MTHFR And Other Clotting Disorders New Thread

316 Replies
stefkay - February 19

Daynarella, why did your doc say not to take the b.a.? Did he say why? Even the most conservative doc I saw said it was fine. Geez, some doctors drive me nuts. My last 2 pregnancies I was on the treatment I listed earlier. The last one was successful and the next to last one was not but I found out after path reports from d&c that the baby had a trisomy. So it was a fluke. It scares me for the future still if I want to have another. I was a wreck with most of my daughter's pregnancy but she came out perfect! I don't know what helped....the b.a., the lovenox, the progesterone, the vitamins or a combo of all, but something did. Hell I could have bad eggs and a good one got through, lol. I'm just glad I tried everything to see if something would stick you know? DANAB, good luck to you! It sounds like you are on the right track and I would totally do the lovenox. Continue the vitamins (especially the extra folic) now and while you are trying and all through the pregnancy. I'd definitely do the Prometrium if you can get it. I had done wax suppositories at only 50mg per day with an earlier pregnancy I lost but with my daughter I did prometrium 300mg a day inserted v____ally (100mg morning, noon and night). I think it helped a lot. I wonder about MTHFR carriers having low progesterone. I'm not a dr. so I have no data on this, but my fertility dr. seemed to know a lot about the progesterone and talked a lot about how it is beneficial even though many regular OBs think it is not. KRISTINE AND TUTU, Good luck girls on your upcoming deliveries! I can't wait to hear about your bundles of joy :) I am so excited!!!!! SHANNON, tons and tons of babydust to you and I pray so hard that everything works out brilliantly for you and your little one!!!! I did 300mg of prometrium daily until 14 weeks. I was too scared to go off at 12 so my doc let me wean down to 200mg daily and then 100mg daily starting at 12 weeks. I stopped it altogether the day I turned 14 weeks.


Daynarella - February 23

CLOUD - Thank you so much for your encouraging words. I've been taking folgard for a few weeks now, and I had to request it because my doc said no big deal, just take more folic acid. So, on top of the folgard, I take B-complex and extra folic acid - so I think I'm good to go. How's Casey?? SHANNON - THanks for the info. I started taking Omega 3 fish oil (mercury free) and so now my myriad of vitamins and pills include: 200 mg prometrium am and pm; thyroid medication, strong multivitamins, folgard, Omega 3, baby aspirin, and extra B vitamins and folic acid! If this doesn't do it, I don't know what will. Good luck with everything. Please keep me posted. STEFKAY - I don't understand why my doc didn't suggest the baby aspirin either. This is a reputable doc who is a reproductive specialist. However, I'm taking baby aspirin once a day anyway because it's pretty much harmless. Like I wrote to Shannon, I'm taking all kinds of stuff now and I'm hoping that I've covered all bases. Maybe it is just a combination of different conditions. Who knows?! I think I might be preggers right now and I'm so nervous. I'll be able to test later this week. We'll see!!


stefkay - February 23

Good luck!!!! It sounds like you are doing everything you can do! Hang in there and keep with it.


mirandaj77 - February 25

I am 12 weeks pregnant and I was just told I had mthfr and all they told me was to take folic acid...Nothing else, I see on here where every body is taking a asprin also...Should I be taking asprin??? I really confused because my Doctor did not explain this to me...I have two healthy boy's 8 and 4 so this is scary to me...Does this mean that you will m/c later on in pregnancy...Or does this mean that your child will die after they are born later in life??? Someone please give me some answers...


