Hi Ruth...first, I am very sorry for your loss. I know sorry doesn't help, as it's one of the most miserable experiences. Unfortunately, I don't think this board is as active as it once was so I don't know how much of a response you will get. As for taking the shots or not? I have never had to have them, and at this point, it looks as though I will not have to. However, my thought is, you have to do what makes you feel the most confident based on conversations with your Doc, research you personally do, and I think, what your gut says. The good thing, from what I understand, is the shots do not seem to harm the baby (correct me someone if I am wrong and there are risks) I am not sure how painful they are to you, but when I thought I may have to take them, I thought what is a little bit of pain for 9mo for a baby? Again though, I don't know if they do hurt, or if that really matters. I think the best thing you are doing right now is seeing the high risk doc--and it sounds like one that is willing to work with you and is open to your suggestions and questions. I wish you the best of luck in trying to decide which direction to go and I hope someone with a more similar experience can weigh in too. I find this all very itneresting. Take care. ↑
Ruth- When my doctor told me that I had MTHFR, he said that I would not be one that would have to do injections. I think women that have to have the injections have higher homosystein levels. I would say, my own opinion, don't take the injections unless you really need them. It would just be adding extra stuff to your body. From what I read on another site, the injections leave bruises because they are blood thinners. I don't know if they hurt or not. You might also want to talk to an endocrinologist about it. They might be able to offer you more information. ↑
ruth...from what my dr said when i talked to them about possibly having to go on it they said that the lovenox wouldn't hurt the baby. i lucked out and didn't have to start injections just keep up with the baby aspirin. i wish you the best of luck though.
on a plus note i finally got away from the idiots at magees! they scheduled me for another consult still had done no more blood work or anything! so i'm back to my reg. obgyn who first told me i had the mthfr genes. but we did more blood work and everything is at normal levels. since i hadn't really had a check up since i was 6 weeks and they thought i was now at 13 1/2 weeks she did an ultra sound....and found out i'm almost 16 weeks!!! YAY!!! and.....it's a lil boy! :O) i'm so excited about this!!! keep me in your prayers or your fingers crossed!! ↑
Hi, I am new here. I have had one pregnancy at 38, which ended up being a miscarriage at 8 weeks. Since then (a few months ago) I learned that I have 2 copies of the MTHFR mutation; c677t. I am taking baby aspririn, and 1mg of folic acid, and have been told to try again with just thi since my homocysteine level was low. I also learned that I have one copy of another mutated gene involved in clotting, and am currently being tested further by a hematologist to see if I have what it takes to break down a clot easily... This site has helped me a lot since I hadn't known about the importance of going to a hematologist. She was the most thorough, and the most kind and that was enough of a reason to learn about this with her after so many obgyns were divided on the issue of how much folic acid to take, when to take the baby aspirin, as well as on the blood thinners... Has anyone else here had a good outcome with just taking the aspirin and 1mg of floic acid? I asked her to check my folate to see how much of it ai have stored before taking more folic acid. My doctors seem totally indifferent to the question of whether or not to take more folic acid. I am in New York City at what is supposed to be an excellent medical practice. Does anyone have great doctors for this in New York? Thanks so much. I look forward to checking in regularly. ↑
LillyLeaf- I also have both copies and my levels are good, but my doctor has me on Folplex 2.2 which has 2mg of Folic acid and my prenatal that has 1mg. So I am taking 3mg a day, plus whatever folic acid I get from my diet. This is his standard treatment for MTHFR. You might want to ask for more and if they don't give it to you, buy some anyway. Make sure that you also have the B6 and B12 because they help your body absorb the folic acid. Folplex has the right amounts in it, if you wanted to ask for that. Hope all goes well with the hematologist. ↑
Thank you so much for your recommendation. I have discussed it with my hematologist who seems a little more caring than the obgyn, and she thinks that it couldn't hurt to take some more folic acid. That said, she also mentioned that I have tons of it in my system now, but that in general it is a hard thing for the body to absorb. She also said I have 2 copies of another mutation which relates to clotting - how the clots are broken down to be precise (something like - fibrinolicus, pai1, 4g4g). And, she said I have low copper. Does anyone else have this? If I undersatnd correctly, low copper would make it harder to absorb iron??Overall, to manage a next pregnancy, the consensus is to just stick with the baby aspirin, prenatal, extra folic acid (2 mg s in all), and see how it goes. I will find out if I am pregnant in about 2 weeks... How's everyone else doing? ↑
Lillyleaf- I'm glad that everything went so well at your appointment. Sounds like this doctor know what she is talking about. I don't really know much about the low copper and its affect on iron. I am anemic and so I have to take extra iron, but my doctor didn't say anything about copper. I don't have any experience with the other blood clotting issue, so I really can't say. Let us know in two weeks. Good Luck! ↑
I too have MTHFR and another blood disorder which I can't remember the name of.
