B12, Neuro Issues Question

[StacyA]

I had GI symptoms at the onset of my celiac being triggered a year ago, and they resolved with a gluten-free diet and resume with any accidental glutening.

I also think some neurological symptoms came along with my celiac's, but they're harder to pinpoint since they've continued on despite being gluten-free and don't really worsen with a glutening. My hands fall asleep about a dozen times a night and my short term memory is impaired. Those don't change with a glutening. Irritability and getting cold easily do get worse with glutening.

I know that neuro symptoms take longer than GI symptoms to clear up, so I have hope (I'm coming up on a year of gluten-free - although, as stated, I've had accidental glutenings).

In the meantime my vitamin D was low so I take supplements. My B12 was checked and it was 780 (with the lab putting healthy range between 211 and 911.) I've read about B12 and neuro symptoms, but my number looks OK - especially since I had that labwork drawn when my neuro symptoms were the worse. Iron is fine and thyroid is fine. I also take a multi, magnesium, C, and calcium.

Does 780 look okay to those of you with knowledge of B12?

Any other advice other than time in healing up neurologically?

[RiceGuy]

From what I've read, serum B12 levels won't show a deficiency until you're in deep trouble, since the body will rob the vitamin from tissues and organs, in order to keep blood levels up. Since there is no known level of overdose for B12, you can safely try a supplement and see how you feel. I'd recommend a sublingual methylcobalamin tablet/lozenge, at between 3-5mg per day. Source Naturals makes some which have been very helpful to me.

What form is your vitamin D? Many say D3 is best. Some say the dosage should be over 2000 IU. Others suggest far less. Vitamin K2 is also helpful, and works in conjunction with vitamin D as well.

Magnesium is great for the symptoms you've mentioned. How much are you taking, and what form is it? You may need a form which is better absorbed, or you may simply need more.

If your multi doesn't have high levels of co-enzyme B vitamins, you may do better with a different formula. A separate co-enzyme B-complex might work even better.

Zinc is another nutrient which can be helpful for some of the symptoms you outline. You might want to consider a separate zinc picolinate supplement.

[cassP]

ya- 780 is a great number i think-

but to reiterate what RiceGuy said- it is true- i believe the Liver stores up 5 years worth of B12. so by the time one finds out that their B12 is like 200s or lower- than i think that means that they've ALREADY depleted their 5 year storage in the liver.

i dont know how long the Celiac has affected u- u may be using Liver b12 right now??? but 780 is a great number- i would just continue with a healthy gluten free diet & take a sublingual b12 once a day.... and just continue with regular checkups to keep an eye on the number, and i think it's best to keep it in this upper range.

[Skylark]

Your B12 is fine. Stick with whatever you're doing. It sounds like there is plenty in your multi and that you are absorbing it well. Three is recent research that B12 megadoses are associated with leukemia so it's not something you want to supplement beyond normal ranges.

For neuro, you want to make sure you are getting a good mix of fats. You need omega-3, lecithin, choline, and inosital. These are naturally present in seafood, soy, and eggs.

[ravenwoodglass]

Do you take a vitamin with folate? That can cause the B12 levels to read higher than what they really are.

[StacyA]

Do you take a vitamin with folate? That can cause the B12 levels to read higher than what they really are.

Thanks everyone for the input so far.

I don't always remember my vitamins every day, but I'm trying. I take Walmart's generic multi, with 400mcg of folic acid, 6mcg of B12, and 15mg of zinc (all 100% RDA). My mg is 500mg (in addition to what's in my multi), my vitamin D is 5000 plus I have a therapy lamp I plan to use when the sun isn't shining as much (it's a good lamp, 'blue max' from Full Spectrum Solutions, and I noticed a big difference the first week I used it back in Feb.)

I have some fish oil tablets, but I hate burping fishy burps all day. Flaxseed supplements require like 6 tablets a day or something, and I would never remember that. I should add more soy and flax to my regular diet for the Omega 3. (I do make both my boys take Omega 3 supplements every day.)

I guess I need to read up on B12. I don't want to take something I don't need, but I also don't want to ignore a potential problem. My 93 year old grandmother with significant osteoperosis has had to take B12 shots every month for YEARS. (I wonder about her and celiac's for multiple reasons.)