Daynarella - February 26

miranda - Don't freak out - It seems you just have one mutation of the MTHFR like me and NO, you can't die from it. Obviously, you've had 2 kids and already made it 12 weeks so it may not be an issue for you at all. How is it that they just tested you? Most of the problems on here stem from early miscarriages due to who knows - maybe MTHFR! I take a baby aspirin and an RX for folgard which gives me a lot of extra folic acid and B vitamins. If I were you, I'd up my intake of folic acid and B-complex and it doesn't seem that you need baby aspirin since you've made it so far already without problems!


tutu2008 - February 28

i came in wednesday night at the hospital, at 32 weeks pregnant, with contractions/preterm labor. i was dilated 3 cm. they put me on magnesium for 48 hours, gave me 2 shots of betamethasone (steroids for the lungs), and i'm now on bedrest, at the hospital. they want to give me more meds to prevent contractions and i'm so scared. baby's movements has decreased significantly because of all the meds. ......i just want this baby :,( ....will give an update soon. hope the rest of you are well.


lacey22 - March 1

Thanks to everyone who has posted in this forum & the past forums about MTHFR it's helped me learn a lot. I'm a healthy married 21 year old woman. My story is this...I got prego for the first time in July 08 miscarried at about 8 weeks in August at home was told it happens & to try again, no test done. Had a normal cycle in September & got prego right away again then lost that baby in December at 12 weeks & it measure only about 9 weeks which was sad because we had seen the healthy hearbeat at out first appointment at 9 weeks. I pa__sed a fully intact fetus but wasn't able to get out of the snow storm to go to the ER to have tests done on the fetus. Did have all sorts or test done afterwards & my docs found I have MTHFR, didn't tell me what type. I have been told to take 5mg of folic acid a day & also my normal prenatal vitamin & to just keep trying. I do have a question though should I be taking one baby aspirin a day also while trying? or not until I get a positive? or what? When my doc told me about the MTHFR he asked if I have ever had problems with blood clots in my legs or during my periods I said no cause to my knowledge I never haven't, but this last cycle I did have like 2 clots that literally stopped my period for about half a day then pa__sed. So this is why I'm wondering if i should be on baby aspirin now.


tutu2008 - March 1

MIRANDA & LACEY. I'm one of the ones here who IS on baby aspirin but did NOT take lovenox like the majority. i was afraid of overtreatment, and honestly in this country, this generation, they give a lot of drugs...sometimes necessary, but sometimes not so much. i consulted with dozens of doctors, both doctors from my health insurance practice and doctors i asked them to refer me to that were not part of my insurance. i met with regular OBs, perinatologists (high risk), and hematologists (blood docs). i heterozygous MTHFR, i think, you can look back a few pages to see for sure, i can't remember...and my hemocystene levels were normal, even though some would say that doesn't make a difference. In any case, i wanted to know what my options are, and what would give me a healthy baby (i gave stillbirth last year at 25 weeks). the bottom line answer i got was this: there is not a sufficient study to show that being on lovenox and/or baby aspirin will guarantee a successful pregnancy over not being on lovenox or baby aspirin, or one or the other. There is no study like this because simply, there aren't pregnant women that are willing to take the 'sugar pill' or whatever they call know, the ones that think they're taking meds but they aren't meds, to show the difference between them and the other women in the study who do indeed take meds. SOO, because of that, and because my doc was able to prove that my stillbirth was not due to a blood clotting disorder (it was actually fetal-maternal hemorrhage but they found out about MTHFR afterwards), i decided not to take lovenox. It was easy for me to decide to take the baby aspirin because obviously it's much lighter than lovenox and it's a pill as opposed to a needle you gotta poke yourself with every day. But again, I heard different opinions from different docs. Some said i can take a pill each day of my life, pregnant or not. Others said to take it only during pregnancy, as a precaution. And others said I can take it every other day during pregnancy or take it everyday and then stop sometime 3rd trimester. I decided to take it, everyday, as soon as i found out I was pregnant. I'm 32 weeks now, at the hospital on bedrest, and they're still giving me one a day. Sorry that was so long. BUT, in conclusion :) what I think is the ultimate best thing you can take (and according to all the docs I consulted with), would be your daily prenatal vitamins and your extra folic acid. I was on an extra 4 mg,but 5 mg is fine too. Also, request that you see your doc every week. I saw my OB once a week from week 7 until now (well now I'm at the hospital). On top of that, I asked to see a perinatologist at least once each trimester (I saw one for a total of 5 times so far this pregnancy). You and your baby deserve only the best of care,and you need to feel safe. Ultimately, it's what you feel is right. So, get educated in your options, consult with as many professionals as possible, then make your decision. Don't feel like you're undertreated compared with some of the women here...remember that each individual is different. I wish you both all the best!


