Advice appreciated: B12 injection issues.

[AndromedaWay]

My (apparently almost total) lack of B12 was detected on a blood screen for something else. I have had injections every three months at home with the District Nurses for two years; I have a severe mobility problem which makes attending the surgery difficult.

With that condition, the pernicious anaemia is rather overlooked, but I feel terrible without it. Three months is, in my opinion, probably not enough, but I've never managed to get to the surgery to have it monitored between injections.

The Distrct Nurses are now being difficult about continuing to come out as they see it as a minor issue. I am wondering what my options are. I am a total newbie to dealing with this properly, but it's probably time to take it more seriously. Attending the surgery is difficult, so I'm wondering about what I can do for this at home? Where should I start?

Any advice would be so, so appreciated. I've got a lot to read here

[fbirder]

A minor issue!!!

Ask them if they know what 'pernicious' actually means. The dictionary says "Tending to cause death or serious injury; Deadly".

[AndromedaWay in reply to fbirder]

I'm finding that out now... I'm a little overwhelmed at what I am reading, I had no idea. I knew I felt so much better with the injections but it's never really been explained to me, just: have the injections. I can understand somewhat as my other condition is pretty overwhelming, but I'm really starting to feel I need to look at this all a lot more seriously!

[wedgewood in reply to AndromedaWay]

You may have to resort to self-injection,like a lot of us do. I cannot go 3 months between injections,so I self-inject. Once you are used to it, it presents no problems. Should you decide on this action,come back here for advice.Best wishes to you.

[Gambit62 Administrator]

As others say - definitely not a minor issue - lack of B12 is a killer.

Blood levels after you start on injections don't really mean a lot as they don't say anything about how you are managing to use the B12.

Normally the body is very good at storing excess B12 and recycling it but this relies on using the ileum as a recycling point and if you have problems there then most of it is just going to pass straight through so it runs out very quickly. All the serum levels will really say at the moment is how good your kidneys are at removing excess B12. It is quite probable that you aren't retaining it for the full 3 months - no body is actually sure where 3 months comes from - other countries using hydroxo - such as Germany - goes with monthly. There was a study in 1960s that showed that if you took a large population then people tended to retain hydroxo twice as long as cyano ... but it also showed that there was a lot of variation and significant numbers of people retained cyano twice as long as hydroxo - so certainly couldn't say that people only need hydroxo half as often ... though that was what happened in UK some time after ... and then in the 80s it moved to every 3 months if no neurological symptoms and 2 months if neurological symptoms.

Don't know what mobility issue is - or if it involves neuropathy - if it doesn't and you have neurological symptoms then you could try arguing to 2 monthly - though even that may not be enough

Might still be the case that B12 has caused neurological symptoms but it's going to be more difficult to establish if your underlying condition involves the same symptoms.

Self treating is an option if you have the resources -

injections can be done intra-muscular or could be done sub-cutaneously - you might be able to get prescriptions for injectable B12 from your GP but if you can't then you can source it from outside the UK.

However, if self injecting is an issue there are other options - ie other ways of getting B12 in using membranes outside the ileum. There aren't any prescription issues for non-injectable forms.

Some people find high doses orally do the trick (more than 1mg a day - probably nearer 5mg a day). This is because 1% of B12 is absorbed 'passively' outside the ileum - however, doesn't work for all.

Other membranes that you can use include tongue (idea behind sublingual tablets), nasally - which works well for me - and even the skin (skin patches). However, if money is an issue then that makes things more complicated.

[AndromedaWay in reply to Gambit62]

This is really fascinating.

I have always wanted to self-inject and actually asked about it with the District Nurses, but they refused to teach me to do it. Do people who self-inject here have any training; do your doctors know you are doing it? It doesn't particularly worry me, especially as I nursed a cat through kidney failure and am familiar with what a subcut injection should feel like. I still have all the sharps stuff.

Mobility issue is totally separate, congenital, but it does make getting to the surgery difficult (and impossible in colder weather).

Money not a particular concern, so I would look in to those things. Thank you.

[fbirder in reply to AndromedaWay]

Halfway through my loading doses I mentioned to the nurse that I was thinking of self-injecting. The next time she showed me how to open the ampoules and suck up the liquid with one needle, then replace it with a shorter, thinner needle. The she handed the prepared syringe to me and told me to have a go!

The next time she walked me rough the whole process, with me doing everything. Two days later she had a student nurse in with her who wanted to watch!

The same nurse explained how I get my sharps bin replaced with an empty one.

My GP was surprised I was self-injecting as he hadn't prescribed anything. He was more surprised when I told him I got it from Amazon in Germany. And the news that I got syringes and needles from Amazon UK really got raised eyebrows. Now I have a proper prescription from him.