I'd just like to ask about the people who feel that 3 monthly jabs aren't enough. I was having them every month when one of the nurses started kicking off about it saying no-one has them every month and I couldn't have any more until I saw the doctor, who was confused about the problem, but agreed, per the nurse, that they'd knock me down to 3 months. I barely started on this schedule when I got notice of eviction, but the first 3 month gap was awful. Moved twice in 4 months to a different part of the country and it was 9 months before I got my next one. I was on my knees and they were reluctant to do it at all due to "confusing" medical notes.
Sorry for all the waffle, but the point being, some have said that the 3 monthly are no good as they don't really last very long, but I feel like they actually do nothing now as I'm so depleted. People who aren't getting enough, do you feel ANYTHING when you get the jab or does it just not touch the sides?
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Sorry to hear that you're struggling to get adequate treatment.
Many UK forum members do struggle to get adequate treatment from NHS and some turn to treating themselves as a last resort. There are threads about this on the forum.
There are two patterns of treatment mentioned in BNF and NICE links
1) for those without neurological symptoms
2) for those WITH neuro symptoms
If you have neurological symptoms, make sure GP has you on the treatment pattern for those with "neurological involvement".
Have a look at these links about UK treatment for B12 deficiency
It's vital to get adequate treatment or the risk of developing permanent neurological damage increases. In severe cases inadequate or delayed treatment may lead to spinal cord damage.
One piece of advice I usually give to UK forum members is to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board.
If you can't find your local B12 deficiency guidelines online or on this forum (some have been posted here in past) then you could submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them. Put FOI or Freedom of Information in search box on ICB/Health Board website which should take you to a page explaining the process.
The reason I urge UK forum members to do this is that
1) GPs are likely to refer to local guidelines when deciding how to treat patient
2) Some local guidelines are unhelpful and I think it's good to know what you're up against.
CCGs (Clinical Commissioning Boards) in England were replaced by ICBs in July 2022.
I think this will be enough for now, thanks so much! I'm afraid of coming across as a "problem patient" so I'm just going to bide my time a bit. I've tried to make jokes with doctors before and seen them frown and scribble things down, so I think there's already dodgy notes on my file. I'm sure loads here can empathise with this! Anyway, again waffling... Sorry!
I'm from the uk and live in the US. As much as I appreciate the nhs I do feel that it has its drawbacks and one is thinking that they are lord and master o er peoples health. U have to advocate for your own healfh. I would arm myself with knowledge and a script when u see the do tor or nurse. Ie the consequences es and burden on the nhs if your situation gets worse and the little cost of thd b12 injections to the nhs. The thing to remember in your own head is nhs like politicians isbthT they get paid from tax payers money so they r paid by you. U r not winger!
My Mum has three monthly jabs. She feels absolutely no different! She has on occasions had a blood test within a few weeks that shows that she's deficient again. She's on permanent iron tablets, because she gets so anemic if she stops them and is always tired, losing words, off balance etc. I have tried to explain that she needs more frequent injections and have even offered to jab her if she wants, (I self inject weekly) but she's having none of it. Apparently at 88, she's too old to do anything new and the doctor knows best! ☹️
That’s tough and I totally get it being a daughter in a not too dissimilar situation. All I can say is at 88 she’s had a good innings - my dear mum is not far behind … if she’s happy in herself then accept that as to try to change her opinion is likely to do more harm than good to your relationship at this stage of her life. A sublingual supplement may be the compromise. Best of luck and do look after yourself.
I have mine 3 monthly and it doesn’t really help . I need to find out where in Germany I can purchase the solution as I would willingly buy extra to help myself . Does anyone have the details plz ?
My doctors haven't been great, so I get a jab once a month at a local pharmacy - costs me £30 which I'm happy to pay, and they seem to be enough for me at the moment. Might be worth looking into?
I was no better after loading doses n 3 monthly injections. I asked a doctor if I could up this to 10 weekly. He agreed but said if I was still exhausted after this then he'd need to look for other causes. I was still unwell so had lots of blood tests where nothing else flagged up.
I asked another doctor in a phone appointment, for 8 weekly injections as per NICE guidelines or teach me to SI. She was angry and said they wont sanction SI. neither could I have 8 weekly inj. She put phone down and she said she was reporting this to the Practice Manager.
She phoned me back very quickly saying she would agree to 8 weekly, if, I promised not to SI.
I can only think that she had taken a quick look at the guidelines and discovered that 8 weekly inj. Are allowed.
I have definitely felt better on 8 weekly but by four weeks after inj I am flagging. Doctor had sympathy with that but stressed that 8 weekly is the absolute most they can give me.
Since then this doctor has spoken to a Pharmasist who says he knows of no safe product for SI.
This is ongoing.
I do not know of other condition where a patient is told that a health centre can do nothing more to help a patient. Correct me if I am wrong.
Sounds a nightmare. I've never had problems with the doctors (with this particular issue), I always find it's the nurses who kick off and don't want to do it.
