What Works for Me. So Far. Right Now.

It's … Complicated

So, here’s the short version of what seems to be CURRENTLY working for me with the vitamin supplementation. (Additional details are in the “It’s Complicated” post.)

1. Diet, Part 1: Celiac

Gluten free is absolutely NOT optional for me.

2. Diet, Part 2: MTHFR

I eat a lot of high folate foods. Quinoa seems to especially make a difference, and I’ve learned that I should not go more than a day without quinoa. Red quinoa works better for me than white quinoa, but they are close. I thought black quinoa would be even better than red, but instead it’s the reverse. My body tells me that black is not as useful as white. Even with supplementing for folate, I find I still need a dose of quinoa at the least every 2 days. I have no clue what is in it that makes me feel better, but it’s health food, so I’m not going to quibble over it.

3. Vitamins, MTHFR

* 1 – 400 or 500 mcg tab of Methylfolate (a.k.a. 5-MTHF, L-5-MTHF, L-methylfolate, bioactive folic acid, Levomefolic acid, metafolin, metafolate, methylfolin, optimized folate)
Taken by mouth in the morning, swallowed, and again at lunch time.
DOSING: Standard recommendation is 1 mg, which is the same as 1,000 mcg. I am taking half that. Why? Because with all the folate in my diet, I thought I should start small.

* 1 – 500mcg OR half of one-1mg tab methylcobalamin (a.k.a. active cobalamin, mecobalamin, MeCbl, MeB12, Mevocon, meticobalamin, metacobalamin)
Taken by mouth in the morning, dissolved on tongue, and again at lunch time.


WHY

I am going to drastically oversimplify this. Briefly.

I’ve been having problems for many years now with cognitive functioning, severe enough that I talked with my doc about it, multiple times. Unfortunately, the problems are erratic, and when my brain works, it works pretty darn well. Not as well as it used to, not as well as I’m accustomed to, but well enough that the docs aren’t worried. Here’s what’s been worrying me.

– Deep fatigue
– Memory loss
– Short term memory impairment
– Confusion
– Disorganization

Basically, it is a lack of energy and sparkle, combined with feeling lost and uncertain. I used to be so productive, and loved keeping active. The last few years it’s been more of a case of struggling to make it through most days, trying to find times for extra rests and naps, planning my days to avoid pushing myself past my abilities.

What the folate with cobalamin is doing for me is this. I stay awake through the entire day, even if I’m glutened. Even if I’m tired, I’m more alert and clear-headed. I make better decisions. I have better follow-through on things I promise to do. I’m more coherent. I communicate more clearly. I remember things better. I’m more cheerful, and less snappish.

I’m not going to say the folate with cobalamin is a miracle answer. I’m still working out the right dosage for me, and the right timing of those doses. I still get tired. I especially get tired if I forget a dose, or take a dose late. I seem to bounce back about an hour after remembering to take the dose.

There are good days and bad days. The deal is that even the bad days are better. Heck, my bad days now would have been one of my good days a year ago. My good days now remind me of when I was twenty years younger. It’s not perfect, but it’s better. I’m hoping that as I figure out the right dosage and timing, I may yet find a sweet spot where I actually feel good consistently, and function well consistently, where I can makes plans with some assurance of what I’ll be able to do.

It’s … Complicated. (A.K.A. “MTHFR Deficiency, Sequel”)

Paper Quilt: SciMaps, Completed, Back View

This whole deal with MTHFR has ended up being so much more important than I first thought it would be. Pretty amazing to me. I’ve been meaning to talk about it here, but I’ve been so swamped with writing for work, and the information I’ve been collecting and developing has been a real up and down experience. Kind of confusing, at first glance.

It’s actually rather ironic. I started out learning about the MTHFR mutations last June, with a post that said, “I dug around a bit online and found out this is, shall we say, not a bit deal.” Then I heard things that made me think maybe it was a little more complicated, and worth a second look. I learned more. And more. And saw a trend toward this topic building in awareness among researchers. This lead to the point where I was saying, “I was tempted to run out and just buy pregnancy vitamins or folic acid vitamins.” The next step was talking this over with my doc (“I have the docs OK to start folate supplementation once I have my labs drawn.”).

Shall I warn you that the learning new things didn’t stop there? Briefly, with the changes the doc and I agreed to in my appointment, I should be off all prescription meds within six months. Pretty amazing, after the way things have gone the last ten, twelve years. We’ll reassess at that point, but I’m still heartened.

I received the lab results, with a note from the doctor that everything was fine. There was no reason not to go ahead and start the folic acid supplementation. I did wait a while, because the lab results I received gave NO indication of a normal range. I spent a couple weeks trying to find one, without any luck whatsoever. I ended up asking the wonderful folk at LabTestsOnline, who told me there is no universal normal, that it differs from lab to lab, and that the lab should have supplied that info. Darn them! They did for everything else, just not for the one piece which was the most important test result for me.

While I was looking, I did find a lot of research talking about the dangers of over-supplementation with folic acid leading to a variety of common cancers in folk with MTHFR. Oh. I also found that MTHFR protects against some cancers (mostly leukemias), while it predisposes to others. You figure with this being as widespread as it is in the general population, there almost had to be a benefit to it!

The piece about over-supplementation with folic acid being potentially dangerous to folk with two copies of the MTHFR mutations was VERY interesting! You see, folic acid is in most of our food supply, added in the manufacturing process with the encouragement of our government. This is logical, given what we knew about folic acid at the time the decision was made.

