A theory: I've had my first glitch... - Pernicious Anaemi...

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A theory

Sailinglady profile image
16 Replies

I've had my first glitch getting prescribed hydroxocobalamin, so ordered what I thought was hydroxocobalamin from Apohealth (but should know better than to shop at 3am when B12 deficient). It turned out to be cyanocobalamin.Injected cyanocobalamin for the first time yesterday (1st thoughts, it's more red and stings a lot less than hydroxocobalamin).

Yesterday I had my first energy buzz after injecting for a very long time and felt symptomatically much better than I have with hydroxocobalamin. My middle of the night reading (my sleep goes to poor when my B12 is wonky) involved understanding more about how the different forms of cobalamin are activated in the body (even the active forms have to be activated, ironically). Each different form undergoes a different conversion pathway. So, I wondered, what is involved in the conversion of hydroxocobalamin and could frequent injections cause me to become deficient in an essential part of this pathway? Hence, hydroxocobalamin appearing to become less useful more recently.

Does anyone know? Or do I need to do more reading?

Also, does anyone have any experience of injectioning regularly with cyanocobalamin? How seriously do I need to worry about cyanide poisoning (I've got 100 ampoules...)

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Sailinglady
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16 Replies
wedgewood profile image
wedgewood

No need to worry about cyanide poisoning ! The amount of cyanide in an ampoule of cynocobalamin is apparently less than in an apple pip , according to a scientist who used to post on this forum

Sailinglady profile image
Sailinglady in reply towedgewood

Thank you! I was slightly concerned, so good to know it's no worse than my daily apple pips...

Swift20 profile image
Swift20

I’ve been injecting cyano daily since Oct and prior to that it was eod. No risk but doesn’t work well for many. Today I went for Microneedling at my naturopath and we chatted about it. She explained that people with the MTHFR gene have trouble synthesizing cyano. Some people do well with it as I’ve seen on here and my dad does fine with his monthly cyano injection.

PaintLadie profile image
PaintLadie in reply toSwift20

True is that. I switched to Hydroxocobalamin and was later found to have one of the MTHFR mutations. I felt a larger improvement when I switched. Although when I was on Cyano I did have some improvement but it is hard to compare as I was only receiving one monthly dose and my dose of Hydroxo eventually increased from once monthly to daily. Although that was after much damage had already been done not receiving proper care.

Swift20 profile image
Swift20 in reply toPaintLadie

Interesting. How did you find out you have that gene? I will be seeing a geneticist next year. Assuming they could test for that?

PaintLadie profile image
PaintLadie in reply toSwift20

One of my old doctors tested me. She kept increasing my B12 dosage, but I kept going in with random body wide but debilitating type symptoms and she eventually tested for it. Example I would complain about bathroom issues or that I had pain in my liver and she would send me for tests, but all my tests were normal. My asthma got worse. I had skin problems, inflammatory issues, just random stuff. She was learning as she went. it is the A1298F i think I may have the F wrong but I'f had to dig the results up to verify.

Swift20 profile image
Swift20 in reply toPaintLadie

Wow. And what treatment helped this? I am on daily injections and am still having symptoms. It’s scary.

PaintLadie profile image
PaintLadie in reply toSwift20

So I have found that my prescribed Hydroxo from the US loses its potency before it expires or is just not got good quality but my symptoms always slowly return when I take it. The stuff from Germany works way better. I have to take a methyl-folate supplement orally with each shot. I also take a half ml SI in the morning and one before bed. I also have to take NAC and Amino Acids, magnesium, Vita D with K, and occasionally other supplements. It would seem I need more than the average person because I have a hard time absorbing and converting my nutrients.

Swift20 profile image
Swift20 in reply toPaintLadie

That is great that your doctor found that. I seem to take alot of the same supplements as you. I just recently found hydroxo at a reasonable price in my province so I’m trying a trial of that and then a trial of methyl to see which works better. Thanks so much for all your info. Glad to hear you are doing well.

MoKayD profile image
MoKayD in reply toSwift20

This is an interesting scientific article about the MTHRF gene discussion blog.23andme.com/articles/o...

Swift20 profile image
Swift20 in reply toMoKayD

Interesting.

Sailinglady profile image
Sailinglady

My query is the other way round. I had a good response to hydroxocobalamin, resulting in complete symptom resolution. Then I began weaning off and symptoms returned.I'd increased hydroxocobalamin again but with limited response.

Then, i had to change to cyanocobalamin, and have found a stronger response.

Hence wondering if there is a micronutrient that gets used up which is essential for activating hydroxocobalamin, and whether this is a different micronutrient to the one which is essential for activating cyanocobalamin.

MoKayD profile image
MoKayD

Cyanocobalamin is the only type of B12 prescribed in the US.

PaintLadie profile image
PaintLadie in reply toMoKayD

I have a hydroxocobalamin prescription in the US, but am unable to fill it due to shortages .

Rexz profile image
Rexz

All the literature on cyanocobalamin says it's safe and your body will rid itself of the cyanide as it's a miniscule amount.I was injecting with cyanocobalamin for my first 15 months. But my neuro symptoms were still hanging around. There is much literature on methylcobalamin as better for neuro damage healing. So I started methyl about 3 years ago and inject 2000 mcg every 4 to 6 days. Neuro healing seemed to progress better with methyl including balance issues. The other thing Is that your body needs/uses methyl groups for a lot of processes. Cyno must be cleaved (undergo a conversion process to become metabolically active) from the cobalamin molecule and a methyl group attached for the methionine synthase process thus using up a methyl group. In both cases cyno and methyl must be cleaved for a adeno group to be attached.

Basically methylcobalamin is already biologically active and also provides a methyl group donor for other essential biochemical reactions in the body.

Care in storing: cyanocobalamin is much more stable and less sensitive to temperature and light. It's also considerably less expensive.

Methylcobalamin is the most expensive form, less stable, more sensitive to temperature and light.

I don't mention Hydroxo here only because I don't use it nor have experience with it... But in my opinion it too is better than cyno.

Personally I use Methyl, I store it in light proof blackout baggies and keep in my refrigerated. When I travel I carry in a TSA approved cooler container that will keep cool for up to 36 hours.

OK probably I rambled some 😂

Hope this is helpful, Rexz

Sailinglady profile image
Sailinglady

Thanks Rexz. At least I can be confident I'm not actually poisoning myself!

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