MTHFR And Other Clotting Disorders New Thread

316 Replies
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!


KristineTM - April 27

Hi! TuTu congratulations on you little boy! I am happy to report that my baby girl Gianna was born on MArch 21 and we are both doing great! TuTu congrats again and I am so happy that we both have happy news to report! It's about time! : )


stefkay - April 29

Kristine, that is awesome :) I'm so glad to hear your baby girl is here! Her name is beautiful too! I love it!


shannon_atlanta - May 21

TuTu - YAY! Congrats on your baby boy! KristineTM - Congrats on Gianna! Stefkay - So happy to hear Ava is doing well... I haven't posted in a LONG time so I thought I would update you guys. We are 19 1/2 weeks along and found out yesterday we are having a boy! I am still taking the baby aspirin and folgard daily as well as a prenatal vitamin with DHA. Everything has been progressing smoothly so far and for that I am truly thankful and blessed. I hope to read many more success stories and want to thank you for this forum in helping me get through all my MTHFR questions! Sicky baby dust, easy pregnancies and healthy babies to all...


stefkay - May 21

Shannon! That is awesome wonderful news :) I get goosebumps whenever I read of one of us coming back to post a pregnancy or baby's arrival. I love it!!!! Congrats and let us know when he gets here!!!


katie_perkins - May 21

Hi everyone. I am 18 years old and I am getting married in July. My future husband and I have talked and thought about it for a long time and decided we are both ready to have a baby in about a year. But, I have MTHFR; I had two pulmonary embolisms about two years ago, I took Lovenox subcutaneously twice a day for about a year until my clots were dissolved. I am on no medicine right except for 1 aspirin a day. I also had third degree heart block and I have a pacemaker. I have no problem whatsoever taking my blood thinners again for my future baby. But, I am wondering if anyone has any advice for me or any important information I need to know. All my doctor told me was to let him know when I was ready to get pregnant and he would put me on certain medications. He also said that my pregnancy would be very difficult on me, but as I said before, I will do anything for my future baby. -Katie


HHebert - May 21

Hi ladies, I want to start by thanking all of you for this forum. I just experienced my first pregnancy which resulted in a m/c at 7 weeks. I have been reading what you all have said and I know there is hope for me and my husband to have a healthy baby. My older sister had 2 pregnancies that resulted in stillbirths but now has a beautiful 5 year daughter. She was never tested for the MTHFR mutations, but when I found out I was pregnant I told my dr. EVERYTHING. He immediately ordered me to have the Thrombophilia Panel of blood work to be done. I was positive for MTHFR, both compounds, hetero. He told me to take extra Folic Acid, and after reading this forum, I also started taking a baby aspirin and B vits. He then tested my homocystein levels, which came out to be normal. My question to you guys, should I be taking a prescription strenght Folic Acid on top of my prenatal vits rather than over the counter stuff? Thanks again for all you have shared. It has helped me!


pixiesmom - May 25

I too have one copy of the mutation for c677t. We have been trying to concieve since December 2007, we have suffered through 3 early losses. As far as the folgard, I know that Dr. Beers (a wonderful RE/RI that researched MTHFR, among other things before he pa__sed away) reccommended that women with hetero take 1 folgard, and women with compoud take 2 pills of the folgard for the proper dose along with a baby aspirin (you can research his name online and read MANY articles regarding his research. My RE has me on an additional 4mg of folic acid, with baby aspirin, along with my prenatal. I also take the additional B6 and B12 that aids in the absorbtion of the folic acid. There is so much debate out there about this disorder` there is no common ground or "normal protocal" that has been established as of seems like the best bet for women in our shoes is to find an RE that will go along with the type of fertility plan that 'we' want. A lot of research I have read reccomends that women with MTHFR get a 'proper' follow up with a reproductive immunologist as well as a hemotologist because there are so many different types of blood tests that can be done a__sociated with this disorder that are not routinely given. I wish all of you ladies the best of luck!


