B12 shots for a year still feel like poo

[SilverShamrock]

Hi. I was just wondering what other people's experiences are. I was put on 3 monthly B12 injections a year ago after readings of 165 and then 164 after a month taking it orally. So presumably I can't absorb it. I have quite significant brain fog. I don't feel real. I forgetwords, feel slurry, struggleto concentrate. I also feel slightly drunk or sedated a lot of the time but the forgetting words bothers me the most I think.

I have finally made an appointment for the end of the month to see why I still feel like this a year later. I'd say I only really feel 20-30% better and that's on a good day. And I feel no better on 9 hours sleep than 5.

Can I ask how quickly other people did or didn't feel better?

Is this normal? If there is a normal.

How do people cope with the brain fog??

Thanks 😀

[Nackapan]

Perhaps ask to change to 2 monthly (bnf guidelines.) Or even more regularly to see if it makes a difference? I'm 7 months in and although alot of symptoms gone they do make an appearance at odd times and I've a long way to go yet. I'm presently on 2 weekly b12 hydroxocobalamin injections. Am loathed to change until I'm able to function at a reasonable level. Not easy initially to negotiate with surgery .

[wedgewood]

Sounds as though you need more regular injections . Try to get them increased . We know that PA patients need varying amounts of injections .We are all different . I’ve been forced to self-inject to keep well ( weekly) . . The new guide lines of this year mean you should be able to get an injection every 2 months . Try that to start with .You also need to supplement with folic acid . Best wishes .

[Dickydon]

Sorry to disappoint, but I feel similar to you almost daily. And I’m a type 1 insulin dependant diabetic too so I have that on-top of pernicious anaemia, plus very distracting tinnitus; and a load of other issues. I rarely dwell on it all though, but feeling more down since loosing my wife of 25yrs four months ago it’s a struggle trying to be bright and cheerful. My B12 is due soon as well, it helps for a day or two but then back to how one usually feels.

Good luck

[GastritisB12]

Sorry to hear you are still feeling unwell. Your foggy/drugged/not real symptoms sound like mine. Even after sleeping ok I still felt this way too for around 4-5 months, it was really disturbing.

I had my 6 loading shots in December 18, felt better for 2 weeks then felt worse again, GP wouldn't help so I took matters into my own hands and went to a private GP who gave me another 10 loading doses after which I felt a lot better but the half-comatose feeling didn't go away. I then went back to that GP for a shot a week later, then a month later I got my 3-monthly NHS shot after which the drugged/foggy feeling faded away, then a month later I self-injected my first B12 shot. So I am essentially on monthly shots now.

Might be worth trying more frequent B12 shots?

Its worth checking your folate and whole iron panel too. My folate and iron were low too I had to take supplements for those too. I took folate 5mg for one month then reduced to around 0.5mg, I am still taking iron occasionally.

[Catman1]

I agree with the others. I personally SI monthly and know that some do so even more frequently. I initially started injecting weekly and it was after about 3 shots that I began to feel slightly more “normal” again. After 6 weekly shots, I started SI monthly and have seen a significant improvement in quality of life. Everyone different tho but it definitely sounds like some more frequent injections initially would be worth a try

[SilverShamrock]

Thank you to everyone who has replied. At least I know it's 'normal' to not feel a whole lot better. I did have low vitamin d and folate at the time but I presume they were fine after being rechecked as they were never mentioned again. I didn't feel any better from the month they had me on vitamin pills.

I have a five year old, so it's so hard not having the energy to play with him as work sucks most of it away.

On the plus side, my sense of taste came back straight away!!

[SilverShamrock]

Update: saw the doctor today who gave me a top up injection and she has increased the dose to every 8 weeks. She also thinks there's an underlying condition so is checking my bloods again. Oh, and I have rotator cuff tendonitis too. Send wine!!!