But any more input would still be greatly appreciated. My hands falling asleep at night keep waking the rest of me up, and I like my sleep!

[Skylark]

Enteric fish oil gets around the burps. It really is helpful for neuro issues. B12 tests aren't "wrong" the same as celic. If your B12 is OK, that's a good thing.

Hands falling asleep at night is a sign of carpal tunnel. Have you tried sleeping in splints? You can get pretty comfortable Ace ones from the drugstore. The splinting at night helps a LOT for capal tunnel. It keeps you from tucking your hands in funny positions and lets the nerves settle down and heal.

[gf-soph]

Your B12 is fine, so it's unlikely that the numb hands are related to that. I didn't get neuro symptoms from B12 until I was below 200. I don't know much about D deficiency, but I haven't heard of it being related to numbness.

Are the numb hands only at night? If so, it is when you are in bed? I have had numbness in my hands and arms at times, and for me it was related to a vertebra in my neck being slightly out of alignment. When I saw my chiropracter she was able to sort it out (without any rough manipulation). It can come back occasionally, but it's getting less frequent and always resolves with a visit to the chiro.

It may not be the case for you at all, but I thought it was worth mentioning. I have had other neuro symptoms, but mine were related to low B12 and iron, and also to other food sensitvities.

[RiceGuy]

Three is recent research that B12 megadoses are associated with leukemia so it's not something you want to supplement beyond normal ranges.

I've found absolutely no credible source of information to back up this statement. Nothing on PubMed, nor any other authoritative source. A few odd & end sites/forums make similar statements, but no credible, reliable sources to back them up. Do you have a link to something on this subject that is trustworthy?

[Skylark]

I've found absolutely no credible source of information to back up this statement. Nothing on PubMed, nor any other authoritative source. A few odd & end sites/forums make similar statements, but no credible, reliable sources to back them up. Do you have a link to something on this subject that is trustworthy?

I don't know why you couldn't find anything in PubMed. You should be able to look at the references on these papers and turn up a lot more. I'm a little short on time right now so I hope those get you started. Note that this is a chicken-and-egg kind of issue. It's not clear whether the cancer increases B12 or the B12 increases the risk of cancer. What is abundantly clear is that some tumors use extra B12, so the high B12 helps them grow. As a general rule, you don't want to set up conditions that favor cancer cell growth in your body.

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It is never a good idea to take large quantities of concentrated nutrients, unless you have a clear-cut deficiency or a very specific, personal reason for doing so. You cannot assume "vitamin X is nontoxic in any dose". We don't bloody well know! Maybe vitamin X is nontoxic, but maybe it has subtle effects that have not been measured, or maybe overdose on one vitamin throws off balance somewhere else (like we're learning with folate and B12). Research on vitamin metabolism is far, far behind manufacturing and marketing and the best way to get nutrition is still from food rather than pills.

[RiceGuy]

I don't know why you couldn't find anything in PubMed. You should be able to look at the references on these papers and turn up a lot more. I'm a little short on time right now so I hope those get you started. Note that this is a chicken-and-egg kind of issue. It's not clear whether the cancer increases B12 or the B12 increases the risk of cancer. What is abundantly clear is that some tumors use extra B12, so the high B12 helps them grow. As a general rule, you don't want to set up conditions that favor cancer cell growth in your body.

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Thanks. Well, I didn't find a lot more. In fact, I didn't find any more of that sort. But I did find some where the conclusions seem to suggest no correlation between elevated B12 and increased cancer risk, or maybe even a benefit against cancer, if I'm understanding the scientific jargon correctly. Perhaps you can glean more from these than I can.

Does this one suggest folate and B12 reduce a risk factor?

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Does this one suggest low folate increases a risk factor, but B12 and others show no correlation?

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I'm not sure what this one suggests with regard to folate and B12, but it seems that both were used in cancer treatment or something:

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While too much of a given nutrient is certainly not a good thing, nearest I can tell, there is still some ways to go to understand even how to asses B12 levels, and how much is actually too much.