stefkay - March 3

tutu, my thoughts and prayers are with you and your baby!!! I know everything will be ok but take it easy and it is good that you are in the hospital on bedrest so that they can constantly monitor the baby. I would not leave that place without your baby in your arms, lol ;) Keep us posted! I will try to check in more!


mirandaj77 - March 4

Daynarella here is my story as to why they found the MTHFR later in my pregnancy...I was on Depo Provera shot so I did not have a menstral cycle...I had a gyno app feb 2nd to get a yearly pap and schedule getting my tubes tied so needless to say they couldnt do the surgery because I was pregnant and didnt know it...I had no symptoms what so ever...So they sent me to do a u/s and it showed that I was already 9 weeks pregnant, so thats when they did the blood work and found MTHFR...I am 13 weeks and 3 days now so hopefully everything will be ok...Thanks for the info if you have anymore I'll take it...


cloud9climber - March 4

TUTU - I'm so sorry that you are dealing with pre term labor. I've been thinking about you and will pray that your little one stays put for awhile. ((((huge hug))))


Lybaum - March 31

Hi ladies. I just had my 3rd d&C March 17. I found out I had MTHFR after my second one. I was taking baby asa, lovenox, pregesterone, and folgard this last time around. I really thought I would actually make it this time. It was the farthest I ever made it. I have never been able to get past 6 weeks and did manage to get to almost 9 weeks. Now I am wondering if I have a Killer cell problem from a autoimmune disorder I have. It's just so frustrating. I did read somewhere that a gal took prednisone 10mg twice a day up to week 18. Anyone out there taken this and have any success? I would like to give it one more try and if this would work I'd like to go for it. Any advice would greatly be appreciated.


Daynarella - March 31

Hi lybaum - I'm so sorry for your recent loss - this totally sucks big time. You figure with all that you were taking, it would be smooth sailing. Do you have homozygous MTHFR? I a__sume so since you were taking lovenox. I just can't believe it. I'm so nervous about being preggers again because I really dont' want to have to a 4th mc. I think I have it all covered but who the heck knows? You thought you had all your bases covered and now look what's happened. This is so frustrating. So, basically it could be something completely different than the MTHFR. I''ve also looked into the NK cells thing but who knows. I feel like I'm digging too much and it could be any number of things. Sorry no advice on the prednisone...Take care of yourself.


mrprenatal - April 17

For those with MTHFR there is a prenatal out there called Neevo, it has L-methyfolate, the active form of folate which bypa__ses the MTHFR polymorphism. MTHFR is an enzyme defect that does not allow the patient to fully metabolize folic acid into L-methylfolate. Since Neevo has L-methylfolate, the polymorphism is not a factor and you can eliminate your folate issues from the equation. website is Neevoprenatal dot com Hope this helps someone, and good luck to you all


tutu2008 - April 17

hello ladies!! i haven't heard from you mamas in quite a while! i haven't posted myself since i was on bedrest at the hospital. i am so HAPPY to report, though, that my bedrest continued on successfully, and i gave birth to my little boy on april 2nd- as planned (induced at 37 weeks). the labor & delivery went pretty smoothly, and i now have my 6 lb 3 oz baby boy keeping me busy at home. :)


stefkay - April 20

TUTU!!!! That is wonderful wonderful news :) whew...I worried about you as I hadn't heard from you in a while. How long in all were you on bedrest? Congratulations on your baby boy and I'm so glad he is here happy and healthy :) Keep us posted on how things are going! How is everyone else? Ava is growing like a weed and will be 10 months before too long. She has her 9 month appt tomorrow and hasn't been to the dr. in 3 months so I'm anxious to see where she is at on the charts and how she is doing overall. She's a joy and total mama's girl, lol. Well, I'll check in later!



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