WARNING THIS POST CONTAINS DETAILS OF BEHAVIOUR BY DOCTOR THAT SOME MAY FIND UPSETTING.
After nearly 13 months I got my appointment with the haematologist. He seemed like a nice guy, agreeing that 'normal' B12 blood levels do not necessarily mean that I don't need injections. He asked me to stop my B12 tablets for a week, and then get some blood drawn for a raft of tests. He said that he would then consult a biochemist and look at putting me on injections.
But before I even got to give the blood, he had written to my GP saying that I didn't need injections, and he hoped that would help the GP "manage the patient". I was going to print the letter that I wrote to him but it may not get past the censors.
So, it looks like apart from having to buy my thyroid meds from Thailand, I am going to have to buy what I need to self inject B12 (all while my income is £30/week) I have searched HU, but of course that sort of information can only be sent via private messaging, and what information there is, is so much that it is hard to find the needle in the haystack (if self-injecters will forgive the pun).
Apart from knowing where to buy the B12, I need to know about syringes, needles, and anything else that I will need. And obviously sources for same and B12 at the 'best; prices. So if somebody could PM me with that information, I will be most grateful.
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they have a whole section on stupid letters and how to complain about your treatment which I must say is pretty appaling - the young specialist obviously needs to go back to school to learn some basic manners, let alone his knowledge of managing B12 deficiency. Disgusting.
There are actually a number of posts on here about what needles to use, and how to inject etc.
The most commonly used sources of B12 for UK sufferers are mycare.de ... but it might be worth getting in contact with B12d.org. They do supply some methyl B12 to people but I think you may still need to source your own needles and getting hold of saline to mix may be a challenge - think it comes as a powder but don't use it so couldn't be sure - there will be others who have so they can clarify. lots, including myself use the following for needles
Basically 2 options - use insulin if doing sub-cutaneous (under skin) or longer needles - sorry don't know the size but sure if you use the search box at the top and type in something like 'intra-muscular needles' something should come up. If you are going for intra-muscular then you really need to get someone to show you how to do them.
Under EU law you are allowed to import medications from outside the UK that you need but are unable to obtain in the UK. The rules in the UK mean that anything in an injectable form requires a prescription which is why it can't be sourced in an injectable form in the UK. You can get B12 in any other form in the UK - just the injectable that is problematic.
Thank you for sharing your situation with us. I too am just about to go into the same situation you are finding yourself in at present. For over 10 years now I have noticed my decent into the darkness of this stupid problem. For such an inexpensive injection they sure are making a pigs ear of the whole situation.
I had a positive Parietal cell autoantibodies blood test with high MCH and MCV. I had a private Active B12 which showed I was just above 200. I then had some blood tests after that which they are saying are normal but I know I need treatment. I asked for the trial therapeutic injections but they are refusing them.
I have contacted and become a member of the Pernicious Anemia Society where you can get lots of information. I too am having to source my own medication to inject. Have you heard of Eligen B12 tablets apparently America are leading the way with this. I think if you google this it will come up with that information.
I have also found apotheekverschaeve.be who are selling them for 9.22 euros 3 x 10mg/2ml.
I seem to be following in your footsteps as today I got a letter from the Haematology department saying that all my blood tests are normal and sometimes you can get a false positive for Parietal Cell Autoantibodies which I don't think is true in my case. I have been going to the dietetics for ages and am on gluten & wheat free, dairy and only eating fish at the moment. And lots of other symptoms. All in the list of diagnosis on Pernicious Anemia Society website. Are you aware that you can also go onto B12d and donate to get the injections. £28 for six months.
Can you help? I have gone onto the goldpharma.com website and keyed in Methylcobalamin but it will not allow me to key much more. I cannot find what I'm looking for which is 2ml ampules B12 Hervet I believe.
This is not easy by any means. I have contacted B12d.com and asked them where they source the Methylcolbalamin from? They have not come back to me to let me know how this works. How I get the Methylcolbalamin. I have left my phone number in the hope they will phone me.
I think they expect a donation first but I don't know what they are sending.
This is all up in the air for my liking.
There should be a central point where we can get all the information about loading dose and maintenance. How much to use all the questions answered to go ahead and self administer.
So where can we get Methylcolbalamin from to inject? Is it only from b12d.org. I don't know where they source the Methylcolbalamin from? Do they make it themselves.
Hi there, b12d.org do indeed supply methyl, already mixed, so no faffing about trying to source saline etc. However, they are really struggling for funds and last time i was in touch with them, they were also struggling for staff, and that might account for why you cant get an answer from them quickly. I emailed them myself and it took the 10 days or so to answer. I would say that if you get your methyl from them then please pay the full cost if you can afford it, they desperately need to reduce their costs as much as possible in order to treat as many as possible. Having said that, I have looked at their full price up against other suppliers and even the full cost is very competitive. They just ask for you to donate what you can afford. People on benefits can very often afford nothing, they don't get turned away.
