High Vitamin B12 Level and Integrative Medicine

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

User avatar
DJ
Gentoo Penguin
Gentoo Penguin
Posts: 478
Joined: Tue Oct 01, 2013 5:15 am
Location: Upstate NY

High Vitamin B12 Level and Integrative Medicine

Post by DJ »

Hi All,
I promised to update on my integrative medicine experience but I first need to bring a concern to the group. I've had a elevated B12 level for quite some time now. Early this year my level was 2500 and recently about 1500. I was alarmed at my results as B12 is water soluble and excess is easily removed from the body. Elevated B12 can be a sign of very serious illness that requires immediate attention. My Integrative Medicine Nurse Practitioner feels that my elevated blood level is caused by M/C and that I am actually B12 deficient, so she prescribed a daily maga-dose B complex vitamin with methylated B12. I compromised and bought a lower dose B complex with methylated B12 (1670% of MDR) and took it once or twice weekly. One morning after having the vitamin and soon after, cereal and coconut milk fortified with B12, I broke out in a red rash all over my body. This is when I had the repeat B12 and the 1500 blood level.
How would one diagnose low B12 when serum B12 is elevated?
Does anyone else have elevated serum B12? Is it common to our diagnosis?
User avatar
Zizzle
King Penguin
King Penguin
Posts: 3492
Joined: Thu Jul 22, 2010 9:47 am

Post by Zizzle »

Have you been tested for an MTHFR mutation? Your integrative doc is probably assuming you have one or two. Than means your enzyme that converts regular B-12 to the active, usable form is only operating at 30%, and regular B-12 can build up and even become toxic for you. The build up of cyanocobalabin would explain the high blood levels, but you probably have low levels in your tissues. Same is true for folic acid. You must avoid fortified foods and only take the methylated forms of these vitamins.

You can easily find out your mutations by ordering a $99 23&Me saliva gene test in the mail and running your results through the Genetic Genie.com website.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
User avatar
tex
Site Admin
Site Admin
Posts: 35071
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

DJ,

Actually, a number of us have elevated B-12 test levels. In my case it's almost surely due to the fact that I have taken Metanx for so many years. When I asked my GP whether I should be concerned about it, he said "No". :shrug:

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
User avatar
DJ
Gentoo Penguin
Gentoo Penguin
Posts: 478
Joined: Tue Oct 01, 2013 5:15 am
Location: Upstate NY

Post by DJ »

Hi Zizzle,
Yes, I was tested and I have the MTHFR mutation. I had only a couple of processed/fortified foods in my diet (GF cereal and coconut beverage) and I eliminated them. I wonder if eliminating those will correct my blood level. Might the methylated form also be a problem? I have a diet very high in meat and fish.

Do you know what other useful information might come from a 23&me analysis?

Thanks!
User avatar
DJ
Gentoo Penguin
Gentoo Penguin
Posts: 478
Joined: Tue Oct 01, 2013 5:15 am
Location: Upstate NY

Post by DJ »

Hi Tex,
I have been concerned so thanks for being in touch. So much for coconut beverage! I'm on my way to the store to look for something new for my coffee. I eat very few processed foods so I won't be giving up much. Do you think I should try the methylated B12 again after I am completely free of all enriched foods?
User avatar
tex
Site Admin
Site Admin
Posts: 35071
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

I wish I knew the answer to that question, but I really have no idea.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
User avatar
Zizzle
King Penguin
King Penguin
Posts: 3492
Joined: Thu Jul 22, 2010 9:47 am

Post by Zizzle »

Which MTHFR mutations do you have? 677T or 1298c? And how many copies? If you are not methylating well, even the methylated B-12 may not be fully usable by your body. Many people with the 677T mutation have to start low and slow on the methylated Bs, often due to side effects.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
User avatar
DJ
Gentoo Penguin
Gentoo Penguin
Posts: 478
Joined: Tue Oct 01, 2013 5:15 am
Location: Upstate NY

Post by DJ »

Hi Zizzle,
I wanted to look back on my results but I can't find them at the moment. I know 677T is the issue. I think I have two copies. I'm so frustrated that I recently misplaced my results. :mad:
lisaw
Adélie Penguin
Adélie Penguin
Posts: 168
Joined: Mon Nov 26, 2012 9:27 pm
Location: Chicago

Post by lisaw »

DJ:

You can get coconut milk with no additives that will work for you. Trader Joes and other stores carry it.

