps in the way. I guess what I am asking is how are you all able to continue with the quest for another child? I know that my situation is not as challeging as what you are all facing, so I feel terrible asking this, but I really feel like I need advise from people who have been there, and understand what is all involved in our situations. Thank you in advance for your help! ↑
Valerie28- For me, the continuing "trouble" in ttc and not getting the end result is hard. There are days that it isn't fair and it seem like there is so much more that I have to do then some other women. But, in the end, when I think about a little baby all my own and being a mom, I just can't give up. All the pills and appointments, time and energy, and not to mention the cost of all these medical procedures can take a toll on you. But, when that little baby is in your arms finally, it will all be worth it. I know it can be hard to think about starting all over and seeming like its a long road that you will never see the end of, but some day you will. There is an end and at that end is your baby. Just remember that you aren't alone, your husband is with you and you can travel that road together. Love each other and enjoy your sex life, whether it leads to a baby just now or not. It will happen. Knowing that he is in it with you can help. It's hard on him too, so communicate with him. My husband and I talk a lot about how we are feeling through this whole process, which really makes a difference. We let each other know when we are having hard and difficult days, so that we can support each other. No one else understands me, like he does. I'm sure its the same for you. I know its hard. But, in the end it will be worth it. ↑
Valerie28-I can't even begin to tell you where to start. that has to be so frustrating with the doctor being 2 hours away. I agree with TerraK your hubby is with you on this journey. Don't give up. It will be worth it in the end when you see your child or worst case scenario knowing that you did everything you could to produce a child. Keep trying hon. We're here too. It may only be a blog type forum but we're all there with you one way or another. It's scary but knowing that you have support can help. ↑
Valerie, I scrolled back to read your story again and wondered if you were ONLY tested for MTHFR or for the other common miscarriage causes as well (I think most of these are covered in a general miscarriage panel of blood tests). Did you also have other things ruled out such as having a look at the anatomy of your uterus (looking inside with a scope, not just by ultrasound) and have you had all of the standard hormone testing (FSH, LH, Estradiol, luteal phase, etc.?) Oh, and in your post I didn't see if you are homozygous or heterozygous for MTHFR. It sounds like you didn't have many answers or much help AT ALL on your losses and I am very very sorry for that :( If you were diagnosed MTHFR did you treat either of your losses with the regular protocol (folic acid, aspirin, B vits, blood thinner and progesterone?)....if not, I am pretty sure that you can go on to have a healthy baby if you try again and do all these things. Also, were either of the fetuses tested in your d&c's and did you get pathology reports back to rule out chromosomal abnormalities (because these are often flukes)....Good luck to you and keep trying! Don't give up :) ↑
I have a question.... For those of us with compound heterozygous and homozygous MTHFR who have children. Do we need to have some genetic testing done on our children to see if this genetic mutation was passed on to them as well? Would it be helpful to have this done in case they too need to take some folic acid supplements? Or just so that they know as adults what they are up against? Has anyone heard of this being done? ↑
Has / is anyone experiencing nausea from the medications, (progesterone, folic vitamin, lovenox)? I'm trying to figure out if this is pregnancy symptoms only or if the common side effects of the medications are increasing the symptoms. I'm doing my best to keep my eye on the prize but this last week has been miserable and I'm beginning to wonder how others have gotten through the first trimester. Any feedback would be appreciated. ↑
jennifer, I have to admit the first trimester for me was very very hard. I had so much anxiety that people who didn't even really know me were telling me to relax. I about lost it a few times, but I had been doing acupuncture since about 3 months prior to conceiving as it helps fertility and my acupuncturist started having me come in weekly and even was nice enough to not charge me for many of those visits because she wanted me to get through this pregnancy so badly. I also started meditation and spent some time each afternoon lying in bed trying to relax. it helped some, but the hard thing about this anxiety is it only got worse for me when I started worrying about the anxiety hurting the baby. It's insane and a vicous circle, lol. I also had a wonderful doctor who scanned me every 2 weeks so that helped and he explained that he does that with his miscarriage patients because it actually has been shown to benefit the outcome because their stress levels are lower. Made sense to me and helped tremendously. Just try any relaxation things you can! Also I had nausea this time and never had it any other pregnancy. I still don't know if it was due to the progesterone or not (none of the other things should cause the nausea, but progesterone is known to cause it). Whether it was the meds or actually my body it doesn't matter because the baby is fine so far at 17 weeks! Hope everything continues to go well and I wish the best for you too!!! :) ↑
