Tracey, i forgot to answer your question. Sorry. My genetic doctor told me to be on Folgard (or OTC folic acid/B vits) for two months before TTC so my body could stock up on it. He was pretty adamant about it. I don't know if this caused your chem or if he has any research to back it up. The two month wait just happened to coordinate with the three months my OB told me to wait before TTC again, so the timing worked for me. ↑
Want1More, thank you for the congrats and a big congrats to you as well...Although we are in somewhat of a game of catch-up right now. We very quickly learned the usefullness of having a doctor that is more knowledgeable about MTHFR and more able and/or willing to help with the treatment. If you remember my story, I pretty much told the doctor what pills my wife should be taking and got the "how much" from this site. Well, after our appointment yesterday, and rereading what everyone was saying here over again, my wife and I took another look at the dosages she's been taking. Turns out, this whole time, my wife has only been taking somewhere around 2mg of folic instead of the recommended 4-5mg (B6 and B12 we are ok). The over the shelf folic only go to 800mcg and the bottle says not to take more than 1000mcg a day. So we assumed, with that plus her prenatels (about 1mg of folic~Prenate Elite) it had to have been more than enough to cover it. Well basically, now she is quadrupling up on the folic pills she's been taking and we've been hoping/praying we didn't make a mistake that may effect the baby. We find out hcg levels after 1:30 this afternoon. Is high hcg levels considered bad or is it just low that's not good? ↑
Cheyrl--Congrats!! Your levels look outstanding!! Nate, high hCg levels are really good. They are supposed to double every 2-3 days. The two of you are giving me a TON of hope which I have been losing. I do believe that my last loss is due to not having taken the vitamins for the correct time period. I will try again sometime if May.
Alexa, my heart goes out to you. My dr did say that without the vitamin therapy, we are at a much higher risk for spina bifida, and the variious Trisomy's as well as m/c. I feel so blessed to have my son, but at the same time, he is so awsome that he makes me want more! Tracey ↑
Ok Ladies, I think we have some good news. Really hard to say at this point. My wife called this morning to find out the results of her blood tests. I'm specifically going to find out actually hcg levels and such tomorrow because apparently they felt it was high enough for her to go in for her first ultrasound tomorrow. I can't tell you how nervous I am. Trying not to think about the past ultrasounds and how each ended up with nothing but an blank screen. PRAYERS PLEASE!!! ↑
HI GIRLS. I JUST GOT THE NEWS OF TESTING POSITIVE FOR MTHFR. I HAVE ONE LITTLE 3YR OLD PRINCESS ALREADY. (NO PROBLEMS WITH THIS PREGNANCY EXCEPT SLIGHTLY HIGH BLOOD PRESSURE IN MY LAST MONTH.) ONE M/C IN SEPT. 2005 AND ANOTHER IN FEB. 2006 . AFTER 13 VILES OF BLOOD TAKEN THE CONCLUSION WAS MTHFR AND SLIGHTLY LOW PROGESTERONE. I GO FOR MORE TESTS NEXT THURS. TO FIND OUT HOMOCYSINE LEVELS AND HOMO OR HETRO. AND ANOTHER PROGESTERONE CHECK. I AM IMPATIENTLY WAITING AND STARTING TO GET NERVOUS. THIS SITE HAS BEEN EXTREMELY HELPFUL AND I AM SURE WILL BE EVEN MORE SO IN THE COMING MONTHS. ↑
Well ladies, good news so far. We got Hcg of somewhere around 4400, Progesterone of 30, a yolk sac in the gestational sac, and an estimation of about 5 weeks. We get another ultrasound in 2 weeks and we should be able to see more baby then. Thank you for prayers, and continued prayers requested. I will continue to do the same. How are you doing Want1More? ↑
Hi Nate - So far, so good. I had my first sono today, and I saw the baby, the baby's heartbeat and the yolk sac. It was amazing. Based on my history though, I won't be able to relax until I get through the first trimester. I'm at 6w1d, so looks like I'm just one week ahead of your wife. This Wednesday, I'm getting a consult with the high-risk perinatalogist to get an opinion on my MTHFR treatment. I'll let you know what he says! ↑
Glad to hear it Want1More. I hope and pray for continued success in your pregnancy. My wife on the otherhand has experienced a little spotting once this weekend and is cramping a little today. So you know we are on pins and needles right now. I'm having her call to try to get another sono soon (hopefully today) to make sure everything is alright. ↑
Thanks Tracey...according to whomever my wife spoke to on the phone, this may be normal for where she's at in her pregnancy. So unless the spotting picks up, we are on schedule for Sono at close to 7 weeks. Sounds like we are right behind you Want1More. ↑
