Pernicious Anaemia Society

Is methylcobalamin on prescription in uk?

Hi

Could anyone tell me if methylcobalamin is available on prescription in the U.K.? I'm currently taking hydroxo on prescription but read that methyl is better for neurological degeneration and also I get bad palpitations after every injection for a few days and wondered about trying a different form. My GP has so far been very good and is happy for me to try but he didn't think it was licensed here. Any advice gratefully received .

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No it is not available on prescription. Nor is it readily available from continental sources like Germany.

Hydroxocobalamin is just as good as methylcobalamin, if not better. It is cheaper, more stable and easier to source. All forms of cobalamin, when they enter the cell have their top ligand (methyl, hydroxo, cyano, adenosyl) removed and the remaining bit (cob(II)amin) then goes to the parts of the cell where its needed and converted to the required co-enzyme form (methyl or adenosyl).

ncbi.nlm.nih.gov/pmc/articl...

veganhealth.org/b12/noncyan...

You could try getting cyanocobalamin from Germany if you want to try a different flavour.

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Methyl-B12 isn't available on prescription in the UK, simply because no -one has applied for the relevant license. However, no-one is likely to do this because the licensing process is so expensive and so lengthy that only it's only financially viable for medicines under patent.

If you are ever able to travel to Germany, you can buy methyl over the counter from Arnika Apotheke, which manufactures different forms of cobalamin and also has several retail premises in Germany.

arnika-apo.de/manufaktur/wi...

Arnika used to sell methyl ampoules direct to the UK, but it recently licensed another company to sell it here. You will have to email them for prices.

intravita.uk

Another option is to approach a UK charity for assistance, B12d.org. They can supply you with methyl, when they have it available. They usually ask for a donation towards their costs, but it's important to note that they do not link donations with distribution.

FBirder is correct in his description of what happens to the different cobalamins after they enter the cell. However, this does not explain why people may respond differently to different forms. (For example, my own visual and neurological problems only really improve with methylcobalamin injections.) We don't yet know enough about this aspect of the body's use of cobalamins, and I wish we did!

Edit: I'm referring throughout to injectable methyl.

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However, no-one is likely to do this because the licensing process is so expensive and so lengthy that only it's only financially viable for medicines under patent.

Which doesn't really explain how various medicines got licensed. Things like ascorbic acid, which was first synthesized in 1934 - 34 years before drug licensing became law in the UK. Or aspirin - synthesized in 1898. There are loads of licensed medicines that had never been patented or, by 1968 had expired patents.

The reason methylcobalamin hasn't been licensed in the UK is because there is a better alternative - more stable and cheaper.

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The reason why much older drugs don't need a licence is known as 'grandfathering'.

You know as well as I do that people may respond differently to different forms of B12. I certainly do; so do others on the forum.

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So why can't methylcobalamin also fall under the 'grandfathering' way of getting a license.

Yes, I know that methylcobalamin affects me differently. But where is the evidence for it being better than hydroxocobalamin? Real, non-anecdotal, evidence. Evidence that might persuade the licensing authorities to licence a less stable, more expensive, form of a medicine that already exists.

That's what costs the money. The licensing itself isn't very expensive at all. What costs a lot of money is the testing to prove that the thing you want to license is better (cheaper, safer, more effective) than a pre-existing alternative. And nobody is going to pay for such studies with little hope of getting the license.

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Was methylcobalamin available in injectable form before licensing commenced?

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A single subcutaneous injection of 4.0 to 6.5 µg methylcobalamin was effective in 6

patients with pernicious anaemia

Lancet. 1965 Dec 4;2(7423):1185-6. Methylcobalamin in pernicious anaemia. Stahlberg K.

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FB Maybe this is why :

blog.cytoplan.co.uk/alzheim...

"However, despite the apparent success of this research, the next step in testing the effectiveness of this program on a much wider scale may be substantially hindered by the fact that it is not pharmaceutical led research with the absence of drugs as part of the program.

The thought provoking website ‘HealthInsightUK’ reviewed the study and their article (link to the full story further below) is worth a read. They commented on the study and the absence of drugs in the trial"

"Everyone agrees that what is needed now is a large scale, randomised, blinded trial to confirm the benefits. However the shocking truth is that it’s perfectly possible that such a trial will never happen. The big randomised trial showing dramatic benefit from high dose B vitamins has never been followed up.

