I would be interested to hear about the experience of people who self treat without their gp knowing. How do you deal with a doctor’s disapproval at high test results and what explanation do you give?
When it happened to me I avoided the issue and talked about ‘supplementing’ and symptoms, although it must have been obvious I had had injections. The whole experience has left me feeling quite uncomfortable and anxious.
its more worrying for a doctor if theve tested b12 and its sky high without an explanation.
Whg are they testing ??
Its a ridiculous position imposed if you were not offered treatmeng needed .zor it was stopped.
Try and get them back on prescription as well on any regime ??
No one shoukd be forced into this position.
Lets hope the new Nice guidelines wilwill improve our care due next yesr .
My mums ive had to get reenstated twice are 8 weekly now.
Theh sti try and test hef b12 ......why oh why??
In my case it’s been included with folate and ferritin as part of an annual health check. Nothing to do with monitoring treatment as that was refused. 😕
oh yes folate snd b12 done together at the labs.
Its your body. And you can do what you want with it.
A Doctor can advise you of the implications, but they can't stop you.
At worst, if they do not have any experience or understanding of B12, they can refuse injections for fear of overdose. But not many go to these lengths.
For me, I couldn't get the treatment or diagnosis I needed because of delays and because the Deficiency was warping my thinking. I took supplements and skewed the test. I confessed to taking supplements but was told thr 'normal' line and then ignored because the surgery had no functioning phoneline - ridiculous. Everything was via econsult and so ignored if they felt they could ignore it.
I had no choice left but to self treat. And when they got a proper phone I pushed for am MRI I confessed I had to inject B12. The Doc asked where I got it from and that was it. He didn't care about anything else.
When I did get a nerve conduction test I confessed to them aswell and they asked me where I got it from too. And that was it.
The Doctors have many other worries and concerns on their minds and are unlikely to think very long about it. Even though they should be concerned for patient safety, they rarely are. They just care about how you go hold of it.
Put your mind at rest that nothing will happen yo you, because youll only risk depleting your B12 reserves.
Thank you. I hadn’t thought of it in that way. Your comment about deficiency warping your thinking is so true!
I have never been retested since starting gp injections in 2019, it’s not routine at my surgery, but I did squirm a bit last time when I-had to cancel and book for a month later for injection due to getting covid and the really nice nurse said it must have been horrid waiting so long to get it.
Funny she thought it was horrid to go without. So she must know how bad it really is. I know nurses are afraid to second guess a doctor. One just told me doctors don't like suggestions. When i suggested that they testa man in the waiting room who was very confused and whose legs were painful and who said he can't live like this anymore. I suggested b12 test. She said doctors don't like suggestions. Pretty sad.
I must admit I was surprised by her comment another nurse told me when I was a week late “better a week late than a week early “ so obvious she had no knowledge about B12d. Most the nurses at my practice are really nice and the young GP’s,. it seems to be the older GP’s and the practice manager who are out of touch, during lockdown I was told no injections only tablets but I stood my ground and said they don’t work for me so after a lot of huffing and puffing they said ok but made it difficult for me, making appointments in the middle of the day when I asked for early morning or late evening due to having to go to work. I’ve only seen one doctor since early 2020 and that’s a young one the others just brush you off to the nurse clinical team.
I just don't get the mystery behind b12. What IS the problem? I mean really? Why is this even an issue at all? Who is it that is pulling these b12 strings at the top? This is ridiculous. What don't they get? Why are they so stubborn about this? I had an interesting appointment the other day. a hemotologist doctor put in my chart that i was self diagnosed b12 d and possibly PA. I wrote to him and said, my doctor diagnosed my b12d and my IFAB is positive so I have confirmed PA. I'm livid about that. Now other docs will see that and not believe me!! I'm pretty pissed about it. He was dismissive and disinterested. So i will report him as well as sending that letter. He just set me back 5 months if not 37 years. I feel like I'm at square one again.
yeah, I also don’t get it🤷🏼♀️ If they educated themselves on this we wouldn’t be a ‘drain’ on resources, they could just prescribe the b12 for us to pick up and inject at home on an as needed basis, or better yet they could use their influence to get the b12 available OTC and we wouldn’t need to bother them every three months just to keep ourselves in the system, they could record we are deficient for life but self medicating so sll health services would know if we couldn’t let them ourselves for some reason.
Right? Exactly. It would do nothing but good! It makes you wonder why then they don't want to help us.
Now I'm pissed off for the day reading that, EllaNore!! I'm in Ohio and get the same kind of bs from docs.
I'm sorry Justme, it is terrible when we don't have anywhere to turn. None of us do. I'm sorry you are suffering. Are you self injecting? How are you doing with your PA?