amy2008 - June 11

Congrats to TuTu and KristineTM!! And StefKay, I am glad to hear that Ava is doing do well! I haven't posted here in awhile but to remind everyone, I had four miscarriages before being diagnosed with homozygous MTHFR (C677T mutation). I'm now a little over 31 weeks pregnant with fraternal twin girls! After getting through the scary first trimester, things were very good! At a little over 30 weeks, I ended up in the hospital for pre-term labor (very common with twins) so I am on bedrest until 34 weeks (at home at least) and things seem to be much better. I had a question for those of you who have been through it as far as when you went off the baby aspirin and Lovenox. My RE, first peri and OB all said I need to stay on the Lovenox but my current peri (we had to switch because of scheduling issues) didn't think I needed to be on it after the first trimester, so she isn't a reliable source of info. Since she doesn't think I need to be on it anymore (and I'm not willing to take any chances), she isn't great about giving me info. on the plan for delivery. When did you guys stop the baby aspirin? Lovenox? I'm nervous since I might deliver early that switching at 34 to 35 weeks might be too late. Any advice would be appreciated and best of luck to those of you going through the early process! I'm a testament to the fact that finding the right RE and getting the right treatment can help tremendously!!


stefkay - June 19

Hey amy!!!! Congratulations!!!!!!!! That is awesome :) I would stay on the lovenox all the way. That is how I did it and everyone I've known to be on it did it. I did my last shot on a Sunday and then was induced Tuesday at 6am. It only needs to be 24 hours from your last shot. If you go into labor before that they can give you something to reverse any overly thin blood. They test your blood etc. when you are admitted to deliver. My OB wasn't concerned at all. Good luck and please post when your baby girls arrive! What a miracle and twins too!!! Do they run in your fam or did you have fertility treatments? Sorry if that offends you that I ask, I'm just curious b/c they run in my family. I've heard some women post about being offended by being asked if they did fertility treatments-- I guess I just figure it wouldn't bother me, lol ;)


KristineTM - September 15

Hi Everyone! I haven"t talked to anyone on here in so long! How are you all doing? I am good...Gianna is almost 6 months and I have been fortunate enough to get laid off so I will be home and getting paid for the next 6 months! lol It really doesn't get much better than that! What is new with all of you? Hope you are all doing question ladies that have had babies what medicines are you still taking?


tutu2008 - September 20

kristine! time flies doesn't it:?! my little one is almost 6 months too :) i'm not taking any medications other than my prenatal vitamins because i'm still b___stfeeding, although my doctor recommended i take 2 mg folic acid daily. she said it wont hurt to take baby asprin forever either, but i'm not. hope you all are doing wonderful!


stefkay - September 30

Hi Kristine and Tutu, I don't get on here much anymore but wanted to stop in and saw this thread. I'm so happy to hear everyone is doinng well! Ava is now almost 15 months old! YIKES!!!!!She's doing awesomely and time is just flying. Kristine, I was taking the folic, b vitamins, omega 3 and baby aspirin still for some time but lately have been slacking. It's like after I stopped b___stfeeding around 12 months I stopped taking care of myself as well in the eating and vitamins category. I also started drinking caffeine again (diet coke!!! such a vice) and drink WAY too much caffeine. I am about to just quit cold turkey because I feel jittery at bedtime. Anyways, we are starting to think about maybe trying for #2 but I'm totally wigged out about doing the whole thing again (shots, meds, ultrasounds, tests, ICK). Kind of scary. I still always wonder if my successful pregnancy was a fluke and will I have to go through more losses again if we want to try for more. Oh and dont' even get me started on the cost of the shots! lol...anyways, I'll try to check back in more often. Hugs!


Marianna22 - January 12



stefkay - January 13

How are you all doing? Just thought it was funny I came back and read this and my post was last on September 30....well, apparently I conceived about that night (LOL) we weren't trying that month but thinking about doing so in the next year. Long story short I'm almost 18 weeks along with #2! We are excited and it's gone good so far. Find out the s_x in a couple of weeks and just pray things continue to go so smoothly and as well as they did with my dd. I'm doing lovenox again so it's a pain in the side (literally) but worth it.


albertina - June 15

Hello, I'm 37 and I had a stillbirth in 24th week: oligohidramnius and IUGR. Later I was diagnosed for homozygote MTHFR, ANA, anti-Ro antibodies and Sjoegren's syndrome. My GYN prescribed me 5 mg of folic acid per day and baby aspirine as soon as I conceive. I've got different opinions from different doctors (GYN, rheumatologist, blood specialist). Some think that the folic acid and aspirine therapy may be sufficient and some suggest also heparine therapy. (About anti-Ro: the rheumatolgist said that I will have ultrasound examination in 2nd and 3th trimester; but what about the therapy, is there any necessary?) I'd like to know if anybody has similare experience or maybe just some encouraging words. Thanks a lot, Albertina



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