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Help! I can't take folate without terrible over-methylation symptoms and need it for pre-pregnancy

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
just think it is a great shame for people to suggest without any reason that josephine should do anything more than, as Valentijn says, eat some veg. Its a darn sight easier and tastier - as well as being just as good.

I am so pleased to hear that Josephine is pregnant and now able to tolerate the supplements but one thing that struck me was she has some similar SNPs to me and I ended up having a stillborn baby with a neural tube defect way back in 1975.

If I had known about the risks I had then things could have been very different but it wasn't possible then. When I look at my Variance report on Livewello, risks for neural tube defects and encaphaly come up all over the place.

Surely with the knowledge we now have thanks to genetic testing it is irresponsible to ignore this. All one has to do to protect the pregnancy is to take some active folates and methylB12 before getting pregnant and definitely in the first 10 weeks when the baby is forming. For some us just eating vegetables isn't sufficient because we have blockages in the enzymes that convert the folate to its active form and also blockages in the enzyme that recycles B12.

Pam
 
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PeterPositive

Senior Member
Messages
1,426
@Snow Leopard Folic acid is not folate.
Sorry to be picky but...

Folate indicates a collection of "folates" that is not chemically well-characterized, including other members of the family of pteroylglutamates, or mixtures of them, having various levels of reduction of the pteridine ring, one-carbon substitutions and different numbers of glutamate residues.
( https://en.wikipedia.org/wiki/Folic_acid )

I think what you mean is that synthetic folic acid is not as good as dietary folate or the reduced form of folate, MTHF.

Each different form of folate (eg: synthetic folic acid, DHF, folinic acid, THF etc...) requires a number of different enzymatic steps to be turned into the reduced active form (MTHF), and the synthetic form Is the one requiring more of these steps.

People with slow folate metabolism (MTHFR 677 defect) may need to use more active form of folate (folinic, 5-MTHF) but I don't think this has to be taken as an absolute proposition.

There's plenty of people with MTHFR mutations that have no folate issues just by keeping a decent diet. I am MTHFR homozygous and have suffered very high homocysteine. Before knowing about the defect I was given the regular "horrible" folic acid and yet my homocysteine went down pretty quickly.

Some of the claims about MTHFR and methyl-folate seem quite hyperbolic to me, although it certainly make sense to check for possible known mutations and correct the issue.

cheers
 

Gondwanaland

Senior Member
Messages
5,095
In my experience the big evil has been to ban eggs from a healthy diet. The choline in egg yolks activates the folate in vegs. The same applies to healthy fats (animal fat + coconut oil + olive oil). For some people it can be pretty useless to eat vegs without the healthy fats. Refined oils don't help, and studies have been showing how harmful it is.
 

PeterPositive

Senior Member
Messages
1,426
In my experience the big evil has been to ban eggs from a healthy diet. The choline in egg yolks activates the folate in vegs. The same applies to healthy fats (animal fat + coconut oil + olive oil). For some people it can be pretty useless to eat vegs without the healthy fats. Refined oils don't help, and studies have been showing how harmful it is.
Cool. I wish I could reintroduce eggs in my diet. At the moment I have more chances at reintroducing uranium than eggs. I haven't touched one in 16 years.:meh:
 

picante

Senior Member
Messages
829
Location
Helena, MT USA
Folate indicates a collection of "folates" that is not chemically well-characterized, including other members of the family of pteroylglutamates, or mixtures of them, having various levels of reduction of the pteridine ring, one-carbon substitutions and different numbers of glutamate residues.
( https://en.wikipedia.org/wiki/Folic_acid )

So that brings up my burning question: Can anyone tell me what the hell the labs are measuring when it says:
Folate (Folic Acid), Serum
On a recent lab test, mine was 16.4 ng/mL [range 3-6] . I had taken about 450 mcg of mefolate the day before.
 

PeterPositive

Senior Member
Messages
1,426
So that brings up my burning question: Can anyone tell me what the hell the labs are measuring when it says:
Folate (Folic Acid), Serum
On a recent lab test, mine was 16.4 ng/mL [range 3-6] . I had taken about 450 mcg of mefolate the day before.
The 1M dollar/euro/pound question...
Often times they are measuring a number of folate-related substances, but it's still a mystery to me and I wasn't able to get a straight answer from my local lab.

The only test that made things clearer for me was the (rather expensive) methylation panel which does a thorough breakdown of all major folate types (synthetic, folinic, thf, mthf, etc...)
 

Gondwanaland

Senior Member
Messages
5,095
On a recent lab test, mine was 16.4 ng/mL [range 3-6] . I had taken about 450 mcg of mefolate the day before.
The range at my local lab is 3 - 17,5 ng/mL. My husband tested around 8 and our dr. considered it low. Mine has never been below 13. How about your B12 levels?

In my personal interpretation, whatever the form is in blood circulation, if you think the level is too high, you need
  • B2 / choline to activate inactive forms
  • the whole B complex to use activated forms (esp B1, B6 & B12)
  • B3 to deactivate excess activated forms (?)
 

picante

Senior Member
Messages
829
Location
Helena, MT USA
That summary makes sense to me, Izzy.

