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
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51 Replies
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Spoiler alert: She's not sent the letter off to 'Tommys' yet, we're going to wait until the results come back from the biopsy I had a few weeks back to test for celiac.
Well it's obviously not just her, this seems more like a co-ordinated effort to eventually ban the import of ampoules along with the already implemented ban on selling them in the UK. This means more people will get more ill and be prescribed more drugs which the GP surgeries get paid to do and people will get more ill from those and be prescribed more... and so on.
So we must stop this.
I tried searching for Martyn's email address but my detective work didn't pan out so I just posted here in the hope that someone connected with him or Martyn himself will see this and be able to advise on next steps.
I believe we need to raise awareness of the actual recovery process of this horrible condition and that has to come from the community - there's more of us than them we just don't shout loud enough about it.
Steve, the only way B12 sufferers are going to get any recognition is by legal action. (and No I am not a compensation addict - generally dont' agree to it in a lot of cases.) Not sure what to do but, looking at America - home of the Class Action is it called, the only way is to raise the profile and sue. When you look at the result of some of this appalling treatment (or lack of it) and resultant disabilities, it makes me want to cry! We need a Champion and crowd funding.
This situation is scandalous, the irony being that it could save the NHS thousands! Other than this - contact two Health Aware newspapers i.e. The Mail - ok ... whatever your political leaning is - this is more important, and the Telegraph. Great article recently by Dr James le Fanu re drugs and GP prescriptions to the elderly it is SO true. Need him on our side.
PS Martyn's office is in Bridgend. He is good at getting back to you.
I'm developing an idea, I'll be posting back here if all goes well with a couple of people I need to speak to to get it going. I'll be posting back if not as well, I think we can raise awareness if strategic and co-ordinated about it and utilising social media with our stories.
You are very lucky to have such a supportive Doctor.
You can add several others in Essex to the five that I know of and more in Suffolk...
Why are you trying to get the tests... am I totally misunderstanding things - I thought there was no point in testing once you have injections? I must read through Gambit's and other's replies. What are you hoping to gain?
If you are SI and it's working, isn't it better to keep your head down and try to preserve the small amount of NHS support you have got for other problems you may encounter - we know the NHS can't cope with what it's got now.
> You are very lucky to have such a supportive Doctor.
It certainly didn't start off like that which is why I SI - when I "crashed" a month after my initial loading doses and I was showing signs of SACD - couldn't stand up straight, extremely paranoid, couldn't think straight or hold sentences together and I went in to see her with a load of research showing I needed alternate day injections and if I didn't have treatment within a month or two the damage could be permanent all she offered was another set of loading doses then monthly injections. I had two of the second set of loading doses, then the nurse was away and that's when I decided to order the stuff and start self-injecting and I haven't looked back since - 540 times since then.
When I then told her I was self-injecting she threw her hands up in the air and said "well I guess you can do what you like". The next time I went in she could see my vast improvement and said to keep on doing what I was doing because it was obviously working. Her attitude has been a lot better lately, although I do think she still just thinks I'm an addict - she seems torn - not long ago she said I needed counselling, but then as you say, she is supportive. So perhaps I am getting through a little... I'm sure they do want to help their patients but they are so stuck in the system they just have to follow the manual and dole out the pills as prescribed... by the manufacturers who fund all the research and so on.
> You can add several others in Essex to the five that I know of and more in Suffolk...
Hah yes, I did say there were probably a lot more than five lol!
> Why are you trying to get the tests... am I totally misunderstanding things - I thought there was no point in testing once you have injections? I must read through Gambit's and other's replies. What are you hoping to gain?
