• 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.

Finding reason for high serum B12 & Folate

Messages
87
I have a history of high serum B12 & folate levels, like past the limit of the Labcorp ranges (my last B12 test came back as >1999). Yet at the same time my MMA came back as within range but elevated.

Obviously low B12 & folate tests are a more common problem, but way high makes me think there is something off and potentially worth further investigation.

Issue is I'm not quite sure quite how to break down the problem. I could get something like Doctors Data's folate metabolism test done to determine whether my folate values were being inflated by large amounts of unmetabolized folic acid.

When it comes to the B12... Generally speaking MMA is used to confirm an issue, but considering the results are somewhat contraindicating I'm not sure quite where to go with the next step.

My current preliminary hypothesis is, that in a broader sense, something is minimizing my utilization of B12 & Folate and thereby causing elevated levels. The question is is there an issue with the B12 causing a folate issue, vice versus or something that is preventing the utilization of both.

Any suggestions on where to start breaking down the problem?
 
Last edited:

ryan31337

Senior Member
Messages
664
Location
South East, England
Had similar results despite no supplementation, serum B12 somewhat elevated, Active B12 off-the-scale elevated, MMA within range. Folate was usually normal though. Around this time I started developing glove and stocking pattern peripheral neuropathy, started with loss of pin-prick sensation and numbness/coldness in foot, eventually progressing to burning sensations over the course of a year to 18 months.

I was told it could be a functional deficiency and to try a methylated B-complex multi-vitamin. Within a few months my neuropathy symptoms improved substantially and I felt better cognitively too - obviously can't say for sure this helped but it seems likely from the timing.
 
Messages
87
Normally speaking I don't take either, because I see negligible difference.


I can take a B12 shot or sublingual and question whether I felt anything at all. With methylfolate it's a similar situation even at large doses.

Point being... It looks like I've taken WAY More then I actually do. Which makes me think for me there is actually more of an issue using it than being deficient in consumption.
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
Had similar results despite no supplementation, serum B12 somewhat elevated, Active B12 off-the-scale elevated, MMA within range. Folate was usually normal though. Around this time I started developing glove and stocking pattern peripheral neuropathy, started with loss of pin-prick sensation and numbness/coldness in foot, eventually progressing to burning sensations over the course of a year to 18 months.

I was told it could be a functional deficiency and to try a methylated B-complex multi-vitamin. Within a few months my neuropathy symptoms improved substantially and I felt better cognitively too - obviously can't say for sure this helped but it seems likely from the timing.

You can get a MTFHR gene test to see if you are genetically messed up.
 
Messages
87
You can get a MTFHR gene test to see if you are genetically messed up.

There is one side of me that really wants to know and then the other side that is seriously skeptical about having that information out there somewhere... to this point that has left me deadlocked on the issue.
 
Messages
87
So starting to put some of the pieces together...

Results in 2013

Annotation 2019-09-29 114157.jpg

( I thought it was actually higher than it was)
Annotation 2019-09-29 120315.jpg


Annotation 2019-09-29 120557.jpg



SpectraCell done in 2014

Annotation 2019-09-29 114159.jpg


Results from Sept 2019

Annotation 2019-09-29 114158.jpg


For background... my main interest, of late, in getting this resolved stems from a persistently low iron level. I took large quantities of iron bis-glycinate with the absorption promoters over a period of time only to see my serum levels barely move, I then switched over to a heme iron product, ProFerrin, and was taking 3x tabs a day and this was the result (January was after the bis-glycinate & August was after the ProFerrin).

Annotation 2019-09-29 114160.jpg

Annotation 2019-09-29 120735.jpg

What I am noticing is there is some disconnect between the serum levels & the cells with regard to the B12 otherwise it would be hard to have sky-high levels in the blood and borderline deficiency in the cell. I had a B12 binding capacity test done that I am waiting on the results to come back anytime now.

My thought at this point is it is possibly some form of a low-level transcobalamin issue, not enough to fully engage all of the normal red flags (like high homocysteine & MMA), but enough to just prevent certain systems from working correctly.

I read a post by @Freddd where he discussed the use of injected or sublingual B12 to diffuse the B12 into the cell bypassing the transcobalamin issue, but other than that I have not had much luck finding suggested IM injection dosing for such an issue.

Any thoughts?
 

Attachments

  • Annotation 2019-09-29 114158.jpg
    Annotation 2019-09-29 114158.jpg
    19.6 KB · Views: 9
Last edited:
Messages
87
Having completed some additional testing it looks like it is a transcobalamin issue. Not sure if it's a partial TCN2 issue because as previously stated I'm kind of adverse to genetic testing at this point.

Annotation 2019-10-16 163850.jpg
You'll notice my B12 binding capacity is subpar relative to the high amount of serum B12 so that would explain the disconnect between the sky-high serum B12 and the borderline cellular B12 deficiency on the SpectraCell.


Had my iron tested last week after 3 weeks of 1000mcg methylcobalamin injected daily & 2x ProFerrin (heme iron) tabs daily.
Annotation 2019-10-16 163851.jpg


Without scanning my older testing in for visual comparison I can just tell you that I have made more improvement in my iron status in the last 3 weeks than anything I have done in the last 8 years.

Hopefully, this will be useful information for anyone else trying to get a grasp on a similar situation. There is VERY little information out there for those of us that have HIGH serum B12 levels.
 
Messages
22
I too suffer from high b12 Serum levels as well as issues with the TCN2 gene. A few people have recommended Lithium orotate as they claim it helps the b12 go into the cells. It may be worth getting tested and seeing your levels and see if it makes a difference. I have noticed since thaking the LO that my eyesight changes when i take too much b12 compared to previously i had to take b12 and high dosages of methylfolate to achieve that same feeling.