MTHFR

I’m trying to put together a post on MTHFR. It’s been difficult to figure out what I want to say and what medical information is important to give.

Let’s start with my personal brand of MTHFR 🙂  According to my lab work, I am compound heterozygous for MTHFR mutations. “Right…” You say. “What does that mean?” It basically means my body can’t absorb Folic Acid. I can’t metabolize it or Vitamin B9. Does that make any more sense? Not to me. Not even almost a year after diagnosis. I still don’t understand.

What do I do to treat my MTHFR? I take Folic Acid and baby aspirin. Oooohhh, big deal, huh?

From the research I’ve done in the past 11 months and from what the doctors have told me, it seems like something that is life altering. Yet, my life doesn’t seem that different. In fact, most days I wonder if taking this extra folic acid and aspirin are really helping. And helping what? I don’t feel any different. I’m 31weeks pregnant. I can’t stand taking pills. After taking 3 folic acid pills a day, I missed a couple and nothing happened. So, I put myself down to 2 folic acid pills a day (and the baby aspirin). Still don’t feel any different. I guess right now it’s a waiting game. I’m wondering if I should get retested after the baby is born. Maybe there was a mistake? Maybe I really don’t have it?

According to some websites, MTHFR can cause pre-eclampsia, placenta abruption, IUGR, stillbirth, having a baby with chromosomal abnormalities, recurrent pregnancy loss, clotting problems, strokes, hypertension, and heart disease. They say this is all hereditary. Yet, nobody in my family has these issues… except me. And the only ones I’ve had are miscarriages, possibly mild pre-eclampsia, and IUGR with one of my pregnancies. My other three full term pregnancies were fine. I was born with a heart defect, but I don’t think it’s connected.

People with MTHFR are supposed to be on a blood thinner when pregnant. My doctor recommended Lovenox injections. I refused. I took the chance that my body would take the extra folic acid and aspirin and do what was needed with it. And so far, it has.

 So, were my tests wrong? Or am I the only one in my family to have MTHFR? Are there other family members suffering from it, but not sharing the information? And what would happen if after I have this baby, I stop taking the medicine? Do I really want to risk stopping medicine and end up having a stroke? No. But, do I want to keep taking these pills for the rest of my life? No. But, I am lucky that this is the only thing wrong with me. I am blessed to be so healthy.

Advertisements

15 Comments »

  1. Amy Kiel Said:

    I was doing a search on “who’s talkin'” for MTHFR and came across this post. I am learning about MTHFR ( just recently) and also about how this affects you, your pregnancy, as well as some new “supplements” that can help you get Folate when you have MTHFR.
    I am not selling anything, I am an health activist/advocate and am just researching the information for a site I contribute to called WEGO Health. I am going to write a blog post on this topic very soon. Feel free to visit me there at http://wegohealth.com/profile/AmyK and join the pregnancy group there!
    Let me know if you want to “talk” about this topic.
    Best wishes,
    Amy

  2. Krys Said:

    First off, I have what you have. I am compound heterozygous. I did not find out because of fertility problems. There were 2 other women that I work with that have medical problems and the one that is my closer friend suggested I go and listen to her doctor give a seminar. I’m a chemist, not a biochemist by profession, but what he had to say made extreme sense about MTHFR. He described my mother’s health problems to a tee. I can see myself in the same health track as my mom. So, I had to get tested. If I had it, then maybe my mom had it too (since we get 1 gene from each parent). Sure enough, I have it. Sure enough (as soon as I found a doctor in my mom’s state), she was tested and she has it. That still means my dad has at least one mutation too, but my guess it that it’s only one, since he doesn’t have the health issue mom and I do.

    My doctor, Neil Rawlins, laid out symptoms (and the medical journal articles that backed him up – and it wasn’t his research) that have been associated with MTHFR mutations. Migraines, fatigue, depression, anxiety, IBS, just to name a few in addition to the fertility problems. The regimen he has me on does not include the classic folic acid and baby aspirin. If your body can’t process folic acid, what’s the point in taking it? If your body is processing a part of the folic acid that it’s given, then maybe flooding the system might work. Instead, I have been prescribed L-methyl folate. That’s what your body would make if it processed folic acid properly. In other words, it skips the steps that aren’t working and starts up where the body left off. I am also taking a multitude of vitamins and supplements, including methyl B12.

    I have been on this regimen for a couple of months and I feel more upbeat and energetic. My husband sees a huge difference in my attitude. Not that I was totally a which before, but its better now. I haven’t had a migraine in months. My migraine trigger is perfumes and my step-daughter sprayed a couple of them over the holiday that would have typically done me in, but I was fine. I look at it as a new way of life, for me an my family. Plus, when I do get pregnant, my body will be better adjusted.

