I have mthfr and i have no idea what to do!!!

This topic contains 7 replies, has 1 voice, and was last updated by  Sara-Rae Remmel 1 year, 6 months ago.

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  • August 4, 2012 at 6:30 pm #3039

    Rhonda Lemay

    I was dignosed with mthfr 1 copy c677t and copy a1298c Three years ago after I had a 38 week still birth and three months later a miscarriage at 2 weeks pregnant.I did get pregnant and delivered a full term healthy baby boy in 2011. My midwife and ob doctor told me my mthfr wasn’t serious because I delivered two healthy children prior to my still birth and miscarriage. They said the still birth was due to a nuchal cord.So in 2010 when I was pregnant I took prenatel vitamins and that was all.They gave me the option of baby asparin and that was it and I was afraid to take it after the still birth. I live in Wisconsin and feel awful.I have been to multiple doctors for numerous reasons and I think they feel I’m crazy! Ihave crazy symptoms: Numbness in my fingers and feet, tummy issues, visiual disturbances,achy arms and legs, extreme fatigue, lack of concentration,forgetfullness,i’ll be super fatigued and my pulse will be 100.I have so many more symptoms but thesestance are to name a few!!! I’m not on any supplements can you please tell me if the 2 genes I have are serious and what supplements to take. Thanks, Rhonda

    August 6, 2012 at 4:37 pm #3064

    Emily

    Hi rhonda,

    i am so sorry for the loss of your child. Such a sad thing to hear. i am homozygous, so i am not sure if heteros need as much treatment as we do, but I have to take methylfolate in order to feel like a normal human being. you may need that, too. you can order it online. a vitamin maker “swanson” makes a good version. i also felt EXTREME fatigue and lack of concentration and also had a very high heart rate constantly (in fact, once hospitalized for a week in ICU for ventricular tachycardia). the doctors had no idea why i was having it. now i know it is because of this mutation.

    good luck to you and i hope you feel better ASAP!

    August 28, 2012 at 11:33 pm #3279

    cbriggs

    Rhonda, I also live in Wisconsin and have the same mutation as you. Can you contact me via email?

    August 29, 2012 at 10:04 pm #3287

    Lynn_M

    Rhonda, having compound heterozygous, as you do, is considered the most serious of the common MTHFR mutations. The father’s genetic input to the fetus is a variable your doctors aren’t considering as to why you’ve had three healthy pregnancies and two failures. If the father has MTHFR, either homo, hetero, or compound hetero, that could impact whether your fetuses have been homo, hetero, or compound hetero. Without special precautions, such as sufficient methylcobalamin, methylfolate, other cofactors, avoidance of toxins, and perhaps lovenox or aspirin, the fetus might have to struggle. The fetus’ MTHFR genome does impact it’s viability. MTHFR isn’t the only factor that could cause a pregnancy to go awry, but it needs to be treated appropriately.

    The doctors think you’re crazy because none of the diagnostic categories they studied in medical school included MTHFR mutations. So they can’t recognize that there might be a common denominator for all your symptoms. They don’t have an explanation, so easier to call you crazy. Your symptoms do sound serious.

    Look through the articles tab on this website’s header to find lots of information. There’s an article about the C677T protocol that will offer guidance on supplements. Also, Dr. Ben has some great audio presentations included in that section. Sometimes it’s easier to get started by listening.

    August 30, 2012 at 12:36 am #3291

    Patti

    lynn,

    why do you say that compound heterozygous is the most serious? that is what I am.

    August 30, 2012 at 3:14 am #3296

    Lynn_M

    That is what any of the literature I’ve read says. I think the reasoning is that you have two crippled genes, not just one.

    August 30, 2012 at 2:49 pm #3302

    Patti

    can you recommend any literature.

    October 25, 2012 at 3:53 am #3952

    Sara-Rae Remmel

    Rhonda, I am so sorry to hear about your baby angels.  My thoughts and prayers are with you!

    I am in Wisconsin, too (Milwaukee area).  I gave birth to a healthy son in 2008, then in 2009 gave birth to my sweet Lincoln, who passed away one hour and 23 minutes after birth (he had Potter’s Syndrome).  Third pregnancy gave us another healthy boy, then two consecutive miscarriages this year.  My OB finally did some testing to see why I miscarried.  The results showed MTHFR c677t.  Doc said no connection whatsoever to miscarriage, but I think otherwise.  I also have many symptoms listed above.  Tired all the time!  Zero concentration! The list goes on.  I am looking for a doctor who knows something about MTHFR and it’s connection to miscarriage, fatigue, lack of concentration, etc.  If anyone has a good doc in Wisconsin, please let me know.

    In His peace,

    Sara-Rae

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