Question about type of B12 to inject - Pernicious Anaemi...

Pernicious Anaemia Society

32,311 members23,527 posts

Question about type of B12 to inject

108181 profile image
6 Replies

I recently noticed that the B12 I am getting for injections is cyanacobalamin. Isn't it better to use methylcobalamin?

Written by
108181 profile image
108181
To view profiles and participate in discussions please or .
Read more about...
6 Replies
fbirder profile image
fbirder

It's very unlikely that methylcobalamin would be better than cyanocobalamin and, quite possibly, it may be worse. Cyanocobalamin is more stable than methylcobalamin and is converted into methylcobalamin in the cell.

ncbi.nlm.nih.gov/pubmed/258...

Gambit62 profile image
Gambit62Administrator

people respond differently to different types of cobalamin. some find methyl works best for them but many don't. I find methyl works well for me with some neuro symptoms but does nothing at all for neuropsychiatric problems.

Some find that methyl makes them feel a lot worse - high levels of anxiety aren't uncommon.

As fbirder says - methyl is much less stable than cyanocobalamin and hydroxocobalamin, both of which can be converted to both the forms used in cells - methyl and adenosyl.

Although most people can convert methyl to adenosyl there are a few documented cases of people who are unable to convert methyl to adenosyl.

ren41 profile image
ren41

Are you in the UK? My understanding is that methylcobalamin isn't available on the NHS, unless things have changed - it's a while since I asked. I was interested because I had read that methylcobalamin is good for repairing nerve damage.

Hydroxocobalamin seems to be most commonly prescribed in the uk; is there any reason why you're on cyanocobalamin? I am but only because I had an allergic reaction to hydroxocobalamin once. Cyano is apparently more expensive, only one supplier and it can be difficult to obtain - for a few years it appeared as though the drug company only did one production run a year. Due to this, I have a prescription for a year's supply at one time.

108181 profile image
108181

Thanks for the replies! I am in the US and don' t know why I was prescribed the cyanocobalamin instead of the others but I will ask for sure. I am stuck with a bad case of Subacute Combined Degeneration and to say that I need help with nerve repair is an understatement. I have been numb from the waist down with severe neck and head pain from the holes in my spinal cord from lack of B12 and P.A. I get B12 injections 3 times a week (husband does it) but even after almost a year I have little to no improvement but keep on doing the injections for fear it will get worse if I stop. Maybe if I switch to another kind of B12it will help.......? Kind of desperate.

Gambit62 profile image
Gambit62Administrator in reply to 108181

hydroxo tends not to be available in the US - usual treatment is with cyano in the US - you can get methyl but i'm not based in the US so not sure of the details and getting it covered by medi-care/insurance can be really difficult.

Suggest you look through posts and replies by Galixie who is based in the US and i believe is a member of one of the PAS groups out there.

108181 profile image
108181

Gambit, I understand you are in the US. I am as well, with p.a. under control with 3x weekly injections (probably too many but scared to cut back.) I also have an advanced case of Subacute Combined Degeneration due to not absorbing B12 in the small intestine -- for years. I am very numb and clumsy and have much discomfort and problems with balance, proprioception, severe cervical pain and head pain and numb legs, feet, knees, hands etc.

Someone else suggested I email you. Do you have any good resources for information here in the US?? I even got turned down by Mayo Clinic as they said they have nothing new for me that I haven't done. I was hoping you might have some resources.

Thanks, Susan in FL

Not what you're looking for?

You may also like...

Hi Again - b12 and Peripheral Neuropathy (PN) - its wasnt the Alcohol?

Hi again lovely folks, and a big thanks to those "constant" heroes in this forum; who stick around...

Gluten and B12 deficiency

Is there a link between B12 deficiency and gluten sensitivity? My neuropathy has massively improved...

AUGH!

I have been battling for about 10 years with numerous health issues and was finally diagnosed about...

Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance

Not sure if this is any good but as I was hating my doctors it occurred to me how much I need them....

How does it feel to have too much B12?

I have not SI for 5 weeks now due to anxiety/panic attacks arising after my last couple of...