Jennifer- I would agree with stefkay and say that it could be the progesterone making you a little sick. None of the other medications would cause morning sickness. However, I think it's your little bun in the oven making you so sick. Which is great :o) I was taking progesterone during a pregnancy that was doomed from the beginning and I didn't have morning sickness. Just get as much rest as you can and take it easy... good luck! As for my last post... I called my son's pediatrician and asked if I needed to have some genetic testing done on my son. He was going to look into it and get back to me. So, I will be sure to post his answers when he does. ↑
jennifer- the folic acid makes me sick. it gives me severe indegestion. the only reason i'm figuring it's this and not any of the other meds is that i take it at 4 different time periods throughout the day and i always end up sick about 30 minutes after taking it ↑
stefkay-thank you, no, they did not test me for all of those, needless to say I was not impressed with the attention that was given to me by the doctors. I actually have made an appointment that will be on the 15th of this next month to go over our "plan of attack" for my next pregnancy. I made the appointment to help get my dr. back on track with my case, but now I think that I will bring this other stuff up as well. I know that there is a reason why I found you guys, and this may be one of them. Hopefully after my appointment, I will have all my questions answered and will have what I need to go on with another pregnancy. I just really hope that everything will work out. They did not want to do any tests on my first miscarriage, thinking that it was just in line with the statstics, and then the second miscarriage, by the time they were able to do the emergency sugery, there was no baby left in there...it took me a long time to get over that one, let me tell you, but I can safely say that I am ready to move on. I will keep you posted on how everything turns out! Thanks again! ↑
hey guys....i know alot of you seem to have said that your dr didn't really play up too much on the mthfr gene's. well i went to the neurologist and this is the guy who saw me after my strokes. he totally blew me off. needless to say he is telling me not to worry too much about taking the asprin or the folic acid. basically told me i'm fine and not to worry about this. doesn't want me on lovenox because as he put it it can cause break thru bleeding and cause more problems then it's worth. meanwhile the fetal medicine dr i'm going to told me that i should be on it. and i don't get it he tells me that there's nothing linked with the mthfr gene's and miscarrying or strokes!!!!!!! what's up with that?! i am just so exasperated right now. so anyways they rescheduled me for the echo and the cardiologist til 2/14. idk what i'm supposed to do at this point. i'm keeping up with the med's that my dr told me to take. please pray guys. i'm really just so confused right now and upset. thanks ↑
tburd.... your neurologist sounds like an idiot... he probably doesn't know anything about MTHFR so I would ignore him. I would definitely go with your fetal medicine doctor because he or she deals more with this kind of thing than a neurologist does. As for the MTHFR not causing miscarriages or strokes.... from what I have read in several places is that it does. The miscarriage part obviously seems to be a common thread amongst people here in this forum with MTHFR or we wouldn’t be talking to each other. It is clearly a big mistake to say that it doesn’t cause miscarriages. No wonder your head is spinning. Please take some time to relax and clear your head of all of this confusion. It's not what you need right now. I think MTHFR effects people differently to some degree and that doctors and scientists still don't know enough about it. I think they are still missing some pieces to the puzzle. Good luck to you tburd and I will keep you in my prayers! ↑
OMG Tburd, your neurologist is an absolute quack! Like laura said, please listen to the fetal medicine doctor. Seriously most dr's don't know a lot about this unless they HAVE to for some reason. I'd think a cardiologist or hematologist would know more than a neurologist. I don't know. Some doctors are just idiots. My primary care doc is wonderful and I love to see her for colds and whatnot but when I told her about the MTHFR they found she didn't even KNOW WHAT IT WAS! Can you believe that? The funny thing is that the treatment for it is absolutley HARMLESS. an aspirin a day is good for anyone and lovenox is very low risk. That came from a doctor who heads a fertilty clinic and specializes in recurrent loss. I think he'd know a bit more about it than a neurologist. Sheesh...sorry, hormones are a raging tonight so I had to rant, lol ;) off to bed for me! ↑
