My Experience with B12

[Galixie]

I was first diagnosed with borderline low B12 in 2008. It was 220 pg/mL. The reference range was 211 - 911.
I initially tested positive for parietal cell antibodies. Intrinsic factor antibodies weren't tested. I was diagnosed with Pernicious Anemia.

My first cyanocobalamin injection was like a hallelujah moment. The morning following that injection, I felt more energy and even my eyesight had slightly improved.

I quickly discovered that once a month injections of cyanocobalamin weren't enough. They didn't keep symptoms of deficiency from reoccurring. But it was (and still is) the standard treatment. My doctor didn't think it was possible to need more than the standard treatment.

I sought out a hematologist. He ran both parietal cell and intrinsic factor antibody tests. Both cam back negative. He *undiagnosed* Pernicious Anemia but could not explain my deficiency or the fact that my symptoms would reoccur about three weeks after each monthly injection (sometimes sooner if I had pushed myself too far when I did have that extra boost of energy).

I spent years navigating the need for more than the standard treatment while trapped within the bureaucratic nightmare that is US medicine and also the limbo of no actual diagnosis for my deficiency. I used to drive to Canada and buy injectable B12. It's available over the counter there without need for a prescription, and an individual is legally allowed to bring up to 50 doses of over the counter medication into the US with them for personal use (although I've noticed in the intervening years that the US customs website no longer clearly states this fact).

I tried different doses and methods. I found subcutaneous to be easy to administer, but I needed far more B12 than when it is injected IM.

Eventually, through sheer luck, I was introduced to a naturopath who understood that the standard treatment isn't effective for everyone and I was finally able to get a prescription for weekly IM injections. I had long since learned to self-inject, so the cost was just for the B12 and syringes. Weirdly, my health insurance didn't have it on their formulary to cover (they assumed everyone had the injection done at a clinic or pharmacy). They eventually added it at my request (once they realized how much money it saved them rather than having me go to a clinic for every injection).

Versions of "bioidentical" B12 (methylcobalamin and adenosylcobalamin) were new to the marketplace and my naturopath wanted me to try methylcobalamin. So I did. It didn't work any better than cyanocobalamin and it was more expensive, so I switched back to the version that works best for me; cyanocobalamin.

To date, science has no idea why one version of the available forms of cobalamin works better for one person and not as well for another. They do know that all of the available forms have to travel through the exact same steps to become the active forms of B12 used by the body. (An article that mentions this.)

There are good reasons for certain people not to use the cyanocobalamin form: family history of Leber's Optic Disease, heavy smoking, or work in an industry that exposes them to cyanide. But none of the forms of B12 that are available should be vilified. They each work for someone. The challenge is that we all basically have to trial them all to figure out which works best for us.

Dosage and route are both in need of better research. A lot of effort seems to be going into research trying to prove that oral supplements work. But they don't work for everyone, and the science on why that is the case is insufficient (or non-existent).

I know there are a lot of enthusiasts who believe that methylcobalamin is the vastly superior form. It might be for them, but it might not be for you. It wasn't for me.

 

[Florida Guy]

So oral forms of b12 didn't help at all or gave side effects? Did you say subQ didn't work as well and you went to IM? I saw in another thread that liquid forms of b12 can be absorbed through the skin. I would sure try that before an IM.

Its good to get reports like this, its valuable information. Also follow ups on whether it keeps working over long periods, any side effects. Its good to know vitamins have more than one form and each form works differently. Vitamin E has many forms but in the grocery store you will find mostly just one form, alpha tocopherol.

 

[Galixie]

So oral forms of b12 didn't help at all or gave side effects? Did you say subQ didn't work as well and you went to IM? I saw in another thread that liquid forms of b12 can be absorbed through the skin. I would sure try that before an IM.

Its good to get reports like this, its valuable information. Also follow ups on whether it keeps working over long periods, any side effects. Its good to know vitamins have more than one form and each form works differently. Vitamin E has many forms but in the grocery store you will find mostly just one form, alpha tocopherol.

I did try sublingual forms. There was only one of those that I seemed to benefit from, and the effect was short-lived.

I tried SubQ while I was in my experimenting-with-treatments phase because those syringes are often easier to obtain. I found that my usual level of B12 separated out into smaller doses throughout the week didn't work as well as a single IM dose did. In order to have the same effect, I had to increase the amount of B12 I was taking. And that didn't make any sense to me, so I abandoned the SubQ route.

I was originally started on IM injections because that is the correct treatment for Pernicious Anemia, which is an autoimmune condition that attacks intrinsic factor. Intrinsic factor is needed for binding to B12 in the stomach.

Whether or not I actually have Pernicious Anemia is forever a question mark. Antibody tests for it are notoriously unreliable. It does seem that I have some type of malabsorption issue with B12, so injections are still the recommended treatment for me.

I've not had any negative side effects from B12. It has helped a number of symptoms that I experienced which included, of all things, wildly erratic menstrual cycles. Roughly 9 months after starting to receive monthly B12 injections, my periods started happening on a normal monthly cycle for the first time in my life. I was in my mid-thirties! (It makes me wonder just how long my body had been functionally deficient before I started getting shots.)

