Hi, and apologies for duplication but I'm trying to find info on how the clearly inadequate 3 month interval for injections became established? After happily SI eod for 8 months on prescription I've just had an ominous text inviting me to 'discuss' my B12 usage. So gathering ammunition... I won't go down without a (polite and respectful) fight!
Why the 3 month rule??: Hi, and... - Pernicious Anaemi...
Why the 3 month rule??
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Myoldcat
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No idea.Was monthly back in the day when B12 injections first made .
Then hydroxcobalamin replaced cyanocobalamin knoe to last longer no evidence to how much longer ive read???
Hi Myoldcat
I think in Martyn Hooper’s book it says that the 12 week is not based on research but an arbitrary “default” value given the lack of instructions to a junior who was entering into whatever prescribed drugs get entered into.
I will have a quick scan and see if I can find it.
Meanwhile NICE guidelines go by symptoms and EOD is until symptoms clear or no improvement- so there’s the base line.
🤗🤗🤗
Well interesting that it used to be monthly! Thanks x
Cyanocobalamin injections have always been monthly. It was only when hydroxocobalamin was introduced that three monthly injections came into effect. I remember reading this was based on the fact people were reporting feeling better for longer so the time between injections was lengthened. I never found any scientific evidence for this change. Perhaps your doctor could provide it? They will probably just point to the NICE guidelines or manufacturer's licence - which does include more frequent use than 3 monthly if required but most doctors don't acknowledge.
Thanks Tanitha. Funny how doctors will happily quote 'research' that B12 is toxic and other such rubbish, but no-one has bothered to do decent research on frequency and dosage.
But where is the toxicity research? Have you found any?
No I haven't, just plenty to say the opposite! So I'm going to earmark the most respected studies I can find.
My doctor said b12 was dangerous. I asked about supporting evidence and the reply was “well, perhaps dangerous is a bit strong”, but that was it. I think they are perhaps confused with high levels in people who aren’t on any supplements which can indicate the liver isn’t able to store b12 due to some sort of liver condition which is a different thing entirely.
Yes, a major misunderstanding but really we should not have to suffer for their confusion. I always think I can't be the only patient in my position, and surely they should have some curiosity about why we need more frequent treatment. But I suppose they don't have the time...
This post from WiscGuy is interesting and thought you might find it useful healthunlocked.com/pasoc/po...
Under the heading B12 Malabsorption it mentions hydroxocobalamin being retained longer in the body than cyanocobalamin and that it is more available to cells. This is the paper referenced dated 1984 pubmed.ncbi.nlm.nih.gov/669...
Thanks Tanitha, will study that. I can't imagine one ampoule being retained for 3 months though...
The doctors struggle with injections more frequently than three monthly because it's been said loud enough and often enough (with little if any consultation with patients and how they feel) so it's become the norm. The fact the cost of nurse's time comes out of their budget so they don't want to do it anyway doesn't help, nor does the scaremongering of b12 being toxic which doctors seem very happy to accept but can't show any evidence. However, there are so many reasons why and how a deficiency occurs it makes sense it will be utilised and stored differently. Even though there IS evidence how long a person has been deficient and the damage done before treatment begins is crucial for recovery, it's unusual for a GP to administer anything but the standard treatment of loading doses and three monthly maintenance.
it is arbitrary and not based on research.
I found a research paper on which it was allegedly based (sorry can't remember where, it was some years ago when I was first diagnosed). As far as I remember, the test group was about 38 people. Half of these participants died or dropped out during the study. The conclusion had nothing to do with outcomes but did say it saved money if you only inject every 3 months (which is obvious, although also obviously if you train people to inject themselves it is even cheaper). I don't think this is a hallucination, I did read it at some point!
I'd refer your GP to the latest b12 guidelines which the frequency is dictated by what frequency abates the symptoms. Which is much better than the previous ones were.
Yes that's true!
I have self injected for 14 years - I just told my doctor I felt better injecting every 6-8 weeks and he was happy to prescribe on that basis
My doctor was ok with me self injecting after I gave him my letter from Dr K, but I think it's the eod frequency that may now be the issue. Surely she should be better after almost a whole year?? I can hear him thinking...