As for some tumors using extra B12, I'm not so sure that alone is a really good reason to avoid pushing B12 status into the upper range. After all, whether a cell is cancerous or not, it'll require all sorts of nutrients. One cannot expect to starve out or prevent cancer by keeping nutrient levels on the low side as opposed to on the high side. The immune system requires all sorts of nutrients too, including B12, and we cannot really survive without the immune system. As I understand it, science has determined that the typical human body has several hundred cancerous cells at any given time, but the immune system is always actively destroying them. There are so many known cancer risk factors which we can easily control, that an elevated B12 level hardly seems like something to really worry about. Especially given the lack of evidence that it does any harm. Better to watch things like blood sugar, free radicals, overall diet, addictions, etc.

[Skylark]

Of the three references you provided, two mention completely different cancers and one is irrelevant. In the third paper, the doctors are using B12 to protect against the cytotoxic action of chemotherapeutics which is an entirely different thing. Normal B12 is probably protective against many cancers; it's driving B12 above the normal ranges with injections or sublinguals that is of concern.

In your first post you asserted "Since there is no known level of overdose for B12, you can safely try a supplement and see how you feel."

I have found references that suggest otherwise as to the safety high serum B12 levels, but you have not provided any references to back up your own statement. Normal human physiology limits B12 uptake through the intrinsic factor system. Megadoses of oral B12 (a pressed tablet you swallow whole) are safe because the human body has a well-designed limit on the absorption. Sublinguals and injections bypass that check on absorption. It's glib and I believe ill-advised to recommend someone take megadoses of sublingual B12 when they have high-normal blood levels of it, so their natural absorption mechanisms are obviously working fine.

Would you care to provide a study showing that the absurdly high 3-5mg daily sublingual dose you are suggesting is safe and has no side effects whatsoever? Or perhaps you mistyped and recommended 1000x the reasonable dose of 3-5 MICROgrams a day?

[frieze]

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[Skylark]

Oh, dear. So we can't even test for levels properly. Thanks for the link... I think.

[ravenwoodglass]

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In this link was this note

"Vitamin B12 supplementation and chronic myeloid leukemia represent less than 5% of all hypervitaminemia. There is no correlation between the level of cobalamin blood level and the number of underlying diseases for each patients."

I do agree that we should get our vitamins from food but in the early stages of healing vitamin B12 absorption and utilization can be compromised by the damage we have to the intestines.

No one should just continue to supplement indefinately and they should always have the levels checked every few months. Once the levels are at normal ranges then the supplementation can be dropped or lowered down. For us once our gut function returns to normal the need to supplement B12 may be negated. Supplementation can be beneficial in the early healing stage especially when folks have strong neuro impact but it doesn't and shouldn't continue forever unless someone is being monitored by their doctor.

[RiceGuy]

Of the three references you provided, two mention completely different cancers and one is irrelevant. In the third paper, the doctors are using B12 to protect against the cytotoxic action of chemotherapeutics which is an entirely different thing. Normal B12 is probably protective against many cancers; it's driving B12 above the normal ranges with injections or sublinguals that is of concern.

OK, though I have some doubt that B12 could encourage one type of cancer while fighting others.

In your first post you asserted "Since there is no known level of overdose for B12, you can safely try a supplement and see how you feel."

I have found references that suggest otherwise as to the safety high serum B12 levels, but you have not provided any references to back up your own statement. Normal human physiology limits B12 uptake through the intrinsic factor system. Megadoses of oral B12 (a pressed tablet you swallow whole) are safe because the human body has a well-designed limit on the absorption. Sublinguals and injections bypass that check on absorption. It's glib and I believe ill-advised to recommend someone take megadoses of sublingual B12 when they have high-normal blood levels of it, so their natural absorption mechanisms are obviously working fine.

Would you care to provide a study showing that the absurdly high 3-5mg daily sublingual dose you are suggesting is safe and has no side effects whatsoever? Or perhaps you mistyped and recommended 1000x the reasonable dose of 3-5 MICROgrams a day?

I think it is interesting that StacyA's serum level would test as high as it apparently has, given the oral B12 dose of only 6mcg. From what I've read about B12, the immune system, and so forth, it wouldn't surprise me if the body itself is driving up the level in the blood for some purpose yet unknown. It would help explain the neurological issues, if intracellular levels are being depleted. Perhaps the body is fighting something? If it were me, I'd want certain things checked, including homocysteine, nitric oxide, heavy metals, amino acids, B vitamins, and ferritin levels.