Tracey, thank you for your continued prayers. I hope all is going well with you! Nate, I spotted a little with my second child and it went on to be a perfect pregnancy and baby. All ~ I just got back from the high-risk OB. He reconfirmed that Lovenox/heparin is not a normal treatment for MTHFR. He said that Folic Acid/B vitamins is the best treatment and is the only thing that will bring down homocysteine. Baby aspirin is used to make the blood platelets less sticky and therefor less likely to clot. BUT he said, it is likely not going to make or break your pregnancy. Lovenox is used if you have a history of blood clots or 2nd trimester loss(es) due to lack of growth or low amniotic fluid. It is just one doc's opinion, but thought I'd share in case you are deciding on heparin or not. This doc is part of the best perinatalogist group in northern virginia. I'm proceding with 2.2 mg Folgard (twice a day), prenatal vitamin, daily baby aspirin and 200mg of prometrium (progesterone) once a day. Oh, and a lot of prayers. Keep the faith everyone. ↑
Hi all-
Nate and Want1More, I'm still praying and wishing the best for you! (actually for all of you!) Anyhow, it's nice to get some feedback from other experts in the field. I spoke to my fert spec and she gave me the whole 'it's not that big of a problem' speech. Hmmm...guess we'll see. Doesn't that drive you guys crazy???Anyhow, I asked again about whether I should be taking the B vites (in addition to the FA)and she told me there is some disputing info in the NE Journal of Med about whether B vites are really necessary...again, I guess we'll see. Anyone else heard anything similar? That's completely against what Want1More's doc said. Why such discrepency? At least, the good news is that both my husband's and my chromosome tests came back normal - baby steps right? As for ttc, I was kinda lax about it this month and think I may have missed it! oops. Oh well, at least that'll be one more month for my body to stock up on FA. I guess I'll find out for sure in a couple weeks. Take care all, from here in the midwest. lw ↑
Hello - I am so glad that I found this forum. I have been reading over everyone's messages and have learned so much - thank you!
I am 10 wks preg and have been diagnosed with both homo MTHFR and APS (an acquired antibody clotting syndrome). I was tested for clotting issues after the emergency delivery of my beautiful daughter (she is now 2.5) due to placenta abruption. I am currently taking a daily Lovenox shot (40 mg), a daily baby aspirin, Folgard and a prenatal vitamin. I have a question or two that perhaps someone might be able to help me with?:
First, is anyone else taking both a daily baby aspirin and a blood thinner via injection? A perinatologist set this course for me but two ob/gyns in the practice I go too expressed surprise (although they are deferring to the specialist).
Second, has anyone on Lovenox baby aspirin experienced bleeding upon starting the treatment? I did and it scared me so (I know that many of you can unfortunately relate/understand)
My third ? is for "Want1More" specifically - one of your posts stated you live in N. Va? Me too! I am thinking of going for a 2nd opinion and you spoke so highly of the drs. you see. Would you mind sharing that information with me?
Again, I feel so fortunate to have found this Forum. I appreciate all the information and experiences you have shared -- it truly helps!
My best wishes to everyone,
-Susan ↑
Hello all! Like everyone else who's posted here, I'm so glad to have found you all, but I have to say I'm still a bit confused and scared about what this means for the possibility of adding to our family. In February of this year, I delivered my daughter 20 weeks early due a placental abruption. Blood tests that followed indicated that I have hetro mutation of the A1298C gene. After meeting with a Hemotoligist, who confirmed I do not have a blood clotting disorder that cuased the early labor, I had let go of the thought that this gene mutation had anything to do our loss. Well, after experiencing a "chemical pregnancy" last week, I found myself searching for more info online and found you all. NOW, i'm rethinking this whole thing and believe that perhaps the mutation may have something to do with these two losses. After reading all that you've written I'm calling my Dr to discuss adding more FA and B and maybe go to the RE....being 34 I feel like time is not on my side. I'm so sorry there are so many others going through similar situations, but I must admit I find comfort in knowing we're not alone. Thank you for giving me a place to learn more! Marcy ↑
Ok Ok, so I'm taking matters into my own hands - slightly. First of all, welcome Marcy and Susan. Wish it were under different circumstances. Anyhow, after reading what I've read (especially from Want1More's recent trip to the perinatologist) I decided to call my regular OB and ask her opinion on the B vites (in addition to my extra FA). She said it has it's benefits. (Remember the RE said it wasn't necessary) I mean really, if it doesn't hurt, and can only help doesn't it seem obvious?? Oh well, so my Q to you all is if I just get otc B vites, how many/much should I take? I currently take 4 mg of FA plus the prenate. Ok gotta run!
