Does anyone know where I can get B12 injections to do myself? I think there may be somewhere in the UK but a very reliable and safe source abroad also. And any idea of the cost?
Please PM me if you can help. I am currently self medicating 10,000iu B12 methyl as my gp won't give me any at all despite neuro symptoms and B12 count of 239!
Cheers Barb
Have you read and shown them the BMJ article?
Hi,
Most people here seem very happy with getting hydroxocobalamin B12 from these 2 german sites, see:
You will find lots of info from others in these posts:
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
Kind regards,
Marre.
Bless you Marre, you always know the way 
Dear Barb 1949, Yes, most GPs have that attitude. They don't inform themselves about the latest research. Inthe meantime you deteriorate. I had to self-inject also. You can only get B12 injections on prescription in the UK. I get mine from Germany. Goldpharma sc is a good reliable source for Hydroxocobalamin which is what the NHS uses,. The last time I used them 1 injection cost about £1 including the P&P Takes about 10 days to come. I now use Methylcobalamin for my numb feet, which are much improved with that. You can get that at Arnika apotheke in Munich(very good and reliable. I know them from when I used to live there) Methyl is more expensive than Hydroxo.10x1mg ampoules cost 28.50 Euros plus P&P and 10x 5mg cost 39.80 Euros plus P&P Phone them on 0049 89 452 468 468. They have English speakers. You will need to E-mail them your order.I pay with Pay Pal which is convenient. You will get lots of info from your friends here at PAS! You will improve with more injections. They have changed my life! All the best to you!
Forgot to mention that you must take in good quantities of FOLATE(B9) when supplementing with B12 injections. Best of all in green leafy vegs, including peas. Otherwise take a B vitamin complex. This is IMPORTANT!
You do need to be careful with supplementing b9, if you have subacute combined degeneration (SCD) of the spinal cord, like I did. And I think it's a pretty common thing to get, if you're b12 deficient. This is how wikipedia explains it:
"If someone is deficient in vitamin B12 and folic acid, the vitamin B12 deficiency must be treated first to avoid precipitating subacute combined degeneration of the cord (giving folic acid first will turn the remaining B12 into methylcobalamin which will not be able to participate in fatty acid metabolism)."
en.wikipedia.org/wiki/Subac...
This article talks about SCD:
pharmacologyweekly.com/samp...
One thing it says is:
"As it relates to neuropathy, the most common complication related to vitamin B12 deficiency is a neuroanatomical abnormality commonly seen in the spinal cord."
So I think it's saying there's a good chance you have SCD, if you have neurological symptoms from b12 deficiency. The article described exactly what I was experiencing, so it confirmed to me my problem was b12. And if it also describes your symptoms, it might be worth showing it to your doctors, if they still need convincing.
I just reread the SCD article, and realized it's the one that describes SCD really well, but there were others that were better at describing the symptoms. If anyone's interested, a google search will bring up a lot more info.
The danger is when supplementing with B9/folate without also supplementing with B12. What happens then is that any haematological signs of macrocytic anaemia are corrected by the folate but as the B12 deficiency has not been treated the neurological damage caused by the B12 deficiency continues.
If B12 is already being supplemented then there should be no problem also supplementing with B9/folate. B12 and B9/folate work together and as a result the B9/folate level often falls when B12 supplementation is started. Many people find B12 treatment more effective with a decent level of B9/folate whether that be through supplementation or by eating a folate rich diet.
I did research the B9/folate angle already and since I already eat a folate rich diet decided just to go the B12 route for now.
(Poppet made a comment on b9 vs folic acid, saying that they aren't really the same thing. But I'm going to refer to just "b9" in this message, which may not be accurate. I'm going to research the difference a bit more later though, when I have some time.)
I know that one problem is supplementing with b9 can (temporarily? see the article I linked to below) correct megaloblastic anemia, which can mask the symptoms of b12 deficiency (people think they fixed the problem with b9, so don't notice they need b12). Is that what you mean? If it is, I don't think that's the only problem with supplementing b9.
Judging by what I read when I was researching this a while back, I don't think anyone really knows exactly what the problem with b9 (or is it just folic acid?) is. And this article, which gives some history on the question, seems to confirm that:
"Benefits and risks of folic acid to the nervous system"
jnnp.bmj.com/content/72/5/5...
Back when I was researching what I needed to do, I got the impression it was best to eat foods that naturally have b9, like beans. But I avoided supplementing b9 (including foods fortified with it, as opposed to naturally containing it), since it was unclear to me if it was safe. And if I remember correctly, the amount of b9 in a typical supplement could be a problem. I generally think it's best to get everything from food, if possible, since that's what our systems have adapted to, and are more able to regulate. The only problem is, I don't know of any foods that have enough natural b12 to correct a deficiency, except maybe liver, which can be pretty toxic these days.
problem with B12 deficiency caused by malabsorption isn't finding foods rich in B12 it would be eating enough of them.
