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Diagnosed Yesterday and Scared--Please Help!

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  1. #1
    FoodieinFL
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    Diagnosed Yesterday and Scared--Please Help!

    Hi everyone. So glad to have found this website! I was just diagnosed with homo MTHFR C677T yesterday. I had routine bloodwork done last month to check my thyroid, cholesterol, etc., and expected everything to come back perfectly fine. I found myself in a bit of a fog after my doctor dropped this bomb. Unfortunately he was not able to provide me with much information, so I left his office feeling shocked, scared, and confused. I have been surfing off and on all day, trying to make sense of what exactly it is that I have, and what it means with regards to conception and pregnancy. My main concerns are:
    1. What are the chances I can conceive and carry a baby to term? I have heard many stories of m/c with MTHFR. Are the m/c's primarily involving women who were not aware that they had this mutation, and therefore were not supplementing with enough folic acid or necessary blood thinning agents?
    2. If and when I do conceive, what are the chances that my baby will be born healthy? I read somewhere that women with this mutation are twice as likely to deliver a baby with Down Syndrome. Again, could this be women who were not aware of their mutation?
    3. How many mg of folic acid should I be taking? I have been taking a prenatal vitamin containing 800 mcg for the past 6 months. I read an article that suggested 3-4 mg daily for women with MTHFR, but this seems so high to me. That is literally five times the amount that I have been taking. Also, I heard that the folic acid should be RX, not OTC.....true?
    4. Do I need to see a Hematologist or schedule an appt. with my ob/gyn?
    5. Does simply having this mutation place me in a high-risk pregnancy category?
    6. Will I need to be placed on blood thinning meds after I conceive, or is this primarily dependent upon my homocysteine levels? (I am to be tested on 9/3). What about after delivery....will I be able to discontinue the meds, or are they something I will need to continue for life?
    I am very confused at the moment and scared that my chances of conceiving and delivering a healthy baby are slim; I hope I am wrong.
    I would appreciate any advice, info or support you have to offer!


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  3. #2
    MimiMeems
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    Hey Foodie,

    First... don't get upset and worry to much... i have an amazing story of success and well i try to answer some questions first but no worries. However I am no expert and any regular posters feel free to correct me.

    1. What are the chances I can conceive and carry a baby to term?
    I did before i even knew i had MTHFR, % will vary by person and if you have elevated homocysteine levels.

    2. If and when I do conceive, what are the chances that my baby will be born healthy?
    You have no concerns for an unhealthy child if you begin the Folic Acid supplement as soon as possible and preferably as much time as possible in advance to a pregnancy. The risk of spina bifida and NTD decreases once you have the needed folic acid. and remember having MTHFR does not mean that you have been lacking in Folic Acid, it just means that you could be one day.

    3. How many mg of folic acid should I be taking?
    I bleieve the amt recommended is 3-4 mg daily. But check with your docotr as this too can vary depending on the person. I am not sure the difference for RX vs. OTC. I am on RX folic acid 1mg tablets, where i take 4 every morning. But i intend to ask my doctor about folgard.

    4. Do I need to see a Hematologist or schedule an appt. with my ob/gyn?
    Either i would think would be fine if they know enough about MTHFR and if they feel comfortable treating you. My OB is the one who dx'd me and Rx'd my meds.

    5. Does simply having this mutation place me in a high-risk pregnancy category?
    I don't think so...but i am not an expert. although i loved seeing my high risk doc... it meant lots of reassuring ultrasounds ... made me feel great.

    6. Will I need to be placed on blood thinning meds after I conceive, or is this primarily dependent upon my homocysteine levels?
    To tell you like my doctor told me.. "MTHFR is not a pregnancy issue, this is a you issue, and you will need to take folic acid forever." And well i do, it's not too bad... i just swallow my pills after i brush my teething in the morning.

    ?I am very confused at the moment and scared that my chances of conceiving and delivering a healthy baby are slim; I hope I am wrong.
    I would appreciate any advice, info or support you have to offer!