  3. LW Said:

    hi,

    I was just recently diagnosed this b/c I had 2 miscarriages after two perfectly healthy pregnancies…I took a battery of blod tests. They diagnosed me with MTHFR and I am now taking the baby aspirin and 4mg of folic acid. I didn’t get any more info and I’m just wondering …what do I have? What will happen once I have a healthy baby…will I have any future problems and do I need to take these meds for ever? I have never heard of this….should my sisters be tested?

    • wishingstar97 Said:

      You should find out from the doctor which MTHFR you have and then do research on the specific one. I believe there can be health problems other than miscarriages, but what depends on which MTHFR you have. They told me I would have to take Folic Acid and Aspirin forever, but I don’t… I hate taking pills. I will take them again if I get pregnant again, but until I do more research or see more doctors, I don’t plan on taking them now. The specialist did tell me to have my daughters tested when they’re older. It is genetic, so your sisters probably should be tested. You might benefit from seeing a hematologist (blood specialist). Get a couple opinions if you can. Good luck!!!

  4. Jennie Said:

    Hi,
    After two miscarriages and turning the age of 35, I have found the best Obstetrician in the world. I was diagnosed today with this gene you guys are calling MTHFR! I couldn’t understand why I couldn’t carry a baby full-term. My sister has had three children and no problems what so ever. However, I have not been in a relationship where I wanted to have a child and I have always been the gypsy type and I loved moving around constantly so having children just wasn’t in the cards for me, until now.
    My first miscarriage was over two years ago and my pregnancy ended at about 11wks, but I passed it naturally and it looked as if it had stopped growing weeks earlier. This past April I found out I was pregnant and I just hoped for the best. However, at about 6 wks I began bleeding just as before and I stayed on bed rest for the next two weeks, only to be told from the E.R. that I was going to have a spontaneous abortion. I wanted them to be wrong, but it was only two days later and I was having full blown contractions and I passed the sac in the bathroom on April 17th. I was torn emotionally.
    My grandmother lives with me and one of her hospice nurses recommended an Obgyn that she thought could help me Dr. Roque. I need to say I also suffer with RSD or CRPS a chronic and progressive nerve disorder. I actually had to take the tissue from the toilet and bag it up and take it to her but this happened on a Sat. and she got me in on Monday. She said normally they wait to investigate miscarriages until there have been at least three, but at my age they would jump on it. Thank the Goddess!
    I bought $45 worth of vitamins one which is 42 fruits and veggies and the other is omega 3’s with EPA and DHA,. Also, she called me in a prenatal vitamin called Preque 10 and she wanted me to start on all this right away. She said I needed to wait one cycle and then try again. After they drew 5 viles of blood and sent me on my boyfriend on our way and said they’d call when she got the blood work back.
    Well, I finally had a period but it lasted three weeks. It was only 2 or 3 days after I had stopped bleeding the my man and I did the deed so I really didn’t think I’d be able to get pregnant that quick and I didn’t think I was ovulating. Wham bam, I’m pregnant! It is so frustrating because I am afraid to be happy. I had my appointment today with Dr. Roque to go over my blood work and she was surprised too that I was pregnant already but she was glad to say she knew why I had had these past miscarriages. She read off the name but it was so long I had no idea what she said other than it had to do with the way I metabolize folic acid. So today I was prescribed 4 mg of folic acid daily, vitamin D 2, and progesterone to help support the pregnancy. I am so grateful I have been taking these other vitamins too already, but who knew?
    Well, my grandmother had 3 miscarriages and my mother had two. Also, back in the 50’s, the doctor gave my grandmother some type of medicine (I can’t remember the name) that was suppose to prevent miscarriages, which it did do that. However, it caused my mother to have an infantile uterus. It was not suppose to be handed down to the next generation. They did tell my mother that she would never have children and she had three! My sister is fine but I guess I got this gene, lucky me. I’m just glad to know what it is and hopefully this pregnancy will go great. Blessed Be to you all and many healthy babies.
    I

  5. Susan Said:

    Hi, I work with Neevo. I came across this entry, and saw your new blog. I’m so sorry for your losses. With regards to your MTHFR diagnosis, your body has less of the MTHFR enzyme that converts folic acid into l-methylfolate. NeevoDHA contains l-methylfolate, which bypasses the MTHFR polymorphism. You can find out more information here: http://www.neevodha.com/ Additionally, if you would like to learn more about overcoming the flaws of folic acid, please email me at susanw@pamlab.com and I will invite you to our next webinar.

