Does anyone else start to feel so ill when they are nearly due a b12 injection? My injection is the end of may and I’ve already started to feel so poorly and malaise. Does anyone else feel like this ?
B12 : Does anyone else start to feel so... - Pernicious Anaemi...
B12
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Elleeee
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Sounds like you need if sooner?
It's worth trialling
Especially if they are 3 monthly. I dont think many cope well on 3 monthly
Yes they are every 3 months. The uk don’t allow you to have them any sooner than 1 every 3 months 😞
You can have every 2 months. I went to my Gp armed with print outs of evidence and she said that if I went to all that bother I must feel unwell so put me to 2months. No way could I go 3 months. Just demand x
Ok thanks very much I will definitely be more demanding from now knowing all this x
Ask your doctor to look at the British National Formulary (BNF). The advice regarding hydroxocobalamin was changed last year. Now it doesn't say 'every three months' but 'every two to three months'.
You can have them sooner, I have Crohns Disease and I have my B12 jab every 9 weeks. I start to get neurological symptoms about week 8. I get pins and needles and extreme fatigue. My GP agreed I could have the injections @ 9 weeks. Ask your GP for it sooner.
UK guidelines changed about a year ago to say that injections can be given every 2 or 3 months so it would be worth asking your GP for more frequent injections if you’re currently on 3 monthly.
Oh really i didn’t know that, Thankyou i think I would feel a lot better if I could get them more frequent
You may have neuro symptoms and accredited them to other reasons. Ihad terrible headaches,never made the connection until I got b12jabs then they dissappeared. Tinitus, low mood, all improved with treatment. The doctor never asked about these symptoms . I never made the connection. Push for 8weekly, nothing to loose. Good luck.
I had that experience when I first started on B12, then had to adjust the frequency to sooner, I found that even a week sooner helps a lot!
I’m not able to get it any soon here which is so frustrating
Can they dispense every 12 weeks instead of every 90 days? that's still 3 months protocol
Maybe I could ask, I just want to know if it’s normal to feel this L everything im due an injection
Yes best to find out the root cause with your doctor as there could be so many factors lead to ill feelings
I'm in the UK and Gps can actually prescribe for each patient individually.
I'm presently on 2 weekly. I'd like them further apart but have tried 3 weekly then gone back.
I'm still not function ing at an acceptable level but conti ue to make slow progress .
I’ll be asking my gp soon as about this as every time I’ve asked they have told me I’m only allowed one every 3 months. Thankyou for this information I’ll definitely be following it up
Nackapan, is there any criteria laid down for this more frequent injecting? Or do you just have a good doctor?
It was showing the bnf guidelines she read online in appointment of every other day until further improvement then I went from that ti weekly then to 2 weekly at my own pace.
Did have the backing from a neurologist to continue.
My doctors were stubborn and I had to go through all 6 at the practice. It was a struggle.
I'm on no other medication and b12 is the only thing to date thats helped.
I've been offered all sorts! And trialled 2
I don’t have any of those just feel generally unwell.
yes, I did but the consultant prescribed more frequent injections. oh what a difference it has made.
I remember asking my gp a while back for them every 2 months but they said they are only able to give them every 3. I’ll definitely be asking if they have changed their protocol ! Thankyou everyone
Yes I'm the same told the doctor and they moved forward for me to every 8 weeks as was on every 3 months,but now with corona virus don't think they will do mine due 6 may.
Mine is due the 27th may, I’m hoping to be able to have it then, I think they are still able to do things like this with what is going on. Ring and ask
Hi Elleeee
Yes, ask your doctor for more frequent injections. They can only say No; and if they don’t, great.
But if they do say No, you might like to consider self-injecting. Move things onto your timetable, not theirs.
It sounds like a big step, and we thought it was at first, but we got lots of help from within the group as to how to go about it, and where to get the fixings, and so on, and now it’s just a little thing we do monthly.
A little thing with enormous benefits.
And yes, your body tells you when it needs a jab, because you lose all your energy, you feel like [that brown stuff], and brain and body together make you feel like a car that’s well overdue for a service.
In our case, we had no choice but to SI, as our Gloucestershire practice isn’t even following the wrong-headed Gloucestershire recommendations, let alone the more sensible NICE ones; and even if they were, two-monthly would still only be half the frequency we find we need.
So, ask first; and if no go, at least you can have a Plan B. Or as we call it, a Plan B12 😀
Please talk to your GP about what happens to you during the three month gap. Keep a log of the date you had the injection, plus how you feel afterwards, then the date you start to notice your deterioation, then date logs of further deterioation. Many GPs do not get the impact at all. From this log you can point out when you need another injection, BEFORE the decline starts.