1. Folic acid is known to strongly help prevent birth defects of many sorts.
2. It is water soluble, and it is almost impossible to overdose with it. Extra folic acid just washes through the body.
3. Since it is difficult to get young women who might get pregnant to take extra folic acid when they aren’t planning to get pregnant, just in case, supplementing widely with folic acid is a great way to help get them just enough of the stuff to help prevent birth defects in the first few months of the pregnancy, when they might not yet know they are pregnant.
4. And it won’t hurt anyone else who doesn’t need it, because it is water soluble and the body will just get rid of what it doesn’t need.

Except it turns out that, while this is true for almost everyone, it is not true for those with two copies of the MTHFR mutation. In them, it looks as if the folic acid may not be properly processed by the body and doesn’t actually wash through. Instead it might be building up, and then predisposing this relatively small group of people to various new health problems they might not have had without the folic acid. However, this same group of people are the ones who need folate supplementation more than anyone else. They just can’t digest the most common way to treat that need. It’s complicated. Really complicated. And I didn’t figure this part out until later.

I’ve read things from a few different people suggesting that perhaps folic acid supplementation combined with what we are learning recently about the MTHFR mutations might explain some of the rise in certain chronic diseases, such as certain common cancers and autism and others. As far as I know, this hasn’t been examined closely, but I haven’t gone looking for it either. Something else to explore.

Learning what to do about MTHFR didn’t get easier at that point either. I started supplementing with folic acid when I received the test results, while I kept researching and reading and downloading articles. I was taking the smallest dose I could find, and felt better immediately. A week or so later, it didn’t seem to be working as well, so I upped the dose. Then I started to experience some of the signs of too much, mostly being jittery and having trouble sleeping. I started taking it in the morning instead of at night, with a second dose at lunch, none in the evening, and that fixed the sleeping problems. And then I started to feel worse again, as if I wasn’t taking anything. Around the same time, I was poisoned with trace amounts of gluten a couple times, so I wasn’t certain whether feeling worse was as a results of celiac+gluten or something related to the MTHFR.

Time for more digging. It took a little time, since I wasn’t feeling great. I did keep supplementing with the folic acid, however, because when I didn’t, I felt even WORSE. Also, I had noticed this incredibly surprising thing. When I was “glutenized” while taking the folic acid, I didn’t get as many gluten-symptoms. Briefly, I’ve noticed that I still get the hives (dermatitis herpetiformis), the joint aches, the generalized pain, and the intra-oral swelling. What I am NOT getting the severe debilitating fatigue, confusion, memory impairment, and other cognitive issues that normally accompany the other gluten symptoms. Very, VERY interesting! Unfortunately, this probably won’t work for other celiacs unless they also have two copies of the mutated MTHFR gene, so don’t go running out to try it. Certainly, not without talking to your doctor first!

This was about the time that I learned I should NOT be taking the folic acid, because of the problems and risks described above. There is another formulation that I should be taking. Oh, what is that, you ask? Good question. I’ve found quite a few different names for this. Ten. Ten different names for the folic acid alternative.

5-MTHF
L-5-MTHF
L-methylfolate
bioactive folic acid
Levomefolic acid
metafolin
metafolate
methylfolate
methylfolin
optimized folate

Now, try walking into a vitamin store and asking for help finding this. Really, I mean it. It’s awfully entertaining, unless you actually want to find it. Pick one of those names and ask. It won’t work. Trying listing all of them, and watch their eyes glaze over. Yeah. I did finally find some in town, at Whole Foods, but while they realized that the bottle labeled FOLATE said in fine print “metafolin”, they still had no clue what it was for, why anyone would want it, or the difference between “metafolin” and folic acid.

Another part of the question was how much to take. I couldn’t find much that was useful in the way of official recommendations. In the research literature, what I kept seeing were new articles from the last few years, in which the last few lines of the paper would say something like, “For patients with two copies of the MTHFR mutation, they might require more folate than other patients.” But I couldn’t find anything to give me any advice about what I should be doing, except this one naturopathic web site. Normally, naturopathic web sites are not my first choice, but I was looking for the best available evidence, and this was the best I could find. I liked that he was very conservative in his approach, starting small and titrating up as needed, and including dietary sources in the evaluation.

I eat a lot of high folate foods, and always have. Even as a child, I’d spend my allowance on fruits and vegetables instead of candy, and these days eat a lot of green leafy vegetables, tons of quinoa, and liver. Like I said before, I have cravings for high folate foods. So, I started on a low dose of the metafolin. So far, so good. The stuff I found at Whole Foods was awfully expensive. I bought more online.

The MTHFR.Net site said to take the methylfolate with methylcobalamin. I don’t know why. I wasn’t doing it yet, so bought some of that online at the same time. When the vitamins arrived in the mail a few days later, I took a tab of the methylcobalamin. The next morning, my brain felt more clear than it has in a very long time. The two together seemed to genuinely make a difference. The methylfolate alone was a huge help, but the addition of the methylcobalamin made everything just … click. It felt like something shifted into the right place.

Then I broke out in hives. That’s odd, I wonder where the gluten came from? After taking a second tab of the methylcobalamin (which turns out to be a formulation of B12), the hives got much worse. Oh. The vitamins have gluten in them. And I have four bottles of them. Jolly. I am hoping the store will take back the unopened ones. I found some without gluten at the People’s Food Co-op.

What has happened for me? I feel pretty awesome. I mean, actually, I feel NORMAL. Like I used to feel before I had kids. Well, not completely, but at least I can remember what that felt like. I am hoping that now I’ll be able to start doing some of the other things to reassemble my brain and body.

Typically, for me, when I find a solution that helps me feel better, it works for a while, then the benefits start to wear off as my body adjusts. I am really hoping that doesn’t happen this time, but I am expecting it. I am wondering how long I’ll feel good this time. We’ll see. In the meantime, I’m grateful.