Where do we get the cost on the website? I have asked them to confirm a price I found on the discussion site. £28 for six month supply. But there is no detail.
The Eligen tablets look very interesting, and I hope that they can extend the system to insulin too, as I know two type 1 diabetics who have to inject.
I can't get the apotheekverschaeve.be to show me anything more than a blank page. Is it a Facebook page? That would explain it as I don't have a Facebook account.
apotheekverschaeve.be - search for hydroxocobal acet amp 3x10mg/2ml. I have just tried this and it worked for me. Once on the website you have to right click your mouse and translate to English.
Failing that you can contact them by e-mail at info@apotheekverschaeve.be. I have had a reply to that e-mail and you can log onto their website from there.
I am so sorry, I'm now glad you contacted me about websites. The website I said I had found apotheekverschaeve.be are selling hydroxocolbal. Now I know why I kept calling Methylcolbalamine hydroxocolbal. I was in the middle of trying to understand how to get the self inject B12 that I completely overlooked this. Sorry. I don't know what the difference is I will have to look it up.
Haha - tell me about it. It's like trying to take a degree course while you are half asleep.
I can't find a supplier for Eligen so for now I'll be going for the injections. Mike at B-Amazing was very helpful in giving me advice, and sells B12 on Ebay.
My only hesitation is that I am about to try a new brand of NDT, so shouldn't start the B12 at the same time or I won't know what is making the difference (if any).
Its sounds like Eligen is from America and they are trying to get it up and running. I don't think its ready for use yet. Just thought its worth a mention.
It definitely is like taking a degree course half asleep. I don't know how they have the nerve to call themselves medical professionals. In a civilised society its criminal to leave people walking around like this.
You say that most uk users are going to mycare.de what product are they purchasing for use? There are so many its confusing. Also you talk about use insulin if doing sub-cutaneous (under skin) which do you mean?
prcasig B12 - generally hydroxocobalamin ampoules - and you can use insulin needles to inject sub-cutaneous (under the skin) rather than intra-muscular which is how sots given by doctors are administered - and is the most efficient means of delivery., but involves using different needles etc so is more complicated and does need more instruction.
It's no secret that many of us buy injectable B12 and inject ourselves and the information about what to buy and from where certainly isn't hidden in private messages. There are numerous open discussions on this topic but unfortunately the format of this forum does not make it easy to find such historic information.
I buy hydroxocobalamin from Goldpharma in Germany - goldpharma.com - and syringes and needles from Medisave - medisave.co.uk
Thanks Rod, I didn't realise that the different section of HU had different rules.
You can get needles, swabs and a yellow box free from your local Community Drug Team.
You can get B12 serum from B12d organisation for a donation. It's not obvious on the site where so just email them your address and then hit the donate button.
I gave up on the NHS and have chosen to treat my condition myself again this week.
I use goldpharma to get 2ml ampules of vitamin b12 Hervet.
I get 21g one and a half inch long needles to draw the b12 from the ampul and a 30g half inch needle to subcutaneously inject. The syringes are 2 ml. All these are from medisave.
This is my personal choice to self treat and I believe it is up to people to make their own choices.
I am not medically trained and so I cannot advise someone else.
Looking at posts you find that different people find different amounts suit them.
The ampules I get contain 2ml of fluid/ 1000micro grams of b12.
I know that I'm fine with injections as I previously had them from my gp. I'm replicating my original loading dose provided by my gp which was 6 injections over 2 weeks.
The pernacious anemia society website has s section explaining treatment and loading doses.
As I said , I'm not medically trained and I'm trying to work out what suits me, making it up as I go along.
It might be worth you contacting the b12 society or the pernacious anemia society to get guidance on where to get medical advice.
I have just gone onto the website for goldpharma and cannot find Methylcolbalamin 2ml ampules. What do you key in to find this? It will only show me drops. Its really frustrating. I have also questioned serum from b12d.org but no one seems to know or doesn't tell me.
Can you help. Someone needs to spell out the webistes what to key in to find these products. I cannot find any Methylcolbalamin.
I have self administered for some time. My experience of self-administered injections lead me to the following .........
Intramuscular injections are best done with a 23 gauge 1.5 inch needle if you are over 90kg's and a 1 inch needle if you are under 90kg's.
Gauge is the width of the needle. The higher the number the thinner it is. 21-23 gauge is good for intramuscular injections.
