Galixie
Senior Member
- Messages
- 234
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.
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.