Great improvement since I started self injecting in August, but I can't get to more than 6 days between injections.
Starts with a night of restless legs, then the next day tiredness, pins and needles start in feet. Start to get really bad tempered and then the horrible pressing feeling on my chest and the air hunger kicks in.
All the symptoms disappear about 4-6 hours after injecting.
I'm trying to eat well ( tho not really interested in food), but I've never been a foodie) take a folic acid tablet , iron supplement, magnesium tablet and a vitamin c drink daily.
I think my goitre has shrunk slightly since I went gluten free a month ago.
Test for PA was negative. I realise now I've had all the symptoms bar the shortness of breath for years.
Do I accept that an injection every 6 days is necessary and just keep going with that? GP is totally disinterested and won't do anything so not even worth thinking of going there.
Any suggestions to what more I can do, or what I'm missing gratefully received!
I'm on a weekly cyano prescription but find it lasts 3-4 days. I split the 1ml into two intermusclar (IM) injections of 0.5 ml each. One I take on Monday morning and the other on Thursday morning.
My vials have rubber stopper tops so I can withdraw 0.5 ml and leave the rest and don't have to deal with the break tops on ampoules where I think I would have to inject the entire ampoules in a single injection.
I started this regime as an experiment a couple of years ago as I figure I peed most of the injection away in the first 24 hours.
It seems to work most of the time but I also supplement with methylcobalamin 5 mg sublinguals before meetings to clear my head and be able to think.
What matters when treating B12 is the symptoms - so if your symptoms are coming back after 6 days that is obviously the longest you should personally be waiting between shots.
It is possible that you might not be able to go longer with a different type of B12. On average people retain hydroxo twice as long as cyano but there are significant numbers of people who will be the other way round. How you metabolise B12 and how much you need is going to be a mix of a lot of factors - probably a lot of genetic factors - but there has been so little research and these areas are not well understood and you'd need a full genetic profile anyway ... and there are probably other factors around other conditions you might have etc that all you can actually do is try.
You may find the results of this poll helpful/interesting/reassuring - small sample and probably skewed towards people who need more frequent injections but nevertheless it is evidence that 6 days doesn't make you totally unusual.
Personally I need to top up less than 24 hours after a maintenance shot.
Thank you both for replying and thanks for the link Gambit62 . it's very reassuring to know that weekly jabs seem to be common.
I don't know anyone else who has had b12 deficiency. The injections don't bother me so I'll just keep going, though next time I might look at hydroxo to see if it makes a difference.
I think all the things I have are linked. Gluten makes me feel ill ( though not coeliac) goitre, allergic reactions to all sorts of foodstuffs. Rosecea.
My GP here in the USA has given me a year long prescription for weekly cyano 1000 mcg/ml strength in 1 ml doses.
I get them 4x vials at a time from my local pharmacy in my grocery store. The insurance will only pay for one month at a time. The price for 4x is $4.
This past month I asked, and bought, an extra vial for full price $13 as I was traveling to a week's vacation over the thanksgiving holiday and then immediately was on a week long business trip to Paris and I calculated I would run out of B12 and did not have time to get the prescription renewed between trips.
My GP checks my bloods annually and reviews my symptoms while looking for new neurological ones before renewing my annual prescription.
It's been working well for the past 4 years and I'm pretty stable on the roller coaster ride.
Every. Other. Day. This was my lightbulb, eureka experience. We can't hold onto it so we need to replace it - i wish I had cracked on at this rate for a year instead of trying to stretch it out like the NHS wants us to - I was trying to emulate that to no good effect. I wish you all the best.
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