For a year now I have been trying to get my MMA and Homocysteine tested by the NHS and they have ignored and refused. I asked my doctor to speak to the lab and was shocked to hear they've been 'monitoring people like me' and are developing a 'nationwide protocol' for 'people like me' who 'seem to get a kick' out of following the NICE guidelines which they don't follow.
I am keen to hear if anyone knows anything about this or anyone who knows who I could contact to find out how we can ensure this doesn't happen before what I believe is the ultimate goal and that is to ban importing of our essential life medicine.
Here is what I've managed to transcribe of my doctor's appointment so far, I record all my appointments, glad I did!
Doc: "I’ve spoken to the… OK, so let me explain what happened. I, err you know because we referred you to the neurologist then we referred you to the haematologist then the endocrinologist, nobody wants to see and what I spoke to the biochemist, the consultant biochemist she’s the one that does all the tests for you erm and she said yes she’d looked at your records and all the tests that we’ve done she said I’ve allowed more tests than we would normally allow..."
Me: “Riiight”
Doc: "...and err she could see that the vitamin B12s were all coming out high…"
Me: “Yeah”
Doc: “...so she sent your blood off to [Guy's and St.] Thomas’ and found your active B12...”
Me: “Yup”
Doc: “...and she said because that is greater than 128 it’s sooo high…"
Me: “Riiight”
Doc: “...that if you did the homocysteine and the other one that you wanted [MMA] they are going to be very high.”
Me: “Right”
Doc: "She said it’s it’s a very… those two tests are very very expensive tests and they’re going to be normal if not very very high it’s no point doing it, OK.”
Me: “Right”
Doc: “So I said well you’re still self-injectiiing…”
Me: “Yeh”
Doc: “…I said whooo looks after people like yourself with a vita.. vitamin B12 deficiency. She goes well I sort of look after like your blood tests but I don’t see patients do you see what I mean and she says they’ve got five in the area she said that find themselves self-injecting she said there’s a new protocol coming out for us to follow for vitamin B12 deficiency and she said the only per… I think like that you found out is some chap in St. Thomas’ whooo has an interest in B12. What she was saying which you may not like what she said is there is a neeew condition coming out from aaaalll this information throughout the country err more and more people are having vitamin B12 injections…"
Me: “Yes”
Doc: “…and what she was saying erm was they they’re going to call it a name and they haven’t given it a name or she sort of suggested a name of a condition where peopooohl get a hiiigh from a vitamin B12 injection”
Me: [gives annoyed look]
Doc: “No no no no she... well I was just saying well is it a bit like and addiction type thing and she said what happens is when the when you don’t have it again, like tomorrow, your injection, because the level drops - only minutely - but because it drooops you you feel unwell and the only way to feel better is to have some more vitamin B12”
Me: “Riight, OK, that’s interesting”
Doc: “Yeah so she said…”
Me: “I wonder who that research was funded by”
Doc: “I don’t know because - well she was saying she was saying she was saying that they think it’s something a bit like you know morphine people get addicted to morphine...”
Me: “Yeah”
Doc: “…that there may be something in the vitamin B12 - as I said you may not like what she said to me - err there may be something in the vitamin - so I said is it the additives that they add to vitamin B12 that makes you crave vitamin B12 so I said there was vitamin B12 and something that they put in it…”
Me: “Yeaah…”
Doc: “…that you crave that you need it because if you don’t have it you feel unwell. I said is it the fact that you’re having an injection and if you don’t have an injection you’d feel unwell, y’know, or is it the actual stuff, the vitamin B12, that if you don’t have it it makes you feel unwell. She said we don’t know but there is this condition developing that if people don’t have their injections they start to feel unwell. So she said they’ve got five in - she must be following everyone’s results…”
Me: “There’s people who’ve been having injections for years”
Doc: “Ah, but what she was saying was that obviously if you’re buying stuff on the internet which everybody is doing...”
Me: “Yeah”
Doc: “…you don’t know what they’ve put in that vitamin B12…”
Me: “Well it’s exactly the same thing as…”
Doc: “Yeh yeh yeh I know that’s what I was saying”
Me: “…it’s the same box the same make…”
Doc: “So I said that I can’t - she said”
Me [over the top of her speaking]: “I know exactly where that’s coming from, the drug companies”
Doc: “Yeah so yeah so anyway I said well what do I do because you were requesting those tests and she said I will not allow those tests becaaause they’re going to be super super high because the active vitamin B12 is super super high”
Me: “Yeah right ugh but…”
Doc: “I know I know I know honestly I said please can you not just do this she said they are going to be super high”
Me: “This is so big. Because in Holland they have the B12 research centre and that’s that’s an independent thing it says about the long term thing (?!) but obviously that research is it it…”
Doc: “What I’m going to do…”
Me: “It’s going to be high if it’s not being used”
Doc: “I know I know I know is it not going to be high because you keep injecting yourseeelf because you feel unwell - anyway - so I said well if there’s no-one at Broomfield that deals with it other than you who looks at the blood tests - that’s why she’s allowed you to have the copper and the magnesium…”
Me: “Right”
Doc: “…which normally I’m not allowed to do those kinds of blood tests…”
Me: “Yeah that’s because I was trying to find out what was going on”
Doc: “Yep, so what she saaaid - I said - well then what I said was well I might have to write to Tommy to to St. Thomas’ and say - I don’t know if the CCG will fund you going there…”
Me: “Yeaarm”
Doc: “…is to say is to say err you know write to St. Thomas’ and say look you know you’ve had this difficult time and we’ve tried to refer you locally, haven’t been able to be successful, we’ve spoken to the consultant biochemist who suggests maybe the only option would be to refer you - so I’m not saying I want you to go to St. Thomas’, I’m not saying you want to go to St. Thomas’, I’m saying the consultant biochemist at Broomfield is saying there may be no other option but to send you to St. Thomas’. So that’s what I’m going to try and do that letter for…”
Me: “OK”
Doc: “…but that’s exactly that those are the scenarios that she said err and she said that they’ve got five in Mid Essex that are doing what you’re doing - self-injecting because if they don’t have an injection”
Me: “...of those who tell…”
Doc: “Yeah yeah yeah of those who tell yeah yeah yeah”
Me: “there’s a few more on the groups”
Doc: “Oh yeah yeah yeah but what she was saying was because she’s following their blood tests or something”
Me: “Yeah”
Doc: “But she said I’ve got five in Mid Essex and I have watched your blood tests and I’ve allowed for blood tests to go through that normally they wouldn’t do and she said that even the active B12 we don’t normally do but she could see that you were having lots of tests and because I’m asking for all the ones that you’re asking that normally GPs don’t ask for…”
Me: “Yeah”
Doc: “She said why is that same request going in again and again and that’s why she’s done the active vitamin B12 test. So I’ll do that letter for you tomorrow and we’ll send it over to Tommy’s tomorrow fingers crossed CRS allows that letter to go through”
Me: “OK”
Doc: “Alright”
Me: “That would be good”
Doc: “Yes”
Me [shows letter I wrote to her]: “Yeah I mean this is just obviously I covered the MMA and homocysteine here but it’s just to say about the sharps bins because I phoned up and they said they only take one litre ones here o
New B12 Oral Treatment for PA
Diagnosis 
B12 deficiency and b12 deficiency anemia