liz ↑
Liz,
Hi! Yes my RE said the same thing as want1more that the only treatment for MTHFR is Folic Acid. I have homoMTHFR. My Dr prescribed 25mg B6 and 500mcg B12 I also take a baby aspirin and 200mg Progesterone 3 times a day vaginally for implantation support. I just had an IUI on 4/25. Congratulations to all who are PG with MTHFR was a great feat you have overcome. We are waiting for that day. Hopefully soon. Take Care
Gina from Napa ↑
Gina-
wow! you're fast! thanks for the info. I also called the pharmacist today and got some scoop on Folgard, versus otc B vites. So I guess tomorrow i'll begin those as well as the FA. (All this in spite of the fact that the RE doesn't see the B's as necessary!) And then we'll see... Hey also, Gina good luck on the IUI! Got my fingers crossed for ya! Thanks! lw ↑
Gina ~ good luck to you on your IUI. I hope you have some sticky beans!
Susan ~ I've seen several doctors -- all in Fairfax, VA. My Ob-Gyn is Fairfax OB-GYN. I see Dr Montilla. My perinatalogist is Dr. Alfred Khoury (he's GREAT but tough to schedule). His group is called Perinatal Associates of No Va and all the docs are specialists. Finally, I got genetic counseling through the Genetics and IVF Institute in Fairfax, VA. I saw Dr. Stern there. If you want a second opinion, I'd try Dr. Khoury's group. They specialize in issues like MTHFR. Good luck!! ↑
Hey ladies- it's been a little quiet out there. Hope everyone's ok. Well, remember I said this month I thought I missed my ov days? Apparently i was right, because i had a 21 day cycle!!! (i'm normally a 26-27dayer) I remember reading that someone on here had asked about her cycles changing once she started the vit therapy....i couldn't find it though. I called the doctor and once again she said the FA/B's 'shouldn't affect my cycle'. Anyhow, we're gonna ttc again on our own this month and then if no success, then we're going to do the shots next month. Ugh...this is way too much! Oh well, I'm trying to be as positive as possible. lw ↑
Hi Everyone: After my biological father almost died from a blood clot in his lung, he was found to be homozygous for Factor V Leiden. I tested positive for "compound heterozygous" for the MTHFR mutation. I just found out 1 month ago about the mutation and I am currently 6 months pregnant. Because of this, I was not taking any kind of medication before I got pregnant. My genetic counsler said "just take extra folic acid" which I started a few weeks ago. He has given me nothing else. He has the attitude that most of the population has this. I am concerned because it seems to be more of an issue to have this mutation and be pregnant. Anyone have any advice?? I don't know where to go or who to talk to about this since my doctor does not seem to care.... ↑
Hi, first I would like to introduce myself. I am currently sitting at home waiting to m/c. This is my 5th pregnancy and I have one healthy 12 year old girl. She was my first. My losses were at 20, 16, and 22 wks.
I found after my 3rd loss that I am MTHFR positive and am homozygous. I started Innohep (similar to Lovenox) a year ago when we started ttc again. I have also been taking folgard and baby aspirin since then. This time I am only 9 wks. We had not seen a heartbeat and I started spotting on Monday. I have an ultasound and D&C scheduled for tomorrow. We wanted to see one more time before going ahead with the D&C. However, I am cramping and bleeding more, so not sure it is even necessary.
We are at a point that we want to do IVF. My husband is 37 and has NO biological children just my daughter. This is VERY important to him. The RE suggested last year that we consider a serogate. My sister has offered and now he really wants to pursue it. Then, we can try ourselves again in the future but will at least have had one child. I am not against it but it is hard. I want him to feel our baby growing inside of me but I guess we have time for that later. Plus, I am really tired of taking the heparin injections. I can switch to Coumadin if we decide not ttc.
I know this is a lot but also wanted to mention that MTHFR is a predipostion for blood clots. I will be taking blood thinners for the rest of my life. I had a lot of other problems outside of the pregnancies including numbing, tingling and disorientation. The hematologist believes that it I was having TIA's--mini strokes. I have not experienced this since I started the blood thinners.Also, if it has not been mentioned, I have been instructed that anyone with a predisposition for blood clots should not take the pill or hormone therapy........Okay I think that is enough for one day :-) ↑
LizZ: Hi, this is Alexa. I just wanted to reassure you that I did have three healthy babies and I am homozygous for MTHFR.
