S2E9: MTHFR Questions

I love it when listeners leave me questions so here is this month’s roundup!

I don’t have a doctor that advises me about MTHFR. A mental health provider suspected the mutation because of years of resistant depression. She did a swab to test genetics for specific medication absorption which included MTHFR testing.we found that I have compound heterozygous mutations. I’ve been on high dose methyl folate and B12 for a few years and wonder if I should be getting regular tests for levels etc. where should I go? I have researched the topic myself online but it’s very confusing and there seems to be no general consensus. Can you help me? Thank you,

– Jamie L

This is a great question, Jamie because so many MTHFR folks are out there doing it on their own. Unfortunately, online and between practitioners, there is absolutely no consensus on the best way to do this, so really it comes down to finding the right way for you.

I notice you mention methylfolate and B12 and that is great, but make sure you’re taking the other B vitamins as well because they are all necessary for this to work – especially riboflavin. Also, if you’ve been taking high doses of methylfolate without other Bs, then cut your dose down before you start them because the dose might be too high once you get the other pieces of the puzzle in there.

In terms of testing, the things we want to look at specifically for MTHFR are folate, B12, and homocysteine. Testing every couple of years is fine. Testing folate is complicated because unmetabolized folic acid can be mixed into your total so the test isn’t so valuable except to show us trends (like it’s getting higher or it’s getting lower). B12 testing is straightforward as is homocysteine testing and if you aren’t familiar with homocysteine, check out Season 1, Episode 40: Homocysteine by The Numbers.

Outside of testing, the biggest determinant of whether or not you’re on track is your symptoms. How are you actually doing? If you’re not where you want to be, then maybe it’s time to work with a practitioner who has knowledge about MTHFR and can help you on your path.

Hi! I have an 8 year old boy. He was diagnosed ADHD at the age of 6. We started him on methylphenidates at age 7. We have tried nearly all of them and none of them agreed with him. We had gene testing done earlier this year and MTHFR came back as “Low to Intermediate activity”. Majority of the ADHD medications came back with lower odds of response. What do I do with this information? We have family history of bipolar and anxiety disorders. The adhd medications really brought out a lot of anxiety in my child. He is very competitive. He is obsessive. My son has a terrible issue with skin rashes that started when he was 4. We had skin patch testing done. He’s allergic to hydrocortisone, formaldehyde, fragrance. Once we took gluten out of his diet as well his rashes were more under control. Every time I listen to your podcasts I think some of my son’s issues point back to his MTHFR. Do I take this to his pediatrician? Do I work with his psychiatrist? Do I see a functional medical doctor? What do we do next?

– Mindy J.

ADHD on top of MTHFR is very common and it’s a difficult situation because the medications that help so many other kiddos just don’t work here. I DO think that addressing the MTHFR is the next best step. I would talk with both his psychiatrist and his pediatrician and see if either of them is comfortable fielding this issue in a way other than prescribing massive doses of folic acid, because that won’t be helpful.

If they aren’t familiar enough with MTHFR, then find a practitioner who is. It’s always best to work with someone local, but if you can’t find someone then I do still work with people one-on-one. Check the Amy + Health Coaching link at the top of the page on tohealthwiththat.com

This is why MTHFR folks need other Bs. It isn’t just about folate.

Hi! I am compound heterozygous so I of course have the C/T and A/C copies. I am hoping to start trying to get pregnant soon and I want to know what vitamins I should be taking that will work with the copies that I have. I am on 5mg of l-methylfolafe right now but no B vitamins. I tried a b complex and it made me very mean and hateful so I have been scared to try anything else. I want to have the best chance at a healthy pregnancy, thank you!

– Breonna H.

Congratulations on future baby-making, Breonna. That is such an exciting time. I’m so glad you brought this up because it’s really common for people to start 5-LMTHF before other B vitamins or B12 and then have weird reactions to other Bs when they start.

It is absolutely crucial that you do start other B vitamins. I think the reason why the B complex made you mean and hateful before was that with the other B vitamins there, suddenly your dose of 5-LMTHF was way too high so it was actually that causing the mood and attitude changes and not the Bs.

Basically what is happening in this situation is that your MTHFR enzyme is still really limited because it needs other B vitamins to work – riboflavin is a direct cofactor and without riboflavin, it just won’t go. So your dietary intake of riboflavin was maxing out the amount of 5-LMTHF that you can use.