My first child is now 11 yrs old. She was born prior to knowing any of this blood disorder info.
Then 8 yrs later I had 2 mc's. The dr did extensive blood work which showed the MTHFR and another blood disorder. She sent me to a Maternial Fetal Medicine Specialist who prescribed heparin during my entire pregnancy from 4 wks until approx. 6 wks after I gave birth. He said after getting pregnant, I would clot around the baby and then mc. The heparin causes this not to occur. He also has me taking alot of over the counter meds such as: B6; B12; folic acid; calcium; baby asprin; prenatal vitamin. Once on these meds I was able to have 2 more girls. The first one went to full term and the second one came 8 wks early. but she is now 2 and 1/2 and doing great!
I am now pregnant again and need to find a new dr who is closer by. This scares me because I have so much trust in the last one. I'm not sure how far along I am right now because I thought I was going through an early menapause. I could be anywhere between 3 and 5 months pregnant. So, I am playing doctor since I haven't found one yet that takes my insurance. I have left over heparin from my last mc which I have been taking. And ofcourse all of the over the counter meds.
Hope this helps some. You're not alone. I'll be praying for you!
Hi again,
I just found out at a doctor's visit that I am in fact pregnant. I had made the appointment with him becasue I had found his name on some medical studies on MTHFR. Thankfully, I felt we had good communication, and felt good about having him follow a pregnancy, but was still surprised to get a call from his office today that the bloodwork showed that I am infact pregnant. Whooah. Our "plan of action" will be the aspirin, prenatal vitamins and extra folic acid. He mentioned that there may be a need for me to take a theraputic dose of heperin for 6 weeks after a delivery since women can be at a greater risk for clotting then. He wants me to go back and make sure my hormones are rising as they should on Monday. I must add, that finding this out, after many months of research, the day after finding the doctor I actually like and feel comfortable with, kind of brings my attention to the fact that life has a funny way of working out sometimes. Even though I was devestated by our loss last time, I feel greatful to at least know that I have several clotting issues in terms of how that will affect my aging, and that of my family's too perhaps. After all that research, I am much better prepared to go through another loss, or to face any complications that might arise. The posts on this website have really helped a lot with this, and the sharing of the doctors recommendations has been really helpful. Hopefully it will all work out for us. ↑
LillyLeaf- Congratulations! I hope that all goes well with this pregnancy and you have a healthy little baby at the end. Keep us updated on how it goes. ↑
Wow. This thread has been chock full of information! I really appreciate it. Anyone here have compound MTHFR and ANA (antinuclear antibodies)? Would love to hear about your history. Thanks! ↑
Wow this thread is great but it is sooo long, it took my computer like 10 minutes to load it, lol. Cloud9climber, I have the MTHFR gene too and have been wanting to talk to other ladies. I'm going to start a new thread "MTHFR and other clotting disorders" Please join me there. ↑
just a quick update...i'm now 24 weeks along. Rory (boy) is growing great. I'm on bedrest now though. Please keep my niece in your prayers she has to go in for more blood work they didn't like what they saw and she def has some form of the mthfr gene :O( she's only 15 so at least she's finding out early...we're just nervous as to why they want more testing done....thanks guys! ↑
Another successful update... I am now 20 weeks along. (I tested positive for hetero compound - normal homosysteine levels.) Our perinatologist suggested I continue the lovenox injections, as well as the folgard, baby aspirin and prenatal to be on the safe side. She has seen deterioration of the placenta and slowed fetal growth as late as 30 weeks due to discontinued use of lovenox. This was surprising news to me. Things are going perfectly now that I've moved past the nausea and vommitting that plagued weeks 6-16. (Morning sickness can be awful - nobody told me that! I've still got another 3 lbs to gain before I'm back to my starting weight.) At any rate, I'm keeping my fingers crossed and wishing best of luck for all of us. ↑
Hi Erin..