I'd still do the things I suggested in my first post, because:

1) The symptoms are consistent with deficiencies of B12, magnesium, and certain other nutrients.

2) The symptoms of B12 deficiency are serious and very well documented.

3) The B12 doses I suggested are commonly found in numerous supplements, and are time-tested to be both safe and effective.

4) The supplements are very affordable, easily obtainable, and there are virtually no real risks when following label recommendations.

As for the references to back up the statement I made in my first post:

To raise your vitamin B12 level, you have to take at least 1,000 mcg of vitamin B12 every day.

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Vitamin B12 has not been shown to cause any harm.

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...evidence suggests that serum vitamin B12 concentrations might not accurately reflect intracellular concentrations.

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Thanks frieze. Backs up what myself and others have stated.

Some additional articles of interest:

B12 and CFS:

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B12 and Fibromyalgia:

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B12 and Peripheral Neuropathy:

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More interesting stuff:

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Also, you yourself recognize that it is not known if elevated B12 encourages cancer, or if the presence of cancer may cause an elevated serum B12 level. From what I've read today, cancer cells have many more times the normal number of B12 receptors. So I'd have to wonder if perhaps the elevated B12 level is the body's way of compensating for a localized deficiency in the vicinity of the cancer. The articles you referenced did not indicate that the patients where taking B12 shots or supplements, so I'm lead to believe they were not.

In short, there's a wealth of information showing all kinds of benefits from taking vitamin B12. This is in stark contrast to the lack of evidence to support concerns of overdose.

[Skylark]

Nobody is disputing the importance of adequate B12 here. You still haven't provided evidence that your recommendation of 3-5 mg sublingual daily is substantiated by any research. I'm waiting patiently for you to provide a proper long-term safety study of 5mg sublingual daily doses of B12 as you're recommending 5-fold above the norm, and with no time limit.

I looked at all your links and the only study that dosed anywhere near that high only went for two weeks. All the rest are 1-5 mg injected monthly, or 500ug IV a couple times a week in dialysis patients who are far from normal, or 1000ug orally once or twice a week. The actual estimated daily need for B12 in people who are absorbing it well is about 6ug a day. (Multiply by 30 and you can see why monthly shots are in the 2-5 mg range.)

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The very pages you linked do not support your dosing recommendation. Linked from the very NIH page you provided in your post:

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"The authors of a review of randomized controlled trials comparing oral with intramuscular vitamin B12 concluded that 2,000 mcg of oral vitamin B12 daily, followed by a decreased daily dose of 1,000 mcg and then 1,000 mcg weekly and finally, monthly might be as effective as intramuscular administration [24,25]"

A SENSIBLE thing to try would be 500ug sublingual a couple times a week. Then you're not wandering off into uncharted and potentially dangerous nutritional waters.

[ravenwoodglass]

That same article states:

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"The IOM did not establish a UL for vitamin B12 because of its low potential for toxicity. In Dietary Reference Intakes: Thiamin, Riboflavin, Niacin, Vitamin B6, Folate, Vitamin B12, Pantothenic Acid, Biotin, and Choline, the IOM states that "no adverse effects have been associated with excess vitamin B12 intake from food and supplements in healthy individuals" [5].

Findings from intervention trials support these conclusions. In the NORVIT and HOPE 2 trials, vitamin B12 supplementation (in combination with folic acid and vitamin B6) did not cause any serious adverse events when administered at doses of 0.4 mg for 40 months (NORVIT trial) and 1.0 mg for 5 years (HOPE 2 trial) [62,63]."

and also:

Individuals with stomach and small intestine disorders, such as celiac disease and Crohn's disease, may be unable to absorb enough vitamin B12 from food to maintain healthy body stores [12,23]. Subtly reduced cognitive function resulting from early vitamin B12 deficiency might be the only initial symptom of these intestinal disorders, followed by megaloblastic anemia

When we are first diagnosed we need high levels to build up the stores. But once those stores are built up we should drop down the dosage but we also need to keep in mind we may still need slightly more, not extreme megadoses but slightly more than the normal population, to keep those stores up. As with any med we need to keep our doctor advised of what and how much we are taking and get our levels monitored periodically.

