We fully agree that is incumbent on all local NHS Systems to ensure that they treat their patients with pernicious anaemia effectively and in line with the most recent evidence and guidance.
In common with most NHS Systems, NHS Herefordshire & Worcestershire follows national clinical guidance and recommendations such as those issued by NICE, where these exist. We have a local guidance on the management of B12 deficiency based on the NICE Clinical Knowledge Summary: Anaemia – B12 and folate deficiency which can be found here . Note that we do not routinely advocate the use of oral B12 treatment for patients with severe B12 deficiency /pernicious anaemia.
The most commonly used B12 injection in clinical practice is hydroxocobalamin. This is only available as an intramuscular injection which does not lend itself readily to self-administration. There is very little information available regarding the subcutaneous administration of hydroxocobalamin, and this is not usual clinical practice. Therefore, NHS Herefordshire & Worcestershire do not support the self-administration of injectable B12 at this time.
We are aware that a full NICE Guideline on vitamin B12 deficiency/pernicious anaemia is in development and is expected in November of this year. We will review our current local guidelines and practices in accordance with this guidance when it is published.
Kind regards
Clinical Pharmacy & Medicines Team
Written by
Orchard33
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I can't say I'm optimistic, but..... . The position on SI hydroxoc. is interestingly guarded and hedged. ICBs must know that some GPs let patients SI hydroxoc. SC and that it works. I have been told by a retired medic that SI is as effective as IM at our dosage level.
They cant even recognise the flaws within the testing let alone the need for SI ! So many have reported their injections have been stopped and changed for sublingal.
We can pray change's will be made in our favour. 🙏 Amen
Thank you for forwarding that. ICB. from Herefordshire and Worcestershire Clinical Pharmacy & Medical Team It states that “ There is very little information available regarding the subcutaneous administration of Hydroxocobalamin” .Well they obviously do not know about the P.A. patients at the sharp end , on this forum who use the sub-cutaneous method There are many forum members who inject subcutaneously , very successfully.
Also , why is it that the packets of Hydroxocobalamin. ampoules that we obtain from Germany , actually print on the box that I.M. , subcutaneous and I.V. methods can be used . ? Are the German health authorities totally ignorant ?
Then they state that intramuscular injection does not lend itself readily to self injection . Oh yes it does , especially if a doctor or a nurse would give 5 minutes of instruction. Not that my surgery did for me . Had to look it up on line . My GP told me that having more than 1 B12 injection every 3 months was toxic . I think that showed a level of ignorance about B12 , or something else more sinister .
Thanks for your comments. I working up to a reply but I'm wary of disclosing that many people self-inject SC with great success. Do you think they have any idea? I have a niggling paranoia that if the medical establishment knew what we do they would attempt to interfere and imperil our life-saving supplies. Thoughts, please
There is a great need for them to know and the reason as to why so many of us are having to SI. My Dr like Wedgewoods didn't agree with me doing self administration. There have been petitions signed by many but our need still goes unrecognised.
Bless you. I know where your coming from with the energy thing I have none what so ever at present. Dont mention your paranoia of having your injections stopped or they will register you under the mental health act which they seem to recognise only too well - where as B12 proves to be an issue for them.
Their hands are tied. We can protest until we're blue, green, red, purple. It doesn't matter. The NHS is a system and those within the system have to follow the rules if they want to keep practicing medicine.
Only a few select brave outliers would transgress the NHS boundaries (Dr Chandy) and risk being struck off.
Reforming the NHS is the only solution to break autonomous circles and ensure standardisation of care across the country. Until then, any challenge at a local level is likely to aggravate matters, I believe.
Don’t admit to Paranoia -you will be diagnosed as such —and the surgery gets a monetary award for that ( not for a Pernicious Anaemia diagnosis of course !)
On the lighter side; these are the top three comments made to me by a GP.
When I explained to a GP that I self injected she replied knowingly "You crush it up."
I am willing to bet that if anyone crushed up a pill and put it in a saline solution then injected it they would not do it twice due to the pain from not having a PH balance the same as their body.
Another GP said "I don't know why they have so many names for anemia they are all the same thing."
A hematologist said "I think we have things headed in the right direction." I said "There is no WE. It is all on me. I did it." This is prior to my interaction here.
This happened in the USA where treatment is one mg cyanocobalamin for 8 weeks then one mg IM one a month maybe. Oral cyanocobalamin is still the norm. The GP typically reads the flow chart from the software they use and that is the extent of their knowledge.
The depth of ignorance is actually terrifying. No wonder we all take our treatment into our own hands. It is nothing short of scandalous. I think we could collect all our anecdotes and send them in as "evidence" to NICE.
Rotexmedica was taken over by the French pharmaceutical firm Panpharma , and it is marketed under their name . Still produced at the same German laboratories.
