Many people with MTHFR mutations find that methylfolate, the very supplement that they are advised to take, doesn’t seem to agree with them.
“Methylfolate makes me feel awful.”
“Methylfolate makes my child go crazy!”
“I am never taking methylfolate again!”
I’ve heard all of these many times on facebook forums for people with MTHFR mutations. Yet, methylfolate is the most commonly recommended supplement for people with MTHFR mutations – and with good reason.
Amongst the bad advice that many MTHFR patients receive, the two biggest mistakes I see are:
- recommending high-dose folic acid; and
- suggesting that people with MTHFR should go straight out and take methylfolate.
I have already addressed the folic acid question in my previous article, so this article is going to talk about taking methylfolate, and why you shouldn’t rush into that!
So… you’ve found out that you have the MTHFR gene mutation. Since that results in lower levels of methylfolate in your body, and methylfolate is kind of critical, you think you should take some methylfolate.
That makes sense!
So you buy some, you take a capsule, and then …. it gets bad.
Not for everyone. Some people are lucky. But at least 90% of people have side effects.
These are the most common stories I hear:
“I felt jittery, shaky, anxious, ‘weird’, ‘wired’ or panicky.”
“I hurt all over. Every joint and muscle ached.”
“Every symptom I’ve ever had came back at me with a vengeance.”
“I felt nauseous and nearly threw up”
“I had a six-day long migraine”
Children sometimes react a little differently:
“He was bouncing off the walls until midnight!”
“She just cried and cried all day – everything that happened in her day was taken as a total disaster and she just lost it.”
“I have never seen him so hyperactive in all his life.”
“She had a high fever for two days and was really tired” (I’ve actually heard this story from two different parents, and it kind of perplexes me as it’s a bit of an unusual reaction, but as I’ve learned, with methylfolate reactions, almost anything is possible.)
And my personal favourite – the child who literally destroyed a grand piano when given a dose of Deplin (a very high-dose prescription methylfolate supplement.. and one I would never use).
What causes these reactions? We need this stuff, right? How can a natural nutrient that is already in your body create such havoc?
Let me take you on a little imagination trip:
The body makes methylfolate to perform a function called methylation. (If this is a new area for you, you might want to read my MTHFR primer first.)
Methylation is a critical process that detoxifies steroid hormones, heavy metals, and environmental toxins of all kinds. It also makes neurotransmitters and breaks them down, amongst other things.
Now imagine that methylation is a pipe. But because of your MTHFR mutation, not much methylfolate has been made, so there is a block in your methylation pipe.
Unfortunately, your body has no respect for the fact that your methylation pipe is blocked, so it keeps making steroid hormones, breathing in toxins and pumping out neurotransmitters. (Probably for the best that it does, really!). And just like if you keep pouring waste down a blocked drain, “gunk” has been building up behind that blockage. Ew.
Imagine then that we suddenly remove that blockage – just like that, gone. What happens then? Well, as any plumber can tell you, all that built up gunk immediately flows down the pipe (which can be pretty gross.) Now remember that pipe is your body, as I take you through the top five reasons why you may react to methylfolate……
You started too fast
This is one of the most common mistakes.
Whatever you do, DON’T take the full capsule the first time! Start slowly.
Imagine that pipe is your body. Don’t you think it would be much less disgusting to let just a little of that gunk out at a time, so that it doesn’t flood the whole rest of the pipe beyond the blockage?
You’d be right. Go slow.
One way to go slow is to take a smaller dose, and the other way to go slow is to take it on a full stomach so that the food slows the absorption of the methylfolate. I recommend combining both strategies at once. Your body has to detoxify all of this gunk.
Give it a chance to do that at a pace it can handle.
You overmethylated in response to the sudden increase in methylfolate
This one can get a bit complicated and there is a LOT of misinformation on the web about overmethylation.
Let me just say that overmethylation is not something you do all the time. You are not a permanent overmethylator. That’s simply not possible, despite what some people may have labelled you as.
However some people are prone to overmethylating when they increase their intake of methyls – temporarily.
It’s when your body just can’t keep up with the sudden increase of neurotransmitters in your brain. The brain says ‘hey wow, haven’t had many methyl groups lately, now that we’ve got plenty, let’s go to town on the making of all this stuff we’ve been unable to make for a while!’
But then, seconds later it says ‘ah but hang on, we aren’t used to having so many neurotransmitters around so we’re not equipped to break them down that fast!’ This tends to result in symptoms of feeling ‘weird’ or ‘wired’.
I’m also pretty certain it’s responsible for the angry outburst/meltdown/hyperactive type reactions in children too. It’s akin to unblocking your pipe, only to find that the pipe beyond the block is a bit too small to accommodate the flow of water down the pipe now.
But it’s ok – unlike pipes, your body can adjust to the new flow, and it will. Going slowly also helps to prevent overmethylation reactions. Giving extra niacin (vitamin B3) also helps a lot. Most people only need extra niacin temporarily, but a standard dose of niacin should always be included in your B vitamin regime. Get professional help to know how to handle this type of reaction – overmethylation reactions can be very serious, particularly in persons with mental illness, anxiety or depression.
You were lacking one of the other nutrients required to use methylfolate
This is kind of like unblocking the pipe, but then finding that the pipe beyond the block had holes and cracks – all that gunk had to travel down a pipe that wasn’t fit to carry it.
It’s important to have all of the other nutrients in place that are required to break down toxins and neurotransmitters and work with methylfolate.
These include zinc, magnesium, all the B vitamins, iron and others. This doesn’t mean that you need to be supplementing all of these, but you may need some or all of them if you don’t have enough body stores, or have other genetic mutations that mean you need more of them than you have.
I would say that inadequate B12 is the most common reason I see why people who have started methylfolate slowly have reacted badly. B12 takes the ‘methyl’ from methylfolate and uses it to recycle homocysteine.
If you haven’t got enough B12, the methyl group can’t come off the folate so it gets ‘stuck’ there, unable to be used. (You may have heard others refer to methyl-trapping. This is the phenomenon I’m talking about.) Moral of the story: get the rest of your nutrients in place, especially B12, before starting folate.
The form you are taking may have other ingredients that don’t agree with you
Some of the prescription methylfolate drugs, such as Enlyte, also contain large doses of folic acid.
If you don’t already know why that’s bad, then you might like to read this post.
There are also often other additives in supplements, particularly the high-dose prescription ones. Watch for added colours, sweeteners, folic acid and goodness-knows-what.
This may be the simplest solution to reactions: get a pure, trusted brand, with all excipients declared!
You’re taking too much
To treat the nutrient like a drug and make a patented product, some pharmaceutical companies are making methylfolate products like Deplin with milligram quantities of methylfolate.
In reality you’re unlikely to need more than a few hundred micrograms. Doses such as 15mg of methylfolate have no place in anyone’s body and greatly exceed the amount of methylfolate that any normal person makes, even if they eat a folate-rich diet.
I am amazed that anyone tolerates these products, to be honest.
Stick to low dose supplements (bearing in mind that you may eventually need to take a few capsules, or not) and don’t believe the hype that you need a truckload of this stuff.
The fact is that you don’t need much more than the average person makes from their food folate, which ain’t all that much.
And That’s the Ballgame
There you have it, methylfolate reactions explained.
Work with your practitioner as always, especially when it comes to finding out what other cofactors you need, and most especially if you have had some issues with overmethylation, or know that your genes make you prone to it.
The good news is that I have yet to come across any of my patients who needed methylfolate who could not tolerate it once all of these factors were addressed appropriately. It can be tricky, but in my experience it can almost always be done if it has to be. Best of luck!