If the B12 isn't working then your MMA and Homocysteine will be raised. A very high homocysteine is not good as it can lead to heart attacks. It raises cholesterol and I have high cholesterol even though I mostly live on salads and steamed veg. I wanted the tests originally because I wanted to know if the B12 was working, I know it isn't properly, now I'm more wanting to find out if it's dangerously high. Due to my illness I've been pretty much bed-bound for three years. I've been self-employed for 18 years and my business went to pot as my illness got worse, I went from £90k in 2015 to being evicted from my flat in Brighton in 2016 and now live in my 81 year old father's spare room - lovely at the age of 46. In the last month since giving up gluten again after the gluten challenge I had to do for my biopsy I have lost 11 pounds in weight and my anxiety has all but disappeared. I've already secured one client and am now on my road to recovery - I had no idea gluten could cause so much hassle, seems that and gene mutations which slow down my B12 methylation by up to 60% are the cause of my issues. My father has B12 absorption issues and my mother has the same issues I have with B12 transport - she's always been ill, misdiagnosed with this and that - Parkinson's at one point - and she's just out of hospital after another 'suspected heart attack' where they couldn't find anything wrong. She's just ordered the viapath set of tests for MMA and Homocysteine as her B12 level is 650ish so they say nothing is wrong and they say they've never heard of MMA and Homocysteine tests but her need is more urgent, she can hardly move some days. I've had to borrow to live for the last year and can't afford to borrow to pay for these tests. I am very lucky I have supportive family otherwise I'd be in a ditch or worse by now.
>If you are SI and it's working, isn't it better to keep your head down and try to preserve the small amount of NHS support you have got for other problems you may encounter - we know the NHS can't cope with what it's got now.
I don't see how the NHS' ability to cope has anything to do with my right to the same service - I've been asking for blood tests because I wanted to know what my illness was and how I could get better. When I was first diagnosed with 'large red blood cells' it was back in 2015 in Brighton and they totally missed that was late stage B12 deficiency. When I was diagnosed here I was just given loading doses and told nothing about it, not that I had to have them for life, nothing about folate levels or any other cofactors. I also discovered I had a vitamin D deficiency by asking for these tests, and the other tests I've asked for and referrals are because I wanted to know how to get better as I didn't believe for one minute that that was it and I should just sit there with brain fog and watch youtube all day because I couldn't do anything else.
It was only through getting my 23andme test and using the raw data from that I discovered I have a whole load of gene mutations which affect B12 and Vitamin D and in order to get better I need to adjust my diet. I also discovered about how B12 is depleted by stress and I discovered I'm still affected by the remains of childhood trauma stuck in my cells which affect it. I still inject twice daily in order to not only survive but also build my strength up again and it's working. I've been getting out for walks, I've got some revenue coming in, and am slowly rebuilding my life again.
I can see I've had these B12 issues all my life from birth and how they've affected me - as said, I'm one of the lucky ones. I want to do whatever I can to ensure we get treated properly by 'the system' - so many people are put on loading doses then three monthly injections and that just isn't enough, it makes them more ill, they give them meds for illnesses they don't have and they get more ill - that's what's clogging up the NHS, the million pounds of misdiagnosis caused by improper or non-treatment of B12 issues.
I can't thank you enough for your careful and thorough replies to my answers - I really appreciate your time.
I'm also self employed and desperately trying to hold things together as I don't have the family to fall back on - my Dad died at the beginning of this year when they stopped his jabs and my Mum has too many troubles of her own which appear to be B deficiency related!
I'm also 46!
I must try to work now but will come back to you when I can.
Hi Denise, yes I do appreciate how incredibly lucky I am, I'm also happy I can help my parents as they both suffer B12 issues so supplementing my dad which seems to be working a bit and doing my best to get my mum sorted - that's quite tough but she deserves a break and hopefully she will once she gets her jabs one way or another, even if I have to sit outside the hospital the first time just in case lol.
All the best with your recovery. Self-employment can be tough but to be honest I couldn't do office politics - now I realise why lol.
Great questions! I have just emailed my local PALS to ask for advice, so I replied again and added those questions. I am super-annoyed my B12 levels have been taken when I stated in writing that I do not consent to them being taken.
What a disturbing post. It sounds as if your doctor is trying to help but is limited in what she is allowed to offer and has already allowed you to have more tests than is usual. I've had a quick look at a few relevant links.