Lisa
User avatar
DJ
Gentoo Penguin
Gentoo Penguin
Posts: 478
Joined: Tue Oct 01, 2013 5:15 am
Location: Upstate NY

Post by DJ »

Thanks Lisa, I will try Trader Joe's and another local store. I can't find coconut milk without addatives in the supermarkets.
User avatar
Gabes-Apg
Emperor Penguin
Emperor Penguin
Posts: 8332
Joined: Mon Dec 21, 2009 3:12 pm
Location: Hunter Valley NSW Australia

Post by Gabes-Apg »

When research methylation results I read that a high serum B12 can mean that the inactive form is high, but we are low on active form.
Do you take the active form of B12?

I don't have either of the Mthfr mutations but do have methylation issues, and my combo of results showed that I need to take both forms of B12 for the B12 to be absorbed and used properly..
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
User avatar
DJ
Gentoo Penguin
Gentoo Penguin
Posts: 478
Joined: Tue Oct 01, 2013 5:15 am
Location: Upstate NY

Post by DJ »

I have 677T 677T. At the suggestion of my Nurse Practitioner, I took methylated B vitamins. I used half the recommended strength with far less frequency than recommended. I was also using Silk fortified coconut milk and occasionally, fortified Chex. The short story is that I broke out in a systemic rash :???: My grandmother had what I have. She had a terrible cough that she called "choking" (exactly like mine) and she had pernicious anemia. I don't know how to learn if my underlying B12 level is low while my serum B12 level is high. I eat a LOT of meat and fish.
User avatar
DebE13
Rockhopper Penguin
Rockhopper Penguin
Posts: 1657
Joined: Sun Nov 27, 2011 5:32 am
Location: Wisconsin

Post by DebE13 »

I've had elevated B12 for a while. No one seems too concerned and I don't know what the next should be if any. Googling the possibilities lead me to believe I was dying :lol: so I stopped. I currently have other health issues to obsess over so I'm currently burrying my head in the sand on this one. All joking aside, I really don't know if it's an issue or something that will send me on a wild goose chase if I bring it up.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
User avatar
DJ
Gentoo Penguin
Gentoo Penguin
Posts: 478
Joined: Tue Oct 01, 2013 5:15 am
Location: Upstate NY

Post by DJ »

I have a history of "microdosing". After I speak with my Integrative Practitioner, I may make homemade methylated B vitamin capsules by dividing one store-bought capsule among several blank capsules to learn if I can tolerate a much lower dose.

Deb, I was entirely freaked out from what I read about elevated b12. Being that my practitioner thinks it's my gut, and so many in our group have the same problem, I think I'll join you in obsessing about something different. :pigtail:
User avatar
Lucy_B
Adélie Penguin
Adélie Penguin
Posts: 129
Joined: Fri Sep 04, 2015 9:39 am

Post by Lucy_B »

My B-12 is also very high, but my doc said that was to be expected b/c I take a daily megadose of methyl B-12 in addition to my l-methylfolate (I'm compound heterozygous for MTHFR). I never realized elevated B-12 could be a sign of something serious. Of course now I'm probably gonna google it and freak myself out, lol. ;) Honestly, though, I don't think you have anything to worry about. Do you take l-methylfolate as well? They seem to work synergistically.
2005- Crohn's dx (later changed to "IBS")
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx
Post Reply

Return to “Main Message Board”