*Updated 28 Oct 2014*

When I found out I was compound heterozygous for MTHFR, my first thoughts were of regret. I have never refused myself anything when it comes to what I now think of as toxins: rich food, wheat bread, alcohol, dairy products, sugar, fast food, etc. How much damage, I thought, have I done to my body over the last two decades? Because when you have a MTHFR mutation, your body often doesn’t detoxify as well as “normal” people. The pathways that create crucial substances in the body like SAMe and glutathione are impaired. I am lucky that, aside from my hypothyroidism, I haven’t yet been plagued with medical problems like fibromyalgia, chronic fatigue syndrome, migraines, diabetes or the many others that can affect a person with MTHFR mutations.

supplements

Of course, I’m still reasonably young in my early thirties and I have to think that those health problems could or would be coming my way as I age. I have, however, had issues over the years with anemia, mild to moderate depression, insomnia, chemical pregnancy/miscarriage, tinnitus and digestion. My homocysteine levels were elevated at 9.4 back in April.

I don’t want to turn this post into a confessional, but I was also a cigarette smoker for many years. I was proud to put them down for the last time in 2006 and hope that my quitting has restored the health of my lungs and my body. But, while I’m not an alcoholic, I do enjoy beer and wine and have never held back when having drinks with friends or during our sometimes constant travels. My husband and I would often end a stressful day with a drink or two. Sometimes this would affect me and sometimes it wouldn’t. For a long time I thought I had allergies to sulfites in certain wines because I would feel sick after imbibing them. When I stopped taking birth control pills (another MTHFR no-no that I ingested for several years), those reactions seemed to dissipate. Now I realize that perhaps it was the combination of the two toxins that was too much for my body to handle. Alcohol is actually toxic to everyone, so it would be wise to cut back or eliminate it whether you have a genetic mutation or not. I now only drink alcohol on special occasions and always in moderation.

If you are like me and also have a MTHFR mutation, you might be wondering what you can do about it. I am not the person to completely solve that mystery for you. But I am developing this site to share what I’m doing and perhaps some of my lifestyle choices and manifestations will inspire you or help you mimic the same behavior should you choose to do so. My starting point has been the wonderful website MTHFR.net and, in particular, the page there about the basic MTHFR protocol for those who have one or two copies of the C677T mutation.

The recommendations from this page that I am currently incorporating into my life are as follows:

  • A switch to supplements containing the active forms of B vitamins (6, 9 and 12)
  • Changing to a gluten-free and dairy-free diet (I am still consuming goat cheese at this point.)
  • Eating only organic food including an increase in fruits and vegetables
  • Avoidance of nitrous oxide, antacids, certain medications/drugsfoods containing folic acid and processed foods
  • Drinking only bottled water (or heavily filtered water) and having at least two liters of it a day plus daily electrolytes
  • Eating only grass-fed, free-range, hormone and antibiotic free meats and eggs
  • Improving my gut health

These are in addition to the other precautions I already take because of my hypothyroidism.

I have also incorporated a number of additional supplements into my regimen. I’ve added these slowly as recommended. The primary supplements I am taking support my body in the production of glutathione, which MTHFR patients are usually deficient in. In addition to all of this, I see a wonderful acupuncturist weekly for hormone balancing and do Pilates twice a week. I’m of normal weight and feel healthy.

Wandering the aisles at the supermarket the other day, I was overwhelmed. Both by the amount of information I’ve taken in over the last couple of weeks and also with gratitude that there is so much that I can still eat. I can’t help but think that had I discovered my condition several years ago that perhaps there wouldn’t be so many choices and so much labeling in foods and beverages for people with special diets. Ironically, I used to whiz down the “special diets” aisle thinking, thank goodness I don’t have to worry about any of THAT! Well, as it turns out I do. And I suspect that many more people also should be following a restricted diet and do not, simply because they are unaware of their health status and have no idea how much our over-processed, highly toxic lives harm our health. These mutations are pretty common and it would be beneficial for more people to get tested. Not that it will be smooth sailing once you simply find out that you have a MTHFR mutation.

