What to do/take if sensitive to B12?

drmullin30

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Yes. B12 is a very complex molecule. In order for it to be absorbed from foods, it must first be cleaved from the food source, then it must land in the duodenum and bind with a special protein, called intrinsic factor, which is produced by the parietal cells that line the stomach. It is then carried through the intestines to the ileum, where it can finally be absorbed.

This process can be interrupted in various ways. Autoimmune conditions can attack intrinsic factor or parietal cells, leaving nothing for the B12 to bind to. Low stomach acid or gastric atrophy can hinder the ability for B12 to be separated from food in the first place. Stomach bypass surgery that removes the duodenum leaves no place for the vitamin to bind to intrinsic factor. Certain parasites and bacterias can gobble up B12 meant for the body, leaving none for the host. There really are quite a number of ways that B12 absorption can be disrupted.
Thanks @Galixie that's excellent information and probably why I have such better results with the transdermal b12 oils.

Do you know of any way of increasing the body's production of intrinsic factor? Also do you know of any other nutritional treatments for SNPs in the b12 transport pathways CD320 and TCN2 genes? I have numerous SNPs on these genes that reduce intestinal absorption and intra-cellular transport of the cobalamin molecules.
 
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I don't understand half of the information on this forum, nor what methylation is
Methylation, and understanding it, was a challenge like climbing the North Face or El Capitan when I first came to these threads. It still has a sort of mystical glow around it .....
There are many other people here that have improved their ME/CFS through diet and supplements as well.
..... and I'm one of them. Totally agree with you J-Bo, and am always kinda astonished when people chose to dismiss their importance ....
in other words it’s an anecdotal account
The plural of anecdote = DATA .....
Anecdotal or not, it works for me and others
And again, totally with you DocM ... and again, the plural of anecdote is etc etc etc ....
 

Galixie

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Thanks @Galixie that's excellent information and probably why I have such better results with the transdermal b12 oils.

Do you know of any way of increasing the body's production of intrinsic factor? Also do you know of any other nutritional treatments for SNPs in the b12 transport pathways CD320 and TCN2 genes? I have numerous SNPs on these genes that reduce intestinal absorption and intra-cellular transport of the cobalamin molecules.
I'm sorry that I am not very familiar with with the genetic issues. Even if I had been following the subject, any info I would've gleaned would be a decade out of date by now.

All I really remember on that topic is that the body is normally able to recycle most of the B12 it absorbs. It's so good at recycling that a normal person only needs to consume around 6 micrograms per day. But a 'faulty' gene or genes can disrupt the pathway at any point in the process causing the level of active B12 to fall. Depending on where the pathway is disrupted, there can be an overall B12 deficiency with the serum B12 level showing as low, or there could be an active B12 deficiency where the serum B12 can show as normal or even high despite symptoms of a deficiency. This lab result occurs because the serum B12 test cannot distinguish between active B12, inactive B12, or B12 analogues (such as what is found in spirulina). An active B12 test can be helpful in determining those cases.

I don't know of a way to increase intrinsic factor. I know that pig intrinsic factor was once available as a supplement, but the FDA recommended against using it as a method for increasing B12 absorption back in the 1960's.
 

Victronix

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Yes. B12 is a very complex molecule. In order for it to be absorbed from foods, it must first be cleaved from the food source, then it must land in the duodenum and bind with a special protein, called intrinsic factor, which is produced by the parietal cells that line the stomach. It is then carried through the intestines to the ileum, where it can finally be absorbed.

This process can be interrupted in various ways. Autoimmune conditions can attack intrinsic factor or parietal cells, leaving nothing for the B12 to bind to. Low stomach acid or gastric atrophy can hinder the ability for B12 to be separated from food in the first place. Stomach bypass surgery that removes the duodenum leaves no place for the vitamin to bind to intrinsic factor. Certain parasites and bacterias can gobble up B12 meant for the body, leaving none for the host. There really are quite a number of ways that B12 absorption can be disrupted.
I have a recent issue where I'm wondering if digestive enzymes could be interfering or changing my B-12 absorption. I was diagnosed with a B-12 deficiency over a decade ago and have always had digestive issues.