Most B12 shots are 2ml in volume. Best injection site for a 2ml self-administered intramuscular injection is the thigh as muscles in the arm are only supposed to be injected with 0.5-1.5ml of solution. Thigh is best as it is a big muscle and can be seen by the self injector.
If you had a friend do it for you the bottom would be best.
There are lots of online resources for how to do intramuscular injections from YouTube videos to medical course training slides if you search around Google enough.
B-Amazing do B12 injectables and they are UK based. They are mail order and have a clinic on Harley St as well. If you contact them they may even show you how to self inject. I have never asked them this but they seem to bend over backwards to help. Ignore the prices on their website and tell them your situation. As soon as they know you are actually ill and not just another London millionaire looking for a B12 buzz they work with your budgets and their mail order is cheap anyway because it is aimed at people in need rather than the afformentioned wealthy set.
Every post is promoting this company. I don't think it is a good idea to post links to companies charging £250 for one b12 injection! People are on this board because they are seeking help and are feeling vulnerable and desperate because of illness. This website is promoting b12 use as a wee pick me up that celebrities can choose to use. This makes me feel very uncomfortable and also I think it negates the impact of b12 deficiency on people who are ill and actually need it as a medication.
Personally I would not use this website. I will leave it up to others to decide what they want to do.
2) They do promote a high price on there website, when you get in touch with them though and explain your situation they are really understanding and slash their prices considerably when they find out you are not one of the rich elite.
3) if it's good B12 at an affordable price does it really matter how they promote themselves commercially as long as they help people?
4) For some reason their mail order isn't on line at the moment. When it is it is competitive with the German sites and there is no messing about waiting for international delivery with no tracking numbers.
This company literally saved me from a B12 drought and all the pain and misery that accompanies it. Perhaps a full grasp of ther pertinent facts is asvisable before negative public comment.
Many thanks for all the answers. My inclination is to start as simply as possible, ie not having to mix B12 with something else. Is injecting subcutaneously easier for beginners than intramuscular, or is it simply deemed less painful?
Also to start off with, how many loading injections of 2ml should I give myself over say the first week or so?
I only do subcutaneous injections as the needle is small and I don't like injections. I get my husband to snap open the ampule and hold it while I remove the solution.
I think it depends on the individua about which method to use.
I am very new to all of this and I am glad that you have posted your information as I feel I am in the same situation and need as much information as possible before I go ahead and self inject. Its so easy to become engrossed when reading so much information and get lost in the detail. The website I thought I had found was selling hydroxocolbalamin which is something completely different to Methylcolbalamin. I do apologise but am also glad that it brought it to my attention. So thank you.
I would go by the experienced people on this site as they seem to know what they are talking about and the right places to source your injections. I will be reading these posts and going to the places they recommend. Why should we have to be taken through this mess of a system for an inexpensive injection of B12.
The real question is why are we suffering in the first place?
Thanks bp2. I have heard of it, but without a wage, benefits, or pension, and with the advantage of having injections twice, and feeling so much better, I felt that my money would be better spent on self-injecting.
I can't imagine NHS doctors accepting the results of such a test anyway. When I mentioned the test to my GP he said he wouldn't put much faith in it.
You are probably right but the test is done at St Thomas London so I would have thought GP should have accepted it. The more I read here about the experiences people have had, the more I despair!
Yes, if I were a GP, I would be looking for any help in making a correct diagnosis that I, or the patient, could get.
I don't know if it is down to them being over-paid and bored with their job, brainwashed, or threatened by the BMA, but it's clear that most of them don't give a damn anymore.
I stupidly rushed off to have an Active B12 test without realising that you should come off the supplements for a couple of months before this test. I was so fed up with my symptoms I thought lets get the test done. I now wished I had waited until I had more information.
Its true they don't really put much faith into any of these tests as the haematologist has said that B12 assays can occasionally miss B12 deficiency.
I am hoping that is the case with me as I know that I need to trial these injections so I can then see how I feel.
Just thought I'd come back to you. This is so messed up. The lengths we have to go to get a trial B12 injection is just unbelieveable. I have had a letter back from the haematologist saying that because my test results are normal there is no haematological reason to suspect B12 deficiency. If there is a major anxiety then anti-intinsic factor antibodies which are much more specific. B12 assays can occasionally miss cases of deficiency but there is no other real reason to suspect B12 in this case. You could consider a neurological opinion with respect to symptoms. I doubt that you would do harm by giving B12 injections but I would not recommend this when there is no indication for treatment.
I cannot take antihistimines at the moment as I need them as its hay fever season because my body is not coping with these. I dread taking any medication really. Because of all my symptoms I feel like I am being forced to inject myself. I feel really awful like I'm a fraud and no one believes me.
