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MTHFR = homocysteine. Is methylation a bad word?

PeterPositive

Senior Member
Messages
1,426
Yeah I know, strange title.
Just stumbled upon this article:
http://circ.ahajournals.org/content/111/19/e289.full

I've seen many of these "mainstream" articles addressing MTHFR and homocysteine. There is no mention whatsoever to the risks of hypo-methylation. Not a word. Plus they recommend to treat MTHFR patients with folic acid... yeah right. :rolleyes:

Most funny of all... levels up to 60pg/l are now considered "moderately" high Hcy levels :lol:

Funny and bizarre at the same time.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
I truly believe I am ill now because I was taking high doses of folic acid due to high homocysteine levels... before being diagnosed with MTHFR. When my old (don't see him any more) doctor heard I have MTHFR? He recommended folic acid.

//head on desk moment//

I replied back that I will be taking a form of folate that my body can process and won't touch folic acid with a ten-foot pole. I don't think he got it.
 

whodathunkit

Senior Member
Messages
1,160
Yeah, I'm taking mondo folate and my homocysteine test three weeks ago came back 5.6. Methylation is definitely not shooting my homocysteine up.

It's sad that the medical community is still setting ranges for blood tests based on the norms of the populations sampled. That just means the ranges will be skewed to see ill health as the norm if the population becomes more unhealthy.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I truly believe I am ill now because I was taking high doses of folic acid due to high homocysteine levels... before being diagnosed with MTHFR. When my old (don't see him any more) doctor heard I have MTHFR? He recommended folic acid.

//head on desk moment//

I replied back that I will be taking a form of folate that my body can process and won't touch folic acid with a ten-foot pole. I don't think he got it.

When I got diagnosed with MTHFR mutation two copies.. my specialist who Id thought was smart as he'd recognised I had it from my homocysteine levels and then had me tested for MTHFR.. sadly thou he put me onto folic acid for it.

I then spent years on that and found it to be no help at all.. I finally got help for this mutation when I switched to active kind of folate and methyl B12 on the advice of a specialist who was up with the treatment of this and who I'd had to seek out due to the realisation the other was treating it wrongly.

There is a lot of doctors out there who do have the awareness that MTHFR is about inability to absorb folate but they dont have any awareness of how to treat this properly
 

PennyIA

Senior Member
Messages
728
Location
Iowa
There is a lot of doctors out there who do have the awareness that MTHFR is about inability to absorb folate but they dont have any awareness of how to treat this properly

Exactly! Five doctors in a row have just recommended well, add MORE Folic Acid... which is even worse.
 

PeterPositive

Senior Member
Messages
1,426
There is a lot of doctors out there who do have the awareness that MTHFR is about inability to absorb folate but they dont have any awareness of how to treat this properly
Which is weird... I mean, the chemistry of folates and their cycle in the body is well understood and it's not "loop quantum gravity" or some other esoteric theories... If one cannot convert folate to the active form it doesn't take Albert Einstein to understand what is needed.

When I was researching MTHFR I stumbled upon many forum posts where pregnant women (or women looking forward to conceive) said that they had been tested by their doc, found positive for single or double mutation and put on a high regimen of folic acid. And it wasn't "folic acid" to mean "active folate", literally high dose folic acid supplements. :rolleyes:
 

whodathunkit

Senior Member
Messages
1,160
@ahmo...I saw that page. Gob-smacking, isn't it? I'm coming to the conclusion that most doctors simply don't understand the distinction. My hematologist didn't seem to. The terms folate and folic acid seem to be used interchangeably.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Which is weird... I mean, the chemistry of folates and their cycle in the body is well understood and it's not "loop quantum gravity" or some other esoteric theories... If one cannot convert folate to the active form it doesn't take Albert Einstein to understand what is needed.

When I was researching MTHFR I stumbled upon many forum posts where pregnant women (or women looking forward to conceive) said that they had been tested by their doc, found positive for single or double mutation and put on a high regimen of folic acid. And it wasn't "folic acid" to mean "active folate", literally high dose folic acid supplements. :rolleyes:

The rationale is simple. You cannot convert folate successfully. So you only convert some of it. So you need more of it. This is however very simplistic and biochemically naive. Its aiming to give you more methyl folate by giving you more substrate, without any consideration of what that substrate will do.

Unconverted folic acid is thought to be what is called a competitive inhibitor of methyl folate. So the more you have in your blood stream, the less effective any methyl folate will be. In other words, its the biochemical equivalent of a poison.

Doctors are NOT biochemists. They are not even pharmacists. Some do indeed have this kind of training, but most do not.

It is now thought that folic acid becomes toxic even at very low levels, even in healthy people without mutations. The liver has a maximum rate at which folic acid can be converted to folate, and is easily overwhelmed. However because damage from folic acid, which is now suspected to include dementia and immune dysfunction leading to cancer, can take decades to show up, doctors are not immediately faced with the consequences.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
I made the distinction of telling my doctor that telling me, a patient with MTHFR to take folic acid is the equivalent of dosing me with slow acting poison. His response was that I was over-reacting. We agreed to disagree and I agreed to take as much methylfolate as I could tolerate ... and suddenly he was fine with that. When I look at the lts of all the other things I'm looking at and trying to sort out combinations of supplements and having him not get why folic acid is bad for me and methylfolate is the right choice??? Well, he soon became the doctor I USED to see.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@PennyIA RE taking as much folate as you can tolerate, I've just had, or rather am in the midst of having, a most edifying experience. I've described it in the High Methylfoate thread. I've been gradually pushing up my folate dosage over many months.And getting healthier. Recently I was unthinkingly increasing my vegetable intake. This has resulted in me bombarding my system, especially adrenals, w/ too much folate.:bang-head: I'm now detoxxing it from my system.

MTHFR can't use the vegetable folinic form efficiently. So if you're eating a lot of veggies you might be blocking the Mfolate.
 

PeterPositive

Senior Member
Messages
1,426
@alex3619: funny... I invoked Albert Einstein, and there you are :) Good points, thanks.

@ahmo: interesting the bit about vegetable folate. I knew it already but I have never been really concerned about veggies. I'll soon be doing the methylation panel, hope to be able to see if there are problems in that department (folinic competing with m-folate)

I do have the double C677T mutation and high homocysteine but so far switching to active folates hasn't improved the situation. Methyl-B12 seems to make the difference, so I am slowly raising the dosage. I have several mutations in the B12 department as well (MTR+/-, MTRR+/-, TCN2+/+)
 

whodathunkit

Senior Member
Messages
1,160
@alex3619: really, really great info there.

You seem to know a bit about what damage folic acid can do...have you heard about any way to undo the damage? Like, does the unconverted substrate get stored in the liver & tissues? Can we detox it with standard liver detox and detox diets? Or is there any particular nutrient known that will "chelate" it? Etc.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I think the liver will automatically get rid of folic acid over time. The issue is its so easily overwhelmed. So the aim is to not replace it by not taking supps with it or eating fortified foods.

Folinic acid, commonly high in vegetables, may be different. I do not currently have an opinion on that. However I suspect that only a subset of patients with issues from folic acid will also have issues from folinic acid, and I think this story is what we hear from researchers, but its not my area of expertise. If you feel better on methyl folate by consuming less folate rich vegetables, then I would take that as a hint.

The dominant thought on high homocysteine though is that its more likely to be a CBS issue, though if you have methylation problems and CBS (transulfuration) problems then it might be a double whammy. Some of the research on CBS problems appears to be contradictory. The knowledge of this area of chemistry is still being developed.

As for reversing folic acid damage, it depends on the kind of damage. We see patient reports of reversing symptoms all the time, particularly neurological symptoms, but I think genetic damage is permanent. We are, in effect, aging faster because of folic acid.

I would be very interested in reading information from patients who have no problem with folic acid, and no genetic issues involving methylation or transulfuration. A sense of what percentage of patients this is might be helpful.
 
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