Practitioners with Conflicting Views - B12

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

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

Practitioners with Conflicting Views - B12

Post by DJ »

I have and elevated B12 level, usually 1500 to 2000. I've broken out in a B12 rash twice.

My holistic nurse practitioner recommended that I take a high dose of methylated B complex even though my B12 is high. She feels that the B12 is not getting to where it's needed..

My gastroenterologist questions the logic of my NP. She would discontinue use of the B12. She asked my to speak with the holistic provider and let her know why continued use of B12 is recommended although I have high B12 levels.

Has anyone been recommended high-dose B12 by a physician or practitioner who is aware of a high blood level of B12? If so, did they explain their logic?

Thanks.
User avatar
tex
Site Admin
Site Admin
Posts: 35066
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

BJ,

How is your homosysteine level? If it's elevated then you may need methylated B vitamins. If it's not elevated, then maybe you don't need more B vitamins.

Last spring when I was having the magnesium deficiency symptoms (before I figured out the problem) I asked my doctor about my B-12 level, which was always at or slightly above the upper limit of the "normal" range. I asked him specifically if I should stop taking the Metanx (which contains 2 mg of methylcobalamin, plus megadoses of the active forms of B-9 and B-6). He simply shook his head and said, "No, that shouldn't be a problem". My homosysteine level is low (as would be expected since I'm taking the active forms of those B vitamins). I do have several MTHFR mutations that affect my methylation processes.

If you happen to be diabetic you should proceed with caution. Make sure that your kidney function is good before taking high doses of B vitamins, and continue to monitor it because research shows that in diabetic patients who have compromised kidney function, high dose B vitamins are contraindicated because they may contribute to additional kidney function decline.

A magnesium deficiency can have the same effect (because a magnesium deficiency can mimic many of the symptoms of diabetes). Along with the other symptoms, when my magnesium deficiency became acute, my kidney function went way down. I have no way of knowing whether or not the high B vitamin levels contributed to that kidney function problem, but there is a good chance that it did, because it took a long time for my kidney function to recover to normal levels, and I apparently have some permanent damage because my kidney function results sometimes barely make the normal level. That never happened prior to the magnesium deficiency incident.

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 Tex,
You have been through so much. Thankfully, you are able to be an active participant in your healthcare and thankfully for the members of this board, you share with us!
My last blood work was last September, done at my request for B12 only after a systemic rash - B12 1530 (ref. 211 - 946)
June lab results - everything within range except B12
B12 was 1663
Homocystine 10.3 (ref. 0.0 - 15.0)
Magnesium 4.8 (ref. 4.2 - 6.8)

I have a very high intake of meat and fish so I'm getting B12.
I increased my magnesium intake a bit since the above results.
I am not diabetic and my liver and kidneys are ok.

As always, thank you.

:flowersmiley:
User avatar
tex
Site Admin
Site Admin
Posts: 35066
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hmmmm. :headscratch: :shrug:

Well, I'm like your GI doc now. Your homocysteine level seems to be fine, so why would you need additional B-12 in any form?

I probably don't know enough about this to be a decent source of information, though.

You're most welcome of course,
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 »

Thanks Tex,
I've been uncomfortable with the B12 situation since I learned of my high levels. It didn't make sense to me to take more.
User avatar
tex
Site Admin
Site Admin
Posts: 35066
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

DJ,

IMO I'm pretty sure that I'm not the only one who doesn't know enough about methylation issues and everything else involved to be able to make valid recommendations. I suspect that many "experts" flatter themselves into believing that they actually understand the essentials of this issue, but only the tip of the iceberg has actually been explored.

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
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 »

I agree with Tex, based on the various articles/websites/blogs I have read, the B12 aspect of methylation is the least understood compared to other elements.
There are 5 different types of B12 and current testing does not provide the right info to know what the individual patient needs.

my initial thought
there are a few practitioners that do have good grasp on full methylation cycle; Amy Yasko, Nancy Mullan, Tim Jackson.

Nancy Mullan does a free phone conference thing - you might be able to ask her and see if she can provide input. the danger of this, is that each practitioner might have a different belief/understanding. and you may never get a consistent answer.

http://nancymullanmd.com/about/
Dr. Mullan holds a weekly Open Forum on Tuesday evenings at 5:00 PM Pacific Time in order to take your questions and for you to find out about her work. The call in number is (605) 562-3140. Punch in access code 691392#. International call in numbers are available. Her specialty areas are MTHFR+, Methylation Genetics, and genetics based nutritional supplementation. Within this context, she most often works with Chronic Fatigue Syndrome, Lyme Disease, Psychiatric Disorders, Autism Spectrum Disorders, Women’s Health Issues, Thyroid Disorder, Gastrointestinal Disorder, and Heavy Metal Toxicity.
Tim Jackson website has a chat forum
http://mthfrsupport.weebly.com/chat-forum.html#/

these two resources would be the 'cheapest' way to try and see if you can get a consistent answer.
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
User avatar
Erica P-G
Rockhopper Penguin
Rockhopper Penguin
Posts: 1815
Joined: Sun Mar 08, 2015 2:06 pm
Location: WA State

Post by Erica P-G »

I'm learning that if someone has an MTHFR gne mutation then they may only need the Methylfolate and not much of the B12, and may only need some of the B6 (because there is potentially plenty of B12 due to foods and by just taking Methylfolate that helps turn the B12 in the right direction in the Methyl world) diabetics do not need the extra help of B12.