I've been taking Enzymatic Therapy's B-12 infusion for several years now, and just in the past couple of months I've gotten pretty bad (surprising) numbness in my hands and feet, so have increased the dosage by 500 (I take 7000 per day). So far, the 500 helped nicely, initially, but now it is going back to numbness again, so I will probably need to go up to 1000 more to address it.

But I haven't needed to change the dosage in years.

The only thing has changed is that I started taking a digestive enzyme with ox bile (https://www.thorne.com/products/dp/bio-gest-reg-60-s Thorne Bio-gest, that has: Betaine Hydrochloride, Bile Salts, Glutamic Acid, Pancreatin and Pepsin). So I'm wondering if there was some type of reaction that might be happening. I've never tried to consistently take digestive enzymes before, but I got a gall bladder infection this Spring and my doctor recommended taking them.

Any thoughts?

I guess I will see about doing a stand-alone post. I will be talking to my doctor but I'm guessing she won't have the level of knowledge to know what might be going on here.
 
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drmullin30

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Hi
I have a recent issue where I'm wondering if digestive enzymes could be interfering or changing my B-12 absorption. I was diagnosed with a B-12 deficiency over a decade ago and have always had digestive issues.

I've been taking Enzymatic Therapy's B-12 infusion for several years now, and just in the past couple of months I've gotten pretty bad (surprising) numbness in my hands and feet, so have increased the dosage by 500 (I take 7000 per day). So far, the 500 helped nicely, initially, but now it is going back to numbness again, so I will probably need to go up to 1000 more to address it.

But I haven't needed to change the dosage in years.

The only thing has changed is that I started taking a digestive enzyme with ox bile (https://www.thorne.com/products/dp/bio-gest-reg-60-s Thorne Bio-gest, that has: Betaine Hydrochloride, Bile Salts, Glutamic Acid, Pancreatin and Pepsin). So I'm wondering if there was some type of reaction that might be happening. I've never tried to consistently take digestive enzymes before, but I got a gall bladder infection this Spring and my doctor recommended taking them.

Any thoughts?

I guess I will see about doing a stand-alone post. I will be talking to my doctor but I'm guessing she won't have the level of knowledge to know what might be going on here.
Hi @Victronix, are you taking folate?
 
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Thank you all so much for your incredibly informative posts and for taking the time to break everything down for me into a format that I could understand! This community is amazing and I wish I joined it years ago!

That's interesting what you said about the inactive and active forms of B12 @Galixie, I didn't realise that there were two seperate forms. That would explain a lot as my blood tests from the GP always come back as normal.

I think mine is either being caused by my vegetarian diet ( although I do eat a lot of dairy) or the blastocystis hominis infection that I was diagnosed with at the start of the year. The GP didn't even know what that was. They gave me Metronidazole for it when I asked but it was under the recommended amount ( because they said they weren't allowed to prescribe anything higher?) and I think it just aggravated the situation.
 
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Intrinsic factor is produced by cells in the mucosal lining of the stomach, and digestive issues could likely interfere with that, but that's just a layman's opinion ...

For reasons I can;t recall, I avoided taking digestive enzymes with ox bile. You might want to do a little google on ox bile as a digestive aid ....

Are you bile-deficient do you know?

I'm just sort of spit balling here, and I'm not sure if any of this is helpful ....
 
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I will be talking to my doctor but I'm guessing she won't have the level of knowledge to know what might be going on here.
That's just staggeringly depressing. What the fluck do they teach in medical school any more?


Staggeringly depressing, but sadly, not particularly surprizing. I'm saddened that you have to go thru this level of gob-smacking ineptitude, @Victronix , and I hope that by some miracle you find a Dr who actually knows what they're supposed to know after all those years of study and training.

