• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

No MTHFR should I switch back to folic acid from metafolin?

Al Klein

Senior Member
Messages
101
Location
United Kingdom (Buckinghamshire)
I started taking metafolin after reading about MTHFR but now it turns out I dont have it, and possibly need to cut down on methyl groups (I currently take L-methylfolate 800mc and Jarrows Methylcobalamin 5000 per day, plus I get hydroxycobalamin shot every 8 weeks - I have pernicous anemia), so would I be better to go back to a traditonal Folic acid?

These are my relevant SNP's from gentic genie:


COMT V158M rs4680 AA +/+
COMT H62H rs4633 TT +/+
VDR Bsm rs1544410 CC -/-
VDR Taq rs731236 AA +/+
MAO-A R297R rs6323 TT +/+
MTRR A66G rs1801394 GG +/+
MTRR A664A rs1802059 AG +/-
BHMT-02 rs567754 CT +/-
BHMT-04 rs617219 AC +/-
AHCY-01 rs819147 CT +/-
AHCY-02 rs819134 AG +/-
AHCY-19 rs819171 CT +/-
CBS C699T rs234706 AA +/+
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Al,
I'm a newbie here, so please consider the advice of the Senior Members with a lot more weight than mine. And please read http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/. It seems there's little to indicate that extra regular folic acid is a good thing.

Because you, like me, have MTRR (+/+), it means you don't make methylcobalamin (MB12) as efficiently as someone without it. I would say if you're doing well, that it's probably good that you take MB12, but there are a lot of other considerations.

First, you're COMT (+/+) so you risk methyl group overload from extra methyl groups. Know the symptoms of over-methylation and watch for them.
Second, you're CBS (+/+) which sucks up all the homocysteine and draws down your methionine. I'm assuming you're MTR (-/-), so that may limit the reaction, but the MTR uses the methyl folate (MTHF) to replace the methionine that turns into homocysteine, all of which could be accelerated by the CBS. For me, (I have +/- for both MTR and CBS, and was taking my MTHF with Vitamin C, which apparently destroys it), I got into what's called First level methylation blockage. For safety, know the symptoms and watch for them if you decide to keep taking it.
 

Al Klein

Senior Member
Messages
101
Location
United Kingdom (Buckinghamshire)
Thanks - I know I need to read more, but in the past week I have read so much my brain is fit to burst.

It was only last night that I read about not taking MTHF with Vit C so tonight will be me first time keeping them separate - I must read about methyl overload!
Thanks :)
 

caledonia

Senior Member
You probably don't need to supplement with folate at all, especially if you're eating your leafy greens. I would avoid "folic acid" no matter what mutations you may or may not have.

For your COMT and VDR mutations, Yasko suggests hydroxy and adenosylcobalamin.

You're already taking high doses of methyl supps and apparently tolerating them ok, so it sounds like your CBS is not expressed, so you don't need to worry about that.

You might want to take some TMG for the BHMT mutations to keept the secondary pathway going. TMG is another methyl donor, so keep the dose low and/or titrate up slowly.

In general, you might want to keep some niacin in the form of nicotinic acid on hand while you're experimenting with methyl supps. If you get into an overload situation, you can quickly quench it by taking 50-100mg every 4 hours. You might only need one dose, you might need several, depending on how far you went overboard.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
If you look again I think youll find the "lamb" is actually a plant - lamb's quarters!
http://en.wikipedia.org/wiki/Trimethylglycine

Quinoa on the shopping list for tomorrow :)
Al,
The lamb was in my frying pan; it's been eaten since then. I was writing from memory, not from something to look at. Last fall I was on an elimination diet and it seemed all I ate was quinoa and nuts for breakfast, salad (with beets) for lunch (no tomatoes, peppers or spinach - I reacted to them!), cooked beet greens, other greens or cooked vegetables and lamb patties for dinner. Oh, how boring!

But I see you are correct, that lambsquarters are on the list at http://nutritiondata.self.com/foods-000145000000000000000-1w.html.

Hmmm, when I had my blood work done after that period and then three months later, when my diet was more 'normal', my methionine had dropped, and I noticed that a lot of foods on the elimination diet had been high in TMG (a.k.a. betaine, sold as betaine anhydrous, not the digestive aid betain HCl) which regenerates Methionine. I thought it was quinoa, beets, and lamb. Maybe it was one of the substitute meats I used - bison, elk, or eventually turkey.

Anyway, you are right. We have a lot to learn here, and being thorough like you are is going to serve you well.