Hey! I decided to join and post when I started reading some of the info on these forums. I have had 2 early miscarriages (no heartbeat ever detected) and then most recently in February 2006, I lost my baby girl to stillbirth at 26 weeks. Follow up blood work has shown I have compound heterozygous MTHFR mutations, but my homocysteine is in the "normal" range. I also tested negative for the other thrombophilias, APS, ANA, thyroid and immune problems. My OB/GYN wants me to see a maternal-fetal medicine specialist, but she has not mentioned anything about seeing a hematologist or starting Folic acid and aspirin. I have been obsessively researching all of this and it seems like there is so much conflicting information about MTHFR. Without elevated homocysteine it seems like MTHFR means nothing. But I just CANNOT believe this. The autopsy on my baby girl was completely normal! I also just last week had to have a D&C because I was bleeding heavily with lots of clots and then after that surgery I have developed thrombophlebitis in the arm I had my IV in, the whole vein feels like a giant blood clot. So, it just seems to me that maybe I DO have some kind of clotting issue. I guess what I am wondering is if there is hope for me having a successful pregnancy with Folgard, Aspirin, and possibly Lovenox? Would these do anything to help me? And how aggressive do I need to be about this diagnosis? Should I absolutely follow up with a hematologist? I can't stand the thought of losing another baby if there is ANYTHING I can do help him or her, as well ensure my own safety and health during pregnancy. Any input would be wonderful.
Thanks,
McKinley

Your gut instinct is correct. I'm so sorry about your losses, but so glad that you are an avid researcher and an advocate for your own medical care. The latest research shows that homocysteine levels go up in RESPONSE to an adverse pg event, not as a predictor. So please do NOT be reassured by normal homocysteine levels. You are absolutely right about this.

I can tell you my own protocol for compound hetero MTHFR:

* one daily baby aspirin FOR THE REST OF MY LIFE
* two daily Folgard tablets FOR THE REST OF MY LIFE
* one 30mg Lovenox injection when ttc starting CD6, doubled to two daily injections with a confirmed pg, switched to heparin (which can be reversed) for labor and delivery, one injection daily for six weeks postpartum (a dangerously hypercoagulant time for women.)

Please, if you haven't already, visit the Immune Issues bulletin board. There are lots of us who have MTHFR issues and many who have finally succeeded in bringing their beloved babies into the world on the protocol I've listed above.

Please also consider changing doctors. Anyone who sees 2 early m/c's, a stillbirth and hrombophlebitis, and doesn't jump all over an MTHFR diagnosis, should NOT be your doctor. Seriously.

Good luck to you and congratulations on being such an astute researcher and an advocate on behalf of yourself and your babies. I hope that you never have to suffer another loss and soon have your own healthy baby as a result of effective and proper preventive treatment for your MTHFR.

Lauren :hug:

Lauren,
Thank you so much for responding! I was hoping you would, you seem to have such a wealth of information to share about this particular subject. Now, I feel more confident about insisting on treatment for this and if I have to take it into my own hands I will, as well as insist on Lovenox for my next pregnancy. Thank you for all of your advice and I will continue to read everything I find here, at the yahoo immunology group and elsewhere. Good luck to you and thanks again!
McKinley

McKinley,

Good for you!!! If only all moms-to-be were as motivated and assertive as you. You are so right to be prepared in case you need to be your own "patient advocate." All the best to you!

Lauren :hug:

Lauren,
Thanks! I'm so glad I found fertilethoughts.com, I finally feel like I "belong" somewhere and that I'm not crazy for thinking something is wrong with my body! I feel stronger already from the support I have received here just in the last few days. Thank you so much!!
McKinley

I too am a fellow MTHFR er, but I have homozygous mutations. I also tested negative on most of the things you mentioned, except ANA (+) for me. I also have "normal" homocystine too. I can tell you that getting a Dr who takes MTHFR seriously is HARD. Ive seen 2 RE's and neither took it seriously. I have also spoken to the Sher Institute, and they seem more aware. Im trying to set up a consultation now. I was fortunate to talk to Dr Beer in the last few months, and he told me lots about MTHFR. He really knows his stuff. I did also call his office and ask for a collaborating physicians list, maybe thats where you can start.

Jlmee

Hey! Thanks for the advice. I am truly frustrated at this point with it all. I just saw my OB/GYN today for my last post-partum visit and she does not seem to be concerned at all. She says that she will refer me to a maternal-fetal med specialist, mostly for my "peace of mind". She said that they will probably not do anything for my next pregnancy because everything but MTHFR came back normal. I don't know what I'm going to do. I guess I should wait to flip out until I actually talk with these people, but I am going to be so upset if they won't do anything. I just found out about all this recently and wanted to e-mail Dr. Beer myself, but now he is gone and it feels like a devastating blow to the IF community, and I wasn't even one of the lucky one to actually communicate with him. I just can't help thinking that if I lose another baby and the doctors don't do anything differently this time, I'm still the loser in the situation. I just can't handle this, "wait and hope it's different next time." Because what if it isn't? The mere thought of having to feel this all again so raw horrifies me. I saw on the immunology friendly MD list that there is an RE who is Beer method friendly near me, but do I need a referral to see him? I think my OB/GYN would laugh if I suggested that, especially since all my tests other than MTHFR came back normal. So frustrating!!! Keep me updated about any new info you all may have regarding MTHFR. Thank you and good luck!!!!
McKinley

Whether or not you need a referral depends on your healthcare plan (insurance.) Many programs let you just decide whom to see. Others require pre-approval or a specific referral. I wish you the best!!! I agree that this is VERY important. Just keep at it. You will find someone and get the treatment you need. :hug: Lauren

Good morning everyone - I hope you don't mind me posting in here but I just cannot figure out how to post a new topic?? I looked at the FAQ but cannot find anything - anyone have any help they can offer??

Sorry for doing this - I really need some help with immue issues and infertility.

Thanks a million and one

-Christie :)

You may have already figured this out, but on the main page of any bulletin board, you'll see a button in the upper left corner that reads, "New Thread." Click on that, and you're all set.

:) Lauren

I just had this thought... I'm not sure you'll get answers, but you might post on the Immune Issues board and ask if anyone has an RE in your area who properly treats for MTHFR... they will know what that means, as MTHFR considered a genetically-based immune issue.

Warmest wishes,
Lauren

Thanks for the tip Lauren. I found one MD on the collaborating RE physician list from the immunology site who is in my area. I just hope he will see me, I'm kind of using him as a last resort after I see the maternal-fetal specialist in a few weeks. I have been reading up on these studies in the medical journals that clearly indicate MTHFR can be a problem. Just getting frustrated by MDs that act like they know everything about it. My mom went to see her GP today for a UTI and told her about my MTHFR and miscarriages/stillbirth, the GP said that the MTHFR has absolutely nothing to do with pregnancy loss, so now my mom even thinks I'm being overly dramatic about it. :angry: I'm just going to keep researching and consulting with new people until I find someone to take me seriously, I just hope I do before I hit menopause!!! ;) Anyways, just needed to vent a little about this latest insult to my research and intelligence. Thanks for all your great advice and support!
McKinley