As I understand it, if Homocysteine and MMA are 'very very high' that would mean your B12 level was low? But your B12 level is high. I would have thought you needed to get these tests before supplementing or having injections, the reason for having them after injecting would be to see if the problem had been rectified. Eg if your homocysteine was high before injections, it should have come down post injection if low B12 was the cause of it being high.
If you are supplementing, yes, your Active B12 will be high.
I think it's very likely a protocol IS being developed to deal with the increasing volume of patients asking for / needing B12 injections in the NHS. Due to the lack of knowledge and accurate testing it does appear this may only make things worse for patients.
You say you want to tell the PAS about this - why not use the contact form on the website?
I do think she is now believing me a little more, although still half and half. She's obviously seen me progress from dribbling paranoid wreck to the almost human that I am now and that didn't come from thin air, that came from injecting 540 times in the past year.
Active B12 will be high, yes that's why on every blood request I've asked for I've stated that I do not consent to my B12 levels being checked. This has been repeatedly ignored by my doctor and the labs. I did not ask for my Active B12 to be tested, I asked for my MMA and Homocysteine. I wanted to know them from the start so I could measure changes as I have done for my other tests but I have lost that opportunity now.
I am still unsure about homocysteine levels now - if the B12 isn't working properly it should be high, if it is then it should be low. I don't know though do I lol.
The protocol seems to be flying in the face of the NICE guidelines for treatment of B12 deficiency with neurological issues which say alternate day injections until no further improvement. Due to doctor's one afternoon's education about vitamins and the cost of nurses time and the lovely conditions that develop from non-treatment of B12 deficiency and all the money that brings surgeries and the system we're in a situation that's dire. Most research done by universities and so on is funded by big pharma, and their focus isn't on non-patentable stuff. Just the way it is. It is what it is. There's independent research institutes around but they don't have the funding the big pharma do. So the focus just isn't on B12 which is why I believe the community, i.e. us, are the only ones who can do anything about it by raising awareness of the actual recovery process as although it's not fun it is relatively cheap and very effective. A few months ago I was still walking into walls, now I don't get brain fog just pins and needles in my hands and feet.
As for the PAS - someone else on here is seeing Martyn this week so said they would mention it to him. I was banned from the facebook group that I believe is associated with the PAS for mentioning MTHFR - they have very funny ideas about increasing their knowledge and seem to think they know precisely what is going on whereas I'm a bit more open to sharing information as that is how we learn and progress. It's how I discovered what the probably cause of my B12 deficiency was, and it's how I'm getting better. They also won't have anything bad said about folic acid when it made me extremely ill. I believe by not having more open minds they actually pose a potential threat to peoples health - they have around 20,000 members and obviously complete control over the narrative that those people see. That's a big problem in my mind and in the whole scenario - the problem with the system is lack of communication and this new 'protocol' literally flies in the face of actual on-the-ground research and evidence of recovery. So that's where I'm going to try and help with my knowledge network and expertise online. And hence why I was/am a bit hesitant to contact the PA. Once bitten...
The Facebook group of which you speak has absolutely no connection to the Pernicious Anaemia Society.
Likewise, this forum has no direct connection to the PAS...the opinions expressed here are those of forum members / volunteer admins, and not those of the Pernicious Anaemia Society.
But you're right...the Facebook group have some very odd ideas about B12 deficiency and the 'advice' they give is not always as it should be.
Oh phew, that's great, thanks for the heads-up, I'm very relieved to hear that! I can't even see the group now so couldn't go back and check, all I knew was the name was the same/similar as far as I remember.
This "group-think" is a big issue too - so many different groups with varying "best practices" - let's face it I wouldn't be typing this now if it weren't for them but I do believe we need a longer-term solution and to think a bit strategically how we can raise this as obviously there's immense value but seems a bit fragmented at the moment in this Hollywood internet - the decentralised web is coming, holochain and all that...
Could I ask if you've provided written permission for the biochemist to be using your test results in her research of this new condition she's looking into? The term "informed consent" rings through my mind for the use of anyone's personal medical data.