  6. patty Said:

    I am 32 yrs old and a few yrs ago i was told i had mthfr…..my first pregnancy i got hellp syndrome and almost died….i was only 20 weeks along my baby lived for 2 in a half weeks…..since then i have had 6 misscarriages…..ive been on lovenox twice a day baby aspirin, vitiamin b6 and b12 also progestrone for my last two prenancies and still ended up miscarrying…..im so scared i really a child im ready to give up….im only getting older and the risk will be greater…….

    • wishingstar97 Said:

      I’m so sorry to hear about your losses. I have had 6 miscarriages now, but I’ve also been lucky to carry 5 to term. I never needed the lovenox. It was recommended, but I never used it. I miscarried with and without the folic acid and baby aspirin. I think there may be more to it – for me anyway. Good luck!! Are you seeing a specialist?

    • Holly TH Said:

      Patty,

      I am sorry for your losses. Have you been diagnosed with MTHFR?

      • wishingstar97 Said:

        Yes, back in 2008. Thank you.

      • Holly TH Said:

        Patty,

        Have you ever taken a supplement containing L-methylfolate as an alternative to folic acid for MTHFR with any of your losses?

      • wishingstar97 Said:

        Nope. I started taking the Folic Acid and the Baby Aspirin. One of the OBs wanted me to take Lovenox, I told her no and she pretty much said “don’t come crying when you have a miscarriage”. I didn’t. Gave birth to a healthy baby girl. With this pregnancy, I wasn’t even on anything until 6 weeks in. I don’t like taking pills or shots or medicine or vitamins. LOL. I hate swallowing anything. So, when I wasn’t pregnant, I wasn’t going to take it even though the hematologist I saw told me to. When I found out I was pregnant, I started taking the Folic Acid and Baby Aspirin.

        I just wrote all this and realized I’m not Patty 🙂 LOL!!! Well, I’ll just post it in case anyone is interested 🙂

  7. patty Said:

    Yes i actually changed doctors now……their not saying anything new i guess wait til i get pregnant again and pray to god everthing goes well……thanks

  8. Holly TH Said:

    Patty & WishingStar,

    I am so sorry for your losses. It seems so unfair that some people have to have such struggles.

    Because of your MTHFR polymorphism, you both have a limited ability to break down folic acid into its active form, L-methylfolate. This puts you at risk for folate deficiency related pregnancy complications. Folic acid is synthetic and must be broken down in a four-step process. You might want to ask your doctor about L-methylfolate as an alternative to folic acid. I work with NeevoDHA which contains L-methylfolate and is specifically indicated for women with MTHFR. L-methylfolate is the natural and active form of folate which is immediately usable for DNA synthesis and repair. It is just a piece of the puzzle to consider.

    If you are looking for other ladies who have been in your shoes Babycenter has a large group of women with MTHFR who have had RPL. Many of them are on prenatals containing L-methylfolate for their MTHFR.

    I wish you both the best of luck in the future.

  9. Kari Said:

    Please understand that it is also Prevention, that if you cannot make enough Folate and b12, than you cannot make enough Glutathione and then you are not clearing your toxins as you should be, and depending on your toxic load, if more than earlier but usually it starts at Mid age, with health issues, and auto immune diseases. Look up MS and MTHFR the lack of B12 is huge and it can be mistaken for MS. You can get Very sick with heavy metals, look up on line heavy metals and MTHFR. It is an expensive road to health again and at times lost. You want to see Dr. Rawlins videos on line at you tube.
    For those of us who have suffered the placenta problems, losses of babies and then our health at mid age, Please avoid this. You may not feel the difference taking methyl folate and methyl b12, that is good that Might show that you caught this early enough. But you take it as you would Vitamin D, or calcium , but even more so, it is so important for your health and keeping you healthy. So you do not have the problems down the road, that is the Blessing with genetic medicine. Please look into this more. And yes the other people writing here told you how you want to take methyl folate and Methyl b12, Not folic acid. See Mark Hyman on line google his name and Folic acid and you can read more on the two and understand it more. You do not want to take a lot of Folic acid, it is synthetic and as far as I understand it can cause cancer rates to go up. You want methyl folate, that is usually shown as 5-MTHF on a vitamin, Thorne makes their multi vitamins with both Methyl folate and methyl b12, and they have been a well known respected company. They also make a product called Methyl guard plus. Ask your Dr. IF your Dr. wanted you to take Folic acid and more of it, I would find a NEW DR.


{ RSS feed for comments on this post} · { TrackBack URI }

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: