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Methyl B12 or Hydroxy for a Deficiency?

gracee41

Senior Member
Messages
115
I have MTHFR and seem to have a functional deficiency of B12. My level was greater than 2000 over a year ago without supplementation. I started treating it several months ago with methyl B12 and Dibencozide and symptoms have improved greatly. However, my levels remain unchanged. According to Dr. Yasko's B12 chart, I should be taking Hydoxy B12 with my particular SNP's. My serum iron level has also risen. I am hypothyroid and was told on my thyroid forum that using the wrong B12 (referring to methyl) could cause it to pool in my blood since my body couldn't use it. It could also cause serum iron to rise. Was told this info was gathered from Dr. Ben Lynch, Dr. Amy Yasko, and Dr. Amy Neuzil. However, I haven't been able to locate this particular information. Has anyone heard of this? When I try Hydroxy B12, I don't feel as well. My folate levels are normal.
 

alicec

Senior Member
Messages
1,572
Location
Australia
I don't know about the claims from your thyroid forum, though they sound very dubious to me, but I do know that Amy Yasko is not a reliable source of information.

She has made too many serious errors to have any overall confidence in her claims, many of which are simply theories based on dubious assumptions.

Her claims about which SNPs tolerate which forms of B12 have no basis in any studies and many people who have put them to the test have found them wanting.

The main basis of it is that people with various COMT +/+ SNPs don't tolerate methyl groups and so should avoid methylB12. This is simply an assumption on her part.

Plenty of people on PR who are COMT +/+ (including myself) have no problem with methyl groups in general nor meB12 in particular.

Some people of course are very sensitive to methyl groups, but this has nothing to do with COMT.

It doesn't sound as if you are sensitive to methyl groups since you report that MeB12 (and adoB12) have been helpful to you, while hydroxy is not. I'd keep taking them if I were you.

To use them efficiently however you may need to supply other nutrients.

Serum cobalamin tests are not particularly helpful for determining anything other than frank deficiency. The best test of functional deficiency is a serum or urine MMA test. The urine test is often part of a wider test of various metabolic byproducts called an organic acid test (OAT). OATs can be very helpful in revealing a variety of metabolic pathways which aren't functioning well as well as functional deficiencies of various vitamins.

The enzyme which processes MMA is B12 dependant (specifically the ado form) so if B12 is not getting into cells, the enzyme will not function well and MMA will accumulate.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
I have MTHFR and seem to have a functional deficiency of B12.

I've seen the expression "I have MTHFR" a lot on here and I'm wondering exactly what it means. Does it mean you have any SNPs on that gene? Or a specific SNP, or specific combination of SNPs? Something else? I think mutations on that gene are extremely common, so presumably many of them not significant.

(not picking on you, gracee41! it's just that I keep meaning to ask and your post reminded me to do it)
 

gracee41

Senior Member
Messages
115
I don't know about the claims from your thyroid forum, though they sound very dubious to me, but I do know that Amy Yasko is not a reliable source of information.

She has made too many serious errors to have any overall confidence in her claims, many of which are simply theories based on dubious assumptions.

Her claims about which SNPs tolerate which forms of B12 have no basis in any studies and many people who have put them to the test have found them wanting.

The main basis of it is that people with various COMT +/+ SNPs don't tolerate methyl groups and so should avoid methylB12. This is simply an assumption on her part.

Plenty of people on PR who are COMT +/+ (including myself) have no problem with methyl groups in general nor meB12 in particular.

Some people of course are very sensitive to methyl groups, but this has nothing to do with COMT.

It doesn't sound as if you are sensitive to methyl groups since you report that MeB12 (and adoB12) have been helpful to you, while hydroxy is not. I'd keep taking them if I were you.

To use them efficiently however you may need to supply other nutrients.

Serum cobalamin tests are not particularly helpful for determining anything other than frank deficiency. The best test of functional deficiency is a serum or urine MMA test. The urine test is often part of a wider test of various metabolic byproducts called an organic acid test (OAT). OATs can be very helpful in revealing a variety of metabolic pathways which aren't functioning well as well as functional deficiencies of various vitamins.

The enzyme which processes MMA is B12 dependant (specifically the ado form) so if B12 is not getting into cells, the enzyme will not function well and MMA will accumulate.
I don't know about the claims from your thyroid forum, though they sound very dubious to me, but I do know that Amy Yasko is not a reliable source of information.

She has made too many serious errors to have any overall confidence in her claims, many of which are simply theories based on dubious assumptions.

Her claims about which SNPs tolerate which forms of B12 have no basis in any studies and many people who have put them to the test have found them wanting.

The main basis of it is that people with various COMT +/+ SNPs don't tolerate methyl groups and so should avoid methylB12. This is simply an assumption on her part.

Plenty of people on PR who are COMT +/+ (including myself) have no problem with methyl groups in general nor meB12 in particular.

Some people of course are very sensitive to methyl groups, but this has nothing to do with COMT.

It doesn't sound as if you are sensitive to methyl groups since you report that MeB12 (and adoB12) have been helpful to you, while hydroxy is not. I'd keep taking them if I were you.

To use them efficiently however you may need to supply other nutrients.

Serum cobalamin tests are not particularly helpful for determining anything other than frank deficiency. The best test of functional deficiency is a serum or urine MMA test. The urine test is often part of a wider test of various metabolic byproducts called an organic acid test (OAT). OATs can be very helpful in revealing a variety of metabolic pathways which aren't functioning well as well as functional deficiencies of various vitamins.

The enzyme which processes MMA is B12 dependant (specifically the ado form) so if B12 is not getting into cells, the enzyme will not function well and MMA will accumulate.

Thank you for your reply Alicec. It was very helpful. The claims by the thyroid forum admins come from researching the sites of the 3 doctors I mentioned in my initial post. Info is not meant to mislead but to inform. It seems Dr. Yasko's statements come from her experience in treating her patients and not so much from research. Although, I haven't explored that in depth.

I'm not sure which of those sites the claim of using the wrong B12 (methyl or hydroxy) causes serum B12 pooling is from. Have not been able to locate it. I have had a couple of MMA serum tests that were normal. Why would my B12 level be so high without supplementation when my MMA tests were normal? Will methyl and adeno B12 eventually break down my high levels? Also, do B12 levels, high or low, have anything to do with a person's serum iron being high? Is there a connection?
 
Messages
15,786
It seems Dr. Yasko's statements come from her experience in treating her patients and not so much from research.
Yasko isn't an MD and isn't licensed to treat patients. Many of her claims about SNPs are directly contradicted by existing research, and not just unsupported by it.
 

gracee41

Senior Member
Messages
115
Yasko isn't an MD and isn't licensed to treat patients. Many of her claims about SNPs are directly contradicted by existing research, and not just unsupported by it.

Thanks Valentijn. Her bio says she is a board certified Alternative Medical Practitioner, a board certified Holistic Health Practitioner and is a Fellow of the American Association of Integrative Medicine so sounds like she could treat patients in some states. Although, that is not important to me really. I just had questions I felt this group could better address than anyone else. Are you able to answer any of the questions I had in my last post? Thank you.
 
Last edited:

alicec

Senior Member
Messages
1,572
Location
Australia
I was tired yesterday afternoon so just replied with the basics.

I tend to steer clear of the opinion of gurus, particularly when they are selling supplements, and try to find independent information.

If the thyroid forum is trying to inform then it should be able to provide the evidence behind the claim. If all it can tell you is that it is the opinion of a practitioner known to make dubious claims and is based solely on clinical observations (this of course is licence to claim anything), then there is nothing to recommend it.

the claim of using the wrong B12 (methyl or hydroxy) causes serum B12 pooling

This claim just flies in the face of what is known about B12 uptake and processing. MethylB12 is the predominant form of circulating B12 and I am not aware of any studies showing difficulty in binding of this form to serum carrier proteins. I've done a quick google search but haven't been able to find anything of relevance.

There are rare genetic disorders where the binding proteins are defective, but this is for binding in general, not a particular form.

Why would my B12 level be so high without supplementation when my MMA tests were normal?

First check for hidden sources of cyanocobalamin in foods or multivitamins.

Other than that, high serum B12 is not uncommon. Here is a recent review. Various studies quoted in the review put the incidence at between 12 and 18% in various populations where serum B12 was measured and studied.

The known causes are poor uptake, revealed by elevated MMA and homocysteine, problems with transcobalamins and various pathologies (cancer, kidney and liver disease). Most cases though seem to asymptomatic.

If you are not consuming hidden sources of cyanocobalamin it could be worth checking further since it can be associated with pathologies.

Will methyl and adeno B12 eventually break down my high levels?

Impossible to predict. Depends on the cause.

do B12 levels, high or low, have anything to do with a person's serum iron being high? Is there a connection?

I suppose it might be possible that lowB12 resulting in haemolytic anaemia could be associated with high serum iron. Otherwise I cant think of any link between high B12 and high iron, nor could I find anything by googling.

You need to do further iron studies to determine what high iron really means. Only about 10% of elevated ferritin is associated with iron overload. It can be associated with inflammatory conditions, something which would be relevant to many people on this board.

Here is a review.
 
Last edited:

gracee41

Senior Member
Messages
115
I was tired yesterday afternoon so just replied with the basics.

I tend to steer clear of the opinion of gurus, particularly when they are selling supplements, and try to find independent information.

If the thyroid forum is trying to inform then it should be able to provide the evidence behind the claim. If all it can tell you is that it is the opinion of a practitioner known to make dubious claims and is based solely on clinical observations (this of course is licence to claim anything), then there is nothing to recommend it.



This claim just flies in the face of what is known about B12 uptake and processing. MethylB12 is the predominant form of circulating B12 and I am not aware of any studies showing difficulty in binding of this form to serum carrier proteins. I've done a quick google search but haven't been able to find anything of relevance.

There are rare genetic disorders where the binding proteins are defective, but this is for binding in general, not a particular form.



First check for hidden sources of cyanocobalamin in foods or multivitamins.

Other than that, high serum B12 is not uncommon. Here is a recent review. Various studies quoted in the review put the incidence at between 12 and 18% in various populations where serum B12 was measured and studied.

The known causes are poor uptake, revealed by elevated MMA and homocysteine, problems with transcobalamins and various pathologies (cancer, kidney and liver disease). Most cases though seem to asymptomatic.

If you are not consuming hidden sources of cyanocobalamin it could be worth checking further since it can be associated with pathologies.



Impossible to predict. Depends on the cause.



I suppose it might be possible that lowB12 resulting in haemolytic anaemia could be associated with high serum iron. Otherwise I cant think of any link between high B12 and high iron, nor could I find anything by googling.

You need to do further iron studies to determine what high iron really means. Only about 10% of elevated ferritin is associated with iron overload. It can be associated with inflammatory conditions, something which would be relevant to many people on this board.

Here is a review.
Thanks very much for your lengthy reply. This was extremely helpful! I am going to be doing further testing.
 

grapes

Senior Member
Messages
362
I was shocked to find someone else like me with high B12 and high iron. Last October, I found my B12 at 1580 (top of range was in the 800's) from taking methyl B12...and "functional B12 deficiency" fit, because I had numbness in my fingers, plus would get numbness in my legs if I crossed them.

I switched to a combo of adensyl and hydroxy from Seeking Health, and after a few weeks, the numbness went away. But when I redid labs last week around Feb, 21st, found my B12 now at "over 2000". So as of last week, hydroxy only.

And iron.....I was 106 a year ago, 116 last October, and last week, it's now 161. Much too high for a woman.

I am hetero MTHFR 1298...but what may be more telling in all this:

COMT rs6269 GG ++
MTRR ++ and +-
MOA-A rs6323 ++
MOA-B rs1799836 ++ plus two +-.

Sadly, the supps I've been on for several months haven't done a thing---includes 400 mcg l-folate, the B12, and Seeking Health's B-vitamins, magnesium, Coq10, Vitamin D, important minerals, many mito supportive supps, probiotics, etc.

One new thing I'm trying with the high B12 is lithium, which was also recommended by Nutrahacker. I've been on 5 mg for two weeks, but decided to move to 10 mg and see if I make any progress the next few weeks in getting that B12 to my cells. I'm also going to try SAM-E again for the MOA's---I think I was taking too much late last year when I tried it, so trying a lower amount. I do take a blocker for the MOA-B--Aveno Sativa.

A side note: I'm getting rid of mold right now with Welchol (Cholestyromine messed up my stomach too much)....the mold was leftover from a few years ago when I was exposed. Discovered it was still in me last October with all the testing I did.

So we'll see. Frustrating to be doing so many things correctly and yet iron and B12 have kept going up.