Fed up

[leasparkles]

Hello..so got b12 deficiency dignosis last Xmas and am having injection every 3 months..with the last one by the time the injection came round I was literally on my knees the symptoms were so bad..it took well over a week for the injection to take any effect..then I started to feel little spikes in my energy levels but almost like I was being drip fed bits of energy..but then it would dip again..since having these injections in January I still don't feel recovered..there are improvements but they seem so temporary..my doctor says it's likely PA that has caused the b12d but I've never actually been tested for it..I personally want to know the reason behind the b12d but the gp doesn't seem that interested..just a bit fed up as was hoping treatment would mean I could go back to the old me.. Full of energy and life but this hasn't happened..maybe it needs more time to work..any advice on any of what I've said would be great..im just having a bit of a moan tbh lol

[pvanderaa]

If you haven’t already, start a logbook of your symptoms and measure the severity daily. Start building the evidence your GP will eventually need to move you to 2 months and the to monthly injections.

You may also get fobbed off as a total hypochondriac as many of us who have asked for more frequent injections been treated.

You also have the option to self inject. This is initially a pretty scary idea but after going there I know of no one who has ever looked back.

Are you taking folic acid and a daily multivitamin to support the B12?

[leasparkles in reply to pvanderaa]

Thank you for replying. I take liquid iron even tho my iron levels are "normal" as I find it can sometimes help me with the exhaustion..I believe this has other vitamins in it but not sure folic acid..is this something I should take along with the b12 injection? Keeping a log is a good idea thank you x

[pvanderaa in reply to leasparkles]

The multivitamin is for minerals and other metals that metabolism needs and tend to run out as the body gets B12 and everything kicks into high gear.

Folate is the raw material that feeds the reaction where B12 is the catalyst to process off homocysteine. Google methionine loop for a picture.

[fbirder]

Unfortunately, there's no definitive test for PA. If there is no other reason for your deficiency then PA is, by far, the most likely explanation.

You could try asking for a gastroscopy. If you have PA then you most likely have Autoimmune Metaplastic Gastric Atrophy, which a gastroscopy will show. But it's a lot of unpleasantness and it wouldn't change your treatment at all.

Talking of treatment. Ask your doc to switch to injections every 2 months. The recommendations in the BNF changed earlier this year, from 'every 3 months' to 'every 2 to 3 months'.

If that doesn't work then you could try for more frequent jabs. But you may have to think about self-injecting.

[leasparkles in reply to fbirder]

Thank you for replying. Yes doctor said PA is likely the reason.. Ive asked for my frequant injections but was told no..at my last injection I spoke to the nurse about it.. Her response was "the NHS is on its knees"..I don't know much about self injecting..is it expensive..wouldnt have a clue where to buy it x

[fbirder in reply to leasparkles]

There are several threads on here about self injecting. wedgewood often posts comprehensive lists of where to get various bits and bobs.

Hydroxocobalamin is available without prescription in Germany. It's relatively easy to buy from there, especially if you know a bit of German. Syringes and needles can be bought in the UK.

It works out at about £1 per injection (but may become £2 if the pound tanks against the Euro).