So you do need to add a B complex back in there, but before you do, drop your 5-LMTHF down to 1mg for a couple of weeks and then add the B-complex. Also, check the B12 in the B complex because some people have a weird reaction to methyl-B12 too. Here’s a post on all the different forms of B12.

When you do give this a try, let me know how it all goes!

How do my folate levels drop after starting Metanx and multivitamin with active folate?

– Human

This is another great question, and I’m actually guessing a bit because I don’t know where your folate levels were before you started. I can say that what I see often in clients is that they come in with super high folate on lab tests, but functional folate deficiencies. Once we eliminate the folic acid and get them started on active folate then blood levels are technically getting lower because we’re clearing out the unmetabolized folic acid that hangs around in there cluttering up the works. Or at least that’s what we hope to do. Even as folate levels look like they’re dropping, the person is symptomatically improving.

I see that happen a lot, but if that doesn’t sound like what is going on for you, reach out again and give me a bit more detail so I can answer more thoroughly. Just remember that serum folate measures everything in the serum – usually that includes natural folate, 5-LMTHF that has been made by your body, whatever folate you’re taking, PLUS any unmetabolized folic acid that is still kicking around. It isn’t a great test on in terms of value on its own, but what we can do is exactly what you’re doing, which is compare numbers over time. But typically we want this to drop a bit as the unmetabolized folic acid (or UMFA) is leaving your system.

I *love* listener questions and I’d love to answer yours. If you happen to have a question, let me know. There is a video-ask for questions on the home page of tohealthwiththat.com. I’ll try to do an answer podcast every month or two just depending on how many questions come in. I also love meeting you guys in Genetic Rockstars, it’s an MTHFR community away from the craziness of social media with lots of inside information, polls, tips, and generally other MTHFR folks who are talking about their experiences. Please join us at community.tohealthwiththat.com.

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S2E6: B Vitamins with MTHFR

If you’re following along with our step-by-step process, then you’re well ahead of most people who start their MTHFR journey with Dr. Google. Congratulations. This week we’re going to talk about avoiding one of the biggest mistakes that people make in their MTHFR quest for health, and that is, forgetting that methylfolate isn’t everything.

This is truly the mistake most likely to be made, followed closely by trying to change everything all at once and getting into a tangle.

It’s really easy to think of MTHFR as a “folate thing,” forgetting that the twenty other steps in the pathway that have to happen for MTHFR to have any impact, need other nutrients. Even the one step we’re obsessed with needs other nutrients.

While our mutation does have “folate” in its name and that seems like a compelling reason to focus on folate, if folate is all you focus on, it isn’t going to work out.

I’m not sure if anybody remembers S1E1 when we talked about how MTHFR was like a magic chair, but lets revisit that idea.

MTHFR is a gene. A tiny genetic code that help your body to build an enzyme of the same name. Enzymes are a special type of protein that I like to talk about in terms of being a magic chair. The magic that happens in this chair is like alchemy – it’s a lead to gold type of transition. Essentially, the magic chair turns something reasonably worthless into something incredibly valuable. Like I said, alchemy.

The MTHFR magic chair turns folate, folic acid, and folinic acid into the active form of the nutrient that actually does something in your body. This folate-gold, is called methylfolate or 5-L methyl tetrahydrofolate, if we want to be specific. Without the magic chair, the methylfolate never happens. If methylfolate doesn’t happen then things start breaking down.

MTHFR in the simplest terms possible – it’s a magic chair.

We see errors in cellular reproduction, problems with turning on or off particular genetic signals, trouble building neurotransmitters, inability to kill off damaged cells, toxins piling up, and big issues with conceiving babies, carrying babies, and building the central nervous systems on which healthy babies rely. The methylfolate gold is vital in helping us prevent cancer, prevent heart disease, reproduce, and maintain our mental, physical, and emotional wellbeing. It really is gold.

So for genetically “wild type” humans, which is what researchers call people with the typical MTHFR genes, this enzyme functions as well as it can given their nutritional status. It can still be compromised by lack of quality folate and lack of cofactors, but those are the only things slowing it down.

For MTHFR folks, the different mutations, most commonly C677T or A1298C, cause the chair to change shape a bit. Essentially, they give the chair a lump somewhere really important, like the seat or the headrest. Something that makes it hard for the folate to effectively sit in the chair so it can undergo the magic that turns it into methylfolate gold.

