MTHFR mutation

[ktgrok]

FINALLY got my 23 and me results, and I'm heterozygous for the one main mutation. I'm guessing that means I should pick up some methylated b vitamins, huh? From what I'm reading my level of mutation means I have about 30% reduction in methylation. Which would explain why i only feel good on high high levels of B vitamins. Because I'm only able to actually use a fraction of them. But it seems that strategy isn't a healthy one long term, so I will find some methylated B vitamins. I'm going to the health food store anyway to look for some DHEA as I'm almost out. Anyone have a brand they like? I'm guessing a B complex is best, something with folate and B12?

[ktgrok]

Oh, and I have a very elevated risk of breast cancer, which was a surprise to me. I don't have a family history of it, but I had mutations that had anywhere from a 7 times higher to a 64 times higher risk. Oops...1.64 times higher. That's MUCH less scary!

Edited February 23, 2016 by ktgrok

[wapiti]

Thorne would be my go-to brand for best quality B-complex, MethylGuard, etc.  Thorne's MethylGuard is too much even for me (I thought my head was going to explode - short-tempered), though I have not tested yet thru 23andme.  A fraction of a capsule would be what I would take, same for B-complex.  (I open the capsule and put some in an empty capsule.)

 

Unfortunately, there can be more involved.  Take your 23andme results to http://geneticgenie.org for free info.  Then, see, e.g.:

http://www.heartfixer.com/AMRI-Nutrigenomics.htm

 

My ds is compound heterozygous for MTHFR and yet methylcobalamin does not help him.  He has a whole lot more going on, including several other genetic defects.  We are considering the heartfixer info and also looking at this guy's approach to my ds's issues:  http://www.alternativementalhealth.com/commentary-on-nutritional-treatment-of-mental-disorders-2/

Edited February 23, 2016 by wapiti

[Veritaserum]

Dh and our oldest both have this mutation. They take methylated folate in addition to methylated B12 (we get ours at Costco).

[Veritaserum]

This is the folate I buy: http://www.amazon.com/gp/product/B002R3G8BS/ref=ox_sc_act_title_1?ie=UTF8&psc=1&smid=A1AWWMXY9GIAFG

 

Our oldest has seen improvement on mental health issues since we've added this supplement.

[ktgrok]

I picked up some methylated folate and B12 today while at Whole Foods (we have a new one, had to check it out). Also picked up more DHEA. Then got home and realized I am almost out of CoQ10. Oops. I'll order that on amazon. 

 

Can't help but wonder about my oldest...my Aspie with mood issues, etc. Thinking I may try to get him to take it too. 

 

[Katy]

nm

Edited July 22, 2016 by Katy

[iamonlyone]

We did a Skype consultation and follow-up visits with Cynthia Smith, a nutrigenomics practitioner. (Google Cynthia Smith, Life Zone Wellness.) Her help was valuable to us as she did look at all of the genetic mutations (our son has homozygous MTHFR ) from his 23andme test. She set up a supplement program and diet revisions that were designed to help with gut and absorption issues and slowly increase acceptance of methylated vitamin B.

 

We also consulted with her for our older daughter. Although her mutations are not as impactful, Cynthia determined some things that our daughter does not break down well (fats and magnesium) and helped us address those issues.

 

Her rates were very affordable when we worked with her a couple years ago.

 

As for vitamins, our son now uses ProThera's VitaPrime, daily, and Seeking Health's Active B12 lozenge, every other day. He had to work up to these with other B products first though.

[Spryte]

I have the mthfr mutation. I like Thorne the best too, per doc's recommendation. Amazon has it, though there are cheaper options if you search.

 

Those of you doing 23 and Me, do you have your doc look at the results?

 

All of my results have come through the doc's office. Years ago, nothing new. But she's recently suggested that I do a 23 and Me panel, which she analyzes. She said it takes about three hours for her to go through the tests she's ordering for me. Is that the norm for 23 and Me tests?

[ktgrok]

Its a LOT of info. The reports from 23 and Me aren't very large, but you can import the data in promethease.com and get all the info. Its a lot. 

 

 

[Corraleno]

I picked up some methylated folate and B12 today while at Whole Foods (we have a new one, had to check it out). Also picked up more DHEA. Then got home and realized I am almost out of CoQ10. Oops. I'll order that on amazon. 

 

Can't help but wonder about my oldest...my Aspie with mood issues, etc. Thinking I may try to get him to take it too. 

 

You should also look at your other mutations, because there are others that interact with the MTHFR mutations, which can require a different form of B12. For example, my son and I have TAQ & COMT mutations, in addition to MTHFR, which mean that we need hydroxycobalamin, not methylcobalamin. For us, methylcobalamin made things worse.

 

The whole methylation thing is a lot more complex than just "if you have one of the MTHFR mutations, you should take methylated B vitamins," and you can make things worse if you're not careful. MTHFR.net is a good source of info, but you'll need to spend some time poking around and reading lots of the articles and comments. There are several forums for people with MTHFR issues, where people discuss various protocols and what has and hasn't worked for them. You'll find that for most people there is a lot of tweaking needed to get everything well balanced. 

Edited June 3, 2016 by Corraleno

[ktgrok]

I bought KAL brand, as that was what I could find. But I'm thinking I'll end up switching my multi once this month's supply is up and get on one that has methylated vitamins in it. Metagenics does, and I've always responded well to them. 

[jenn-]

You should also look at your other mutations, because there are others that interact with the MTHFR mutations, which can require a different form of B12. For example, my son and I have TAQ mutations, in addition to MTHFR, which mean that we need hydroxycobalamin, not methylcobalamin. For us, methylcobalamin made things worse.

 

The whole methylation thing is a lot more complex than just "if you have one of the MTHFR mutations, you should take methylated B vitamins," and you can make things worse if you're not careful. MTHFR.net is a good source of info, but you'll need to spend some time poking around and reading lots of the articles and comments. There are several forums for people with MTHFR issues, where people discuss various protocols and what has and hasn't worked for them. You'll find that for most people there is a lot of tweaking needed to get everything well balanced. 

 

How fast did you feel worse on the methylcobalamin/what side effects did you have?  I just took my first one this morning and now I'm paranoid because I am also homozygous for TAQ (as well as MTHFR).  My dr. office just said go get some b12 off the shelf, but I ended up ordering Deva brand quick dissolving stuff. This is an expensive endeavor for tweaking things.

[Guest]

I bought KAL brand, as that was what I could find. But I'm thinking I'll end up switching my multi once this month's supply is up and get on one that has methylated vitamins in it. Metagenics does, and I've always responded well to them.

I like metagenics but they're pricy for the efficacy, unfortunately.

[Liz CA]

I would see a naturopath who is familiar with these mutations. Otherwise you may have to rely on Dr. Ben Lynch and his website.

I am on a product by Metabolic Maintenance but to get something specifically targeting your mutation, I would talk to an ND - especially if you are trying to have a baby.

[ktgrok]

I like metagenics but they're pricy for the efficacy, unfortunately.

 

Yes, yes they are :(

 

But...I feel SO much different when I take their Bariatric vitamins (they own Bariatric Advantage). Like...night and day difference. I've never had that from a vitamin before. And when I used their hemagenics when I was so feaking anemic I was being threatened with a blood transfusion it worked, and fast. I was way up in two weeks. So I just trust them. Despite the price tag. 

 

I'm looking at their prenatal wellness kit, and it's NOT cheap. But, it has calcium, magnesium, and DHA supplements in the kid. When I add up what I pay for each of those things separately it isn't THAT far off. 

 

I'm actually looking to get DH their regular wellness pack. 

 

Edited to add: the bariatric version doesn't have the methylated B's, which is why I'm thinking I may switch once I'm done with what I have. 

Edited February 24, 2016 by ktgrok

[ktgrok]

I would see a naturopath who is familiar with these mutations. Otherwise you may have to rely on Dr. Ben Lynch and his website.

I am on a product by Metabolic Maintenance but to get something specifically targeting your mutation, I would talk to an ND - especially if you are trying to have a baby.

 

I'll do some research. Because I'm heterozygous I'm less worried than if I was homozygous. And only on one of the genes, the other is normal. I did use genetic genie to get a bigger picture, and will keep researching. 

[Corraleno]

How fast did you feel worse on the methylcobalamin/what side effects did you have?  I just took my first one this morning and now I'm paranoid because I am also homozygous for TAQ (as well as MTHFR).  My dr. office just said go get some b12 off the shelf, but I ended up ordering Deva brand quick dissolving stuff. This is an expensive endeavor for tweaking things.

 

I felt incredibly anxious and irritable on methylcobalamin; Wapiti mentioned upthread that she felt like her head was going to explode, and lots of people experience those sort of symptoms when they are "overmethylated." You can reduce the symptoms by taking tiny doses of niacin (B3), although that has it's own side effects (skin flushing) and it's very hard to find niacin pills that are small enough — I ordered the smallest dose I could find and was cutting them into quarters or eighths. Hydroxycobalamin is apparently the preferred form of B12 for people who have certain TAQ/COMT mutations.

 

When I first read about the MTHFR mutation I was really excited because it seemed to explain so much, and the short articles I was reading made it seem like a simple fix — take methylfolate and methylcobalamin. But the reality is so much more complicated than that, and the more I read the more crazy and confusing it all seems. And you're definitely right about the expense — trying lots of different things, in different doses, trying to get things balanced can cost a lot of money. There are only two manufacturers of hydroxycobalamin as far as I know, and those pills are quite expensive. Plus I have a whole cabinet full of stuff we've tried that either didn't work or made things worse.  :sad:

 

Edited June 3, 2016 by Corraleno

[iamonlyone]

 

 

  But the reality is so much more complicated than that, and the more I read the more crazy and confusing it all seems. And you're definitely right about the expense — trying lots of different things, in different doses, trying to get things balanced can cost a lot of money.

 

Those factors were where the nutrigenomics professional we saw were so very helpful. She knows more than I ever will about the subject, and she knew ahead of time what order to introduce supplements and how to avoid certain things and slowly increase dosages. She told me specific symptoms to watch for and what to do if those symptoms showed (like how much to cut dosage or whether to cut the supplement completely). The two-hour initial consultation was under $150 when we did it a couple years ago (not sure of prices now). And she was awesome about promptly answering all my follow-up email questions. If I needed further phone consultation, it was billed per half hour (and I don't remember the rate, but it was reasonable too). Both my kids had protocols that were implemented in stages, and they both did very well.

[lexi]

Dh and our oldest both have this mutation. They take methylated folate in addition to methylated B12 (we get ours at Costco).

Me too. I'm having such a great pregnancy this time around. I'm convinced it's what I'm taking that is helping. I wish I had known I had this mutation before my first pregnancy!

[ktgrok]

So was looking over my lab results, and remembered someone, maybe Arctic Mama, mentioned that high B12 and Folate might be a sign of MTHFR, and the body not being able to process the vitamins. 

 

yeah, both are high. Folate is normal over 5. Mine is 24! B12 was around 1,200. 

 

Meanwhile, my ferritin, aka iron level, is at the top of the normal range, but my hematocrit and hemoglobin are at the bottom of the normal range. I have had anemia issues my whole life. B12 is linked to anemia. The only supplement that ever really helped me was called "hemagenics". I just looked it up, and low and behold, it has the proper methylated forms of B vitamins in it, as well as iron!!!! So...I'm thinking my anemia was NEVER a lack of iron, it was a lack of proper B vitamins. This is REALLy good to know, because if that is the case it explains why just taking more iron never worked! I am looking at getting pregnant in a month or two, and right now with my hematocrit/hemoglobin just above normal I can bet they will drop down to anemic when pregnant. But maybe this time they won't, if I'm getting the right vitamins!

 

This would have been excellent to know 3 kids ago! My poor oldest was anemic himself as a baby, and I'm sure it was from me being anemic while pregnant. I did a bit better with the second thanks to the hemagenics, and ended up almost needing a transfusion with the third, but got back on hemagenics and avoided that. Neither of those two babies was anemic, I think because I was on the hemagenics for a while before they were born. 

 

Man, wish I'd known this before!

[Carol in Cal.]

Really glad you guys have been posting about this.  It turns out that I have a single copy of the variant of the 1298 (A/C) genotype, none of the 677 (C/C).

I'm not sure what that means yet, but I wouldn't have even noticed the result if it wasn't for threads like this.

I don't have high homocysteine, so the report implies that that might mean that this isn't doing anything bad, but I guess I will find out for sure when I see my NP.  In the meantime I am going to be reading all my vitamin labels.

[Laurie4b]

Katie, I hope this isn't a hijack. Let me know and I can delete and start another thread, but thought there are already knowledgeable people already discussing it here.

 

 Are people saying that if you don't know whether or not you have the mutation that it is dangerous to take methylcobalamin?  I got some at Whole Foods and specifically asked whether that form can be dangerous. She said no that it was just the most biologically available form. I was looking for a form of B12 that dissolves in the mouth and it was the only one there without alcohol sugars, which can disturb my gut. (Why there is a need for cherry flavored vitamins for adults, I have no clue.) My issue is that my B 12 is in the low normal range and there is a family history of Alzheimer's. Low B12, including low normal, can be implicated in that. Since I am a meat eater with lower B 12 I thought it wise not to take a supplement that goes the same route as the meat, thinking maybe my digestive tract no longer absorbs it efficiently, but perhaps I am misguided in that thinking. 

[shanezomom]

An elevated homocysteine blood result was what prompted my doc to order an MTHFR test. I have two copies of 677. I lowered my homocysteine significantly by taking Thorne MethylGuard Plus. Then my levels started creeping back up and my Lyme doc suggested I switch to Pure Encapsulations Folate 1,000 and MethyAssist. Both companies are well regarded but he uses the blood results to determine if the brand is actually working for me. I get blood work done every three months. I haven't gotten my recent results yet to see if PE brand is working better. 

 

 

Edited June 3, 2016 by shanezomom

[ktgrok]

Katie, I hope this isn't a hijack. Let me know and I can delete and start another thread, but thought there are already knowledgeable people already discussing it here.

 

 Are people saying that if you don't know whether or not you have the mutation that it is dangerous to take methylcobalamin?  I got some at Whole Foods and specifically asked whether that form can be dangerous. She said no that it was just the most biologically available form. I was looking for a form of B12 that dissolves in the mouth and it was the only one there without alcohol sugars, which can disturb my gut. (Why there is a need for cherry flavored vitamins for adults, I have no clue.) My issue is that my B 12 is in the low normal range and there is a family history of Alzheimer's. Low B12, including low normal, can be implicated in that. Since I am a meat eater with lower B 12 I thought it wise not to take a supplement that goes the same route as the meat, thinking maybe my digestive tract no longer absorbs it efficiently, but perhaps I am misguided in that thinking. 

 

Nothing I've read or seen says that taking the methylated forms would be dangerous for those without the mutation. I think people talking about side effects were taking very large doses. Large doses of any vitamin can cause issues and side effects. 

[wapiti]

With or without the mutations, I don't think I could say that it's dangerous to take methylcobalamin, but I imagine it's not going to be good for some people.  I can't recall all the details, but "methyl trapping" comes to mind.  I think it's likely that the person will recognize this within a few days.  Taking some niacin should mop up the methyl groups easily.

 

Also, it may well be a matter of dose.  Even a fraction of Thorne MethylGuard is too much for me.  I was tested years ago for one of the mutations and I didn't have it but I haven't been tested for the other one.  My ds is compound heterozygous (heterozygous for both mutations).  Both of us tend to do better with a smitch (like a tenth of a capsule) of Thorne B-complex.  One of my other kids does better with a smitch of hydroxycobalamin - I should probably test him too.  Too much of that too tends to be less helpful.

 

By the way, I've been wanting to get dd to do 23andme and there's a father's day sale, $149.  Maybe I should buy 3; anyone think dh will notice?  LOL I should buy them separately.

[Laurie4b]

The one I'm taking is Natural Factors 1000 mcg. Sounds like that is okay. No weird things happening. I've been taking it about a week. 