Product marketing is often killing us, especially when it comes to food, drink, pharmaceutical and lifestyle choices. We cannot look to the mainstream media and medical establishments and expect to follow their doctrines and lead healthy lives. As I’ll explore in my next post, most of the things in our modern world are tailored towards the quick-fix, the fast-buck and the most convenient solution. This goes for shopping, for medicine, even for your career. Something I will aim to do with this website is to present healthy alternatives, and to talk about living slightly outside of conventional norms when it comes to health and wellness. I don’t claim to be an expert on holistic health, integrative medicine or alternative therapies, but this is a subject that I’m passionately curious about and over the last year I have delved deeper and deeper into how these practices can help me in my own health journey. As much as possible, I encourage a discussion around these topics on this website. Please share your own knowledge with me and others.

If you have a comment that is related to your own health or have questions that require an answer, please leave these in the community discussion forums and not in the comments below. Thanks! =)

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23 thoughts on “Where Do We Go From Here?

  1. JUDI SELSET

    I have tried to get on your news letter list and it will not come thru for you to validate me. I have no idea why.
    Because I have both MTHFR 1298C and 677T…I was diagnosed about a year ago and no one ever said anything about what it meant. I’ve been reading Dr. Lynch’s information and am trying to get more so I understand what to do. I turned 72 in October and I had a pacemaker placed 5 days before my birthday. I am on warfarin and a calcium channel blocker. my brain is mush and I thought I was going into dementia..and maybe I am but it think it also could be be a link to MTHFR…I also have hashimoto’s. I need to read what to do…I’ve found a Naturopath who begins treatment with the 23 and me..test immediately. I hope it works for me…can you figure out how I can get on your mailing list. thank you if you can get me on your mailing list

    Reply

    1. Andrea Post author

      Please check your spam folder, Judi – I tried adding you, maybe the verification went there? I will also try now to add you from the back end

      Reply

  2. Melissa

    Hi Andrea, thank you for this post. I am 22 years old, a senior in college and was diagnosed with MTHFR (C677T double mutation) this past November. Being so young I never really took my health seriously. While I never smoked or drank much, I definitely enjoyed eating whatever I wanted. Then, after being diagnosed, I was devastated. I had never heard of MTHFR and felt helpless and confused. This post is one of the most comprehensible and hopeful ones I have ever read. I am so happy that I found your blog and can learn from other people going through the same thing as I am.

    Reply

  3. Amanda

    Hi,
    I was diagnosed with A1298c back in 2011 after 3 miscarriages. I have been trying to find a book or a good website that would give me more information on this stupid mthfr gene 😉
    Because some symptoms or issues ive had in the past now make sense. Hence the birth control I took for many years I did not know it was not good with mthfr.
    Anyways, any recommendations on a good detailed website or book, or heck even a good doctor who knows what it is? In my area there are about 3 doctors that know what it is!
    Im looking to change my diet and see if I can some what feel normal. 😉 thanks

    Reply

      1. Tanya

        Andrea

        What are your homocysteine levels now ? How often did you have them checked once you found out you had MTHFR
        isn’t 9.4 considered to be in the normal range? But on the higher side of normal

        Reply

  4. Hannah

    Hi! I just found out I am heterozygous c677t and I’m taking 500 mcg of methylfolate a day. I wanted to ask if you know if it is dangerous to drink alcohol while taking methylfolate or is it just not recommended because the supplement becomes less effective? I’d like to have the occasional drink but I’m a light weight so it wouldn’t be too much.Thank you! I

    Reply

    1. Andrea Post author

      I don’t think it’s dangerous at all… alcohol is supposed to decrease methylation, but I have had someone tell me that they feel better after a beer (not from being drunk, as in they need less methylfolate). That stuff is all very individual. I don’t think heavy drinking is good for anyone, but everything in moderation I wouldn’t worry about the occasional drink.

      Reply

      1. Hannah

        Thank you! Now I feel better. The only info I could find said “avoid alcohol” but it never said why so I wanted to make sure it wasn’t dangerous. Thanks for replying so quickly! 🙂

        Reply

        1. Andrea Post author

          No worries – just so you know, I’m not a doctor (please see the medical disclaimer throughout this site on the righthand sidebar) but personally I don’t think the occasional drink is an issue for you much more than anyone else (barring liver or kidney issues).