I'm going to mutter off into an angry corner now ....
 

Victronix

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drmullin30

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Hi @Victronix,

I can't take any dosage of b12 without methylfolate without getting deficiency symptoms such as parathesia. I also get parthesias when my potassium, copper or calcium get too low.

All of those can be put into deficiency by b12 supplementation.

Maybe the digestive supplement has changed your absorption of electrolytes and minerals?

How do you know if you're getting enough folate from food to prevent the potential deficiency caused by b12 supplementation? If you can't tolerate methylfolate, can you take folic acid or folinic acid to prevent folate deficiency? Also, does your supplement provide any adenosylcoblamin?
 

percyval577

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I don't understand half of the information on this forum, nor what methylation is, and I have no chance of figuring any of it out with this foggy brain, so if anyone could give me some advice in the most simple of terms, then that would be much appreciated!
Likewise I havn´t really understood the B9/B12 connection in this folate cycle,

but I know, that B12 works for bringing in methylgroups into the DNA, which effects its readings. - Now, there is also an acetylation of the DNA, bringing in acetyl groups into the DNA for the process of reading it.

So, I could imagine, that if you change some actions by B12, you might also want to change actions affected by acetylation. Acetate is found in vinegar.

In my experience - on top of restrictions though - only tiny amounts of vinegar (a drop in a glass of water, very slowly drinking, is best. Same with B12, even not as strong though.

Both molecules, if I remembering rightly and interestingly, diminish nitric oxide (NO), a kind of messager molecule, maybe better a "messager metabolite" which though may be actively produced for purposes, e.g. for plasticity of nerves.
 

drmullin30

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I don't understand half of the information on this forum, nor what methylation is, and I have no chance of figuring any of it out with this foggy brain, so if anyone could give me some advice in the most simple of terms, then that would be much appreciated!
Hi @JoeyJo here are a couple of links for a basic explanation of methylation. It would be impossible to explain in a single post here.

https://www.revolutionhealth.org/what-is-methylation-and-why-should-you-care/

https://phlabs.com/methylation-made-simple

For more detailed information I suggest looking at information from Dr. Ben Lynch: https://www.drbenlynch.com/articles/

This website is a bit out of date but it helped me a lot when I was first learning: http://heartfixer.com/AMRI-Nutrigenomics.htm
 
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here are a couple of links for a basic explanation of methylation. It would be impossible to explain in a single post here.
I've never been able to untangle the complex skein of methylation, and fnally gave up, saving it for whenever my brain function kicked in.

Thank you for those links @drmullin30 .... am hoping they unravel the Great Mystery for me, and am pretty sure they'll help a lot of other methylation-confused members too ...
 

HABS93

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:jaw-drop::jaw-drop::jaw-drop: :woot::woot: :thumbsup: :xeyes::xeyes::xeyes:
To be diplomatic, I'll add the caveat / reminder that we're all different, and just because that's true for you @jaybee00 , it isn't necessarily true for everyone else ....
No matter what the cost mentally never give up on trying to better yourself. Whether you're sick or not. Everyone is different. Personalized situations that led to your what happened with you.
 
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Hi everyone!

I started taking B12 recently when my DUTCH test revealed a slightly elevated level of MMA ( 2.4 when the normal range was 0 - 2.2).

I felt SO much better for taking it. The brain fog went away, I got my energy back and just generally felt like my normal self again. However, the chronic insomnia got MUCH worse (most supplements tend to set it off).

I took:
Nutribioticals Methylcobalamin 1000mcg - Felt fantastic in the day and couldn't sleep at all at night.
So changed to:
Cytoplan Hydroxocobalamin Sublingual 1mg - Had the same highs and lows but they weren't quite as intense.

So I'm looking for advice on how to take it. Is it just a case of start low and slow? Or is there anything I can take alongside it which might reduce the likelihood of it keeping me up at night? Is it worth me trying Adenosylcobalamin?