Does anyone here know what the heck they're measuring on serum "folate" labs?

How about your B12 levels?
945 pg/mL [211-911]

I had been taking tiny amounts of MeB12 and AdB12.

I had started eating eggs again (choline), and was taking a lot of Benfotiamine (300-450 mg/day) and P-5-P (25-50 mg/day). I was also taking niacinamide. And B2, B5, and biotin.

However, I was heading into methyl trap when this blood draw was done. So, not enough B12 relative to mefolate.
 

Gondwanaland

Senior Member
Messages
5,095
So, not enough B12 relative to mefolate.
Before supplementing with MeB12 my serum levels of B12 were around 200. After supplementing, and discontinuing, and then supplementing 1x weekly (when I remember to), my levels have been between 870 - 570, and "folic acid" (whatever has been measured) 12.6 - 16.5. =>> And I feel my regular crappy state, nothing special for bad or for good.

What I think you have is excess methyl groups (and/or phosphate) around from too much pre-activated vitamins.
 

picante

Senior Member
Messages
829
Location
Helena, MT USA
Interesting about your B12 levels. Mine have been high since before I got sick 23 years ago.

What I think you have is excess methyl groups (and/or phosphate) around from too much pre-activated vitamins.
Meaning R-5-P, P-5-P, niacinamide? Why? Are methyl groups involved in converting riboflavin, pyrodoxine, and niacin to those intermediate forms?

Or do you mean methylfolate and methylB12? If that's the case, I could switch to all AdB12 and see if there's an improvement.
 

Crux

Senior Member
Messages
1,441
Location
USA
Hi @picante and @Gondwanaland ;

The serum blood folic acid and B12 tests have just seemed to be non-specific to me, but one possibility for elevated levels could be SIBO. Gut bacteria can produce many B vitamins, especially folate.

Elevated folic acid is what lead me to finally realize SIBO was making me very ill: migraines, inflammation, insomnia, anxiety, etc.
 

Gondwanaland

Senior Member
Messages
5,095
If you take R-5-P + MeFolate + MeB12, there's little for your body to do with them other than just put them into the cells. What if the cells are full at one point, then I suppose the body de-methylate them to store in liver, but then you have more methyl groups than you'd ever produce on your own.

I think the phosphate poses the same issue. Your body hold on phosphate to activate vitamins. But then you are flooding your body with phosphated vitamins...

I might be saying something dumb, but since you say there is some discomfort, that is all I can imagine

How is your homocysteine? And your phosphate?
 

picante

Senior Member
Messages
829
Location
Helena, MT USA
How is your homocysteine? And your phosphate?
The only homocysteine test I had looked perfect (after 24 hours of avoiding dietary methionine). July 2014:
Homocysteine, plasma 7.2 umol/L [0-15]
MMA, serum 174 nmol/L [0-378]
Edited: This was before I started the methylation protocol.

I don't quite understand these lab ranges that start at zero. Unless Labcorp is doing tests on dead people?

And in the chemistry section of a standard panel in July 2015:
Phosphorus, serum 3.90 mg/dL [2.5-4.5]
It was 3.4 in 2014 and 3.7 in 2013, but only 2.8 in 2012.
 

Gondwanaland

Senior Member
Messages
5,095
BTW @picante if you are on a high fat diet this is giving you even more methyl donors and causing anxiety
When I supplemented with methylfolate I was accidentaly lower carb than I imagined, and it caused horrible anxiety, a real burden on adrenals which left me eating extra salted food for months on end. lchf dieting raises cortisol
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
Cool. I wish I could reintroduce eggs in my diet. At the moment I have more chances at reintroducing uranium than eggs. I haven't touched one in 16 years.:meh:

Same here, although it's probably more like 8-9 years in my case. Every time I try to add them (or any saturated fat, which I know is important) my circulation gets a lot worse. It's a catch-22 because without the fats, my triglycerides have gone way too high as has my 'bad' cholesterol.

I'm hoping a gradual transition (which I've been trying for years!) is going to solve the problem. I do wish I had never cut back on them in the first place, but only did so because I felt so much worse after a higher fat meal, starting about 4 years into ME/CFS.
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
The 1M dollar/euro/pound question...
Often times they are measuring a number of folate-related substances, but it's still a mystery to me and I wasn't able to get a straight answer from my local lab.

The only test that made things clearer for me was the (rather expensive) methylation panel which does a thorough breakdown of all major folate types (synthetic, folinic, thf, mthf, etc...)

In the USA anyway, I highly doubt they're measuring anything but 'folic acid'. I asked for a test for b6 and p5p, and they only had the test for B6.
 

PeterPositive

Senior Member
Messages
1,426
I don't quite understand these lab ranges that start at zero. Unless Labcorp is doing tests on dead people?
:D:D
You're talking to one... After a major crash in 2011 my folate level was 0.7 :rolleyes:
Last June I was tested for vitamin D deficiency ---> 0 ng/l (!!)

You'd think nobody could get as low as zero... but yeah, it can be done! :rolleyes:
(Fortunately now it's all taken care of...)

cheers