I've had 2 m/c & my docs said i have MTHRF. I am trying to find out more about this. Did you have you 8 year old before or after your m/c?
i want hope that i will be able to have a child!!! ↑
SandyLand- MTHFR is not the end of the world. 17% of the population has some form of MTHFR. So it is very common. Because you have it your body does not absorb folic acid as effectively and your blood is a bit thicken than it should be. The way to deal with it is by taking a blood thinner and extra Folic Acid, B6, and B12. Your chances of having a baby are very good. At least you know why you had the m/cs and how to deal with the problem so the next time you get pregnant you will have a successful pregnancy. Read through the many postings here and you will see many women who have had m/c and healthy babies after MTHFR. Good Luck! ↑
Hi all. I am new here and notice that the board isnt as active as it once was. I am hoping that maybe more may start coming around.I am suffering from homocystinima (sp) The doc has never really said anything about mthfr but it really sounds like this is what I am dealing with. We have a normal healthy 4 year old little boy and I have not suffered any miscarriages. I am so sorry for the ones that have had one. I had to have a DnC because of some major unusual bleeding during my cycle. My obgyn put me on a birth control pill that was the highest dose of estrogen before the surgery to see if that would stop the massive bleeding. I developed massive clots that traveled to my lungs after the surgery and nearly lost my life the day before my son turned 1. They did tons of testing and came back and said that I would have to take cumidin for the rest of my life due to a majorly high homocysteine level. They said that i would have a hard time getting pregnant and keeping the baby. We havent even tried because it was like they still didnt know what was wrong with me. I was taking such a high does of cumidin (doc said it could have killed most people) and nothing seemed to be working. I know see that I need to talk to my doc again and see if we can take a different track! I hope this board stays active and I can continue to learn as I go! Thanks! ↑
Jessicansam- Welcome to the board. It is not very active anymore, but maybe it will be revived. Yes, it sounds like you need to talk to your doctor about MTHFR. You may also want to go to an endocrinologist and see if they might be able to help more. Don't let the fear or what could happen stop you from going forward and although the doctors say what they know, they are not always correct. You may find that once you start really trying, you get pregnant right away and your baby is perfect. Good luck and post/ask any questions you may have. I generally respond to most posts. :D By the way girls...how are your pregnancies coming along? ↑
thanks terraK. I am calling my hematologist tomorrow and trying to figure all this out. After reading everything from tons of websites I am even more convinced. I spoke with my GP and he is in agreement but wants me to go back to my hematologist. I am just glad to finally have an answer. I have been dealing with this for almost three years now. Yall have really helped! ↑
Hello all! I like many have just discovered your forum and have enjoyed reading all the posts. About me- I just turned 40 in June. I have 2 beautiful daughters from my first marriage, 13 and 9, with an early miscarriage in between them. I remarried 3 1/2 yrs ago to the love of my life, who is 34, never married, no biological children although he is an amazing father to "our" girls! We started ttc 2 1/2 yrs ago, I had an IUD taken out (bc pills have always given me unpleasant side-effects- lucky for me I now realize!) and we got pregnant within a few months, m/c at 3 months- one day everything was fine, the next I don't "feel" pregnant and its over. No reason. We had 2 more miscarriages in the next year, 1 again at 3 months and another at 4 weeks, both unexplained. We are currently going through IVF, (retrieval tomorrow!) and the preliminary bloodwork discovered MTHFR/homo- both genes for me. This discovery prompted them to call on a Sunday to give me a prescription for folic acid to be filled immediately. Their main focus was MY health- that I am at increased risk for heart problems and would have to be on extra FA for the rest of my life. They didn't go to much into the effect MTHFR was having on my pregnancy losses. As we got into the IVF process I didn't think much more about it until this weekend. I was convinced the m/c's have been because I'm old with old eggs but heading into retrieval I have 15 beautiful follicles and my RE says I have