Where can I get Methyl?

[Marthathecat]

My doctor is no longer able to obtain Methylcobalamin. I was totally symptom free for 4.5 years injecting Methyl every other day, but now with only being able to get hydroxo my symptoms are returning. I don't want to be ill again I will have no quality of life. Does anyone know a doctor who can get methyl? Thank you

[Hillwoman]

I wonder if you have the same doctor I have? She can only prescribe a 30 ml vial of 5mg/ml hydroxo now, but her secretary didn't really explain why. Methyl isn't licensed for use within the NHS, but private doctors are still able to use it, as far as I know.

The B12d.org charity did have a supply of methyl from Texas, but it now requires reformulation, which may take some time. Another source is a UK company called Intravita, which I've never used. A reliable source is a German pharmacy:

arnika-apo.de

It's a good while since I ordered from Arnika, so I can't remember the process, but I think it was straightforward and the staff speak English. I will need to contact them again soon.

[Marthathecat in reply to Hillwoman]

Hi Hillwoman and Fbirder, thank you for getting back to me. I successfully managed to order from intravita this afternoon. Wow it's expensive though. I ordered 5mg strength ampules and will eek each ampule out by filling several syringes with a small amount and store them in the fridge. I was told by B12d that it's not the amount you inject but the regularity of shots. Gone are the days of dear Dr Riar RIP he used to send me away with three full bottles of 5mg/5ml which I was able to bathe every starving cell of my body with. Now methylcobalamin is more precious than gold! Arnika told me if I can get to Germany I can walk in to their pharmacy and buy as much as I need over the counter. It is horrible the way people with PA are being kept ill in the UK, may change come soon for all of us.

[Hillwoman in reply to Marthathecat]

How much were you charged, Marthathecat ? Do I take it that Arnika will only sell over the counter now?

[Marthathecat in reply to Hillwoman]

£40 for 10 x5mg ampules ouch! which is why I'm going to eek it out in small doses. I've come this far after 20 years of being kept ill so no way am I going to let those bastards Big Pharma make me ill again. Arnika only sell through their supplier in UK but if you can get to Germany you can buy as much as you like.

[Hillwoman in reply to Marthathecat]

Blimey!

I have to get well, then I can travel to Germany. Catch 22...

[fbirder]

I'm going to guess that you're in the UK and my answer will reflect that.

It does seem that methylcobalamin is getting harder to find. Possibly because people in the EU have decided that the disadvantages (expensive and relatively unstable) outweigh any perceived advantages.

For a while it was possible to order from Arnika Apothek in Germany. Then they decided to only supply the UK via one particular company. However, somebody recently said that they'd successful ordered from Arnika, so ir may be worth trying them.

Otherwise you can get it from B12d.org in an exchange for a donation. However, they can no longer get single-dose ampoules and their last batch had a manufacturing error that meant it was exceedingly painful (doesn't exactly fill one with confidence).

The majority of the population should be able to easily convert hydroxocobalamin to the active forms. It may be that you are in the small minority that can't. If so, taking methylfolate as an oral supplement (800 ug a day) should fix the problem.

[Hillwoman in reply to fbirder]

You are incorrect about B12d.org. They have stated in their newsletters (available from the website, and as a subscriber) that the despatch of methyl to individuals who need it is not linked to donations by those individuals.

So many people need methyl or hydroxo who cannot afford it that the charity fell into severe financial difficulties last year. The trustees still have to put in their own money to keep the supply going.

B12d's methyl comes from a well-known compounding pharmacy in Texas. One forum member, ndodge , a Texan herself, contacted the pharmacy recently on our behalf and received a reassuring response.

I would also add, Marthathecat , that many people on this forum don't do well on hydroxo alone. In my own case, I've tried adding increasing amounts of methylfolate to assist conversion to methylcobalamin, but it doesn't really seem to work. For me, being able to inject high dose methyl means being able to see well enough to drive, continue with my art practice, read, and also have enough energy to do those things, albeit at a very modest level of activity.

[fbirder in reply to Hillwoman]

OK, I should have been clearer -

you can get it from B12d.org in exchange for a donation from £0.00 upwards.

Have you tried the forgotten active form - adenosylcobalamin? Because some people believe that it is not possible for the body to convert methylcobalamin to adenosylcobalamin and that supplementation with methylcobalamin alone is not a good idea.

It is still the case that the pharmacy made a mistake in the preparation of a batch of methylcobalamin. I don't know how many strikes some people might allow, but I wouldn't use them.