Since I started self-injecting I have stated, in writing, that I do not consent to my B12 levels being checked. These letters to my doctor are in my medical files. Each time this has been ignored.
This is why I record every appointment (it's my legal right to, I do not need to ask for consent or tell them that I am recording although can do if I so wish) and why I write to my doctor with any requests.
You are right to be concerned.
• in reply to
...what's worse is she says plainly she doesn't see the patients. She just goes from numbers and we know all too well numbers aren't the thing to look at - if she looked at the patients symptoms and tracked those as well then she might have a more rounded view of the situation.
The system is skewed and, to be honest, stupid. I've learned more in a year than the entire NHS it seems.
A disturbing post Steve that adds to the general unease about more members on the forum having inadequate injections or having them stopped, with only B12 supplements offered, even when PA diagnosed.
The biochemist person appears to be working against lab. protocols and latest BMJ research:
"False Normal B12 Results &a Risk of Neurological Damage:"
"Further testing may include repeat testing by an alternative B12 assay, holotranscobalamin assay, serum MMA and measurement of Intrinsic Factor antibody":
and latest BMJ research which summarises that, as their is no reliable gold standard test, the clinical condition of the patient is more important, although
*"the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency".
The system is skewed. You'll see in a link below that a surgery would be paid a lot more for diagnosing Mental Health or Altzheimers, compared to say, hypothyroidism - probably nothing at all for B12 !
Precisely my friend - we all know very well what's going on here, which is why we need to do something about it and not just sit back and watch the system continue its agenda.
May sound funny but I've said this for years, it's like the Terminator 2 - Rise of the machines - all we're up against is a system here which has algorithms (more money = good) and has people compartmentalised who are the cogs of the system running it. If we just watch it continues as is. It has defences, but we have evidence and community and far more people power than the system.
The last link didn't work for me, but it's upsetting that a false diagnosis may be rewarded with more money than a correct one. But if a surgery is run as a business that is likely to happen. A reluctance to diagnose b12 deficiency may be fraud, a crime, if the reason is that other diagnoses are more rewarding for the surgery. As they say, follow the money.
I am part of the Free Software movement and have extensive experience of seeing how money influences stupid strategic decisions.
Then again we currently live in a monetary society where they just print the stuff, add a few zeros when they like and cause a few wars to make some more.
I'm sorry palmier, I can't get the link to work now either and wish I'd copied the article as it made shocking reading.
I have a particular interest, as my vegetarian/vegan sister with allergies and Hashi's was misdiagnosed ME for years, then eventually dementia - B12 injections were given only after our insistence but then stopped and only antipsychotics prescribed, ignoring all other physical symptoms.
As you say, follow the money ! It is a system geared to making profits from drugs. The sad thing is that there must be many dedicated and disillusioned GPs leaving the profession. A friend's GP daughter was told not to treat with B12 injections by her surgery because they were afraid of being sued !
These are some links I've saved in the past but could probably find many more, some of which I've already posted on the forum.
thecommissioningreview.com/... Amounts paid to surgeries:
Response to headline: NHS chiefs spend £1.2m on publicity drive to expand use of personal health budgets. :
Anonymous | GP Partner:
"For that amount I could have offered a 7 day 8-8 service for a whole year. But propaganda and reflectors are more important for these spoilt rich kids from pedigreed families.The proletariat can perish as long as the NHSE lords can get their kids in lucrative private healthcare jobs in future".
Hi just on a practical note I would love to record my medical appointments. Would definitely solve the problem of vast differences between what the consultant says to my face and what the consultant writes in a letter to the GP. What do you use to record? Do you recommend a particular device? Thanks.
Very disturbing that you are being accused of being an addict. Funny how the fear of patients becoming addicts to other medications is never an issue. Like antidepressants or painkillers. Many doctors don't care if you become dependent on those medicines so why do they have a problem when you need a vitamin injection? I am becoming more and more cynical and I think its because taking painkillers and antidepressants don't cure anything long term and inevitably lead to requiring further medicines such as tummy protection (PPIs for NSAIDS etc) or larger doses of antidepressants/painkillers when tolerance is built up. We must never forget that big pharma would be making less money if they cured us permanently of anything because then we would not need their drugs.