Thank you, EllaNore, for your kind concern. I am fortunate that I am somewhat handling my B12 deficiency with high dosage sublingual tablets. The once a month shots were unbearable for me. My PA was diagnosed based on my parietal cell test results...(IF was normal two times but we know what that means) caused by severe autoimmune atrophic gastritis. The frustration comes from the knowledge that my doctors do not really know much about B12d and how to treat it along with the gastritis (it's not the kind that you can take antibiotics and be done with it). I have learned so much from this group and have done my research and am now taking care of myself. I manage my stomach to some degree through eating probiotic foods, taking HCL only when necessary (have side effects from it) and have just written to my gastro today for recommendations on what type of probiotic pills to take. My hematologist tests my blood serum and then claims I am not B12 deficient (again, we know what that means). My symptoms are not nearly as bad as some in this forum. I have numb/tingly toes on left foot, brain fog and fatigue - these are the most salient - some days are definitely better than others. On very bad days I increase the amount of B12. I do make myself exercise nearly everyday and stay away from sugar, red meat (because of stomach) and dairy; and I keep my weight in the normal range. This all seems to help a bit...
It sounds like you have a handle on your own care. That is so great. We certainly do learn a lot, very fast don't we? I'm glad you're symptoms are not as severe as some, but you still have them and that is a burden in itself. Still stressful, still life changing. This forum is great! The stomach, I feel is one of the hardest things to deal with. So many things in there going on. I have definitely hada life time of abdominal issues. I wish you luck.
Probiotics are such a life saver for me over the years. I used to use a product called Synergy, from PureTrim, formerly Awareness. They kept me well when no one could help me. I used several of they're supplements. Synergy, Complete, Experience and Harmony. Great products. You can Google all that
Take care
Hi. My GP tested again - she thought she was being helpful as I had symptoms. I read up and when I went back for the results I gently mentioned why it would show high levels.
I was taught to self inject by the surgery’s nurse when injections stopped due to Covid lock down and I complained. I now self inject every other day - I have kept my monthly prescription going as I think it’s important to have that on my records.
I feel really conflicted because I think it would be helpful for the medical staff to know that people need to self inject however I’ve had negative experiences and misunderstanding about B12 deficiency and feel reluctant to update them. I think the worse that could happen is that they stop the monthly prescription but I like that to be clear on my records as it was hard won and I might need it to be clearly shown sometime, say I in hospital or couldn’t get supplies.
As said, let’s hope stronger guidelines are issued soon.
Yes i agree.
I still buy my needles despite havibg b12 on prescription ive fought hard to keep.
Chemist mentiined needles.
I mentioned it once to Gp and said id been buying them online. She didnt flinch and said they are difficult to prescribe.
Really can't battle any more at present and 'dont want to rock the boat'
Ludicrous to prescribe b12 without needles though.
Needles easily to buy though .
I also want to keep my prescription and awarenes that alot need frequent b12 injections.
Right. It is an anxious position to be in. But if we don't tell them, they will think once every three months is working and that is all anyone needs. We are in a catch 22 here. I'm just honest about it. I don't need a doctor anymore since I know how to treat myself. They never did anything for me in 37 years except make me doubt myself. I do tell my doctor's and if they'll listen, I'll explain why. But most don't listen. Don't care. Think they are God.
They can't do anything to you. You're not breaking any laws. You can treat yourself to save your lives if you want to. I feel we should all admit to our doctors we SI. They think what their doing is helping, but since we are all SI behind their backs, they think it is them that's helping us. When it is US.
I'm tired of the run around and missdiagnosis from a hundred doctors over decades. I will not shut my mouth any more. Sorry, this is the kind of stuff that really makes me sick. Why are we walking on egg shells with these people? Why do we let them keep us down? Why do we let them talk to us this way? Why do we let them do this to us? I'm can't just sit here and let them have control over my life. I will tell everyone i can about B12/PA. And that we ALL self inject. If not for myself, for all the people in rest homes that can't help themselves and are suffering a terrible slow death from lack of b12. I don't feel we can sit quietly anymore. I feel we all need to stand up and speak up. Tell anyone who will listen. We can change this. Eventually. If I get some literature together, i could take it to care homes so they can learn to give as much b12 as needed to their patients. That's all it takes, enlighten one person at a time. Care homes might be more accepting of this knowledge. And those patients need it the most. They can't help themselves but we can. What if we all took some literature to just one care facility.... Imagine what that could do.
I agree with you totally but I suppose we tiptoe around doctors because they are the gatekeepers to hospital care who decide whether or not we will be referred for tests and investigations or even if we are taken seriously in the first place.
I wonder what patient /doctor relationships are like in those countries where you can buy b12 as often as you want.
They have us where they want us, don't they. Scared they will abandon us or not order tests we need. We are vulnerable going in and they know it. No not all docs are ego driven. But I've only found one and he can't help me anymore. Said he did all he can. But that's not true. He could educate himself to help me further but chooses not too. So now i have no GP. He's the one that found my PA when no one else could. I thought i caught a good one but he quit. Maybe because i SI?
I find my gp quite patronising. Always talks about ‘we’ just to make clear the weight of the medical profession is behind any opinion and it can’t be challenged.
The doctor I prefer to see is always willing to listen but then sticks to a narrow interpretation of guidelines, doesn’t seem open to learning anything new. So hardly any better.
I also wonder sometimes if there would be fewer cases of B12 deficiency if we were allowed OTC Hydroxocobalamin injections.