The problem is that the compounds used weren’t drugs but diet, supplements, herbs and exercise – so little in the way of profit. And to complicate things further different patients got different combinations depending on their problems."

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Julie74 you could try cyanocobamalin (aka "Cytamen") 1000mcg which I've been on for 45 years. Only problem is that is needs to be injected four weekly.

I had an adverse reaction to hydroxo when it was introduced in the 1980s

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Thanks Clive I'm on weekly injections at the moment and other than palpitations I'm doing fine. If I go longer between injections I literally can't stay awake! I was just hopeful that there might be something that would be effective without the palpitations side effect and had read articles saying methyl was better. I would be happy to give anything a go ! Many thanks and merry Christmas

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The palpitations might be because when you get an injection you are getting the B12 your body needs but not enough of the "cofactors" required to make it work and so you are running short. The most likely, a shortage of which also cause palpitations, are potassium and magnesium.

I suggest you Google these and see what you think. Ideally you will get them from your diet but I can't get enough that way so also supplement with potassium chloride from LoSalt and magnesium chloride flakes but you can also readily get magnesium sulphate or Epsom Salts.

I also need a broad spectrum multivitamin and mineral supplement plus extra folate and iron.

For more information you could look up my profile by double clicking on my name and see my post "My Experiences".

My heart rhythm used to be all over the place but is almost always fine now.

You could try 5 mg methylcobalamin sublinguals from Amazon in addition to your jabs and see if they help.

I hope you get it sorted soon!

Merry Christmas!

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Thank you Denise

I have lo salt and use for cooking when I remember but not often to be honest. I also eat a banana every day but it hasn't made a difference. How much lo salt do you take? I will look at the magnesium flakes . I do take a multivitamin and bit b complex.

I'm having an ecg next week as my Gp wants to make sure nothing else going on but I know I only get it post injection.

Thanks for you advice

Best wishes and merry Christmas

Julie

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I have a potassium rich diet and then have up to a teaspoon of LoSalt a day. I used to need more than this. I'm not suggesting that you take anywhere near that much as it should have killed me but as I would have died anyway I had nothing to lose and so just went with my symptoms!!

I need about a third of a teaspoon of the magnesium flakes and find they have less of a laxative effect than the Epsom Salts.

Once you have researched it, if you think it might help you could try a little and see how you get on.

You can also absorb magnesium through your skin so you can bath in it and spray a solution of it on your body.

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Thank you for the speedy reply. I have just ordered the magnesium. Yesterday I started getting palpitations about 4 hrs after injecting. I just felt the urge to take some lo salt so had about 1/2 teaspoon . It was pretty disgusting but I haven't had anymore palpitations so far which is unusual for me !

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X

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I could inject a bucket of hydroxo it does nothing for me as for some reason I cannot convert it to the useable form methylcobalamin. I have injected every other day with methyl since 2012 with a prescription from Dr Riar who sadly died a couple of years ago. He was a member of the society of Ecological Doctors bsem.org.uk who will prescribe methylcobalamin

I now get my methylcobalamin direct from intravita.uk

It is an expensive initial outlay but I divide each ampule into 5 doses and keep the preloaded syringes in the fridge as recommended by Dr Chandy. That way 10 ampules lasts for a long time. I also have a friend who is an anaesthetist in Germany and we are exploring getting her to send it over although the price won't work out to be much cheaper.

Below is an article by Dr Myhill who is also an Ecological Doctor and prescribes methylcobalamin.

drmyhill.co.uk/wiki/CFS_-_T...

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The last time I asked Dr M for a prescription renewal for methylcobalamin she was only able to give me 5g/1ml hydroxocobalamin. She seems to be having as much trouble sourcing it as the B12d charity and individual members of the forum.

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Crikey that's terrifying so many of us can't use hydroxo and will become ill again if we can't get methylcobalamin. Have you tried Intravita?

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Yes, thanks, they sent me a price list a while ago. B12d can occasionally send out ampoules of methyl, but the large multi-dose vials are no longer available, sadly.

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