I asked a GP to test my active B12 and they refused because my full blood count was normal. I said that my understanding was it was common that you could be deficient despite normal full blood count and she disagreed and started a long rant about all the misinformation online spouted by companies selling b12 injections. I then came home and checked the NICE NHS guidelines which clearly stated that 1 in 4 people with b12 deficiency have normal blood count. When will GPs educate themselves or stay up-to-date or just look stuff up? They cannot be expected to know everything about everything but in my experience they pretend to for fear of looking less than 'all-knowing' to patients. I would much rather they say 'um to be honest, I will have to check the guidelines for that' than them argue with me when they are wrong. I wish I had recorded this particularly frustrating GP encounter.
I just record using a voice recorder app on my phone, no secret agent devices (well, only the ones DARPA-funded google and so on sell us to track us all lol).
I've used one of my rather 'old' MP3 players to record conversations. I suspect many such devices are capable of recording. I then just connect to PC and copy the file over.
As far as I know, anything you record without prior permission is not allowed to be used, other than yourself. Whether my understanding is correct, I'm not sure. I'm sure there have to be situations where recording, without prior permission, can ligitimately be used. I'd appreciate any clarification, if anyone is 'up to date' on this
Many a time have I wished I'd recorded a consultation with my GP, especially when he said one time '... there's nothing more I can do for you' when I'd gone to see him because of feeling so 'weary' (not understanding B12 deficiency at the time.
Another time, last year, when trying to get same GP to explain on what grounds did he say I definitely wasn't B12 deficient, even though serum b12 levels below range, I asked 'so why is my Folate so high [ie out of range] ", he answered 'because you're eating too much cabbage!'
I will now record all medical consultations and can delete the file if I don't feel it worthy of keeping!
Yeah it's always good to get the evidence - my doc has said some hilarious things like when I asked to see the smoking clinic nurse and she said giving up smoking was easy I just have to replace the habit of smoking so whenever I want a cigarette I should have a cheerio instead. A CHEERIO!!! She did say she wasn't the expert though... lolz
If you've expressly requested that these tests not be performed and she is doing so to pull data for her research then this is actually against the law. I would say to report the unauthorised use of your personal data to R&D at St Thomas. I think I may have a name somewhere, but away on a business trip now till Friday. Get in touch with them to report. There's additional means of escalation from there if no joy
Hi Stevepurkiss. So, some comments on your post...in particular, clarification about the notion of a 'new as yet unnamed condition' and 'protocol for self-injectors'.
>Need for B12 an 'addiction type thing...a bit like morphine'. Shocking to hear of a GP and Biochemist trotting out this old chestnut again. Absolutely no research evidence to support this claim - in fact, research over the last fifty years shows quite the contrary.
>Putting things in B12 to make it addictive - beggars belief and not even worthy of comment.
>Biochemist 'following everyone’s results'. Well, what a useless and misguided activity. Anyone at all who has injections of B12 (self-injectors or not) will (should) have very high serum and active B12 levels - and these are no indicators as to the clinical efficacy of treatment - as we all know. No way on the planet that this can be described as 'research' or used to inform...well, anything at all...ethical issues and research protocols aside.
>MMA levels will be high when injecting B12. More nonsense. There are two issues here: a) If MMA levels are high due to B12 deficieny, then these will reduce upon B12 replacement therapy and b) in the presence of functional B12 deficieny (where the cells can not process B12 effectively), then MMA will be high, even though there may be lots of B12 sloshing about in the blood, and hence raised serum B12/active B12 levels. Bit worrying that a biochemist does not appear to be aware of this (unless the message has been lost in translation between GP and Biochemist).
> Plans to ban the import of injectable B12? Not that I'm aware of - but no idea what brexit will bring (earlier post here indicated that legislation had been put in place to ensure the continued flow of medications to the UK - but not sure of the details or whether this is correct).
