We might plant potatoes this weekend or next.
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I’ve mentioned before that I have done a lot of research on that MTHFR gene mutation that runs rampant on both sides of my family. The last time I saw my naturopath, I said to him that I thought I was mostly dialed in, but it felt like there was still a critical piece of the puzzle missing.
The MTHFR gene is involved in the methylation cycle in the body. The methylation cycle is complicated and affected by more genes than just MTHFR, but that one seems to cause the most issues. I am homozygous—two mutated copies—for that gene, which downregulates the effectiveness of my methylation cycle by something like 80%. The mutation manifests in different ways in different people. My mother has a B12 deficiency. I cannot utilize folate. Other effects can include blood clots and strokes.
[It is also interesting to note that there is a higher incidence of autism in people with this gene mutation. I’m not going to get into that, because it’s a huge topic and the cause/effect is far from clear, but DD#1, who is a pediatric occupational therapist, does a lot of work with kids on the autism spectrum. She and I compare notes periodically on what we’ve found regarding this mutation.]
Because the MTHFR gene codes for an enzyme called methylenetetrahydrofolate reductase, and the mutation reduces the amount and effectiveness of that enzyme, the focus on “fixing” that gene mutation has always been on folate. It is why foods are fortified with added folic acid, except that the folic acid is synthetic and it actually causes more problems than it solves. The irony is that people with the MTHFR gene mutation do better not eating foods fortified with folic acid.
A lot of medical practitioners will prescribe methylfolate to their patients with this gene mutation. That works for some people. The problem is that other people—me included—cannot tolerate methylfolate. My naturopath and I tried several times to see if adding methylfolate would help me. It doesn’t. I get anxious and angry within a few hours of taking it.
I’ve managed to work around the negative effects of this mutation by taking a B complex with a different form of folate (folinic acid) and a few other supplements. And then I ran across the missing piece. My problem isn’t lack of folate per se; virtually all of my issues disappeared when I began taking 400 mg of riboflavin every day. I started that back in December because every so often I get a swollen tongue and redness around my lips. My dentist remarked on it when I was in to see her in December. I knew it could be related to a B vitamin deficiency—possibly riboflavin—but my B complex had 20 mg of riboflavin in it, which is way more than the RDA of 1.1 mg per day for women. (Riboflavin is a water-soluble vitamin so any excess gets eliminated from the body.) I thought I was getting plenty.
Studies have shown that 100-400 mg per day of riboflavin seems to be a therapeutic dose for those who need it. I started taking 400 mg of riboflavin every day. I told my mother to start at 100 mg a day. (The husband asked me why I was running clinical trials on my family members but my mother is used to me floating these weird ideas. I was the one who figured out she had a B12 deficiency in the first place.) The redness around my lips and the tongue swelling disappeared. The problem wasn’t a lack of folate. The problem was a lack of riboflavin, which is required for folate to be effective in the methylation cycle. And while I didn’t feel bad before—I am fairly healthy and have lots of energy—I feel even better taking the riboflavin. 🤯
It is worth noting here that my mother got headaches at dosages above 100 mg per day of riboflavin. Obviously, she doesn’t need as much as I do.
Here’s the sad part about all of this. Right now, the place where I am finding the most information on this mutation is in the MTHFR forum on Reddit. There are a couple of very helpful, very knowledgable people in that group. One of them has come up with a protocol for people who find themselves with this mutation. I’m going to print out the protocol and give it to my naturopath when I see him in July so he has it for future reference. The protocol starts with optimizing riboflavin levels.
The other new tool in the toolbox is ChatGPT. People are using artificial intelligence to come up with personalized “supplement stacks” based on their genetic data. While I have mixed feelings about AI, I understand the desperation that some people feel. This morning, one of the members of the forum said in a post that, “ChatGPT is light years ahead of my doctors. Not because it has more knowledge but [because] it's actually listening to me.”
I can’t blame doctors. The current medical system is set up to optimize profits, not to help people. and when one treatment shows promise—like methylfolate—they prescribe it to everyone whether it helps or not. (Most B-complexes on the market now contain methylfolate and/or methylcobalamin, which is B12.) When you have a hammer, everything looks like a nail.
I’ll keep chipping away at this. I wish I had had this information decades ago, because I think it could have helped several of my family members, but I’ll use as much of it as I can going forward. Thank you for coming to my TED talk.