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MTHFR And Other Clotting Disorders - New Thread!

316 posts on this thread and the last post was on September 30th, 2009 1:02 AM
There are currently 4886 members logged in.
shannon_atlanta - February 19th, 2009 9:54 AM

Daynarella and Dana - I have one mutation of MTHFR and take daily a DHA pill, prenatal vitamin, a baby aspirin, folgard, and now that I am preggers, I take 100MG of prometrium in the AM and one at PM. I had a m/c before being diagnosed with MTHFR and was on clomid for 2 months but it made me stop ovulating and didn't work for me either. Once I got off clomid and had an HSG test, we conceivied days later. We are over 7 weeks along at this point (nearly 2 weeks past when I miscarried last time). There are many success stories (Cloud and Stefkey among others) of women like us who took meds for this mutation and have had healthy babies. It's SO great to read...
Cloud - Congrats on Casey! Your post gave me chills and moved me to tears.
TuTu - Keep us posted on your progress
Stefkey - Ava sounds amazing...

QQ for the group... I think I am only supposed to take the 200 MG daily of progesterone until 10-12 weeks. Does anyone know?

I feel like everytime I see my doc I ask him a zillion questions but he doesn't seem to mind in the least. We see my doc for our 8 week u/s on Tuesday where we hopefully will be able to see the heartbeat - yay!

Sticky baby dust to all... XO


KristineTM - February 19th, 2009 1:48 PM

Hi everyone! I am happy to hear all of us pregos are doing well this time! CLOUD---Congratulations on baby Casey! I am so happy for you! TuTu----I am 33 weeks now....we are almost there. I can't believe it! I have a quick question I have been reading a lot and found that many woman with MTHFR get induced or have c-sections around 38 weeks...why is that?


tutu2008 - February 19th, 2009 8:53 PM

KRISTINE, in answer to your question...i'm getting induced at 37 weeks since that's when baby's considered full term. i'll be taking some steroid a week prior to ensure baby's lungs fully mature. the answers i got to why i'm getting induced earlier are...#1: MTHFR is more likely to cause complications later in the pregnancy, so as soon as baby's full term, let's deliver him. #2: i'm on baby aspirin and that also has it's side effects when taken during the last trimester....so once baby's full term, let's deliver him. and #3: my stillbirth was actually due to a fetal-maternal hemorrhage which is also more likely to occur later in the pregnancy, so again once once baby's full term, let's deliver him. i think these are all educated guesses though, because complications can occur any time during pregnancy, and i personally feel like they usually occur earlier in the pregnancy- especially first trimester. SO, i think docs induce earlier to give the mom a peace of mind and that if baby's full term, let's have him/her in mommy's arms rather than in the belly with mommy still stressing/worrying (my doc. also gave me that as an answer, and i agreed to getting induced for that reason- i've been pretty worked up with this pregnancy!). i can't remember...are you getting induced? i've got 6 weeks!



stefkay - February 19th, 2009 9:41 PM

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 vaginally (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 23rd, 2009 8:30 AM

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 23rd, 2009 10:53 AM

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


mirandaj77 - February 25th, 2009 11:23 PM

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 26th, 2009 8:44 AM

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 28th, 2009 7:44 AM

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 1st, 2009 3:36 AM

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 passed 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 passed. So this is why I'm wondering if i should be on baby aspirin now.


tutu2008 - March 1st, 2009 7:39 AM

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 it..you 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 3rd, 2009 11:02 PM

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 4th, 2009 12:35 PM

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 4th, 2009 5:31 PM

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 31st, 2009 2:41 AM

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 31st, 2009 1:56 PM

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 assume 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.


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