>'New as yet unnamed condition coming out'. Not sure whether you mean for those who need more frequent injections or for those who self -inject (the implication being that this is some kind of addictive aberration)? But whatever, the answer is no, there isn't. I suspect that these two medics have become a little confused both in terms of this and in terms of potential new protocols for the treatment of B12 deficiency. Here's the current status...
>New Protocols: New Treatment protocols are currently being researched and developed by a group of research scientists and various health agencies, with input from the PAS. These are intended to move away from the current 'one-size-fits-all' approach to the treatment of B12 deficiency - which we all know fails so many people. The intended aim is to produce guidance that will enable people to be prescribed the right frequency of injections for that individual to get and stay well. Hurrah for that.
>B12 injections are banned in the UK. Not quite the case - more that it is not sanctioned for IM self-injection in the UK (yes, we're behind Europe in this and it's short-sighted - but not the same as actually being banned).
So...some other things you might be interested to know...
>The PAS are facilitating a research project to investigate the efficacy of B12 via subcutaneous injection (many assume that SC injection is as effective as as IM, but no research exists to demonstrate this). If it can be demonstrated that SC injections are equally as effective, then that’s a step towards the sanction and licensing of vitamin B12 for SC self-injection. We deficients would then be able to self-inject in the same way as diabetics do now...and if this,included a new protocol based on frequency according to need...oh joy.
> More interesting research: in brief, another research project by the PAS has resulted in the identification of specific bio-markers that are present in those who need to inject B12 more frequently to stay well (bio-markers not present in the control group or in those (quite rare few) who seem to manage on three monthly maintenance doses of B12). This is the first time this has been identified. Further research is now getting underway to investigate the significance of this. It's a step in the right direction in terms of understanding some of the complex reasons why some of us do need more frequent injections. Very exciting.
Further details about research etc. can be found on the PAS website and in the PAS newsletters (also available on their website).
So...I think your GP and Biochemist are, well...not quite on track with this (at best).
So...things are moving in the right direction (albeit very slowly) and educating doctors and getting the message out there will be, as always, no easy task.
However, hope that the above will reassure you...and anyone else who reads your post and the subsequent replies.
Finally, really pleased to hear that you've improved so much and sincerely hope that you're able to effect the same for your family members.
Wow thanks for that, I sincerely hope what you say is the case as it certainly didn't come across like that from what the biochemist said to my doctor. Let's hope they're just misguided individuals!
It concerns me that I've also had my B12 tested when I've explicitly stated in writing that I do not consent to it being tested, and that they are as you say monitoring numbers as opposed to interacting with patients.
I am heartened by your response, but not enough to sit back and relax just as of yet. They seem to still be missing out a lot of research with regards to gene mutations as that seems to be my issue with up to 60% reduction in B12 methylation.
Renewed interest in all forms of B12 research over the last few years...have you tried searching on google scholar...might find something of interest there.
I guess I just feel burned from how I've been treated (or not as it is) according to their own guidelines and how thousands of others seem also not to be. So hopefully this is a turning point for the better!
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So further on that - who gave this consultant biochemist the instructions to follow mine and others blood test results? Why wouldn't I be informed of this? Why did they take my B12 when it wasn't on the form? Why did they take my Active B12 when it wasn't on the form?
This I don't believe is right, therefore I still declare this situation as "fishy".
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...and why would they continually refuse my MMA and Homocysteine? And why would the haematologist say it's nothing to do with them when it's in the NICE guidelines that they are to be contacted urgently?
There's too many loose ends here for me to be completely at ease with the whole situation to be honest.
Just to say that my GP also inferred my becoming addicted to B12 when I asked to have more that one injection every 3 months .She said I could become addicted, and also that too much B12 was toxic( how much was too much she didn’t say ) . I should have asked where she got her information from , but doctors are intimidating when you are feeling so very unwell. Of course I now self-inject. Wishing you all well— from a poisoned B12 addict.
When one of the hospital consultant haematologists refused to follow guidelines and give me more than 3 monthly injections I put in a complaint.
