Cyanocobalamin

[Syuri]

Hi, I have just been informed by my GP surgery that Cyanocobalamin injections, which I have 4 weekly, have been discontinued in England. I am allergic to hydroxycobalamin so cannot have that. I know Cyanocobalamin is still available in Europe but my GP can only use what is available to them in England. Does anyone know if there is another form of injectable b12 available to GPs here?

Thanks

[clivealive Forum Support]

I'm in the same boat Syuri after having cyano for 52 years and I too had an allergic reaction to hydroxo in the mid 1980s.

I think it's more that the NHS has stopped "recommending" its use

I have been told that Amazon/GE may be able to supply them but I have no idea how it works and at 83 years of age am scared to deal with foreign suppliers.

I wish you well

[Syuri in reply to clivealive]

Hi

Thank you for replying. My surgery has just rung me to say the GP I has contacted the local hospital haematologist to see what he suggests. There are 2 of us at this surgery with this allergy so I’m hoping there’s a bit of clout and they won’t try to say tablets are sufficient.

Best wishes to you.

[clivealive Forum Support in reply to Syuri]

I think the dropping of cyano was an NHS cost cutting exercise introduced a couple of years ago - however when I remonstrated with by GP he somehow overcame the pharmacist's protest and reinstated my normal prescription and it has been fine until this past couple of months when there has been a national shortage.

I've heard that there has bee an upsurge in injecting cyano at gymnasiums for "boosting" athletes and the like - so maybe that's where all the supplies have been going. Who knows?

I hope that the haematologist comes through for you.

Take care now.

[wedgewood in reply to Syuri]

If they do , you can easily get supplies from German online pharmacies , who stock Cynocobalamin ampoules made by excellent German pharmaceutical manufacturers.

That is if you are prepared to self-inject.

[Syuri in reply to wedgewood]

Thank you for this information. There must quite a few people who can’t take the hydroxycobalamin injection who will now be deprived of their treatment on the nhs.

[wedgewood in reply to Syuri]

It’s important for you to continue your injections without a break . If the NHS do not source Cynocobalamin injections for you, then you should consider Self injecting . It might be less intimidating to inject sub- cutaneously . because the needle can very very fine and short . Many members use sub-cut . Will send you some information.

[Syuri in reply to wedgewood]

Thanks again for your help and advice.

[wedgewood in reply to clivealive]

Dear clivealive. . The majority of us on this forum are obliged to get our supplies of B12 depot (Hydroxocobalamin) from German online Pharmacies, and they serve us very well .

You can get Cynocobalamin from those Pharmacies , without any worry at all . The same pharmacies supply amazon.de The same manufacturers who make Hydroxocobalamin also make Cynocobalamin. It’s simple to deal with German Amazon. You can get amazon.de in English . Look for Pascoe vitamin B12 injectopaz 1000mcg ( do NOT put DEPOT ) That is Cynocobalamin 1 mg x 1 ml ampoules (A box of 10 . ) I am 87 and am not scared to deal with German pharmaceutical products . They have a good reputation . Best wishes .

[B12again in reply to wedgewood]

Cyanacobalamin tends to be cheaper too. If you deal with versandapo.de there p&p is only €9.99 and are quick deliverers. A bit of trivia, cyanacobalamin was all that was available between 1952 to 1968. 🙂🙏

[wedgewood in reply to B12again]

Yes versandapo.de is the pharmacy that I usually deal with too . I only suggested amazon.de because it’s easily obtained in English , and clivealive has not till now , had to obtain his cynocobalamin from Germany . Amazon de is supplied with B12 ampoules by pharmacies . B12 ampoules can only be obtained through pharmacies in Germany . So they are not really obtained directly from Amazon itself . You can always see which pharmacy is supplying the ampoules .

That’s why sometimes you can’t get the ampoules from Amazon.de because the supplying pharmacy does not supply to U.K.

Thanks B12again and best wishes .

[Nackapan in reply to clivealive]

Don't be.German pharmacies ard fine.

Wedgwood will help you.

Sk sorry the NHS arnt accommodating you.

Really hope that changes

[clivealive Forum Support in reply to Nackapan]

Thanks and goodnight Nackapan

[Jillymo in reply to clivealive]

Sorry to hear of both yours and Syuri's plight. Things are now beginning to get difficult for many because of beauty parlours and health spar's taking up supplies - it seems those that dont need it can get it and those that need it for health cant!

I get mine from Germany. If I can do it i'm sure you will master it too. Wedgewood is excellent in informing how to obtain it and has helped me on many occasions.

I hope your health doesn't decline due to this situation. 🤞

[Sailinglady]

There is a genuine shortage of cyanocobalamin injections in the UK at present. Unusually, there is no anticipated resupply date given, and the only suggested alternative is hydroxocobalamin. It's possible that a pharmacy may be able to do a parallel import (purchase a version licensed in another country), but this isn't a listed solution to the problem at present.

[wedgewood in reply to Sailinglady]

Thanks for that information Sailinglady .

[Syuri in reply to Sailinglady]

Thanks for this.

[Regenallotment]

Hi Syuri and clivealive it might be worth writing / emailing your MP. Its part of their role to follow up constituent healthcare problems like this. I did it recently regarding supply of my preferred thyroid hormone replacement and had letters back from the ICB and Andrea Leadsom Health Minister within a few weeks, they had both contacted pharmacies and suppliers to confirm there were no supply issues and then confirmed back the NICE guidelines that state the patient should be kept on the medication that suits them etc etc. I'm not familiar with the NICE guidelines on B12 but surely when there is an allergy there has to be a logical alternative. 🌱

[wedgewood in reply to Regenallotment]

Thanks Regenallotment Every bit of information helps , because as B12 d and P.A. patients , we are “ up against it” in so many ways . The more information we have , the better . A bit more weaponry in our armoury . ( we need as much as possible )

[Syuri]

Hi Regenallotment, that sounds like good advice. If no solution comes back from the GP, I’ll do this. Thank you.

[scnuke]

I have read that shortages of injectables will continue to get worse and a lot has to do with so many resources and supplies being redirected to Ozempic and other of the diabetes/weight loss medications. Canada has always been a reliable supplier of cyano with no Rx needed. I don't know about shipping to UK, but don't imagine it would be an issue except for cost. I currently get my hydroxo from Germany and it is fine. I trust them before I would order from India or VietNam.

[Cinders70]

I’m on 4 weekly jabs of cyano and my surgery has problems sourcing any for my injection next Tuesday. I’ve been on a wild goose chase phoning round pharmacies on request of my surgery. I do supplement mine with self injecting hydroxo once a month and have just bought some cyano from versand.apo De, but don’t really want to go down the road of telling my surgery I self inject.

[Syuri]

Latest update from GP. Haematologist suggested oral B12 tablets! After explaining to GP why this wouldn’t help, my GP has said to source my own and they’ll inject it for me as I “wouldn’t be able to do it”. I’ve already ordered Cyanocobalamin B12 from Germany as you all recommended so it’s in transit. I know many of you self inject - do you prefer subcutaneous or IM and where?

Thanks again.