I don't understand half of the information on this forum, nor what methylation is, and I have no chance of figuring any of it out with this foggy brain, so if anyone could give me some advice in the most simple of terms, then that would be much appreciated!
I know this post is over a year old, but I thought I'd comment anyway. I haven't read through all of the other comments you've made on this site, so if I say something you already know, I apologize.

First, right off: you can take niacin to mitigate the caffeine-like effects of supplemental Vitamin B12. Just plain old niacin--not the no-flush niacin. Of course, this means you'll end up with an annoying flush sometimes, but it doesn't last long and it helps if you take it with food. I don't know why it works (something to do with the way all B vitamins work together) but I used to get bad insomnia every time I took my B12 shots, which these days is every two days. The niacin helped me a lot. I take 50 mg daily as a 120 pound woman.

I personally have a significant problem with Vitamin B12, and judging by the fact you have high MMA, you clearly do as well. But what's causing it is the question. The treatment will depend on that. I have a metabolism disorder, likely genetic. I'll explain that one in a moment because it seems to be something that many people don't understand, including most of my physicians.

Regarding treatment: for all causes of B12 deficiency, once your body is in a deficient state, you must take Vitamin B12 injections until it's rectified. The reason for this is that your body stores a small bit of B12 and then excretes the rest through urine and/or feces. So you must replenish your body's stores first and then take it until your methylmalonic acid levels are normalized and any accompanying macrocytosis (enlarged red blood cells) is gone.

The standard treatment is: 1ml IM or SQ injection every day for 7 days, then once per week for 5 - 7 weeks, then once per month. Depending on the cause, the monthly injections may be lifelong after the initial daily/weekly treatment. Sublingual supplements are not usually adequate, though I have seen very large doses of sublinguals (5000 mcg+) that may work. But you'd have to be regularly tested and it would only be to replace the monthly maintenance injections, and you'd have to take it every day. Only a fraction of oral and sublingual B12 makes it into your system.

Though there are several different types of B12 supplementation, don't buy the hype the methylcobalamin is the best. It depends on the cause. Hydroxycobalamin and cyanocobalamin are the standard.

The causes of B12 deficiencies, in order from most common to rare:

1. Simple lack of dietary intake. It doesn't have to be much, but your body has a maximum amount of B12 it can absorb at one time, so two or more servings of animal byproducts per day is best if you're not vegan. This is the easiest to treat and doesn't usually require permanent injections. Once B12 levels are adequate and MMA levels are normal, a small daily oral supplement can be taken if you're vegan.

2. Intestinal malabsorption. This can be caused by a number of factors, such as celiac disease or irritable bowel disease. The intestinal wall becomes damaged enough and stops or slows the absorption of B12. A more rare cause might be a parasite like giardia or pork/beef tapeworm. If the underlying cause of the malabsorption can't be controlled or cured, then a lifelong, monthly B12 injection is required.

3. Pernicious anemia. This is an autoimmune condition where the immune system attacks the Intrinsic Factor (IF). IF is what binds to the B12 in your stomach and carries it to the next stage of use. Your body will also produce limited amounts of it normally, which is why there's a max amount of B12 you can absorb at one time. So with PA your body suddenly has a lot less IF to bind with the B12 and you end up deficient, despite normal dietary intake. There are specific tests that can be used to diagnose PA in addition to serum B12, MMA and a CBC, which are: Anti-intrinsic factor antibody test and the parietal cell antibody test. They have varying degrees of sensitivity but can be useful. Pernicious anemia treatment requires lifelong monthly injections.

4. Metabolism disorder, also sometimes called "inborn error of cobalamin metabolism" which is genetic. Methylmalonic acidemia is another term that might be used. What this means is that there's a problem with the way your cells actually USE vitamin B12. So it's not an absorption or dietary issue like the other causes, there's actually a whole host of problems that can occur with the way your body uses it.