Though the guidelines are there, the frequency is set arbitarily, so if you need them more frequently, ask your GP. Not to give them risks damage to your body......no GP wants to take liability for that. You may need to politely point that out.
For me its everyday, though I try periodically to see if I can go longer but currently my tremors worsen if I do that. My GP has been willing to let me self administer daily for the last 2 years. As I self inject it costs them peanuts. I have no idea why it needs to be so frequent but it is what it is. No point pushing yourself to go longer and becoming ill because of an arbitary standard. For me it took a long polite battle over a number of months with much hoop jumping so be prepared for that. Any excess B12 you excrete.
At the end of the day if you need them more frequently & your GP wont do it despite your efforts your choice is either to move to a B12 friendly GP or self inject.
I have mine every 6 weeks. You would need a blood test just before your B12 injection is due to test that your iron level is depleted, as it could be another underlying cause for your symtoms. I self inject since pandemic and i had to insist on needing it every 6 weeks but the blood test proved it. Have you considerd topping up with tablet form to supplement your dose. Holland and barrett online supply them, just a thought. Good luck though.
Hi, I can’t take the tablets as my stomach doesn’t absorb them so Only injections work unfortunately
Yes, I think we all do, and it is horrible. I am trying to hang on at the moment until the 12 weeks, but think I might have to inject before then. I keep wobbling and nearly falling over and so weary. Good luck, keep your chin up.
Thankyou, yes it is such a horrible feeling , can I just ask you all how old are you ?? I am only 21 I was diagnosed with pernicious anemia and a level of 70 of vitamin b12 in my blood. (The lowest they had ever seen) still to this day no one has ever found of the reason or cause of this. I’m not a vegetarian and no one in my family has this
That is young to be diagnosed. I was 25 when I was diagnosed (nearly 78 now) mine was related to being diagnosed with ulcerative colitis. So my stomach now has no intrinsic factor to absorb B12 so tablets or anything oral will not help. Are you having B12 injections ? So many surgeries are not giving them now, and that is not right. We need those injections. Have you got any other medical problem that would account for your Pernicious Anaemia? That is awful for you to have it so young. Has your surgery stopped giving B12 injections? As you have probably read on here, so many of us are self injecting now. Take care. We are here for each other remember
No I don’t have any other illnesses or anything other than this, I am healthy. Thankyou very much
Oh that is good, and as long as you can have your injections. Is your surgery still giving them?
I was diagnosed at the age of 19 with no other illnesses as well. Doctors found no reason as to why I developed PA. They said it can be random. I have to self inject weekly to not get horrible symptoms.
My gp diagnosed me with pernicious anemia even though both tests I had done for it came back negative, so strange ! I am very strange haha
I was diagnosed at 17 with a level of 70 too! I’m 32 now and have needed injections intermittently over the years, but at the moment once a month. When I was first diagnosed I had them every second day for 3 weeks, then once every 2 weeks for a month, then monthly, then 3 monthly! No cause here either other than childhood anaemia (iron). My doctor just said for some reason my body doesn’t retain the b12. I eat super healthy and eat meat so he couldn’t find a cause.
I think we all need them at different times. Everyone is different and somehow a lot of GPs do not understand. When I was first diagnosed, I had them every day, then a bit longer until I had them every three weeks and then suddenly it was changed to three months. Your own body tells you when you need them. If only they would listen to us it would be really good.
Yes I do the headaches and confusion gets so much worse and I break out in little bumps like hives when I'm due mine, but feel on top of things when I get it
Mine is due in 2 weeks and I feel rubbish now.
I’m currently on injections every 10 weeks but I think I actually need them every 8 weeks. I’m going to mention it to the nurse as she suggested changing from every 12 weeks to every 10 weeks so she seems to be pretty flexible on it. I don’t think I’ll be able to get this one any sooner though now.
Elleeee - I start to feel achey, tired and tender to swallow. I never put this down to B12 until recently as always focused on the neuro symptoms. These disappear after injection.
My breathing goes awful . I.m tired and small hills feel like mountains i feel your pain x
I have three monthly injections but GP allows me to have them 8 weekly....I also buy VitB12 from Germany and have one inbetween, so I get one every 4 weeks, but I did not tell my GP. Wishing you well xx
what kind of neurological symptoms? Sorry to interupt 
I feel bad at 2 and half weeks, the tiredness is awful my body hurts and I’m a mess but I cant get mine any sooner than that. My gp has not taken any notice to the new guidelines and my b12 results are fine so to her I don’t need them any sooner so I will be self injecting next month.
It’s a lottery with what doctors you get.
In a word....YES... & now they are stopping injections in a lot of surgeries including mine. 😟
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