    -So my story.... I have a balanced robertsonian translocation and MTHFR... both i learned of well into my 3rd pregnancy. my first 2 were m/c due to chromosomal issues... so i do not think my MTHFR interefered there. My third pregnancy at almost 3 months along is when i learned i needed to be on folic acid and well i was worried the whole time b/c i had not been taking any for the first trimester when NTD are at their highest. To top that off... I found out from the transolcation that my chances of a normal baby were 33% where I would either have a balanced translocation like myself or a perfectly normal chromo arragement for my child. Oh and to make the numbers scarier... i had a 33% chance of miscarring at anytime, a 16% chance of a stillborn deformed baby and a 16% chance of a living and severely medically needy baby. To think I was worried with all of that and then...... my doctor found a singal umbilical artery (SUA)or 2 vessel cord which is considered a soft indicator for birth defects.... so i was frazzled to say the least. But 9 months later I had a beautiful and healthy child with no birth defects, no severe medical issues and her chromosomes are just perfect. Now I have not yet had her tested for MTHFR but i will soon. So please don't worry as much as you are.... you will just need to take folic acid as i have been doing and well i am hoping to be TTC again soon.

    Best Wishes,
    Mimi


  4. #3
    FoodieinFL
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    So sorry to hear of your two losses Mimi, but congratulations on your baby girl.
    Thanks for your input. May I ask if you were or currently are on Lovenox or Heparin? I've heard so many women reference these, and just wonder if it is always necessary to be placed on one of them after conception.


  5. #4
    MimiMeems
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    Nope... i conceived her naturally and then started the 4mg of folic acid along with prenate elite prenatal vitamins when i found out everything at3 1/2 months into my pregnancy. And she was and still is a quite healthy and intelligent almost 2 yr old. Oh ... I have in last few months started taking a low dose AKA baby aspirin in preparation of having another one. By all means consult good and knowledgeable physicians... but don't worry yourself to no end.
    I appreciate your sympathy for my losses... but I have to say that my hind signt singht since then is amazing... in that if I had successfully carried either of these babies to term, well I would never have concieved and met my dear daughter. So I thank God dailey for those losses as well as my healthy little girl. I do believe God will take care of you... but of course he wants you take care of yourself too. I can only tell you to remain hopeful, always be prepared for anything, make plans but be willing to have them change and even be open to alternative ways of having children. I had dd on own/naturally after 3 trys and well we tried again twice via IVF w/ PGD and no success, so I am awaiting some adoption packects to complete, I am meeting with Geneticist to confirm my chances to concieve on my own again a healthy child.. .and then I have suscibed to free egg donor sites in case I choose to do IVF with a donor egg. Just stay hopeful and open minded, follow good medical advice and your heart.. and the child that was meant to be yours will arrive one of the many ways they do.
    Best wishes,
    Mimi


  6. #5
    FoodieinFL
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    Thanks again. It's nice to hear success stories!


  7. #6
    Ruth41
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    Fear not! I am hetero for MTHFR and lost 6 pregnancies before having my son. During pregnancy #5 I was told I was MTHFR positive and lost the baby almost immediately thereafter as I was not on blood thinners. I was on MTHFR therapy for my 7th pregnancy and had a perfectly healthy and robust baby boy.

    The protocol has been posted on this site numerous times. When I was pregnant, I took 2 Folgard daily and 1 40 mg shot of Lovenox my entire pregnancy. I stopped the night before my scheduled C section and went back on it 2 days later.

    I believe firmly that were it not for the MTHFR diagnosis and the Lovenox shots, I would not have my son. So be happy you were diagnosed instead of upset. You are no longer in the dark and you have new hope for avoiding any pregnancy losses.

    I think the Downs connection is for women who are not on Folgard therapy. I think I read somewhere there is a link between low Folic Acid and Downs and that is why MTHFR women would be at higher risk for a Downs baby IF THEY ARE NOT ON FOLGARD. If you flood the body with Folgard (which has Folic Acid in it), you will absorb more Folic Acid (which the MTHFR gene mutation makes it hard to do) and you should be fine.

    Best of luck.


  8. #7
    FoodieinFL
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    Ruth, thanks for your info.! So sorry about your many losses; I cannot imagine what you've been through. I met yesterday with a maternal-fetal specialist for a second opinion, and he basically contradicted everything that the high-risk ob/gyn said. He stated that he is very familiar with my condition (again, I am homo MTHFR C677T), and that about half of his patients have it. He said that lovenox will not be not necessary when I conceive as there is not enough evidence linking pregnancy complications with this disorder. He said that since my homocysteine levels were normal (7.2), I would be fine with simply taking Folgard. I now feel torn between both doctor's opinions, and am not sure which course of action to take when I do conceive. Any thoughts?


