Everything is about stocks. THat doesn't make very interesting reading so sorry. Unfortunately it looks as though we've been a little too successful raising awareness because the price of methylcobalamin has shot up.
The favourite form for injection, we used to get 30ml bottles of methylcobalamin which allowed people to fill 30 syringes (1mg/ml) or 150 syringes (from the 5mg/ml) and gave you regular treatment over a fairly long period. Even someone injecting twice per week got more than 12 months' treatment from a 5mg/ml bottle.
Regular readers will know that we were unable to get stocks from USA from about November. We switched to www.arnika-apo.de when we couldn't get from USA, but the German supplier could only supply glass ampoules (which are hard to open and run the risk of smashing the whole ampoule) and are about 3x more expensive. Because of the extra cost we can't keep up with demand, even though the donations have increased by quite a lot.
Now a different company from USA has said they think they can supply us. We need to be able to buy for stock (ie not send a prescription off for each patient). I won't say who it is until the bottles come through, but it's looking hopeful (we placed an order for 50 of each concentration 2 weeks ago). They are nearly twice the price they were before, but it's still less than Arnika-apo per dose.
We are constantlyl forward-buying so we really hope we'll have stocks soon. IN the meantime, anyone is welcome to go to Arnkia-apo and buy for themselves, we just can't afford to use the money on that when we can get better value from USA.
Please remember, if you order twice then I'll delete one of them. If you order 5mg/ml then I will need confirmation, written into the note accompanying the order, that this has been requested by Dr Chandy. If you already get 5mg/ml then I already know so it's fine. Sorry to be so fierce but when i see people asking for one of each I have to think "this stuff is in really short supply, what should i do?
The cost of the German supplier stopped us being able to buy anything else, so we no longer have hydroxocobalamin to send. Sorry. Once the finances stabilise again, we hope we'll be able to hold this again as it suits some people.
We generally prefer methylcobalamin in combination with folic acid, or with folic acid and B6. We have backorders out there with two suppliers, but nothing is coming in, and when i call them, they say they can't get stocks to supply.
I don't know if you are having more luck - it's as though our awareness-raising has used up all the stocks in the world!
We can get these, however I've had no feedback on how effective they are. I take them myself (because we can get them) so when we can afford some stocks then I'll send them
We don't do any other preparation. There's no reason to think any of them are better than straighforward oral or injection. For example, if you want to absorb in the nose or the mouth before it gets to the gut, then sublingual lozenges dissolve in the mouth and are absorbed there, straight into the blood stream. Skin patches are very unlikely to work since B12 is water-soluble not fat soluble.
thank-you very much to everyone who donates. Can I reassure you that none of the trustees or volunteers or anyone else connected with B12d gets paid for the hours we put in, and if the bank account does run out of money, we often dip into our own pockets to top it up so we can buy whatever is available.
We did get a couple of big grants (Big Lottery - £9,500 and Durham County Community Foundation - £1500) both of which have been used to raise awareness by improving the web site and buying coffee morning and event materials. Again, all of the writing on the website is done by me for no cost, so it was the functionality we bought. These were restricted use grants, so they could not be spent on methylcobalamin B12 for injections or tablets. Your donations are all used for the methylcobalamin and adenosylcobalamin, because of the generousity of these grant bodies.
If anyone would like to thank them, we'd be happy to support you!
Any comments to the usual address. As before, I have to earn my living in my day job so I am not able to reply during the week and sometimes I can't even get onto B12d every weekend. Apologies. Dr CHandy (president of the support group and the most expert person in the world) is replying to emails so please do ask him (on the usual email)
The Scottish Parliament discusses Pernicious Anaemia and vitamin B12 deficiency on Wednesday 7 March 2012.
This video is over 1 hour long and represents real political change - we are at last on our way.
The definitive and original guide to B12 deficiency, Dr Chandy interviewed by Chris Jackson of UK BBC Inside Out Team broadcast 31 Oct 2008.
Dr Joseph Chandy explains symptoms and shows the restorative effect on one patient (other patients' families have asked that we edit out their stories unfortunately)
The local MP (Grahame Morris MP for Easington - who was a BMS (BioMedical Scientist) in the labs at Sunderland Royal Infirmary) interviews people with B12 deficiency to hear their story (August 27 2010). Here Jane describes the symptoms, and how she can't wait for her next B12 injection (in fact, she knows that she needs injections every 2 weeks because she's keeping a diary of the symptoms). We're restricted how often the GP can give injections, which is why we want to raise awareness.
Julia found her eyesight going as her eyes refused to focus on the same things as each other. She's been for all sorts of tests and treatment, but now that she's on B12 replacement therapy she's starting to see an improvement.
Susan gets very tired, which isn't much fun especially as she has so much to do. Here she tells her story.
Janette first appeared in the BBC InsideOut documentary in October 2006. Since then the NHS has forced her doctor to withdraw B12 replacement therapy on a number of occasions, and she tells of her struggles with having B12 and then having it taken away.
She has bravely agreed to be filmed without her usual wig, but her memory is playing up because it is so long since her last injection.
June describes her suffering when doctors didn't follow the standard protocol after any stomach or intestinal operation - to offer B12 replacement therapy
Dr Chandy was nominated for the North East Local Heroes award. The interviewer was at first surprised - people don't get awards for doing what they are paid to do - but she persisted.
Frankie tells of how she suffered, the tests she had to endure until doctors worked out what was wrong, and what a difference it has made.
Donna, like so many women, wants to live a normal life. Vitamin B12 could give her that chance.