It's such a weird, paradoxical situation, isn't it? We go to Doctors for help with our health and all they do is run a test, read the numbers and tell us what they mean. And if they look good then 'it should be reassuring'. I.e., "what on earth are you going on about these symptoms for? Your tests all say you're fine, so get over it and leave me alone."
Any Doctors worth their salt, who can see where the issues are, eventually get out of the system. It is only the outliers who can change it. In this 'new era' for the UK, could we please can have more clever thinkers to challenge the system so the GP's can gain a deeper understanding of gut, stomach and nutritional health?
Especially since nitrous oxide abuse (Whippets) is now the second most common street drug in the UK and is legally available online. Yet GP's are flummoxed with what to do when these kids turn up with no feeling in their legs and call up equally clueless neurologists for advice.
Let's hope the demand/need will shove them into action.
I had wondered if they were expecting a flood of nitrous oxide abusers needing treatment and that may be the reason for so many health authorities cutting the ‘normal ranges’ - to avoid having to treat too many people with B12d.
Is that really what they're doing, cutting the normal range to avoid giving it out? Is that where they're now saying if someone is 'borderline deficient' (e.g. 175 against a 197 cut off) to monitor them and not immediately treat them? I've seen that with a few other people and I hadn't seen it a year ago.
Certainly, my own GP asked me if I abused nitrous oxide. I was kind of flabbergasted since we'd already spoken about the causes leading up to it and a recent history of gastrointestinal problems (which he didn't think were related).
It is total madness that labs have the power to alter these things. It's a bit like the energy companies - we mere plebs have to pay up or freeze and there's very little we can do about their gross profit making.
I don't want to be too political but profit before people can only be sustainable for a short period of time. What about the Quakers who have led on the most successful British confectionary (Cadbury's, Rowntrees, Fry's)? Their values stopped them filling their own pockets to big. And we seem to have totally lost that way of seeing society.
If it is true that NHS are lowering lab ranges to save costs then we really do live in dark times.
Have just posted a comment where even 119 blood reading doesn't qualify for B12 injections.
My understanding of test ranges ( anyone correct me if this wrong) is that they are set by labs in line with the levels presented by the local population and the particular blood analysers they use. Hence discrepancies in different parts of the country. A percentage of people in the mid range without obvious illness are considered normal with the level representing deficiency a grey area somewhere below that. And who knows if this is open to manipulation by health authorities. And what the effect of declining health in the general population would be.
There is no objective way of defining deficiency, which is the catch 22 people face.
This would explain why we all know a much higher no of people are b12 deficient than they will admit and if we were allowed en masse to self treat it would signal failure of the health system.
I couldn't say I knew how the levels are set but what you've said makes complete sense.
But I think you're right, where there is no clear deficiency level then the goalposts can be easily moved or lines blurred.
And the non-objective approach is a mismatch with the scientists who analyse it. They are going off blood levels only - that seems to be the problem. You could be screaming from the hills with symptoms, but if you're over the range then you don't have a problem.
I think if there was a set and standard deficiency level of, say 300, anyone under those levels should get 6 loading injections.
It's when (some) Doctors suggest OTC supplements could 'get the levels into the normal range' that they've totally misunderstood the treatment required to help the patient. If blood levels were all they could go by, we would surely need a maximum level? But there isn't one, because it's not possible to have too much. Yet, no GP or medic of any description I've spoken to would agree with that.
So it's an education problem for the GPs, who seem to apply a little bit of their knowledge with a little bit of NICE guidelines and a little bit of consideration for costs and resources to blend a pretty awful and lethal concoction. So, for GP's, it stops being a science and becomes a bad work of art.
Yes i try to spread the word too.
I took posters into my surgery twice.
They acceoted them but uve never seen them up with other information.
Its the Gps covering care homes.
They need to prescribe it.
PAS are spreading the word .
There are good doctors .
Its accessing them .
Hi EllaNore
Thanks for your comments, and the further replies - it's helped me reflect. When arguing to be taught to self-inject I sent in information from PAS and argued my case. Your reply has helped me think beyond my own situation and strengthen my intention to be stronger about getting the message out. I do carry a concern as the doctors are gatekeepers (as MorningMist says) but in thinking this through I realise I am in a good position to at least be clear about my position as I'm not reliant on the prescription. It's something I'll think through now and work out how to take it forward. Liz
Thanks Liz. That's great. I get a little overheated sometimes, but that's what makes me want to make changes. My last appointment really ticked me off. But it put a fire under me to do something about it. Sorry if I go to far. It's just so frustrating.
My self injection was confessed after two doctors suspected Addison’s Disease from symptoms, during first lockdown. Tests, x ray, etc. done at the hospital, but not cortisol, even though I also have thyroid disease and had confessed to self injecting for PA/B12 def. It was completely ignored…….
Afterwards, having been refused cortisol testing, I sent Dr J Chandy’s book, “Vitamin B12 Deficiency in Clinical Practice”, to my surgery to draw attention to the links and Addison’s research between all three diseases, e.g. that he had discovered from autopsies that all those with PA/B12Def. had adrenal damage…..
It was only known years after J.F Kennedy died, when old files were able to be accessed, that he’d had all three diseases and his sister, Eunice, suffered from Thyroid Disease.
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