Hi Myoldcat
You consultant is mine too. I have a letter saying “for life” and you should too if you have a leading B12 consultant saying that’s what you need.
Had to use this letter recently and it forced the NHS consultant to reconsider the decision they had made. For life means for life - not just for Christmas! 🎄
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To add to the Ammo idea, 'Keep your powder dry'. Don't give them chance to work round it before you see them face-to-face. You're 'costing them money'. Frankly, it's our money that's being spent and you're more than welcome to mine! The actual cost is minimal, but everything's costed. 'They know the price of everything and the value of nothing.'
If all else fails you have a second string to your bow [and a third?] because the German on-line pharmacies, and on line sales of the hardware will keep you sorted out.
You must have really irritated them by taking matters into your own hands! Well done, and good luck. We look forward to following the story.
Ha ha! I had hoped to be left alone for a bit longer as I'm saving them loads of money by diy-ing! I'm mightily impressed that - with all their more seriously ill patients on multi drug prescriptions - they have taken the time and trouble to chase me down for my paltry 10 quid a month B12 ampoules. It almost feels like it's a matter of principle rather than genuine care, but surely not... will definitely keep you posted!
You have all my sympathy. I self treated until I saw nhs neurologist. I worked out I need daily jabs or my neurological slipped back. Neuro agreed as did GP who were both amazed at my improvement. GPs since sadly retired. And 6 years of this treatment I am hugely improved.....now able to do crafts as my tremors have improved so much. I cannot reduce.....if I do my tremors increase and my feet go numb. I've tried repeatedly.
However my nhs b12 treatment has been stopped......initially they told me until my nhs neurologist reviews me in April. I run out of vials this month. I sent them the b12 new guidelines & hey presto they are now chasing confirmation from. Neurologist.
It's such a nonsense. You'd think the transformation of my mobility etc would be enough for them.....
Doctors have a genuine fear that b12 injections at this level will cause harm.
What I do know for a fact is removing this treatment definately does do harm to me....and have told them so.
They are a lovely GP surgery but so often their hands are tied by restriction imposed on them from above including ICBs who've had a big part to play in since they came into being in 2022.
I've just seen a neurologist after waiting 8 months. She knows I am having B12 injections but didn't ask about frequency. I asked if I should just continue as I am and she agreed, and doesn't want to see me again as she seemed to think B12 deficiency explained my symptoms. Maybe her report has triggered the message from my surgery...
Probably. Would've been helpful if she could've supported you with the frequency......does she say anything in her letter? GPs still think 2-3 months.....arbitrary and nonsensical!
I can't see her letter in my notes online unfortunately, so any comments from her will have to be a surprise at the appointment. I didn't tell her the frequency as she didn't ask and, although not dismissive of B12 d, she wasn't wildly excited about my progress either. It seemed all about ruling out other conditions. Maybe I missed an opportunity though 😕
On the other hand she hasn't limited the frequency either....😊
Yes, that's a positive point!
I think you can ask to view the letter at GP surgery if it's not available online.
You might need to write a signed formal request to practice manager asking to see it.
Thanks for that, good to know should I need to see the details.
Seems B12 patients are just as badly served as thyroid patients. Doctors are scared of thyroid hormones as well. It makes you wonder what they are learning at medical school.
Afraid so Sparkling Sunshine. I have had my b12 jabs stopped twice this year by the 2 GP Practises I joined!! Had to change as first one renegades on the agreement to do shared care for my thyroid treatment. My neurologist will hopefully get b12 jabs back like last time.
I'm finding it really worrying this new trend of just stopping a repeat medication whilst it's reviewed. Never used to happen before.....you'd get reviewed with the specialist and decision made....hopefully with you.....before meds were changed. Its scary...never mind just harmful stopping noth types of treatment.
.because I can't go without either.
Wondering where this trend/new practise has come from?
It came in in 2010 when the tory/LIbDem coalition demanded doctors spend less money. Some doctors love demonstrating how powerful they are so went along with it. The Nice revisions from March are much less restrictive. See pinned post on the right of this page.