This means that the typical test for B12, the serum B12 test, is inadequate because it only checks for what's in the blood, not what's in the cells. So you can have a bunch of B12 floating around in your body and the serum test will analyze that and say "normal" or "high" but you're actually deficient. This is why the MMA and homocysteine tests are needed.

If you have a normal/high serum B12 and high MMA, this might be you- especially if you have a high MMA that seems to stick around, despite B12 treatment. I personally have a metabolism disorder, likely genetic. It took 20 years to figure it out because my Vitamin B12 serum tests usually looked normal. Most doctors don't even know to check MMA, so it's awesome that you apparently had a doctor who did. Methylcobalamin is ineffective in treating these conditions. The standard is hydroxycobalamin injections, or cyanocobalamin if the former can't be used. But more frequent injections are required than the typical monthly.

It was my neurologist that first brought it up. I had significant pain in my extremities and had no idea that it was peripheral neuropathy, until he diagnosed me. At this point I knew I had a problem with Vitamin B12 and was taking supplements, but no one knew the cause of it. I was initially taking monthly cyanocobalamin injections, but after a manufacturing plant closed and caused a shortage of injections, I took 5000 mcg of methylcobalamin sublinguals every day. BIG mistake. It was almost like taking nothing at all and my neuropathy exploded. This is when I sought out a neurologist. His assessment was "Judging by the fact you've had a B12 problem for a number of years and frequent bouts of macrocytic anemia, I think the cause is a vitamin B12 deficiency even though your tests say it's normal and I have no idea how to explain it." The man's a genius.

From then on I was able to do my own research and find some doctors who actually knew about these things, including the rare ability to meet with Dr. Ralph Green of UC Davis, who is one of the few world experts on cobalamin metabolism disorders (he doesn't usually meet with patients but it was facilitated through my hematologist at UC Irvine).

My hematologist ordered a cobalamin related disorders genetic panel from ARUP labs (I think Baylor University has a smaller panel) that looked at 28 different genes https://ltd.aruplab.com/Tests/Pub/2011157?_ga=2.189074403.934340318.1633910875-1094602760.1633910875 My insurance covered this in its entirety, so maybe yours will do the same (if you're American). But you'll need a doctor (preferably a hematologist or geneticist) that can use ARUP labs, which largely serves university hospitals.

According to this panel, I have a deletion in the MTRR gene, though it's only one bad gene (instead of two) and they're unsure if it's causing my symptoms. But we're sure I have a metabolism disorder. To treat it we sort of experimented. Because my body has a tougher time getting B12 into cells, we decided it was best to basically to do a "standard treatment on steroids" with a 1ml SQ injection everyday for 30 days, the once every other day for 2 months, and now I take my maintenance dose every 2 days. My neuropathy, which was all the way up to my elbows and knees, is now just in my toes. And my anemia is gone.

I still struggle with severe fatigue, but it's much better. I don't know if the two are related, though after 20 years of Vitamin B12 deficiency, it's possible that there's some permanent damage.

Anyway, I know that's long. I hope it helps. Let me know if you have any questions.
 

Shanti1

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@MagicalMe Thanks so much for your post, I think it brings up the super important point that some people can have normal or elevated serum B12 and yet also have high MMA, so serum b12 should NOT be relied on if someone has neurological or other B12 deficiency symptoms. Also, that many of these individuals don't respond to methylcobalamin.
I was thinking to make a post on this specifically when I had a chance as, a few years back, through my job, I pulled results from 100 people who had serum B12 and MMA done at the same time, and we found several cases like this. I was later able to follow the cases of 5-6 individuals who had high serum B12 and high MMA that didn't respond to methylcobalamin, but that normalized with adenosylcobalamin. I can not find this issue documented anywhere in the literature, and wasn't able to identify a responsible SNP (although I'm sure there is one), but I think this problem may be relatively common. You are definitely not the only one out there.