  9. #8
    Ruth41
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    I ran into the same problem. In the end, I opted to use Lovenox for the entire pregnancy for these reasons; it's relatively safe, no office has more experience w/ MTHFR patients and pregnancy than Dr. Beer's and they recommend it, I had lost 2 pregnancies that were chromosomally normal while on Folgard and baby aspirin, I wanted to give my baby the best chance for survival and Lovenox was what other MTHFR women were telling me had worked for them. My homocysteine levels have always been normal and yet I lost 6 pregnancies before finding Lovenox and having my son. I feel VERY strongly that you should try the Lovenox. I realize it is expensive and painful. I do not suggest it lightly. I belive firmly that I would not have my son without Lovenox. Further, my ob/gyn, who was originally leary of using Lovenox but agreed to support me in my decision, is a FIRM believer in it now in large part because of my success. She recommends it to other patients whereas 2 years ago she did not. She is also seeing alot of success with it in her practice. Doctors are not God. We must remember that and use our best judgment to guide us. I was not prepared to lose another baby and that was the reason I listened to other women above the caution of my doctor. Interestingly enough, my ob/gyn has told me in the past few years she's noticed that Lovenox babies tend to be born before the due date (not premature) and seem to be a little larger and healthier than non-Lovenox babies. More food for thought. But I will close with a reminder; I lost 2 pregnancies while on Folgard and aspirin alone. Clearly, it was not enough for this homo MTHFR lady.

    Best of luck.

    Ruth
    Last edited by Ruth41; 10-07-2008 at 11:24 AM.


  10. #9
    Charity
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    FoodieinFL...I am in almost the identical situation as you, and I have to agree with Ruth on this...I have had a m/c of twins and a chemical pg, then found out I was homo C677T for the MTHFR mutation. I had been on baby aspirin and extra B6, B12 & prenatals with the 3 cycles after my m/c, and I went on to have two BFN's and a chemical on cycles that sperm counts and mature follicle counts were off the charts.

    It was a difficult decision, but felt that Lovenox was necessary for me to get pg, so much so, that I have switched RE's. The RE that I had been seeing refused to prescribe prior to a positive pg test, and because of my history, and the fact that some very good cycles ended in chemical or BFN, I wasn't willing to accept this. While there is inconclusive evidence whether MTHFR has an impact for successful pregnancies in women with normal homocysteine levels, taking Folgard, and generally healthy, why wouldn't a doctor err on the side of caution and prescribe it, considering the negative effects associated with the use of Lovenox are inconclusive, as well? I have now consulted and taken on a new RE who has prescribed Lovenox for me for my future cycles. I can't say for sure if this will be the "magic", but at this stage, I believe it may be a key to our issues. We've been pg twice out of 4 cycles, it's just a matter of issues with or shortly after implantation.

    Also, please know that there are several other mutations that haven't been mapped on the genome yet, so you may have other issues that can be compounded with the homo MTHFR, but are not yet diagnosed. I keep that in mind with respect to the unknown.

    Ultimately, you have to choose what's best for you, but for my situation, I wish I had known about my MTHFR situation and Lovenox years ago. It may have saved my babies, my heartache, and a ton of money in the long run. Take care hon, and I hope the right decision makes itself evident to you. Baby Dust!!
    Me 38 DH 36
    1st IVF/ICSI Oct06-No Fert
    1st IUI w/Inj Jun07-BFPX2/MC
    2nd IUI w/Inj Mar08-BFN
    3rd IUI w/Inj May08–Chem
    4th IUI w/Inj Jul08-BFN
    Dx Homo C677T MTHFR Aug08
    5th IUI w/Inj Mar09-BFN
    6th IUI w/Inj Apr09-BFN/Chem?
    7th IUI w/Inj Jul09-BFN
    Hypothyroid Dx Feb10
    IVF in 2011?
    Hoping For A Natural Miracle In The Meantime


  11. #10
    FoodieinFL
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    Thanks so much to both of you for your great advice. I feel pretty certain that I will opt to do the injections once pg. Question, though.....I know that Lovenox is the preferred med, but, unfortunately, it would run me about $1700/mo due to my huge insurance deductible. Is Heparin just as safe and effective? It is significantly less expensive, though I do realize that it requires 2 daily injections, as opposed to lovenox's one. If Lovenox is my only option, I'm afraid I would have to go the pregnancy without.....


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