Thanks everyone for your help. I haven't even managed to make an appointment yet. Our new improved system for non-urgent appointments involves completing an online request form, but - you can only do this during surgery hours. Otherwise you are directed to urgent care pathways only. Because why would you want to plan ahead and organise things on an evening or weekend, when you have time?? Possibly designed by a Mr F Kafka... 🙄🙄🙄
Yeah......same here....probably national. Last surgery u also 30mins window to complete the said form within the designated sole time per day......8-8.30 or no joy. Perfect for families, workers and people doing shifts! 🙄🙄
Hello there, I hope you can manage to complete the online form early, as our health centre switches it off as soon as a certain amount are received. I do get a reply though, which is something x
" Switched off " !!!???
That's disgraceful and downright dangerous !
Patients arent necessarily the best or most reliable arbiters as to whether their condition is' routine' or in fact urgent.
The elderly generation especially, who don't want to "bother " the doctors!
Jeez, you need to be tough to be ill these days..!
It just gets worse! Wow!!
There is no scientific or rational reason for the amounts prescribed other than clinical data from Chandy that some people improve on EOD.
There is no scientific or rational reason not to inject more often than EOD and many rational reasons to inject amounts and number of times per day that have the effect of improvement.
Thanks Wizard. I will be happy if I can just keep my prescription for eod at the moment. It's definitely working. In time I might get to a point where I am willing to trial more frequent injections, but the mental and physical effects of my deficiency have eroded my usual bravery and left me more anxious and fatigued, so even though I'm greatly improved I can't contemplate it right now. Call me a wuss!
I've been told high daily dosing can cause higher heart rate, diarrhoea and a red face. Is that true?
I am not one of those that advises I share. I take 1 mg 5 times a day of Methyelfolate with no observable side effects other than improvement.
I will do a trial of eliminating it to gather data at some point.
I also do not take advice and do my own study and make my own conclusions.
I do appreciate those that share although I understand what they experience may not be applicable to me.
Totally respect that wizard. Thankyou for writing what u do.
You are most welcome.
Don't know about daily dosing, but I get a high heart rate and red face when having to deal with some doctors ! 😡
🤣😂😂😂😂 Me too!!
Hi Waveylines
I am on a symptom free plateau of 2mg methylfolate and 4500ug Hydroxocobalamin daily.
My heart rate is low normal, no diarrhoea and no red face … except after my skipping exercise perhaps!!!
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Thanku! I'm convinced it's my thyroid levels out of whack. All since the wretched Amiodarone post op. Slowly improving.....but still only 80% of my usual dose. And this means I can't really exercise as I crash next day. Only gentle walks locally. Not great.
To check out. I tried missing a b12 injections. Can't see a difference in HR. And today just done 1/2 ampoule to trst her theiry out. . I referred GP pharmacist to nice b12d guidance in which it says nothing about HP!
I'm wondering if she's confusing treatment for hypothyroidism? Though when I googled it (like she did) sure enough palpitations side effects popped up. The things you have to do to appease the gods!
My neurologist is happy with SI every 10 days but believes that weekly would present an increased risk of heart disease. She does seem very smart and switched on (John Radcliffe hospital). Of course the GP does nothing, he says my 3 loading doses in 2016 cured me, so I just order from Germany.
Seems to be very unlikely, linked to increasing blood volume and only a risk in the early stage of treatment. I guess if we survive loading doses we should be ok!
She's basing it on studies looking at long-term use (ie not loading doses) - sorry, it was a conversation within my consultation, so I've no reference. She implied it was a slight effect and could be proved wrong by further research. I don't think she has an axe to grind, she seems to agree GPs are idiots about this and wouldn't suggest caution unless she felt it warranted.
There is no known yoxcity effects of b12 injections or tablets. The research for high dose frequency b12 injections causing a heart problem is supposition. And certainly weekly poses no problems. They're more worried about people who inject daily like me.....but in reality there's no proven evidence this IS an issue as there is no known toxcity level! What worries me about medicine is how hearsay becomes accepted as fact. Eg people with high levels of b12 (not injecting/supplements) is linked to heart disease. But why do they have a high level in their bloods? Whats the cause? Is it the body compensating in some way to counteract whats hsppening? This does not equates to people injecting B12 will develop heart disease. Its a false assumption. We are very familar with assumptions in the thyroid world....as we all know to our cost!!