My GP found that I had functional B12 deficiency by getting my methylmalonic acid (MMA) tested when the B12 injections weren't stopping deterioration. Acting on secondary care advice, she put me straight onto 3 injections a week.
The nurses never managed to do more than 2 a week (too busy) - but this regime started to make a noticeable difference. Some of the nurses were reluctant, some suspicious (!*??) - but two of them recognised how ill I had been and knew it was now working. Yes, I get what you mean about the nurses and some were a nightmare. I tried to avoid them where I could and my GP was very supportive throughout. She was really pleased with my progress and so wanted the injection frequency to continue - so I could regain as much as possible.
Unfortunately, after six months, I had a return of symptoms which then prompted secondary care appointments, tests, scans etc. which led later to self injection. I began with every other day, then two a week - then, after three years, my MMA finally dropped down to mid-range. Result. Lately, I have tried hanging on for an extra day -but still it doesn't work well for me. So I'm on injections every three days, even now. It's mainly okay.
My cousin, though, is fine on an NHS injection every 6 weeks, which her GP is happy to give her indefinitely.
Thanks for your perspective. When I had my loading doses (3 a week) I couldn't believe the difference in how I felt. I didn't know I needed B12 till I had blood tests at the doctors, so I had no idea!
I didn't even know there was a B12 to be deficient in !
Then I thought that you had your 6 injections and that was that - back to normal.
The nurse told me, when I asked at injection 5, that I was to have an injection every 3 months, probably for life. That is when I realised perhaps I needed to look up B12 !
I think that I would take your positive response to your loading injections as a good sign that you have the potential to improve rapidly.
Sleepybunny is right - there is a different treatment regime for those with and those without neurological symptoms. Nerve damage repair does require more frequent injections and takes time.
You asked "....do you feel ANYTHING when you get the jab ..? "
I actually did not feel anything at all until my regime was altered, and I'd had 3 months of 2 injections a week : on 23rd December 2016, I finally felt the needle "touch the sides" - not pain, just sensation. Feeling.
It honestly felt like a Christmas present !
Everyone noticed the improvements: me, partner, friends, family, employers, work colleagues, nurses and my supportive GP.
Later improvements have been harder won - I believe the correct treament for an individual at an early stage is crucial.
Find out what that is for you, to regain your health and to keep you well - and get it !
Thank you! I think I know what works for me (monthly) but I don't want to start kicking off yet. They were reluctant to do anything at first due to "uncertainty" about the frequency needed. Anyway, felt like I could deal with anything with monthly, I feel now like I felt before I had anything (not helped by the gap, of course).
It's pretty much just one miserable nurse who's messed up monthly for me. I'll see how it goes for now..
The plan for me, once functional B12 deficiency diagnosis was confirmed, that I start with 3 injections a week until no more improvement could be had (as neurological symptoms) -and then one injection a month. This made me deteriorate quite quickly.
I think the lifelong "1 a month" frequency was decided by whoever my GP was in contact with regarding my treatment - a consultant of some kind. A locum haematologist lter decided that I should have no more than one every two months, based on blood test results (which obviously would have been very high, whether total/active B12 measured ).
If you are usually able to manage well on one a month, it could be that after such a long break, a reloading dose (usually six injections) is required to kickstart you off again.
I understand. Also good to feel that a GP has some idea of who you are.
Just hoping you will be okay.
There is always a temptation to prove that undertreatment doesn't work by demonstration. Deterioration due to desperation. Many of us have felt that way when not listened to.
Better to have that conversation as soon as you feel able. Take someone supportive with you as a witness and to back up your findings. Decide what you want to say and what you feel you need. Asking won't make you appear difficult.
Let us know how you get on, whatever you decide is right for you.
I am new to all this but after 6 loading doses my reversing symptoms as they are called (ie when your body kick starts big time with a flood of B12 which is uncomfortable to put it mildly) were awful and I felt really rough.
I decided that I could not wait 12 weeks so I went to see a private PA consultant. He taught me to self inject and I order B12 from Germany at around 90p per dose and the consultant is my backup for B12 but at £5 a dose.
I understand from the fantastic feedback on this forum that I am now making good progress but only because I HAD to step outside the NHS and I know I am extremely privileged to be able to afford to do that.
I find it incredulous that NICE are so short sighted because B12 deficiency is as cheap as chips to treat … but being cynical 🤨 that may be the root cause of our problem.
I hope you find your solution and thank you for sharing your experience.
You will get there - what I realised very quickly is that this is one of those situations where the patient needs to be in control. Keep posting and celebrate the little wins - they are important.
What's with these meds who kick off about frequency of B12 - My reading was down to 77 but I had a dreadful fight with nurse and gp and in the end had to go to a consultant who immediately order more frequent injections - and I could say what I needed!!! - I now have b12 injection every 10 days. It is so good - and my advice to you is fight for what you know you need.
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Struggling with 3 monthly injections.
3 monthly injections 
No clinical evidence for 3 Monthly maintenance
3 Months of EOD B12 Injections
GP will only agree to 3 monthly injections unless I have a blood test showing low b12 levels.
