I am new here. Thank you all so very much for sharing your experiences. I am so sorry for your losses and so encouraged by your stories of hope. I recently read a book called: 'to full term' which lead me to inspect my lab reports and to find that I did have a thrombotic disorder. In 1999 I experienced PROM and gave birth to an extremely edemic son at 31 weeks. He survived and is eight years old. Both he and I were, in fact, extremely edemic at the time of delivery. After running many tests including chromosomal tests on my son, our situation was considered "unexplained". We (DH and I) had no difficulty getting pregnant with our first son. Two years passed with no pregnancies. We sought IVF (three cycles all within normal ranges) treatment and all cycles failed. Again "Unexplained". I gave up. I started exercising and taking high quality vitamins (twice a day AM: Folate 600mcg, b6 15 mg, b12 36mcg and PM: Folate 450 mcg, b6 5.5 mg, b12 6 mcg) for about 3 months and amazingly we became pregnant on our own in 2005. I had sporadic bleeding all the way up to the miscarriage and no answers as to why. My OB just prescribed extra Progesterone in hopes that it would help me to retain the pregancy. We lost our son at eighteen weeks gestation. I had some bloodwork drawn and lo and behold I was compound heterozyg MTHFR. Let me say here that my OB/GYN skipped over that when reviewing the report with me. She think MTHFR plays a role in miscarriage. After reading above mentioned book I had my "EUREKA" moment immediately digging out my old lab report and finding the Compound Heterozygous MTHFR result. My DH and I are back to TTC again, and have not been successful. We have an appointment with an Endocryn. next month. Has anyone experienced challenges TTC and found success by adjusting their Folate? Also, is it possible that my first son's 'unexplained' premature birth is related to my MTHFR factor? Any insights would be hugely appreciated. You are all in my prayers. ↑
I posted back in jan or Feb of this year when we lost our baby at 16 weeks. I found out I was FVL and have both MTHFR mutations.Well, I am PG about 4weeks and I started my LOVENOX shots yesterday. I have a question if anyone know the answer please help us. We have a the safety shots. My husband pulled the cap off (i think this is wrong) and gave me the shot last night at 5:30pm it didn't clot until 8:00am this morning. I was prepared for the bruising but not the bleeding all night. Has this happened to anyone else?
Thanks in advance for any advice.
Sandy ↑
rymamom: I, myself, have had 2nd trimester losses and reading that others have experienced the same just tears me up. I'm happy to hear that you have taken a more proactive approach. After three losses, I experienced a 3 year gap of 'infertility'. I don't believe the extra folate helps conceive (I'm not a doctor) but I do know, from my doctor and experience, that reducing carbs and increasing protein with exercise and all that good stuff actually helps conception and quality of conception. ****sandy1969: I have been on blood thinners off and on for 2.5 years. I occasionally have bleeding that lasts throughout the day (from the injection site). I have no idea what causes it. Some days there is no bleeding at all and sometimes it actually goes through to the front of my pants. It seems that it was worse the first week I started this time around. I haven't had any problems since. Not sure this helps, just my experience. ↑
Stac - I think I remember you form when I posted questions in Jan/Feb 07. Thanks so much for answering me. I am 4 weeks pg and trying to remain calm. The bleeding did stop the next day and the next shot was better with the bleeding but the bruise is huge baseball size. I have only done 2 shots and I can figure out were I am going to give all of these for the next 32 weeks. It is a good problem to hope to make 36 weeks but I need more skin and I am not that skinny to begin with so you would think there would be enough room. I might try the stomach tonight. Also, should I worry if I get cut (shaving?)? Since it is a blood thinner I am on 40mg once a day. Thanks for listening. Sandy ↑
Hello. I am new to this forum. I am so thankful to Erin for starting this forum. I have truly enjoyed reading all of your words. I wanted to share my stroy with all of you. I was diagnosed with homozygous MTHFR C677T two years ago after I had a DVT. I have a healthy boy who is now 3 1/2 years old. I did not know I had the gene mutation while I was pregnant with him. I had no prior miscarriages and had a good pregnancy. I was put on bedrest for 6 weeks before my little one was born, but only because I had high blood pressure. I was told by my OBGYN and hematologist that it is ok to get pregnant again. Now that we know I have the gene mutation, we will just take extra precaution. The extra precaution will be shots of Lovanex and extra visits to the doctor. Doesn't sound too bad does it?Well, I just found out that I am about 5 weeks along. I will be making a trip to the doctor's office very soon to start the shots. I know we have a long journey ahead of us, but I am ready for it. I look forward to talking with all of you during my pregnancy. ↑
Hi ladies I was recently diagnosed with MHTFR and I am 8 wks 3 d now. I was told they do not need to see me until I am 11 1/2 wks when they will do an ultrasound and start me on Heprin shots. Right now I am only taking an extra 5 mg of folic acid. Should I be worried that I need more right now?? ↑
Also, I forgot to mention, I had a m/c in June and right now my homocysteine level is normal ( as of the test done 3 weeks ago). How often do you have your levels checkes? I feel my Dr is being really laid back about this. I already had a mc and it was devastating, don't want it to happen again. I have compound hetero for C677T and A1298C. Thank you for all the info!! ↑
