The injections are fairly cheap. I got 100 vials for around 65 euros I think from Germany and that included shipping and tax. You should always have the first one done by a medical professional in case of shock but I was lucky as the GP did grudgingly allow me to have 5 over a 2 week period which is the loading dose, well almost as the guidelines say 6. However I was told there are 5 in a box so surgeries prefer to do that!!! According to guidelines if you have neurological symptoms and I most definitely do, it should be done every other day until there are no further improvements and then every 2 months for life. My GP wont do that and from what I am told by these charities it is down to cost. Instead they packed me off to a rheumatologist who did a lot of blood tests and they were all normal including the one looking for inflammation apart from the B12 which the charities both say is severely low.
However she still wants to give me steroids for polymyalgia which she can't prove I have. You'd think they would give the cheapish B12 injections a go before trying to fill me with expensive and relatively dangerous drugs wouldn't you? I put that to the endo and she couldn't answer that one and went quiet. Apparently I have good grounds to sue but I don't have the energy to do it and I really wouldn't want to put a doctor through it. They just aren't trained to deal with this and the NICE guidelines are apparently not good enough even if they do follow them.
You can have these B12 blood tests done privately and Dr Chandy strongly suggested that my kids got tested because it is often hereditary. My youngest has the same GP as me and we thought it would not be a good idea to go to her for it. So he has ordered the test from here https://www.medichecks.com/find-a-test/test/Vitamin-B12-(Active)_B12/
. Both my kids are young fit men though but he still said to get tested. There is one thing that all of them seem to agree on though and that it is the metformin and omeprazole that is most likely the cause. In my case I may have been low even before metformin and it may be I inherited it from my mother and grandmother as they both had symptoms of it. However the metformin would have pushed it lower and led to the truly awful symptoms.
If any of you are concerned please get in touch with Dr Chandy at the B12d charity, he is an expert, recognized worldwide will give you his time free of charge and the charity will also send you the vials free too but if you can afford it you should make a donation and they use the donations to send the vials to anyone who can't afford them. The books I mentioned are good and he is mentioned in them. The pernicious anemia/B12 society were also very helpful and Martin Hooper who runs it has also written a book. Both websites are worth looking at and there are a couple of helpful Facebook groups - this is one, Pernicious Anaemia/B12 Deficiency - Support Group.
It is early days for me. I'm told the terrible pain in my legs may take months to go. Today has been really bad. I tried to walk round Tesco but after about 4 minutes I had to give up. My hubby even drove me to the door so I wouldn't have to walk so far. I've had to give up all exercise and I really miss our dancing classes. Work is tricky I can do about 2 hours in an afternoon once or twice a week and I am exhausted by that. Dr Chandy has told me I must not overdo anything even if I feel a bit better as it halts recovery. B12 is further depleted by exercise and stress. I really hope none of you have this but if you think you have any of the symptoms listed on the charity web site get it treated any way you can asap.
Oh and Liam you may have a doctor who is knowledgeable about it but be careful because the guidelines in my area are anything over 180 is normal, however many get symptoms when they are higher than this and in some countries 200 is the cut off point and in Japan it is 500!!!! 3 years ago mine was 191 and I was told it was normal but I had many symptoms then - palpitations, aches and exhaustion. So three years of my life were wasted and somewhat ruined due to lack of knowledge. Now I am at the point where some of the symptoms may not be reversible or only partly reversed.
I should also mention that there are other blood tests that need to be done at the same time and you must not take any B12 supplements before you are tested as it skews the results. There is loads of info on the Facebook sites and the charity web pages.
Oh and Patti they were denied me during a 5 minute telephone consultation after the blood test result said see GP. This particular GP who has only met me once decided that my extreme pain in my legs would not be caused by B12 deficiency, I would only be feeling a bit tired. So 5 doses would do the trick and he didn't really think I needed those and it would be unlikely I would need more. When I told the 2 charities this they were seething.