I Need Help Finding Methylcobolamin - Pernicious Anaemi...

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I Need Help Finding Methylcobolamin

Johnathan profile image
8 Replies

My problem must be familiar to many on this site. I had extreme liver failure in 1984 and was in a coma for 6 weeks. Since then my liver does not appear to be able to store B12 properly. My blood levels with 1ml of methylcobolamin injection every three months are barely above the minimum. Oral does not work for me. In the third months my symptoms become severe. I am buying in hydroxocobolamin and self-injecting to survive. My GP will not agree to giving me more B12 even on a private prescription and does not seem to care about (or believe) the symptoms. I am desperate. Can anyone advise how to get out of this impasse. The NHS has failed me (they caused the liver failure in the first place) and I need to take my health into my own hands despite their obstruction. I am looking for injectable Methylcobolamin but would prefer not to buy it off the Web but will do so if that is the only route to avoid nerve damage. Pleeease Help!

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Johnathan
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8 Replies
fbirder profile image
fbirder

Does the hydroxocobalamin not work?

For the vast majority of the population hydroxocobalamin easily converted to the two active forms of B12 (yes, there are two). It is as good as, some may say better than, methylcobalamin.

It has many advantages - it tends to be cheaper, it's much easier to obtain and it doesn't degrade as easily as methylcobalamin. There's also some evidence to suggest that it stays in the body longer than methylcobalamin.

It is illegal to sell injectable medicines in the UK without a prescription. Which is why many people buy their stuff from Europe. But if you don't want to buy over the internet (even though German chemists have a good reputation - versandapo.de/Customer-serv... ) then you'll probably have to go there in person. A nice trip to Munich, with a visit to Arnika Apotheke - arnika-apo.de/herkomerplatz... - would make for a pleasant trip.

Gambit62 profile image
Gambit62Administrator

as per fbirder on solutions to not buying over the web.

A trip to France would be another alternative as it is available there without prescription as well.

If you have neurological symptoms you might be able to persuade your GP to follow the NICE and BCSH guidelines which would be maintenance every 8 weeks (2 months) though sounds as if they aren't willing to accept that you have symptoms which means that wouldn't work.

B12d.org used to supply methyl but have had problems with their sources and aren't able to do so at the moment but you could contact them and see if they could let you know when it is available again. If you can afford to pay then please do make sure that you help them cover their costs by making a donation.

b12d.org/

you will probably need to join (no charge) to access the area where you request B12 though you can certainly contact Dr Chandy without being a member - scroll down the home page to find the email.

wedgewood profile image
wedgewood

You can get dried methylcobalamin from Oxford Biosciences . They will tell you where to get the saline from in order to reconstitute it . Total cost for 20 ml about £35.00

deniseinmilden profile image
deniseinmilden

Hello!

My liver failure, without a known cause, was in 1990 but I had B12d type symptoms before that too along with other autoimmune problems.

Like you, it seems that my liver lost its ability to store B12.

By the time I got some NHS treatment last year I had too much damage from years of probable deficiency for my body to cope and I now self inject daily with hydroxocobalamin bought from versandapo.de.

Are you sure methylcobalamin would work better? Could you maybe try more hydroxocobalamin and methylfolate instead? I use "Solgar Folate 800 mcg as Metfolin" tablets from Amazon as the combination is similar in cost or cheaper and much less hassle than using methylcobalamin and folic acid.

I have had good service and top quality ampoules from versandapo.de which can automatically translate everything for you into English. I set up a PayPal account which was easy and this works out the exchange rates and taxes for you so there is just one payment. My ampoules are delivered by my postman within a few days.

If you take extra B12, don't forget the cofactors needed to metabolise it: I suggest a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium, maybe iron too.

Good luck!

Daisy77 profile image
Daisy77

I get mine from Amazon.de who now have a website in English. They cost about £25 for 20 1mg hydroxo ampules and that includes postage. I also supplement with Garden of Life raw B complex which I discovered on a trip to the USA but find they are available on Amazon . No nasty fillers or anything, just vegetables! I stopped taking them for a week prior to diagnosis, and symptoms returned with a vengeance. They also do Vitamin d and a multi I believe.

Johnathan profile image
Johnathan in reply toDaisy77

I have been to Amazon.de but cannot find injectable Methycobolamin. Can you post a link?

Thx

Daisy77 profile image
Daisy77 in reply toJohnathan

When I ordered I could swear I ordered methylcobalamin but was sent hydroxy. When I looked again it had been changed to hydroxy. Thought I was going nuts. But I have read that there is a shortage of methyl. I am off to France next week for a holiday so I will check with the pharmacies there.

fbirder profile image
fbirder in reply toDaisy77

I've only ever seen methylcobalamin available on one european site.

Methylcobalamin doesn't seem to be as popular in the rest of Europe as it is in the English-speaking world. I'll guess that they don't get as heavily exposed to the methyl evangelists.

They probably are happy with the cheaper, more stable and equally effective hydroxocobalamin.

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