It’s still possible to obtain their Cynocobalamin ampoules , but not the Hydroxocobalamin, which is what we want . I actually emailed Panpharma , and asked why we cannot get the Hydroxocobalamin any more and was told that it was “due to the shortage of raw material at the moment , and they did not know when the situation would improve “ I can hardly believe that , because we can still get B12 from Pascoe and Hevert , without any problem .
I'm very pleased that at last an important research project stating some our main concerns has seen the light of day in The Journal General Practice. Encouraging and hopefully it has been seen by the NICE people.
If you have the time and energy, click on "project documents" and have a look t some of them. I looked at the minutes of meetings and consultation responses.
Absolutely agree. I got no help from GP so educated myself via this forum and videos. I’ve been doing IM for several years. I was very unwell on the 3 month only regime - the only win! got the GP to ‘allow’ every 10 weeks. We’re not idiots, we can learn how to do it ourselves but it would be nice not to have all the stress of researching it and actually plucking up the nerve to do it. Next battle T3 for my Hypothyroidism.
Thank you for your good wishes. I agree when you already don’t feel right the last thing you need is to have to struggle with the ‘guidelines’ argument. Keep well😃
"It states that “ There is very little information available regarding the subcutaneous administration of Hydroxocobalamin” "
I believe this statement is generally true of Cobalamin. In my mind, the best article, by far, on B12 deficiency with neurological symptoms is "The Many Faces of Cobalamin (Vitamin B12) Deficiency", written by Dutch clinicians/researchers, and published in the Mayo Clinic Proceedings, a peer-reviewed medical journal. It therefore carefully references its assertions, almost always referencing articles in medical journals. The glaring exception is in the section on treatment of B12 deficiency. The statement that B12 deficiency with neurological symptoms should be treated with injections once or twice a week references, as the source of treatment information, not a medical journal article, which would be expected, and which I believe the authors would have referenced had such an article existed, but rather referenced the brochure that has been packed with hydroxocobalamin for decades.
My understanding, though I can't point offhand to a source, is that research on Cobalamin is mostly 40 or more years old, and my suspicion is that 40 years ago self-injection by patients was not yet a thing. In addition, treatment of B12 deficiency was likely targeted only toward resolution of hematologic symptoms, which resolve readily with very light treatment (eg, loading doses, followed by injection every blue moon or so). There was no notion at that time that there were, for all intents and purposes, an entirely different population of patients with B12 deficiency, ie, B12 deficiency with neurological symptoms, with entirely different symptoms (with very little overlap in symptoms between hematologic patients and neurological patients), entirely different diagnostic protocols (lab-based diagnosis vs clinical diagnosis), and, of course, entirely different treatment regimen (injections every blue moon, vs injections every other day or twice a week for up to two years before reassessing progress).
So it is probably correct that there is very little evidence regarding subcutaneous injection of B12, but saying so in the context of the letter is disingenuous at best.
Thank you for your reply and the useful ideas and information in it. Of course the real evidence with regard to hydroxoc. and SI is empirical ie us and our observed experience, and not lab-based, so not given much credence by docs.
I think I both do know and don’t know why the guidelines are so equivocal about SC.
People with Type 1 diabetes are allowed to inject themselves SC - indeed must be so allowed, or they would go into a diabetic coma, and possibly die. And having to have their injections managed in a medical setting would be quite impractical. So SI SC is sanctioned.
It follows that if the medics were to officially recognise SC injections as effective against B12d, it would be very difficult to argue against us SIing cobalamin SC, and then managing ourselves just as Type 1 diabetics do. Probably using the same sort of approved self-injection pens.
So something of an administrative upheaval, which they perhaps want to avoid.
OTOH, it would let us all jab ourselves as often as we thought we needed to, with something you can’t overdose on, using a method of self-injection which is already known, understood, and officially sanctioned.
And wouldn’t that be better all round, for us, and for the medical profession?
Do we think the new NICE guidelines will go anywhere near this, let alone embracing it enthusiastically?
In the letter I wrote to my ICB I made exactly that point. It was not responded to. It is undeniable that SC SI is widely used and the claim that hydroxoc. is in some way incompatible with SC SI is a half-hearted way of resisting the obvious. PA self-injectors provide a unique longitudinal study that provides empirical evidence that what we do works and is essential to having a life.
But there are no such difficulties in Germany ( which is certainly a well advanced country when it comes to things medical ) The b12 ampoules on the German packets state boldly on the front that it can be administered I.M., sub-cut and I.V.
So how do they manage ? I believe that that don’t have so many patients wanting to self -inject , because they get treated properly
I remember a few posts from Germany saying that it was easier to get enough B12 injections -not the” one size fits all” policy like here .
The consultant who advised my husband to self inject said sc injection is approved across the rest of europe. He said there is no reason at all not to inject sc but it is not an approved method in uk even though it works just as well. Only licensed for IM. No idea how to get licence altered.