[gardenmom5]

FINALLY got my 23 and me results, and I'm heterozygous for the one main mutation. I'm guessing that means I should pick up some methylated b vitamins, huh? From what I'm reading my level of mutation means I have about 30% reduction in methylation. Which would explain why i only feel good on high high levels of B vitamins. Because I'm only able to actually use a fraction of them. But it seems that strategy isn't a healthy one long term, so I will find some methylated B vitamins. I'm going to the health food store anyway to look for some DHEA as I'm almost out. Anyone have a brand they like? I'm guessing a B complex is best, something with folate and B12?

 

what supplements you take depend upon your diet.  not everyone with a heterozygous mutation is even symptomatic.  (I'm homozygous, so all of my children have at least one copy.  even my dd who is homozygous takes less than I do.  dh is heterozygous.)

what you need also depends upon if there are any other mutations, what your d3 level is, what your iron stores, etc. etc. etc.

 

677 & 1298 have different symptoms, though more is known about 677.

 

Thorne is an excellent brand - and I've done their mthf (I would NOT buy *any other brand of mthf*).  it comes in 1mg and 5mg capsules.   the price is the same everywhere and I order from amazon.  (MOST *health food stores* do NOT carry it.  pharmica does.)  start low, and slowly work up.  (If your dr gives you a rx for 15mg and tells you to start at that level - go find a new dr.)   My naturopath found a compounding pharmacy that gets their mthf from the same  source as thorne (for half the price.)  so, I switched from deplin (rx form for higher doses.) to the compounded comparable mthf.  after  three days . . yep.  this is what it's supposed to feel like.  all I did was switch brands, dose was the same.

 

I use emerald laboratories b-healthy.  they are methylated, and the most bioavailable forms.   I've had horrid experiences with even average  drug store/mlm brands -it was the first one I used that I could feel a positive difference,  so I've been reluctant to change.

 

also - be very very mindful of molecular forms of vitamins.  it matters.

 

brands that you can trust:

thorne  (considered the gold standard)

douglas laboratories

pure encapsulations

 

 

I really like emerald laboratories, developed by a naturopath.

I also use NOW -it's affordable, and good quality.  I have been slowly switching from it to one of the above for more things.

[gardenmom5]

Nothing I've read or seen says that taking the methylated forms would be dangerous for those without the mutation. I think people talking about side effects were taking very large doses. Large doses of any vitamin can cause issues and side effects. 

 

My ND has addressed that.  it won't hurt anyone without the mutation to take mthf - or methyalted vitamins.  your body will use what it wants, and get rid of the rest.

 

and folic acid is evil. . .  (especially for those of us with the mutation.)   it's 100% artificial, and you won't find it naturally ocurring in ANY food source.   yet - it can cause a lot of problems for those with the mutation.  

 

fol-IN -ic acid is the natural form.

[Corraleno]

 Are people saying that if you don't know whether or not you have the mutation that it is dangerous to take methylcobalamin?  I got some at Whole Foods and specifically asked whether that form can be dangerous. She said no that it was just the most biologically available form. 

 

The issue is that some people who have specific other mutations (COMT, TAQ) in addition to the MTHFR mutation can have trouble processing the methyl form of B12. DS and I have those mutations, so we take hydroxocobalamin and adenosylcobalamin instead. Methylcobalamin made us both feel really antsy and agitated, which I understand is a symptom of "overmethylation." The hydroxo and adenosyl forms of B12 don't have that affect on us.

 

In short, if you take methylcobalamin and feel fine, then it's fine. If it makes you feel anxious, check for COMT/TAQ mutations and try one of the other forms.

Edited June 3, 2016 by Corraleno

[wapiti]

and folic acid is evil. . . (especially for those of us with the mutation.) it's 100% artificial, and you won't find it naturally ocurring in ANY food source. yet - it can cause a lot of problems for those with the mutation.

Rant: it troubles me greatly that folic acid is in so many products at the grocery store. It's impossible to avoid if a person eats processed foods (we eat enough of them); we can't even escape with baking as it's in most major flour brands (ETA I do buy a special brand without it but it isnt everywhere). With a rather significant percent of the population having one or more of the MTHFR mutations (polymorphisms?) one has to wonder about the negative effects... there are certainly dots to be connected, especially when combined with other polymorphisms.

Edited June 3, 2016 by wapiti