[RiceGuy]

Nobody is disputing the importance of adequate B12 here. You still haven't provided evidence that your recommendation of 3-5 mg sublingual daily is substantiated by any research. I'm waiting patiently for you to provide a proper long-term safety study of 5mg sublingual daily doses of B12 as you're recommending 5-fold above the norm, and with no time limit.

I looked at all your links and the only study that dosed anywhere near that high only went for two weeks. All the rest are 1-5 mg injected monthly, or 500ug IV a couple times a week in dialysis patients who are far from normal, or 1000ug orally once or twice a week. The actual estimated daily need for B12 in people who are absorbing it well is about 6ug a day. (Multiply by 30 and you can see why monthly shots are in the 2-5 mg range.)

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The very pages you linked do not support your dosing recommendation. Linked from the very NIH page you provided in your post:

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"The authors of a review of randomized controlled trials comparing oral with intramuscular vitamin B12 concluded that 2,000 mcg of oral vitamin B12 daily, followed by a decreased daily dose of 1,000 mcg and then 1,000 mcg weekly and finally, monthly might be as effective as intramuscular administration [24,25]"

A SENSIBLE thing to try would be 500ug sublingual a couple times a week. Then you're not wandering off into uncharted and potentially dangerous nutritional waters.

I believe the following more than substantiate the dosage I suggested.

Here's a study showing benefit from 60mg of methylcobalamin every day for six months:

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Two studies showing benefit from 25 and 50mg of methylcobalamin:

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Here's a study showing benefit from what they are calling "ultra-high" dosages of methylcobalamin:

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Note that none of the above make any mention of side effects. It is also important to note that a 500mcg dose was compared to 25mg, and was found to be ineffective.

Here's a PDF document with a number of high-dose B12 studies:

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So yes, there is precedence that dosages even far higher than what I suggested can be beneficial, and again, without side effects. But I think the real point is that there is no substantial reason not to try 3-5mg of methylcobalamin per day. Suppose it'll take that much to get appreciable benefit? As for the duration, I think that also depends on the individual.

[Skylark]

Thank you very much for the high dose references. I feel a little better about your 3-5 mg/day recommendation doing harm.

As you have seen, I get nervous about synthetic vitamin megadoses as I really don't think we know all we should about subtle population effects. The recent meta-analysis of calcium supplements (without vit. D) that shows increased cardiac disease risk is the kind of thing that only shows up after millions of people have taken supplements for decades.

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The same thing happened with beta-carotene many years back. People were encouraged to take lots as it was "totally safe". As the larger studies were done, it was realized that synthetic beta-carotene can have a pro-oxidant effect and isn't as safe as was first believed.

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Hopefully we won't have a study like this about vitamin D and B12 in ten more years, since we're currently in an uncontrolled, nationwide experiment on those two supplements.

[RiceGuy]

Great! So glad that's settled!

Another nutrient which is involved in neurological function is folic acid. That may be worth investigating as well.

If all the major nutrients are in good supply, the only other thing which I suppose might be a factor is a yeast overgrowth. However, the symptoms aren't quite an obvious fit, so I'm not really confident there's sufficient cause to suspect it.

How about MSG? Artificial sweeteners can also cause the sort of problems which were mentioned. But while artificial sweeteners are expected to always be declared on the label, MSG is often hidden. You may wish to read more about this Open Original Shared Link.

[Skylark]

I'm conservative - scientists who have been around for a while tend to be.

Dunno about yeast or MSG. I guess I'm thinking gluten as the underlying cause and things just aren't healing because OP isn't splinting and letting her wrists bend too much at night. There is also physical therapy for carpal tunnel, and I've had ibuprofen recommended as a temporary anti-inflammatory to help things settle down. The splinting and PT is the main thing, though. You have to be pretty aggressive about keeping wrists in a neutral position to let things settle down, especially while sleeping. Letting your hand tuck into a funny position and go to sleep over and over is really bad if you have carpal tunnel issues.