Ya I agree ladies, he is an idiot lol. I had mentioned a geneticist to him and he told me that looking into it will only find more problems. lol what a jerk. so 2 more weeks til my checkup and the cardiologist. thanks for your support guys. :o)
p.s. aren't raging hormones great?? i work at a call center answering phones all day and there are like 5 of us there that are pregnant...we think that there should be an option to press 7 if you want to speak to the raging hormonal woman lol ↑
Well, after about 4 days of reading through these posts, I finally reached the end. Thank you all for the information, the encouragement, and the support. My story, 1DD 20months, and perfect! I had a m/c Dec 13th (and D&C on the 14th) Intrestingly, thankfully, amazingly? not sure which word to use, my Doc tested me for 10 different things, many of them mentioned previously. At anyrate, turns out what brings me here is the wonderful MTHFR gene we all have in common. I'm homozygous for A. I just found out last week, and tomorrow am scheduled to meet with a hemetologist. I have no idea what to expect. I read these boards one minute and am relaxed and another nervous. I have a million questions running through my mind. We are ready to ttc and th timing is right, but I can't start until after I have some more answers. Hopefully, tomorrow will bring some of those. I've alraedy upped my FA intake, and the Doc gave me Neevo...someone mentioned it. I do wonder how it compares to Folgard, which seems to be the most common. I guess my question for right now, though, is women who are homo for A, it seems I read in one post this was the lesser evil of the 3, but it seems to me all homo A ladies have to take daily shots of blod thinners. Is this the case? Anyone homo A without the shots? Thank you all again, I look forward to getting to know you all.... ↑
fourtennessee-i wish you the best of luck in your research. it seems like there is so much to learn and so many variables of the mthfr gene. please keep us updated on how it goes! ↑
Well I went to the hemetologist yesterday. My homocystine levels are normla, for which I'm thankful. I'm a little confused though, and not sure what to do. He didn't seem overly concerned about the MTHFR mutation, which was a relief, but wonder if I shouldn't be more concenred. There is a history of blood clots in my family (Dad, Uncle, and grandfather) but he felt their clots were due to other factors, uncle had cancer and the chemo caused the clots,dad had heartattack and the surgery caused the clots? I feel he knows his stuff, but at the same time I wonder if he's not a Doc who does't give much thought to the idea of MTHFR causing/aiding in m/c. So what to do now? he said to ttc with no worries. I will of course, on my own, take extra folic acid...but I really don't want to go through this again. (I know
I'm preaching to the choir, none of us want this.) So I guess I got good news, but still wonder... ↑
fourtennessee-i know all too well what you're going thru right now with the dr not feeling like it's linked with m/c and also having normal homocystine levels. i would keep up with the folic acid and vitamins... and again. good luck ↑
fourtennessee... In my opinion, a good dr will try to provide relief of stress in a stressful situation. Studies have shown that early and frequent sonograms for women who have had recurrent pregnancy loss increase the chances of a successful pregnancy just by giving women piece of mind. If you are the type of person that operates at a higher lever with this piece of mind than I believe you should be your advocate and insist that you get the type of care that brings you within your comfort level. When our specialist explained he thought folgard alone would provide me with what I needed to carry a successful pregnancy, we responded that we were reluctant to carry any guilt if I were to miscarry again, knowing there were other medications I could take. Additionally, if it came down to it, we would find another dr who could give us the care we felt more confident about. He understand my point completely and started me on the "proper" meds, (progesterone, lovenox , folgard and baby asp.) Even in the medical world, you have to consistently monitor your own care. Drs are not perfect, nor should we expect them to be. I think it's especially true since most of our Drs have never experienced what we are going through. ↑
Hi everyone, I'm new to this site. I didn't have a miscarriage, but I did lose a baby at 26 wks. I didn't feel her move for a day, so I went to the hospital, and sure enough, they couldn't find a heartbeat, but I still had to have her. Her name is Chloe. This was a month ago. Until today, they couldn't find anything wrong w/me. They've told me nothing was wrong w/me or her or the cord or ANYTHING. Well, I went to see a high risk doctor today, and it turns out I too have MTHFR. They don't know it that's what caused it, though. He told me to take the foltx and baby aspirin and to plan my next pregnancy, and make sure that I was on the foltx at least 3 months before I get pregnant again. He told me the injections were optional, completely up to me, that there was no hard evidence that it even works. ??? Should I do them? ↑