          Reply

  5. Jill

    I have recently been diagnosed with homozygous A1298c/probable adrenal fatigue and have an upcoming appt with Dr Bob Miller at Tree of Life. The last 10 years have been not good-migraine,vertigo, tinnitus, chronic fatigue, digestive issues… . There was a point in 2011 that I thought I was done with a normal life or any life at all but with diet change(for the most part dairy and grain free) I am at least functional on a day to day basis. I could fill a large trash can with the supplements I have tried, not to mention the dollars I have wasted. I look forward to any info on this subject and advise to do EVERYTHING you can do now to avoid getting any worse.

    Reply

    1. Andrea Post author

      Be sure to check out the other blog posts, Jill. Sorry to hear that you’ve had such a tough time! Thank you for sharing your story, Andrea

      Reply

  6. Lindy

    Hi Andrea
    I’m new to the MTHFR — my child has compound heterozygous also — we found out after he got sick from toxin exposure. I just found out last week I have heterozygous 677T, but then homozygous TCN2 defect so apparently my body has a hard time getting B12 into the cells. Plus I have severe hypo, and have adrenal issues the last several years and a congested liver. Some of my health issues are starting to make sense — but I’m still learning about where to go for now. My son didn’t have the TCN2 test, but now I think he should get more testing. Didn’t know I had so many defective genes!

    Reply

    1. Andrea Post author

      Hi Lindy – thanks for sharing! I think many of us have “defective genes” that compete with our environments. The good news is that you’re being proactive, preventative and learning more about it all. Wishing you luck on your journey to better health =) Andrea

      Reply

  7. Vanessa

    Hi…I know it has been a while since this post and I am not sure if you have found a practitioner yet who specializes in the MTHFR defect but I also have this condition and have found an excellent Natureopath who will Skype with people and offers webinars to doctors who are not familiar with this condition. His name is Dr. Bob Miller and he is located in Ephrata, PA at Tree of Life Health Ministries (www.tolhealth.com).

    Reply

    1. Andrea Post author

      Hi Vanessa – thanks so much for the recommendation! I do have a doctor now but perhaps this will be helpful to others. Appreciate your taking the time to comment!

      Reply

    2. Stacey

      Vanessa…We see Dr Bob over in his Gap office ( my husband is compound hetero) I go to all the appts with him since I am an RN and can help decipher the information and take my own questions. It is exciting to see bits of improvement in my husband…hope things are going well for you well.

      Reply

  8. Michele Durig

    Andrea, I have a question and a comment. Throughout your life have you struggled at all with feeling like you have less energy than others? That’s the one thing that has been with me since I was a kid and I’m trying to figure out if it’s related to MTHFR. My mom says that even as a kid, at an age when most kids fight going to bed, I would “disappear” in the evenings and she would find me asleep in my bed. And although I went to bed early I still had trouble waking up in the morning. That’s still a problem to this day.
    My comment is that I’m 48, but when I was your age I could have written almost exactly what you wrote, except that I didn’t know about my MTHFR (C677T double mutation) until a few months ago. I hope, and I really want to believe, that since you discovered it before developing a lot of the associated health problems that you will avoid them altogether. My health started to decline by my mid to late 30’s, and the last 7-8 years have been a real struggle. Had I known sooner I would have made a lot of changes. I hope you get the benefit of making the changes early.

    Reply

    1. Andrea Post author

      Hi Michele, Thanks so much for your comment! Fatigue has not really been a problem for me until the last year or so, which I had diagnosed as adrenal fatigue. I wonder if this is something you could speak to your doctor about? He or she could run a 24 hour saliva cortisol test to look for low levels of cortisol at inappropriate times of the day. It does occur in children. I would also think that toxin build-up could cause fatigue, and then there is chronic fatigue syndrome (CFS), which is associated with MTHFR. I’ll be writing about that in the coming weeks. I do hope that a shift to methylated B vitamins and healthy lifestyle changes will be life-preserving for me – and please don’t think you are too old to make changes in your own health! I have heard miraculous stories of people who got their methylation going and addressed their toxin issues, providing them with 180 degree improvements. Wishing you good luck and good health for 2014! =)

      Reply

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