B12 affects every part of the body, so my vision improvement, regulated menses, and improvement with tinnitus and dizzy spells were all related to this deficiency. A lot of doctors have no idea how much damage a B12 deficiency can do to the body. In more extreme cases it can lead to paralysis, blindness, megaloblastic madness, and - if left untreated - death.

 

[Carl]

.....which is an autoimmune condition that attacks intrinsic factor. Intrinsic factor is needed for binding to B12 in the stomach.

I don't think that that is 100% true. For people, like me, who have extreme levels of digestive permeability intrinsic factor isn't even required in order to absorb B12. At one time I was taking around 20mg of MethylB12 a day and a B12 blood test showed B12 levels off the scale. My GP didn't question how my levels could be higher than normally possible because intrinsic factor is a limiting factor in B12 absorption and it will limit the amount that can be absorbed. It shouldn't be physically possible to absorb as much B12 as I had in my bloodstream.

I know that B12 in high doses somewhat repaired my nervous system. I suspect that I also needed something else to improve it further but never worked out what that missing nutrient was unfortunately.

 

[Galixie]

I don't think that that is 100% true. For people, like me, who have extreme levels of digestive permeability intrinsic factor isn't even required in order to absorb B12. At one time I was taking around 20mg of MethylB12 a day and a B12 blood test showed B12 levels off the scale. My GP didn't question how my levels could be higher than normally possible because intrinsic factor is a limiting factor in B12 absorption and it will limit the amount that can be absorbed. It shouldn't be physically possible to absorb as much B12 as I had in my bloodstream.

I know that B12 in high doses somewhat repaired my nervous system. I suspect that I also needed something else to improve it further but never worked out what that missing nutrient was unfortunately.

It sounds like you have a different situation going on with your extreme level of digestive permeability. My statement was referring to the normal process of acquiring B12 through meat and dairy products as noted by the third bullet point here:

• Vitamin B12 is a well known water soluble vitamin necessary for a number of metabolic reactions and prevention of medical complications, most commonly hematopoietic disorders and spinal cord related neuropathies.
• If vitamin B12 is ingested in its free (or nonprotein bound form), it will bind to a carrier protein known as R-binders or transcobalamin I that is secreted by both the salivary glands in the oropharynx and the gastric mucosal cells within the stomach.
• If the vitamin B12 is ingested in its protein bound form, it must first undergo a proteolytic cleavage in the stomach or duodenum where it will bind to an R-binder and enter into the duodenum for further cleavage.
• Upon entry into the second segment of the duodenum, the pancreas will secrete additional protease which will then degrade the R-binders holding onto the vitamin B12. It is at this point that vitamin B12 will bind to or complex with intrinsic factor for the remainder of its journey to the ileum of the small intestine for absorption.

 

[bad1080]

i just wanna add to this, so people can make an informed decision what they are putting in their body: cyanocobalamin (an inactive form of B12) contains cyanide, the body needs to remove the cyanide from the cobalamin in order to use it as either methyl- or adenosylcobalamin (an active form of B12). the cyanide then as a free radical is in search of a metal ion to bind to, as those aren't available in the body the nearest one to bind to is an iron molecule from a mitochondria, thus destroying it in the process.
this may contain inaccuracies so please do your own research, this is the best i could find out.

 

[Galixie]

i just wanna add to this, so people can make an informed decision what they are putting in their body: cyanocobalamin (an inactive form of B12) contains cyanide, the body needs to remove the cyanide from the cobalamin in order to use it as either methyl- or adenosylcobalamin (an active form of B12). the cyanide then as a free radical is in search of a metal ion to bind to, as those aren't available in the body the nearest one to bind to is an iron molecule from a mitochondria, thus destroying it in the process.
this may contain inaccuracies so please do your own research, this is the best i could find out.

Cyanocobalamin does contain a cyanide molecule. That is why anyone who has other exposure routes to cyanide, such as through heavy smoking or certain industrial work, are not advised to take this form.

Hydroxocobalamin does not contain a cyanide molecule. Hydroxocobalamin is it the antidote to cyanide poisoning. Cyanocobalamin and hydroxocobalamin are both more shelf-stable than methylcobalamin formulations. When exposed to light, methylcobalamin turns into hydroxocobalamin.

There have not been any reported cases of cyanocobalamin causing cyanide poisoning. This is probably due to the fact that the molecule is inert and also of such a low dose that it doesn't cause poisoning.

Again, I just want to say that none of the cobalamin versions are better or worse than another. I have found that the cheapest and most shelf-stable form suits me just fine. This does not negate other people finding better performance with one of the other versions. Better research is needed on why people respond so differently to the different versions.

Btw, all forms of cobalamin added to the body are inactive until they go through the same steps to transform into active B12. That includes methylcobalamin and adenosylcobalamin. Even though they are advertised as bio-identical, they still have to go through the exact same process as cyanocobalamin and hydroxocobalamin to become active and to be useful to the body.

 

[Busson]

Again, I just want to say that none of the cobalamin versions are better or worse than another. I have found that the cheapest and most shelf-stable form suits me just fine. This does not negate other people finding better performance with one of the other versions. Better research is needed on why people respond so differently to the different versions.

As I understand it, the various forms of vitamin B12 can be seen as equivalent but only if the conversion pathways are intact. There are several vitamin B12 genetic defects which may or may not be present.