If you are NOT- MTHFR then some supplement of B12, and B6 is helpful. Plus due to build up of Ammonia in the cells L-Ornithine or L-Arginine is helpful to release that due to eating protein (which is what we with MC seem to need quite a bit of).

I'm still learning in this dept. and I have to because my husband is MTHFR and Pre-diabetic so I have had to research his side of things, plus I also have him on a basic magnesium intake. I am not mthfr but due to ammonia build up (lots of protein eaten) and the low energy from MC I have been taking almost the equivalent of the Mentax plus the L-Ornithine for a month now and feel much better.

So depending where you fall in the MTHFR or not spectrum will depend on what you may want to do.
Good Luck!!
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
User avatar
ldubois7
Rockhopper Penguin
Rockhopper Penguin
Posts: 1415
Joined: Tue Feb 19, 2013 9:23 am
Location: Pennsylvania

Post by ldubois7 »

Hello....

If I may jump in....I just received some lab results and my B12 & folate are elevated.

Folate --49.2 (range 2-17) I take 1000 mcg a day.

Vitamin b-12--1845 (range 193-986) I take 4,000 mcg a day

I have MTHFR hetero.....

Any thoughts or suggestions?
Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
User avatar
JFR
Rockhopper Penguin
Rockhopper Penguin
Posts: 1394
Joined: Fri Mar 30, 2012 8:41 am

Post by JFR »

One thing to consider is that "normal" is not necessarily "optimal". I certainly don't know what those elevated numbers mean but they very well could be nothing to worry about or maybe you are even "better than normal".

Jean
User avatar
tex
Site Admin
Site Admin
Posts: 35066
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Linda,

I agree with Jean — we really don't have any reason to believe that what the medical community classifies as "normal" is optimal. In some cases having "normal" results is probably a good thing, but in other situations it may just mean that almost everyone in the general population has a certain health problem marked by a test result inappropriately labeled as "normal" simply because most people have the same problem. There are numerous examples of test results where higher than "normal" results are desirable — HDL cholesterol, vitamin D3, IQ, oxygenation rate, visual actuity, etc.

The FDA recently began promoting the addition of folic acid to masa (corn flour used to make tortillas). Over the years they've already persuaded manufacturers to add folic acid to many other diet staples (primarily those that use wheat flour) so as a result, many people these days probably consume way more folic acid than they need. Since the main reason given for "enriching" foods with folic acid is to prevent birth defects, one would hope that the FDA has done their homework on the safety of such policies, because in the real world, most of us are not pregnant.

We don't eat wheat flour, so as a group, we probably get far less folic acid from our diet than most people in the general population. Doctors don't routinely test for folic acid, so most people aren't likely to be aware of their folate level. The last time mine was tested was about a year ago when I was having the magnesium deficiency problem. My result was similar to yours, roughly 3 times the upper limit of the so-called "normal" range. In my case, the result was >1022 and the normal range was listed as >366.

My B-12 result was 1129 pg/mL, and the normal range was listed as 180–934. Neither of the results were flagged because no one knows if there is actually any significance to results above the normal range. When I asked my PCP if I should back off on my B-12 and folate supplements he just shook his head and said, "Naw, that shouldn't matter".

I take three times as much folate as you, and half as much methylcobalamin, FWIW (3 mg of L-methylfolate calcium and 2 mg of mehtylcobalamin). I also have MTHFR heterozygous mutations, but probably not the same ones that you have.

My only suggestion would be to consider cutting your B-12 supplementation rate in half since that's probably way more B-12 than you can utilize with your current folate intake, but that's just an unsubstantiated opinion based mostly on guesswork. :lol:

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
ldubois7
Rockhopper Penguin
Rockhopper Penguin
Posts: 1415
Joined: Tue Feb 19, 2013 9:23 am
Location: Pennsylvania

Post by ldubois7 »

Thanks Tex & Jean!

I attributed my lessened fatigue for the last 6 months to the Vitamin B12, when I doubled it, and I think I will cut that in half, and see how I feel now.

I am in no way leaping through my days at breakneck speed yet, but I've felt more like myself. I attributed it to the B12, magnesium, & folate supplementation.

I appreciate your thoughts!

👍
Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
Post Reply

Return to “Main Message Board”