It was 5 years ago on the 17th April I injected B12 for the first time, since then I've tried EOD, every week and am only happy with every third day. My wife's diary, consistently showed I was in terrible shape, unable to walk, get out of bed, headaches, in pain, for half of the time for years before I had that first injection. My GP had done tests but I had already upped my Serum B12 through sub lingually taking B12 to a heady 176, so was considered to have nothing wrong with me, once tested way after I started SI it was off the scale and I am now ignored for any ailments as they consider the B12 is poisoning me.
My GP was very helpful and discovered that I had functional B12 deficiency and subsequently wrote "severe B12 deficiency" on my Dr's certificate - despite presenting initially with a serum B12 test result of 196, with a range starting at 197 ng/L. On medical advice, she requested 3 injections a week. Nurses were too busy to ever provide more than 2 a week and were very uncomfortable with this frequency. Still, this was finally beginning to work, and so was continued at her request.
Six months later, this regime stopped being effective - my GP sent me to haematology, as she felt this had gone beyond the remit of primary care. There I was warned that B12 was toxic, carcinogenic and highly adddictive (!) : apparently this was well-known in America, where it is known as "having the reds" - due to colour perhaps (?). This sounded like fiction, but just to be sure, I asked for either a printout of this evidence or even a link to a research paper. In fact, I asked three times - each time the subject was changed, even though I said that this news was something that the PAS needed to be aware of immediately...... even this made no difference. Of course I later looked for any such evidence and found none at all, and nothing to support the "reds" allegation.
Well, since I was stuck with these people making decisions about my care, I asked how I would be able to regain my cognitive ability in order to return to work. I also gave her a list of all my symptoms, which she copied "for their files". She blamed my cognitive issues, my poor memory, word-loss issues, breathlessness and dizziness all on my previously having been a smoker. So you can see that secondary care was not going at all well for me.
I was then passed on to a locum. Her report to my GP did not contain all the alarmist comments made to me, but did advise my GP to reduce my B12 injections down to "certainly no more than 1 injection every 2 months as per guidelines".
At this point, I had no option but to self inject. I told my GP the day after I'd done the first one. Just in case she tried to talk me out of it. She didn't.
I would imagine that this is a very difficult position for a GP to be in. Having to ask the nurses to administer a frequency of B12 injections that is entirely unfamiliar to them, seeing it work and continuing with that regime, and then to have an "expert" telling her to return to a regime that has already proved inadequate must be very frustrating.
To be fair to the haematologist, she is not the only consultant out there making ridiculous statements to desperate patients. I once had an Adult Inherited Metabolic Diseases consultant tell me that he was well aware of the "euphoria experienced when self injecting with B12" : ? Of course I explained the reality - but should I have had to ?
Where to start with medical education, when those most likely to influence the thinking of the next generation are so completely deluded ?
I have been honest with all of the people in the medical profession in the hope that I might get some answers - but what I have mostly encountered is a lack of knowledge which can result in the alienation of those who cannot function on their advised frequency.
When I saw a different GP, one I'd never met before, while my usual GP was on holiday, my honesty got my NHS injections stopped altogether. Without waiting for my GP to return to work, he had an emergency meeting and then wrote me a letter, telling me to give up self injecting if I wanted my NHS injections to be reinstated. I couldn't lie about it, so I gave up. I didn't even answer the letter.
Instead, I saw my GP on her return (she was unaware of the action taken or the letter). She said that nothing had changed - she would still be there to monitor my folate, ferritin, vitamin D etc and referrals.
So I stopped worrying - until she later left the practice !
What a grim story. It illustrates so many things that people have shared on this forum. The idea that B12 is a fix like a narcotic is amazingly outlandish. But then so much medical ignorance is. Some medics make it up as they go along. As a group they rely on scientific evidence and yet peddle unsubstantiated nonsense. And it all adds insult to injury.I hope you're coping now with the loss of your enlightened GP. Sadly, I have to say that I don't lie about SI, I just don't mention it. I have parallel treatment pathways, mine and theirs. It is a tragedy that it has to be them and us and not a partnership.
Yes, I think even my GP was disheartened on feedback from the people she was sending me to. The answer, for some of us at least, does notappear to be out there yet. At least they could allow that this is the truth, and facilitate for self injection.
I have to admit I haven't read every reply to this thread, but this gets me:
"...hydroxocobalamin. This is only available as an intramuscular injection which does not lend itself readily to self-administration."
Umm, when you're dealing with the loss of nerve function and organ damage I'm pretty sure that lends itself readily to learning quickly. Give people the choice to be autonomous when dealing with a life threatening disease please.
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Is my Vitamin B12 reaching my cells?
Hello from a (UK based) Pernicious Anaemia sufferer...
Better late than never
How to use the term \"Pernicious Anaemia\" correctly