great ovaries and great FSH levels. But then, we have always been able to get pregnant, we just can't STAY pregnant so the MTHFR issue has been bugging me. I'm scared if we get pregnant about keeping it. The information I have gotten here with MTHFR and pregnancy and the info I have found elsewhere about MTHFR as a life issue make some sense out of my life, especially with so many people here posting about relatives being diagnosed with it as well. It made me think.... Did you know MTHFR symptoms not related to pregnancy include depression, anxiety and feelings of constant exhaustion? It is common knowledge in my family that the women in our family line (my grandmother, mother, aunts) are prone to depression and that seasonal sun disorder where everything gets really bleak when its cold and grey for long periods of time. When I get down, the first question out of my mom's mouth was always to ask if I had been taking my "B's"- she and my grandmother always pushed B vitamins and iron. No kidding- when I got married my mom's one and only advice to my husband was to pump me full of liquid Geritol and B vitamins when I got down, which she informed him, was inevitable. Funny, isn't it that extra vitamin B's are what is needed to combat this. I am interested to find out how the extra FA and B's affect my mood and my energy levels- I feel like I have been on the verge of exhaustion for years now. My mother died last year so I won't be able to let her know- she would have been fascinated- but my grandmother is going to get the lowdown to pass it along to my aunts and nieces. She herself had 5 m/c and 1 stillborn. Crazy. I wonder if I'll be able to get them to get tested....we'll see. I am already convinced that this is a family trait. So many things I have read on this board are similar to my experiences- easy, normal pregnancies when I was younger but so many unexplained m/c now that I am older, unexplained post-partum hemorraging after my first daughter was born, pregnancies that seem to be progressing normally then without explanation, no heart-beat. I'm sorry, I know this has been a VERY long post but I'm amazed at how everything seems to have clicked into place with this and I just wanted to share it with people who will understand. Many thanks- Alison ↑
Welcome Alison~ The energy thing will be helped a lot by the B vit. Interesting fact, most energy drinks have B vit in them. Because you are Homo for MTHFR, that means that both your mother and father had MTHFR, so informing some of the people on your father's side might be helpful to someone over there. Did your doctors say anything about taking a blood thinner of sorts? MTHFR is also a blood clotting issue. When I lost my baby it was because there were blood clots in the placenta and it wasn't able to attach correctly. My baby was 11wks 1day. You may want to ask about that. I wish you a world of luck with your IVF, hopefully you will be able to get pregnant and have a healthy baby. Let us know! ↑
hey guys...its been a while since i've been on here. more success on the pregnancy...i officially reached 35 weeks and he is still doing good. my blood pressure has been insane which the dr is not happy about. with my history of strokes though i don't really blame her too too much ya know? but things are good. my friend had her baby at 24 weeks along and little Ila Rose is doing amazing!!! (she wasn't due until 8/14 but was born 5/16!!!) things are going well here. hope everyone is doing good. ↑
tburd~ YAY! Thats so good to hear that your baby is doing so well. You are getting so close to holding your little boy in your arms! Its also good to hear that your friends daughter is doing well. Keep us updated! ↑
I came across this forum and I am posting because I am heterozygous MTHFR and have had 2MC's and after begininning treatment 1 healthy baby girl. I am considering trying again, but apprehensive. My previous treatment was prenate elite, 1MG Folic acid, and baby aspirin. During successful pregnancy I spotted a little in the 1st trimester, and at 34 weeks suffered mild preeclampsia, and PROM at 36 weeks after 2 weeks bedrest. I did not have any touble with blood pressure until after stopping baby aspirin at around 32 weeks. Went to Yearly OBGYN appt., Dr. wants me to start taking ababy aspirin every day and a prenatal vitamin. Forgot to mention that early in successful pregnancy diagnosed with borderline hypothyroidism and started on Synthryoid I have since had a total thyroidectomy because of goiter on thyroid. ↑
hope2007- Welcome to the board. Don't be apprehensive, seems to me that you are in good hands with your dr. Trust that they will be able to help you have another successful pregnancy. Talk to you dr about any concerns that you may be having. Good luck! ↑
