Fiddle, Fiddle, & More Fiddling (a.k.a. “What is a maintenance dose?”)

Pic of the day - Cajun Music Party

THE DOSES

This is the distilled down description of what I did, without the explanation, for those who are coming back to this post and just want a quick reference of the numbers. Remember to talk dosing and timing over with your doctors!

Note:
mg = milligram
mcg = microgram
1 mg = 1000 mcg

In the Early Days

1 mg 5-L-methylfolate daily in morning
1 b-complex (without folate or folic acid) daily at lunch
1 mg methylcobalamin daily at evening

After Injury

2 mg 5-L-methylfolate daily in morning
1 mg 5-L-methylfolate daily at lunch
1 b-complex (without folate or folic acid) daily at lunch
1 mg methylcobalamin daily at evening

When Healthy

400 mcg 5-L-methylfolate in morning twice a week (usually M/Th)
1 b-complex (without folate or folic acid) daily at lunch
1 mg methylcobalamin at evening once a week

THE STORY

I’ve been taking extra methylfolate for a few years now. I started out following the general ideas from Dr. Ben Lynch’s MTHFR site, but without following his protocol (since that meant buying the vitamins that he sells, and I couldn’t find information about them anywhere other than on his site). So I’ve been cobbling things together on my own, through experimentation and how my own body reacts. This is absolutely the hard way to do things, but I haven’t found a doc who knows enough about it to give me advice. Dr. Lynch makes one very important point in his protocol:

“Now – the supplement recommendations need to be tailored to the individual – again – regardless of which genetic variants you have. Working with a physician trained in this area of medicine is key. The recommendations of supplements are merely suggestions and ones that I may recommend to a patient or physician. They are not flat out must-haves nor must one take all of them.”

Personalize it. Tweak. Fiddle. Refine. Change things up. Experiment. Customize. Listen to your body. Here’s what I’ve found myself doing over the past few years, and what I’m doing now.

When I started, I’d been very sick for a lot of years. Decades. So, my body was in pretty bad shape, and had a lot of healing to do. I wasn’t sure at that point if the methylfolate would actually help, or what was the right dose for me. I started out with small doses (400mcg), and couldn’t even tell I was taking them, so I bumped it up, and up. I ended up taking a daily dose of about 1 mg (1000 mcg) for the first year or so. For a while I felt amazing. Then I started to have some of the side effects mentioned on Dr. Lynch’s site, so I started mixing things up, and added in some methylcobalamine (methyl-B12).

I was feeling decent, but then I had another illness, and felt crummy. I found that when I was sick, I needed a little extra. I bumped the dose up to 2mg (2000mcg), and when I felt better, I bumped it back down to 1mg/day. Then, about two years ago, I had a major injury. It took me a few months to even think of it, but I found again I needed to take a LOT when I was healing from the injury! I ended up taking 3mg a day for a while! And I had to take it all before noon, or it kept me awake at night. I split the doses 2mg when I woke up and another 1mg at lunch. For the record, while this is an enormous amount for me, this is nothing compared to what is typically prescribed by docs. One prescription form of methylfolate is called Deplin, and the lowest dose given for it is 9mg, THREE TIMES what I was taking at the highest level. During this time, I took another methylcobalamin at night, since that was supposed to help with sleep. I cringe at the thought of taking prescription levels of this, and have read innumerable comments from patients on Deplin in various online forums.

I was in physical therapy for almost two years, but finally ‘graduated.’ That’s when I really started to have trouble with the methylfolate. I had settled into a combination of vitamins that worked for me, and I felt pretty good most of the time. But now I wasn’t feeling good. I’d take my vitamins, and feel worse. I’d feel so tired, I’d take an extra methylfolate sometimes just to try to come up with enough energy to get through the day. Then I’d be so severely fatigued that I was convinced I had been glutened and that this was in reaction to hidden wheat in my diet. I was baffled trying to find how I’d been glutened. Sometimes I was so fatigued that I would forget to take my vitamins in the morning. Eventually I noticed that when I forgot to take my vitamins, I actually felt BETTER. I did some digging online and found a new-to-me post from Dr. Lynch about exactly this happening to people, where their bodies would start to have a reverse reaction to the methylfolate. The important part for me was way at the end.

“Just think of a bell-shaped curve. Before you started taking methylfolate, you felt terrible. You began taking it and started to feel good. Day after day goes by and you continue to improve. In time if the above things are not corrected, you will begin to slide down the other side of the bell-shaped curve.”

OK, so I stopped taking methylfolate. Briefly. After a few days, I started to feel awful again. I’ve found that right now, if I take even a small dose of methylfolate every day, I feel awful. But if I don’t take it for 3 or 4 days, I feel awful then, too. So right now, I’m in the process of trying to figure out what is the right maintenance dose for me. There’s these ideas in healthcare of therapeutic dose (what is needed to treat a problem), loading dose (kind of how to get to the therapeutic dose faster), and a maintenance dose (what it takes to feel OK when you aren’t sick anymore but still need at least a little of the med).

Loading Dose vs. Maintenance Dose

So, what I’m doing currently with respect to methylfolate (which will probably need to be tweaked again later) is this. I take the smallest dose I can find (400 mcg) twice a week, and 1mg of methylcobalamin once a week. I exercise a lot now (which is a big difference from what I could do before), and I eat a lot of green leafy vegetables. As I eat more of those, I may need less of the methylfolate. We’ll see.

Now, it’s important to mention that these are not the ONLY vitamins I take. There are several others which my docs recommended as supplements because of my celiac and gluten-free diet. There are vitamins I take for other conditions. They all fit together and there may be interactions between them. Obviously, there are also other conditions that can … intersect with MTHFR. For example, we know that having one copy of the MTHFR defect is protective against some kinds of cancer. That’s a good thing, right? And it helps explain why MTHFR defects are so common and wide spread. But this also could mean that there are possible issues for methylfolate supplementation for people who either have or are at risk of having cancer.

I try to bring up these various issues with my doctor when I have appointments, and I try to sort things out on my own as much as possible. I know, not everyone can do that. It’s really tricky. Part of the problem is that we just don’t KNOW what we need to know yet about this. It’s becoming obvious in the research literature that MTHFR genetic status and testing is important in many many conditions, but this isn’t widely known among clinicians, and what to do about it is even more obscure. Talk to your docs, but don’t leave this entirely in their hands. Join forums at MTHFR.net and at Patients Like Me, where many folk generously answer questions. Don’t trust all those answers, but use them as a starting point to learn more, research, and for what questions and conversations you should be bringing to your own doctors.

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.