Cyano or methyl: I have had low b12 for... - Pernicious Anaemi...

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Cyano or methyl

Xena2202 profile image
8 Replies

I have had low b12 for a long time, don’t react to oral supplements, so I started self injections recently (haven’t been diagnosed with pa, but I think I do have it, tests are underway). I find it very easy to administer IM in the deltoid. I started out using cyanocobalamin and it felt like that really helped at first, I was doing one shot a day for a week of 1000mcg. Eventually though, even though I was continuing the shots, my nuerological and fatigue symptoms started to creep back up and got as bad as they were in the first place, not pleasant. Upon this happening I decided to start trying methylcobalamin instead, as I had some pure powder and some saline so I prepared a shot for myself today. The relief this time was almost immediate and way better than with the cyano. I am wondering if anyone else has had this experience, and why it could be that the cyano didn’t work well for me. It’s interesting bc from what I’ve read cyano is most commonly prescribed for pa as well, and if I hadn’t figured this out for myself I might have been wasting time using that. I’m methyl all the way from now on!

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Xena2202
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Seth12345 profile image
Seth12345

Cyabcobalamin is prescribed for injections in North America most commonly. In Europe they use hydroxocobalamine typically.

My understanding is that methylb12 is not as stable in injectable form and is usually specially compounded for this reason.

There are some threads on here about the different forms as well as online.

I started with cyanocobalamin after my loading dose and the symptoms came back harder as well as new symptoms such as fatigue. At the time I wasn't sure if it was because of the form of B12 I was injecting or because this was part of the healing process as for many symptoms get worse before they get better (also documented on this site in numerous threads). I doubt I'll ever know the answer to this in my case.

I'm now using hydroxocobalamine and I am sticking with it. I'm using one in a "depot" form purchased from Bodfeld in Germany. I tried a hydroxocobalamine that I had specially compounded for me at a local pharmacy that was suspended in saline water and although it helped me I needed more frequent injections as I seemed to process it through my system very quickly. Hence the reason I'm using the "depot" form now.

This is not a scientific study by any means, just my personal experience .

Xena2202 profile image
Xena2202 in reply toSeth12345

That’s good to hear, I have heard hydroxy is also superior to cyano form. I haven’t seen any hydroxy anywhere here in the states, interestingly. Luckily the methyl b12 is available without prescription bc I buy the pure powder and mix it in saline. I had to improvise because you have to get a prescription to get injectable b12 here and even then it’s really expensive. I think I had the same experience as you with the cyano though, it stopped working and I just went with my gut that it wasn’t just a slump in the recovery.

wedgewood profile image
wedgewood in reply toXena2202

The safest way to administer any B12 injection , is to use single- use ampoules . There is always a risk of contamination if you start mixing powders and saline, and using vials which contain several doses of B12 . Really not 100% safe in a domestic situation . I would only ever use single use ampoules . I an in the U.K. , ( also prescription -only B12 ampoules) and it’s easy for me to obtain single-use ampoules of Cynocobalamin and Hydroxocobalamin from German online pharmacies . ( no prescription required In Germany ) I only know of one German online pharmacy that will ship to USA mycare.de but during the pandemic , they will only ship to German addresses . Other possibilities for you —-

golpharma.com supply Cynocobalamin and Hydroxocobalamin ampoules made in Germany , and other countries .

An Australian Company vitaminb12online.com ship kits of Cynocobalamin, Hydroxocobalamin and Methylcobalamin with single use ampoules ( I.M and sub-cut) and single use ampoules to anywhere on the globe.

vitaminquick.com in Florida supply Methylcobalamin single use ampoules , but are closed during the pandemic.

buy-otc.com in Canada supply Cynocobalamin in 10 ml vials , but not single use ampoules.

Bear in mind that Methylcobalamin is very unstable and needs to be kept refrigerated. I tried it and found it no better than Hydroxocobalamin, which I have used for 4 years , with success .

Hope that this help you .Best wishes .

Xena2202 profile image
Xena2202 in reply towedgewood

Thank you for the info. I may try the hydroxy ampoules at some point. Do you ever worry about glass getting into the solution when you break these? That’s why I don’t like using ampoules.

wedgewood profile image
wedgewood in reply toXena2202

I think that you run a greater risk by mixing your own solution and keeping several doses in a vial , even if you are very careful . There are so many opportunities for contamination, which you don’t have with single use ampoules.

I’ve never seen a doctor / nurse , when using an ampoule , use anything other than the common injection needle. But if the thought of glass particles getting into the B12 bothers you , get the blunt filter needles for extracting the B12 from the ampoule . They are quite a bit more expensive than the run of the mill ones . You will then need a 25G x 1 inch needle for injecting I.M. Into your thigh , or a 30G x 1/2 inch for sub-cut . ( into tummy or thigh )

wedgewood profile image
wedgewood in reply towedgewood

For the USA - allegromedical.com have filter needles that you need .

fbirder profile image
fbirder

You are taking a big risk by making it up yourself.

As for methylcobalamin vs other sorts - ncbi.nlm.nih.gov/pmc/articl...

Sweetcheeks832 profile image
Sweetcheeks832

I do 2 months methyl and 1 month hydroxo form to clean any cyanide traces from my system. I also take folic acid with every b12 as they work together.

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