Vit b12 deficiency

[Neighboursfan]

Hi all, I’ve just discovered I’ve got low vit b12 levels, after going to gp with extreme tiredness and lethargy, which I had put down to the loss of my father. I am about to start the injections and was wondering what I should expect. I’ve read up on side effects of them, and wondering if many people got any side affects and how painful the injections are?!

[JanD236]

Personally I’ve never experienced any negative side effects from the injections. And the injection is just an injection. Once you start feeling less tired and lethargic and indeed so much better all round I doubt you’ll be worried by the injection! It’s well worth it.

[wedgewood]

The only side effects I had were wonderful — almost complete disappearance of horrible symptoms, when I got regular enough injections. Since self-injecting , I have no pain at all . When a nurse did it it was a bit painful , but nothing to complain about. I inject into my thigh , which I find a better place than the arm . Also much larger area to inject into. using both thighs . ( needs to be into the outer middle third of the thigh )

[Neighboursfan]

Thank you, that’s a relief! I’ve been reading other people’s effects, and I then started to get worried! Just can’t wait for the tiredness to end now. Thank you.

[Cherylclaire Forum Support]

The only side -effect from B12 that I can think of is that some people get acne-type spots as the injections start to work. This symptom gradually goes away in the vast majority of people and for some people (or maybe that's only me and deniseinmilden ) even years later if they have a bad blip, the spots come back on recovery as if starting again from day 1. I actually got to like my spots because they guaranteed that the B12 was getting into my system ! Except the ones down my ears- never learned to love those.

The injections can make you feel worse before better, it's true, but give it a chance to put right what may well be many years of gradual damage. A few spots are a small price to pay to ditch the exhaustion and other symptoms. Some take longer than others to go so don't expect an overnight miracle.

As for the injections themselves, I couldn't even feel them, or whether the nurses had done them at all for the first 9 months -I always had to ask if I was done yet. I was overjoyed when, just before Christmas, I actually knew that I was being injected ! Even then, it was a sensation not pain at all.

Have you had your folate and ferritin levels checked too ? These quite often are below-range / low-range with B12 deficiency - so ask for a blood test next time. It can take a while to get these back to normal too.

Best of luck and hoping you feel better soon.

[Neighboursfan in reply to Cherylclaire]

Thank you, I felt relieved at first to know that the tiredness etc will be going! But then I read other people’s reactions! Looking forward to feeling normal again now! Yes, my folate was low too- but that’s now come up to normal levels on its own. Thank you.

[Cherylclaire Forum Support in reply to Neighboursfan]

I don't know that there is documented evidence of adverse reaction to B12 itself.

Anaphylactic shock is a remote possibility with injections, but would be identified immediately on very first one.

I'm guessing that what you are reading, and what is concerning you, is people's varying B12 deficiency symptoms when being undertreated for this condition.

I think there is a problem with flooding a system with B12, one that may have been depleting gradually over years, and then withholding the B12 for 3 months. This is just my opinion, since it was during this period (the 3-month wait) that I became so much worse. The guidelines have been revised to read "2-3 months" - in recognition that the 3-month gap is too long for some. This revision, although having been put in place for a while now, does not seem to have filtered through to frontline treatment in many GP practices. You may need to draw their attention to this.

Hopefully, you won't have to. Some do well on 3 monthly injections, some have GPs that are well aware of the changes in guidance, and the best GPs will treat what they see in front of them !

A good caring GP with experience will do that, whether they have been taught anything about B12 or not in training. (Mostly not, but if we can access the research information then so can they.)

I hope you have a good GP, and if you do, stay with this one: they will soon see what you look like when improving or deteriorating and can work with your advice on the less visible symptoms to get you the treatment that will help you, whatever that frequency might be. It helps enormously to have that mutual trust.

Don't forget, most of the people who have no problems stop posting on here, because they have no burning questions to ask. When you start feeling better, remember this - and leave a post telling the newbies ! All the best.