Well, if you are a fraud, then it must be a new craze judging by how many of us are in the same boat. Now, if only we could get a patent on B12 for one of the big pharmaceutical companies, they would be throwing injections at us whether we needed them or not. Until then, thank goodness B12 is more freely available than something like NDT. And it is more of a food than a medication in my opinion.
Whatever you do don't mention food in this climate. There are those who can afford and those that can't. Its such a load of rubbish. All the food supermarkets throw away every day and restaurants etc. is enough to feed those who cannot afford to feed themselves. How the hell we got ourselves into such a mess is beyond me!
How do we get a patent on B12 from one of the big pharmaceutical companies? I'd be prepared to walk from here to London to raise awareness and try to get a big pharmaceutical company onboard with this.
I don't mind dressing up either! I'm going to put my thinking cap on to see what I come up with.
Can't we all come together and do something to raise awareness in the hope of getting attention from a big pharmaceutical company?
There must be someone out there who wants to help give people their health back.
Unfortunately, they can't patent B12, hence they can't make a lot of money from selling it, hence the doctors aren't pushing it on patients in the same way as antibiotics or Statins.
Now, IF they could develop a form of B12 that went straight to the cells, that would be a different matter. But, as you say, we would need to convince the medical establishment that there was a need for it.
And the down side would probably be, that in order to sell their patented B12, the stuff that so many reply on now for self-injecting, would become very hard (if not impossible) to get hold of. Until its about healing patients, and not about making money, we will always be struggling.
Do you mean we would have to go through our GP's for treatment which really should be what happens to everyone. You've moved from saying that if we had a patent they would throw the stuff at us but now the stuff that people self inject would disappear but surely they would stand a better chance of getting treatment on the nhs if there was a patent.
I now know that after having Roaccutane for acne I should have been monitored for my thyroid and B12 but that never happened at all. Hence I ended up with a goitre. I've had all the other symptoms burning feet, numbness in my arms, hair falling out etc. do I need to go on.
Because I had the blood tests taken whilst taking B12 I now need to wait 2-3 weeks for another test. Typical of me. My clinical picture depicts me as a typical patient who would benefit from a therapeutic trial of B12 injections. I have reported the chronic lethargy to my GP.
A trial would not cause any harm but of course they have to play the drama out don't they?
I was being ironic about the patent. It was a comment on the fact that if a treatment makes big pharma money, then we appear to get it with little fuss. If it is something that big pharma can't make money out of because it is not patentable, then we have to fight for it, or buy it ourselves.
Just chiming in to say that I’m a former Roaccutane victim, too. Nightmarish drug, honestly (and taken in conjunction with BC, it’s potentially a couple of clicks away from lethal).
And I hadn’t drawn the mental connecting line between B12 deficiency and the after-effects of Roaccutane, but now that I think about it there could be a link, no? Roaccutane has deleterious effect on the endocrine and circulatory systems...
I ordered from b-amazing at the beginning of April. They said they were waiting on a delivery of methylcobalamin from abroad and said there was a delay. A few emails have been exchanged since then trying to find out where my delivery was. They did offer a refund but said the delivery would be able to be fulfilled soon. I gave them the benefit of the doubt and said I'd wait for delivery.
I've sent a few emails this week asking for a refund with no reply. The website is down and their eBay shop seems to have disappeared. I'm really concerned as I spent £70 on b12 supplies for both myself and my mum as we are both deficient and symptomatic. Does anybody have further info of this company b-amazing. I've emailed Michael Galloway personally as well as the shop and still no reply.
I've found a number on PayPal for them and just rung. He said my refund is being processed and should be through in a couple of weeks. As it was through PayPal I will be able to take it through to the resolution centre if this refund doesn't come through. Why he hadn't responded to any of my emails I don't know! I have a gut feeling that something isn't right about all of this.
This is awful and is certainly not the sort of stress you need. If you paid via PayPal or credit card or visa debit you could try putting in a claim for non receipt of goods? Good luck.
Mikeg71 above seems to know a lot about this company and has been promoting it on here.
I've got 6 months to claim on PayPal and he's said the payment will come through in the next 2 weeks. I'm going to give him the benefit of the doubt (again) and if it isn't through in 2 weeks I'm putting the claim through PayPal. I'm very ill at the moment and I'm trying to do everything to make myself function again, b12 is one part of the big puzzle for me. My doctor has given me hydroxcobalamin but as I'm compounded hetero MTHFR I have troubles converting much of that to active form.
This is the last thing you need then! I hope this refund comes through for you and that you are able to get some treatment that helps you. All the best! You are very good to be so patient given what you are going through.
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