Perhaps your focus on the EOD prescription is the best course of action right now.
I will not call you a wuss! I will call you someone who is working very hard on an issue that has a high degree of difficulty and emotional turmoil.
Very well put, WIZARD, thank you. This year has been gruelling to say the least, and the surgery only knows about 10% of what I've experienced as I know they wouldn't be able to help me or even understand. I am everlastingly thankful for the knowledge and support of everyone on this forum 🙏 for helping me to feel halfway human at this point.
Awww hang in there. ....and you are doing the right thing educating yourself.....thry calll it a patient expert. We are meant to be welcomed in the medics world but that isn't always the case sadly....
Hi,
"I'm trying to find info on how the clearly inadequate 3 month interval for injections became established"
Tracey Witty of B12info.com has blog posts about this.
from 2016
b12info.com/the-tanks-empty...
I think she has written other blog posts that mention the issue. You can leave comments under her blog posts.
She's been campaigning for many years to get injectable b12 available over the counter from UK pharmacies.
b12info.com/a-decade-of-cam...
Have you read the new NICE B12 deficiency guideline - published 2024?
To my mind it puts too much emphasis on treating people with high dose oral b12 as an alternative to B12 injections.
PAS article on new NICE B12 deficiency guideline
pernicious-anaemia-society....
B12info article on new NICE B12 deficiency guideline
b12info.com/first-nice-guid...
If you have time and energy, I think it's worth reading these as well...
"NICE Anaemia - B12 and folate deficiency" - published a few years ago.
There are differences in the guidance between the two NICE documents.
"BSH Cobalamin and Folate guideline" - published in 2014
If you haven't already...I suggest tracking down the local B12 deficiency guidelines used by your ICB (Integrated care Board) in England. In Wales/Scotland it's Health Boards.
If you can't find local B12 deficiency guideline online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
Thread I started that discusses recent increase in UK forum members having B12 injections stopped or swapped for oral B12.
healthunlocked.com/pasoc/po....
Thread about Patient Safety, has links for those struggling to get adequate B12 treatment in UK.
healthunlocked.com/pasoc/po...
I'm not a health professional, just someone who suffered for years from unrecognised and untreated B12 deficiency.
It was arbitrary Myoldcat. Not medically based but appeared on nice guidance a few years back....I think around 2016 can't quite remember. There was outrage as no science evidence behind it. I think NICE thought there should be restrictions!
The latest guidelines has turned this round to some degree but sadly I heard a GP referring to standard treatment as being 2-3monthly injections on a post just yesterday.....& he is more enlightened then most.
And a lot of doctors think no one should be injecting more than alternate days and not even that long termly. They think you will fill your liver stores withing a few years and there on in you will be fine. However that supposes (yes that again) that we only ever develop a problem with uptake from our stomaches but there are mutiple other areas where it can go wrong. Eg b12 is recycled repeatedly in the body.... that's a very complex process. So if that goes wrong at any point you won't be able to retain as well in your bloods so need more frequent jabs. However there are no mainstream tests to check all this out. Instead we get supposition and guessing.
I think a lot of poor reasoning comes from medicines obsession to simplify everything down to linear treatment action plans to make it easier for doctors to manage and a fear of costs. This may work for some but not for everyone. And of course discourages doctors to analyse and reflect more.....many of whom dont have the time and over time these pathways/guidelines have become gospel.
In just the past day or two I posted a link to a recent (2024) article by Dr. Bruce Wolffenbuttel et al. The article goes into some depth in explaining that none of the B12 deficiency treatment recommendations are based on research. Also a focus is that treatment should be every other day or even daily, depending on what the patient needs to control and reverse (until there is no further improvement) symptoms. Then the frequency of injections can be very slowly, very carefully, titrated, in order to avoid a flare up of symptoms. I suggest that you give the article a look. It might answer the questions you are asking. Bruce Wolffenbuttel is an endocrinologist in Holland; Ralph Green, one of the coauthors, is a hematologist at the University of California, Davis, in the US.
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