In theory, as about 1% of B12 is absorbed passively (ie outside the ileum) eating 100x the normal amount of B12 should get you what you need but that doesn't necessarily resolve the problem because having developed a malabsorption problem means that the normal mechanism for recycling B12 (via the liver with reabsoprtion through the ileum) isn't going to work. Also, the problem may go deeper than just absorbing the B12 from food and may be elsewhere in the process, eg at cellular level.
Liver contains a lot of B12 (not surprising when you consider the role it plays in storing and recycling) but evidence seems to be that B12 in fish and dairy is actually metabolised much better.
Uncomfortably numb
Thanks loads, will copy these and take to the surgery with me.
Why are Wiki recommending that people supplement with FOLIC ACID at ALL. This is not Vitamin B9. It is a synthetic version and can cause problems in it's own right.
But you're right, folk should never use folate prior to using B12.
Because Wiki is not a medical site, it is written by lay people, just like us who may or may not know what they are talking about. I would far rather talk to people on here who know what is going on, since we are all sufferers.
Agreed, but - it's amazing how many medical professionals (and scientists) use the terms folate and folic acid interchangeably.
Another gripe I got (I've got a few) is how many medical professionals refer to cyanocobalamin as 'the' B12 ie that this is generic and the most natural form.
That all stems back to when it was first identified and, unbeknown to the scientists, had picked up the cyanide element in processing - they thought the cyanide was a natural part of the molecule. It was realised a few years later that this was in fact a processing factor but that the cyanide made it stable - and that's why the cyanide stayed in.
But many professionals, even today, refer to it as being 'the' b12.
I really hope that everyone who reads this site understands that anything they read here could be wrong. Even the "official" stuff is wrong a lot of times, no matter how authoritative it may sound.
You are quite right. 'Anything' could be wrong. Peer reviewed research can be wrong - anything.
I always found it very strange, although helpful, that UKNEQAS, who are the 'experts' on B12 - found it necessary to put out 'alerts' that neurological injury could appear in patients prior to B12 levels being low and no anaemia being present.
Didn't they know that this was a 'normal' course of progression?
You can go back through history and see this many, many, times.
The illness can present either:
As an anaemia alone
As neurological symptoms which progress to include an anaemia
As a neurological illness which never presents with anaemia.
It doesn't matter which presentation you get, the end result if untreated, is death.
So, yes, it was great that UKNEQAS were warning doctors - but if they are the experts, why didn't they know this in the first place?
Seems to me they all thought that the anaemia came first and the neuro followed it. Which is incorrect.
In the UK injectible B12 is a prescription only medication because anything injectible is prescription only, so you will not be able to source any injectible B12 in the UK with out a prescription.
You can source methylcobalamin in crystaline form but you will then need to obtain saline to mix it with from abroad ... Totally crazy but probably just one of the many examples of the law being an ass.
Within the EU there is a law that allows you to source a medication from another country if you are unable to source it within your own country.
In Germany, France and other EU countries B12 in injectible form is available over the counter. Most of the B12 used in this country is manufactured in Germany so just go with a reputable source - like those stated above.
It takes about 5 working days I think on average to arrive from Goldpharma - I use mycare.de and it's similar - though think I usually wait less
A phial of B12 costs just under 1€ which is probably around 66p - you can save by buying in bulk.
You can either inject intra-muscular or sub-cutaneous. For sub-cutaneous you can use insulin needles. If you are planning to do intra-muscular then please make sure that you get someone to show you how to do it properly, and you will need longer needles.
This company is in germany and very good this is their email address Manufaktur@arnika-apo.de
They come in ampules ( methylcobalamin ) either 1mg or 5mg /ml
Each box contains 10 ampules
(When using ampules flick the top of the ampule to " drop " the fluid down just before breaking ampule ) I personally get my syringes and needles from medisave.co.uk
I get my hydroxy from Amazon de, needles and syringes from Amazon uk
You can find B12 liquid To use under the tongue At any Pharmacy for about us$12,00. I have pernicius anemia ( B12 deficiency) and buy injections with prescription and hate then, só the luquid work as fine as the injections with out the stress.
I don't know if we can get this in the UK without a prescription. A I have neuro symptoms I am entitled to get it on script but the doctors are being rather obstructive about it so I decided to self medicate. I don't min self injecting, I have done it before with other meds.
Thanks for the thought x
It's only injectible B12 that requires a prescription in the UK and that's simply because we have a blanket law that says anything injectible must be prescription only. Tablets, sublinguals, mouth sprays, nasal sprays etc are all available over the counter or online.
That's good to know. The only problem I have with anything that stays in my mouth, especially under my tongue, is, I have an autoimmune disease called mucus membrane pemphigoid in which the collagen which holds the layers of the skin together breaks down and the layers part causing ulcers and blisters.
I tend to stay away from such things.
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