The reply I had was that he didn't refuse and I could ask my GP but that more than 3 monthly produces a placebo effect.
This consultant also mentioned that he peer reviewed the British Society for Haemotology diagnosis of B12 and folate deficiency guidelines.
He also allegedly wrote to my gp and told them I did not need more B12 and my neuro symptoms were due to me having MS?
I had to fight to get a neuro appointment and only had a head MRI which showed I had at some point had a stroke.
Waited 6 months to see the neuro who was amazed at how well I am although he did write to me to tell me my balance problems are due to long tract signs due to the B12 issues.
He didn't know if the stroke was due to high levels of homocysteine but he did say it is a rare cause of stroke but all other tests have been ok.
Diagnosed with PA due to MMA tests, homocysteine was not done at that time so no idea of levels when I was ill.
I have also received a hospital letter confirming that last year I was diagnosed with Myelodysplasia. oops, don't think they meant to confirm that in writing.
I had bone marrow failure due to my B12 deficiency and like Steve I do believe I have had an ongoing B12 deficiency on and off since childhood.
My serum B12 level when I had bone marrow failure was 191 ng/L (187.0-883.0)
That's part of the reason why they thought I had Myelodysplasia.
I had been on a gluten free diet for over 6 years when I was ill so I do know gluten played no part there.
Doctors have also refused extra B12 and I get the same old it's toxic statement.
the doctors and the hospital have also refused to do the PA anti body tests.
I keep asking if I was so ill with a B12 level that was in range then what level should I be at?
Of course they can't answer that.
I was tested for a genetic B12 problem but the consultant told me that due to the transfusions that they had been testing donor blood.
Not so sure I believe that now but I am struggling to get copies of those results.
Funny thing is I definitely have a diagnosis of PA however I can absorb some B12.
If i have a decent sized steak or piece of fish then about an hour after I have a ton of energy.
Odd but hey ho.
I will continue to self inject and they can label me what ever they like, the bunch of muppets.
Wow you've been through it indeed! Yes I wondered why I practically lived on beef chilli! They really are making a lot of people more ill through all of this - my poor mum has had it all her life and still ongoing, hope I can do something about that. I'm too worried about my homocysteine level but simply don't have or want to pay out 130 quid for tests which should be done by the nhs. We'll see...
I only had a head MRI but I think I could have SASD so am thinking about paying for a spine MRI.
I need to write back to the hospital asking them to clarify the Myelodysplasia as I believed that was a misdiagnosis so I will ask for a cervical MRI as well. Worth a try I guess. lol
My mother showed me a letter she had from a hospital in cornwall from three years back where she went when they were on holiday and it said she had myeloma and she needed regular checks but the doctor never contacted her and she never chased it up Now here creatinine levels were sky high and when I looked into the bone marrow stuff that's all to do with B12 - if you don't treat it properly it just goes round breaking everything down so if it's not one thing it's another.
She's now got really bad legs and the paramedics are visiting to take blood pressure but they've put her onto antibiotics which of course destroy the gut further. Ordered the viapath blood tests on friday, still haven't arrived yet. She was confused on the phone yesterday, we had to go through the same thing multiple times which we'd already gone over the day before, now today she's a bit clearer but hyper and speaking at a million miles an hour.
Wish the tests would arrive so we can get her mma and homocysteine then hopefully the docs will listen and give her loading doses then I'm happy to continue from there, I just don't want to give her the first few as there's that issue of anaphylactic shock, plus she still doesn't totally believe me that it's all B12 so some proof will help.
Thanks - yeah and my father now too, he's just got his latest blood tests back, three out of range but of course the surgery says everything's fine but his haematocrit is down, gone below range now, MCHC gone up above range and RBC gone down below range so obviously the sublinguals aren't working and so will get him to book a doc appt and push for injections. Can't believe they say everything's fine when they're out of range - this is how it happens, they don't spot the signs even when they're right in front of them, they can't be bothered it seems.
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New B12 Oral Treatment for PA
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