hi everyone, i have been reading this forum for a while now but never posted before. i had 3 recurrent miscarriages the first at around 4 weeks, the second at 8 weeks and the third at 6 weeks. After suffering from the recurrent losses i decided to see a fertility specialist since my regular doctor decided to "wait and see". After some testing i was recently diagnosed with MTHFR and i am pregnant now for the fourth time. I'm currently 7 wk 1 day. My doctor has put me on the extra folic acid as well as B6 and B12 and baby aspirin. This pregnancy has already been different in everyway than all of the others. I have had the morning sickness as well as the cramping and I have even seen the heartbeat but I am still worried that something may go wrong especially since its very hard to take all of those pills. Has anyone else gone through this and have any words of wisdom to get me through this. thanks ↑
Hi cgregory, I know what you are going through i have been there too and i am also pregnant i thought i was further along but i am only 8 weeks and i take extra folic acid, baby asa and a hormone pill because of my losses as well, I had some spotting last week but it stopped and the baby is doing well. So the only advice i can give you is that we pray to god everyday to protect us and are unborn baby and that we never have to go through the loss of a baby again and remember to take your medications. I hope that i have been some help. What type of mutation do you have? And if you need someone to talk too i would not mind giving you my email address. May god be with all of us, God bless you all ↑
Hi All. I am still trying to read all of your postings but am very happy to have found this board. My story: Perfectly normal pregnancy with my son, who will be 3 next week. Have been TTC for 14+ months now and have had two unexplained early miscarriages. OB did blood work and found several things: 1) low progesterone (10.5), 2) positive for lupis anticoagulant, which is a clotting disorder and 3) heterozygous for the C667T MTHRF mutation. (And to top it off I have hypothyroidism). It seems like a miracle that I had my son! Anyway, this is all really new to me and this site is extremely helpful. My OB ran my case by a high-risk OB and they just recommend extra folic acid and said no need for heparin, etc. I am going to see a high-risk OB, a reproductive endocrinologit and my PCP ASAP to get their opinions as well. I am also on my first round of Clomid (to help with progesterone), so hopefully all of this will work. It is just so darn scary and stressful! You all have helped me gather a great list of questions to ask the specialists so I will share my info as I get it. Oh, and by the way, my homocystein levels are LOW - 4.1. The lab results actually says this is out of range, but everything I have read say it cannot be too low. Thanks! ↑
Hello everyone! I just wanted to post on the board that on July 5th after 2 mc's and lots of heartache my baby boy was born! What a miracle he is. Gavin weighed 6 pounds, 10 ounces and is our pride and joy. I'm sure Amy Nog had her baby too so hopefully she'll give us an update. I have been writing on the board for a year about my MTHFR diagnosis (I am homozygous with the A1298c variation). So I thought everyone might want to know that miracles happen. I was on heparin, baby aspirin, folic acid and B vitamin and a prenatal. I am so glad to be off the heparin shots. My little guy was born with a minor hypospadia and we have to have a small surgery at 8 months to correct it (hypospadia is a defect of the urethra. His is only twisted slightly so the poor guy pees off to the right). Apparently, according to the doctor it's because of the progesterone I was on at the beginning of my pregnancy to sustain it. I am the happiest woman alive though to have this little guy in my life. I wish all of you the best of luck as well. It's been a long road for so many of us and there are so many wonderful success stories to keep us going! ↑
I've had 3 m/c's and have been seeing a fertility specialist. I just found out that I have two copies of the C677T mutation. The specialist has placed me on 2mg of folic acid and a baby asprin every day while I try to get pregnant. I too have 2 children, although they are 16 and 18. Guess this was developed later in my life. I'm 42 and am praying to have a child with my new husband. ↑
I had an early miscarriage, followed by the premature (34 wks.) delivery of our wonderful son. On Christmas Eve, I had a late miscarraige (17 wks.). At a routine checkup, no heartrate was found. I was later determined to be compound heterozybous with a fasting homocysteine of 4. My MFM specialist recommended no therapies other than high doses of folic acid, an extra B6, B12 & my prenatal. However, when I went to see a hematologist, she recommended low molecular weight heparin. I'm confused as to which course to take. My MFM specialist said no heparin was necessary because of my low homocysteine. I appreciate the experience and expertise of this board, so I'm looking forward to your replies. Thanks- ↑
oliver1-1st-- I'm sorry to hear of your loss and extremely happy to hear that you made it to 34 weeks with the other. There are differing opinions on this matter. My personal opinion is to do everything possible. The LMWH may be a bit of a pain but it will not hurt you. I would just hate to go through another pregnancy and not do everything possible only to regret it later. We always think back to what if I did this or what if I did that. Good Luck! ↑
Thanks, Stac for your comments. I tend to think the same as you...I want to do everything I can. BUT, I'm concerned about the risks of LMW heparin - I've heard about problems in labor, epidurals, bone loss, etc. Have any of you experienced these issues? Is anyone aware of other heparin risks?