Hey all...I had Mr. Jay Rory William on 8/8/08 at 8:59am. he was 6.9 and 19 in. long. I had been admitted in the hospital for a week b/c my bp went thru the roof and they had to monitor me 24/7. that sucked but at least he is healthy if not just a little on the small side lol. Thanks for your thoughts and prayers! ↑
Hello again- thanks for the welcome! I have an update- we retrieved 9 eggs, 6 fertilized and 3 were transferred. I got a positive initial Beta of 47 and then a second of 95. Even though it confirmed that I was pregnant I started driving myself crazy because the numbers were barely at the level of pregnancy. My husband banned me from the internet because I was obsessing about it and looking up info that only seemed to confirm my worst fears- aaaggghhh! By the time of my 2 week ultrasound I had completely convinced myself that it didn't take. Not only did I not feel pregnant, I started bleeding heavily for a day or two and knew it was over. My RE had us come in a few days early for the ultrasound because he said this had happened with patients before and everything turned out fine. I thought he was blowing smoke and the whole 3 hour drive to Indianapolis to see him my husband and I talked about where we would go from here now that it didn't work. Imagine our utter tearful surprise at seeing a heartbeat on the screen! We need to make it through the second ultrasound on Wednesday- the baby would be 8 weeks- and then we move on to a high-risk OB. I did bring up the use of heparin to my RE and he said they have had success using it so since the transfer I have been on progesterone shots every night and heparin shots every other night as well as baby aspirin, B6, B12, 4 mg of folic acid, vitamin E and prenatal vitamins every day. The shots are not so bad- and that is saying something because I am seriously needle-phobic. My husband hates them worse than I do. The heparin shots are in the stomach but the needle is small/short (you should see the progesterone needle! Big needle-Looooonnnnggggg!) A little ice and pinch the area its going in so you feel the ouch of the pinch and its really not bad. And that is from someone who has been doing it for 6 weeks now. They do cause some wicked bruises but the bruises don't hurt. They just look reeeeaaally bad- that's why my husband is having such a hard time with the shots. With the progesterone shots, use a heating pad for 10-15 minutes on the back of the hip its going in and have the needle go in slowly- the slower it goes, in the easier it is believe it or not. The heparin makes it a little messy sometimes- thinner blood means it occasionally shoots out after the shot. Another reason my husband is having some issues! Sorry about another long post- please pray for us. I'm afraid I expect the worst at every stage. If I don't get excited, the disappointment will hopefully be less crushing, you know?
Alison ↑
asgirl~ Congratulations! That's awesome. Don't be afraid to celebrate. You will feel pregnant more and more as time goes on. Hopefully, you wont have the morning sickness issues...those are the worst! Be positive about your pregnancy because that can really do a whole lot for you. Just stay positive! Keep us updated on how your pregnancy is going. Good luck! ↑
Hi, it's also been a very long time since I've posted on this thread, but I'm glad for the new changes to the forum because it made this thread load easily. I haven't logged on mainly because it took so long to load. Anyways, just wanted to post some more positive news :) I gave birth to a beautiful baby girl on July 8...her name is Ava Soleil and she weighed 7lbs 9oz. I had 6 first trimester losses prior to getting pregnant with her. For her pregnancy I was on 5mg folic daily, prenatal, baby aspirin, vitamins B6, B12, Omega 3 supplement, Lovenox shots (1 daily) and Prometrium 300mg daily for the first 14 weeks. Whew! I am heterozygous MTHFR C677T. We don't know if the MTHFR had anything to do with the losses but all of my testing didn't show any other issues. Anyways, I don't know if the treatment worked or if she'd have come to us regardless, but I'm glad I did it. It was stressful trying to remember everything to take but worth it :) Oh, I also did acupuncture starting 3 months prior to conceiving my daughter and continued it throughout along with chinese herbs. My dr. wasn't too keen on those, but I told her that I was afraid to stop anything I was doing once I was midway through the pregnancy (that is when I got to her...I'd been seeing a specialist up to about 16 weeks). ↑