MTHFR mutations that matter are A1298C and C677T

So as the very basic point, I’m hoping you understand that you need the chair and the folate to click together. What we haven’t talked about, is what is needed for the magic to happen. Remember back to our alchemical change here – we’re making lead into gold and that’s a big deal. So obviously some magic happens, and in this particular case that magic needs another nutrient in order to spark. That nutrient is riboflavin. Riboflavin isn’t in the name of our mutation and Dr. Google doesn’t talk about it as much as he or she should.

So circling back to the initial statement, the biggest mistake that I see in people who have been treating their own MTHFR stuff by themselves, is that they forget about other B vitamins.

I have to point out an obvious fact that is easy to overlook. There are no “C vitamins” or “D vitamins.” There is a vitamin C, singular, and a vitamin D, also singular. So why, then, are there so darn many Bs? The bottom line is that the Bs are all Bs because they function largely as a group. No one B vitamin is involved in any big process that doesn’t also involve some or all of the rest of the B vitamins.

Vitamin C is off doing its own thing as an antioxidant, but the Bs are a team. They are all working together all of the time. Folate is a B. Riboflavin is also a B. Guess how many B vitamins you need for all of the functions related to healthy methylation? Well, the trick answer there, is all of them. Especially when you get off into making things like cellular energy or neurotransmitters and detoxifying things. The Bs always work as a team and if you’re missing Bs, then the process is stalled. Riboflavin is nowhere in the name of our mutation, but it is as necessary as folate because riboflavin makes the magic happen.

Is Riboflavin the only other B vitamin you should be taking? Nope. They’re a team, remember? So as you’re following along with the program, now is the time to start the other B vitamins – preferably in a multivitamin. It’s a great way to get everything in one swift stroke, rather than taking an individual pill for each thing.

The issue is that we don’t want folic acid, because it’s essentially toxic for us MTHFR folks, and we aren’t ready to start 5-LMTHF as a supplement yet either. So what can we do? Well, Ben Lynch, another MTHFR mutant who had the foresight to start a supplement company, called Seeking Health, that caters to genetic issues, made some great multivitamins without anything methylated just for this purpose. They can be a great way to start the journey by giving your body the rest of the “B team” without getting into weird territory with the folate.

If you can’t get those particular products, look for a multivitamin that has 5-LMTHF as the form of folate in the lowest dose possible. One a day multis are not the best choice because they usually have 400 micrograms or more just to meet the daily requirement. Many good multis will be in a two per day or even 4 per day format and a lot of times if you start one of those at the lowest possible dose (like taking 1 out of the 4 pills per day that you’re supposed to take) then you can get a reasonable background of B vitamins with a very low dose of methylfolate. Again, make sure the only folate in the product is methylfolate or folinic acid which is also safe for us.

The goal here is to get ready to start a methylfolate supplement by having a great background of other B vitamins.

By this time you have a couple of weeks of symptom tracking since stopping folic acid and since adding in food sources of natural folate. You may have noticed some changes. From those changes we might be able to predict how your methylfolate start will go.

Stopping folic acid made me feel:Adding natural folate makes me feel:5-LMTHF will probably…
BetterWorsebe difficult for me to tolerate so start with none or the very lowest dose possible.
BetterBetterbe a bit easier for me to tolerate. Still start low, but finding a good dose should be smoother.
Worse – – – I’ve never actually seen this so I don’t know.

Interestingly, we can also predict a bit based on your basic state. Last week we talked a bit about basic state so we don’t need to do so again, but overmethylators generally tolerate higher doses of methylfolate than undermethylators do. It’s a guideline and not a general rule so it’s important for everyone to start slowly and carefully.

Make sure you’ve got all the other B vitamins in there first and avoid the most common pitfall people experience when they are relying solely on Dr. Google.

I’m really excited to say that I’m in the process of building a Patreon page, which is a great way for you to show support for this show if you feel like you’re getting something out of it. I love doing the show and I want to keep putting great information out there for free so that it’s reasonably accessible to people of all financial means. But also, at the end of the day, I have to be able to support myself and contribute to my family’s wellbeing. So if you’re able to become a patron on Patreon, I would really appreciate it and I have lots of special content planned. Now, my site isn’t live just yet – I”m in the process of building it out – but when it is it will be found at Patreon.com/thwt. I’ll see what I can do to get it live before next week’s episode.

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