Thanks again to all of you for your experience and your comments on this board - I've found it to be very comforting, it just took a little bit of time until I was ready to post! ↑
oliver1-- I had the same concerns. Regarding the epidural: they will put you on straight heparin when you are close to your due date. Ask your OB or Hematologist about it. The bone loss is associated with long term use and more with straight heparin. As far as problems in labor, I am not aware of this. Have a serious discussion with your doctors. My biggest fear was if I had to have a cerclage on blood thinners. Luckily, I am not having one done but I had a looong talk with my doc about it. Remember, you are not the first person to do this and the docs should be aware of the proper protocol. The opinions vary a bit but hopefully your OB and HEM agree and that will alleviate a lot of your concerns. Hope this helps! ↑
Question: Hi everyone. I'm so happy to have found this forum...though the information is freaking me out a bit. The dangers of the internet and too much reading! I had 2 m/c in the past year, both at around 7 & 8 weeks. I was diagnosed with MTHFR deficiency homocysteine, and put on 5 mg of folic a day, plus baby aspirin. (plus my prenatal vitamins). I am now 14 weeks pregnant, and all is well. I didn't do any of the genetic testing, and now after reading some of the responses, I'm worried that I should have. Should I also be taking extra B6 and B12, in addition to my prenatal vitamin? Should I be freaking out? And finding out about late genetic testing? Thanks in advance.... Carol ? ↑
I myself have had 3 miscarriages in the last year. I tested positive for compund heterozygous MTHFR. My homocysteine levels came back normal. Could MTHFR still be causing me to lose my babies even if the homocysteine is normal? I have started taking 1mg of folic acid, and B6 &B12. I have also been taking baby aspirin. Any thoughts? Anyone experience the same thing? ↑
Name: moonlite9599 | Date: Oct 15th, 2007 12:46 PM
Hello, this is an update on my pregnancy i am just over 3 months now and have C667T mutation, on baby asa,extra folic acid,progesterone and prenatal pills, i just had a cervical cerclage put in on Oct 10th and so far everything is going well. I wish the best to you all, God bless ↑
I am 39, I have had 3 mc's in the last 2 years! My Endocrynologist (I forgot the acronym for those MDs) ordered the MTHFR test, thank god. I am on Folgard 2.2 and baby asparin now. I am hoping for IVF this years. Do you recommend DH getting tested - also I just asked my parents to get tested. I have been reading about the inevitable losses depending on who the mutation comes from etc... also my periods very occasionally have heavy clotting - do you think its a symptom of the mutation? ↑
Hi ladies - one more comment and then I will hush up for a bit. murfirhea and carol_tm (and everyone else) about the folic acid and B6 and B12.... I was given a prescription for this - Brand name is Folgard 2.2 My endo MD says that those with the MTHFR mutation can need as much as times more than those without the mutation to meet the needs of their body just on an everyday level and pregnancy can demand more. If you take more than your body needs you just pee it out. I was told to take these twice a day so the daily total on these amounts is actually double. On the bottle it reads: Folic Acid 2 mg, B6 25 mg, and B12 500mcg. I guess I want to encourage those out there taking just over the counter supplements to make sure you are taking high enough doses or request the Folgard 2.2 from you doctor. ↑
I aswell have MTHFR homo mutation. I had 2 misscarriages and 2 beautiful boys now 3 and 1. I found out about the mthfr after the 1st misscarriage. I have just foun out about a new prenatal called NEEVO to be taken still with 4 mg of folic acid. It is made just women with MTHFR so they dont miss carry or go into pre term labor. I went into preterm labor at 30 weeks with both boys. (If you feel any back pain or somack tightening get to your doctor quick, with the mthfr your contractions come on sudden and fast, caused by blood clotting) I am wondering if any of you have spoken with your doctors about this new prenatal? ↑
I just found out i have MTHFR-I'm 23, I had a DVT in my calf 2 years ago. All i ever wanted was to have babies, and now I don't know if I can, i feel so alone, no one around me understands. I'm on 1 mg of folic acid and 81mg of aspirin everyday, and my doc wants to see me again in 6 months, does anyone know what my chances are of having a healthy baby? ↑
Jen, MTHFR should not inhibit you from having babies... you do need to take more folic acid and B supplements than most people so that you do not miscarry. You should slowly read through this site and do more of your own research on MTHFR and what specific kind you have. There are 2 mutations: C677T and A1298C. You would either have one copy of one of these or double of one, or one of each. I happen to have one copy of each and this is called "compound heterozygous".
You should take the initiative and find out exactly what the test results say and better yet, make your doctors office give you a copy of the test results so you can start a binder of your personal health information. There is a prescription supplement you can get called Folgard 2.2. Ask you doctor for a prescription of this. I take 2 of these tablets a day. Which ends up giving me 4 mg of folic acid and a lot of the other Bs you need when you have this condition. I also take 81 mg asparin and a prenatal vitamin. You might consider taking the asparin and Folgard for the rest of your life to avoid other health problems in the future. REMEMBER: You need to become your own health advocate. ↑
