FertileThoughts.com - Infertility, adoption, pregnancy and parenting discussions
Cmpd Hetero MTHFR & FRUSTRATED!!

Thanks Thanks:  0
Likes Likes:  0
Dislikes Dislikes:  0
Results 1 to 5 of 5
  1. #1
    DianaNJ
    has no status.
    Registered User
    DianaNJ's Avatar
    Join Date
    May 2006
    Location
    New Jersey
    Posts
    2,828
    Post Thanks / Like

    Cmpd Hetero MTHFR & FRUSTRATED!!

    Not sure if advice needed or just need to vent...

    So now I know I'm compound hetero for MTHFR. At least I know this, but my RE doesn't think I need anything more than just 4mg/folic acid a day plus my PNV which includes 1mg folic acid and 25mg vitamin B-6. My homocysteine levels are normal. I'm negative for Factor V Leiden. Everything else they've tested for is normal. My m/c's are unexplained (D&C fetal matter never sent to pathology ) and I'm 28.

    My RE had me on a baby aspirin/day...until today. My nurse told me to STOP my baby aspirin today!?! She said the clinic has decided as a whole not to put their patients on baby aspirin per advice from OBs. WTF?? It's bad enough they haven't given me a good reason why I'm not on Lovenox...now they're taking away my baby aspirin! How is it good for all their patients to be taken off of it?? Last time I checked, OBs are not RIs!! I have yet to see an RI...we cannot take on any add'l expenses right now.

    I'm starting my Lupron tonight for my first FET cycle. I don't know what to do. I feel like it's against dr's orders to continue the baby aspirin, but at the same time I think this blood clotting thing has contributed to my m/c's.

    I think I may just cut down to one baby aspirin every other day. That's meeting them half way in my eyes. Watch...tomorrow they'll call and tell me I don't need folic acid either. Thanks for listening.
    Mommy to
    6 years old
    1 year old
    due February


  2. Advertisement


  3. #2
    BC-NanceLee
    is the chirpy moderator of the Over 35 Board
    Board Coordinator
    Over 5,000 Post BC-NanceLee's Avatar
    Join Date
    Dec 2002
    Location
    Minneapolis
    Posts
    33,412
    Post Thanks / Like
    Blog Entries
    169
    My Mood
    Relaxed
    Ignore them.

    Take your baby aspirin and folgard - if you can't get it from them find someone else. Fake it with enough folic acid and b vitamins in the meantime (you will be eating a bunch of vitamins but you know what? You have to, not just for a potential pregnancy but to keep from forming dangerous clots in your legs, lungs or elsewhere that could KILL you).

    Reading this just burns me up! I was 23 with my first m/c, 25 with my second. First child at 32 with a bleeding scare, third m/c at 34. Second child at 37 with a HUGE bleed and cord separation at 12 weeks - amazing he lived through it. Nine more miscarriages, finally diagnosed and treated, then one more pregnancy where finally the environment was ready but the egg was bad and never developed properly, ending in my 13th and final loss. To read about you, 28 and just starting, makes me hopeful for you as long as you refuse to let an uninformed medical community denigrate your issue.

    ((hugs)) and keep fighting.

    NL


  4. #3
    807426
    has no status.
    Registered User

    Join Date
    Aug 2006
    Posts
    11
    Post Thanks / Like
    Hi! So sorry to hear of your ordeal. I have been diagnosed with compound hetero MTHFR as well; however, I haven't ever had any miscarriages. I am 4 weeks pregnant and very nervous that I may lose the baby. I am currently on high-dose folic acid, a pre-natal, and a baby aspirin. This is my RE's protocol and as I understand it, a pretty widely accepted protocol for this mutation. Most people suggest you stay on high-dose folic acid and baby aspirin for life. I can't seem to get anyone on board with me being on Lovenox either due to the fact that my homocysteine levels are normal. Apparently, there is some evidence out there that suggests the clotting can occur with normal homocysteine levels; however, I have yet to find anything.

    Sorry I couldn't be of more assistance. Best of luck!!


  5. #4
    Lauren2005
    has no status.
    Registered User
    Lauren2005's Avatar
    Join Date
    Apr 2005
    Location
    California
    Posts
    929
    Post Thanks / Like
    807426,

    Here is one piece of literature about this. I'm sorry that your doctors are behind the times. I imagine it must be scary Do know, though, that many, many women do well in pg without the Lovenox. It's not like the statistics are 100% success with Lovenox and 0% without. But you mentioned looking for literature, and here's some. I have highlighted the critical section:

    Women's Health

    There are certain implications of having elevated homocysteine that are specifically relevant for women. Elevated homocysteine levels have been observed more frequently among women with certain pregnancy complications, including preeclampsia (elevated blood pressure that can lead to dangerous consequences), placental abruption (where the placenta detaches from the uterus), recurrent pregnancy loss, and giving birth to a small, low-birth-weight baby (called intrauterine growth restriction). However, medical research suggests that elevated homocysteine levels may be a consequence of these complications, rather than the cause.

    You can find the entire article here:
    http://circ.ahajournals.org/cgi/cont...ll/111/19/e289

    Please beware that the medical field allows few studies on pregnant women, and has only recently begun recognizing how different women's bodies can react and test, when compared to the "standards" set for men.

    I wish you all the best.


    Lauren


  6. #5
    DianaNJ
    has no status.
    Registered User
    DianaNJ's Avatar
    Join Date
    May 2006
    Location
    New Jersey
    Posts
    2,828
    Post Thanks / Like
    Thank you so much for your replies. I discussed with DH & I'm staying on the baby aspirin. If I'm lucky enough to get pg, I will just notify the OB once I'm discharged from my RE. My gut is telling me this will help me so I pray it does and doesn't end up hurting me in the long run (which I doubt it will).

    The fight for Lovenox is, well, another battle for a later date. I talked to my MD (no specialist of course) while at my physical last week, and he said there are a TON of side effects for taking Lovenox and the pluses better outweigh the minuses when it comes to taking Lovenox. I asked him if having a healthy pregnancy and baby was enough of a plus and he just laughed.

    Thanks again!
    Mommy to
    6 years old
    1 year old
    due February


Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  
DISCLAIMER: Fertile Thoughts allows advertisers to publish information about their services. Fertile Thoughts does not provide medical advice or endorse any particular service or approach to treating infertility. We encourage people to learn as much as possible about the range of options available before committing to any one. We also encourage users to share their thoughts on all fertility options on our forums.

Forum Stats

  • Forum Members: 97,616
  • Total Threads: 352,308
  • Total Posts: 4,534,780
There are 198 users currently browsing forums.

Advertisement

Visit Our Partner Sites: Fertility Treatments