Stac: I am so sorry to hear about your heartbreak. You can read my story up above...these past few weeks have been very rough, so I sympathize with you. It's funny how most doctors blow off MTHFR at this point--it is a common mutation (I've heard 15-20% of the population has at least one mutated gene), and I think they just don't know the full scope of what it can cause yet. I'm glad you will not suffer any more clots because of your therapy! ↑
Oh, and LizZ--I had my kids before I even knew I was positive for MTHFR, so I wasn't on any special treatment at that time. It wasn't until I miscarried/have had problems getting pregnant that I even found out about MTHFR. Good luck to you. ↑
Hi Want1More -- Thank you very much for sharing info. on your doctor's/practices with me as we both live in N. Va. Sorry my thanks is belated as I have had a terrible head cold for the past few days (can barely breathe!). Actually, it is nice to fuss over a silly, little cold rather than injections for a change! :)
Thanks again - I hope all is well,
-Susan ↑
I thought I was alone in this genetic mutation ordeal until today! I am so glad to have found this site. I have learned so much reading this page. I am a 29 year old mother of a healthy 2 year old boy. I had one mc before Isaace at 14 weeks. Last Oct I mc at weeks and I mc'd again 2 weeks ago at 7 weeks. My dr ordered a full genetic screen and found that I am heterozygous MTHFR with a single mutation on the C677T allele. He said he wanted me to wait 3 months and then ttc again (usually not an issue for me). He indicated he would have me on Lovenox for at least 7 or eight mo of the pg. After reading all of your posts here, I am wondering why he would start with such an agressive treatment. Should I ask to try Folgard and baby aspirin first? Or do all the mc's indicate I have a clotting problem ? I feel so emotionally drained from all of the mc's, chasing a 2 year old around and working full time. The thought of injections just scares me. I can't believe how much grief I feel over all of this.... ↑
Hi Alexa-Thanks so much for your input. It is reassuring to know that I can go through this pregnancy without complications. I am worried about the next time I want to get pregnant though. Hearing about everyones miscarriages just breaks my heart. Do you think taking just an extra dose of folic acid will be sufficient for this pregnancy? Should I request something more from my doctor? ↑
LizZ: I am certainly not the best-informed person in this forum...but from what I have read here, it seems the most uniformly-prescribed treatment is the extra folate (at least 4mg per day). There have been differing views about any type of blood thinner--baby aspirin seems common, but some consider it overkill. It also seems injectionable blood thinners are prescribed with a past history of a clot or similar problem. You can see what your doctor says about it, but it also seems most doctors don't know a whole lot about it yet. I bet you'll be just fine, so try not to worry! Best wishes. ↑
Hi all, I've been quiet lately but still reading. I'm glad this page has been a good source of info for people. At least we all know we're not alone! From what I understand, there is a difference between homo and hetero (so know which you are) but the real issue is your homocysteine level. If that is normal, the docs seem to think that the MTHFR mutations won't be a problem but recommend extra folic acid anyway. Most think heparin is not necessary and there are other risks with it. Folic acid will regulate homocysteine levels and keep them low (which is good), so even if yours are high, they can be kept down to normal. My fertility specialist is doing research at UCSF in this now and doesn't think MTHFR is a major factor for most. Hmm - I'm not sure what to believe. We all know that miscarriages happen more often than anyone ever thought previously (we are more aware of them now), but those that are happening later in the pregnancy do seem out of the norm. I'm recovering from surgery to remove scar tissue that occurred from my last post-miscarriage D&C (a wholly unrelated but disappointing and frustrating problem b/c it is the second time after second mc - I won't get another D&C under any circumstances!). We're back to ttc in July. I've also been getting acupuncture b/c studies have shown that it helps with fertility problems. It is a strange experience, but does seem to help with the stress of all this, which could be a bigger problem than anything else. Best of luck to all and congrats to those who are pregnant. You give us all hope!! ↑
KristenR--what were your symptoms of scar tissue build up after the D&C? I had one in Nov, and have had 2 chemical pregnancies (Feb & April). I am wondering if the D&C could be a factor. Tracey ↑
Hey all- jjstone, you'll see some good evidence from all the ladies as to why you should talk to your doc about FA and B vites first. Just an opinion... Also, Kristen, my sister (for different fertility reasons) also did acupuncture while ttc and really loved it! Also, Tracey, regarding the scar tissue, have you had an HSG test? I had one to determine if I had any fibroids or other abnormalities in my uterus. (Bcuz I had a previous c-section with my daughter and also a D&E with my first mc) That test may be able to determine scar tissue. take care ladies, gotta run! LW ↑
