Pernicious Anaemia Society
15,148 members10,700 posts

Want to self-inject but no GP referral

I want to try buying B12 and self injecting but believe you need the first injection done in a medical setting. How do you manage this if the gp will not agree at all to it? My B12 is always in the high 1200s although I don't take supplements, and my Folate came back high at over 25 when the top of the normal range wAS 20. I've tested neg for PA and as my hubby has PA I know that I'm not as ill as he was. I think I might have some absorption problems, but the gp flatly refuses to accept that anybody can. For thim it's PA or nothing.

My latest bloods show slightly high levels of PLT, MCH, MCV. I've been told these might indicare a B12 problem, but gp says they "aren't that high and can vary from month to month anyway". Anybody got any ideas because my head is going round in circles here lol.

I have severe fatigue and exhaustion, and spend most of my time on the couch. Diagnosed with ME 16 yrs ago and ACTH deficiency a year ago.

Is it possible to self inject just to see if it works, or is it too risky?

10 Replies
oldestnewest

I think the advice to have someone present with you is in case you have a (rare) adverse reaction to the injection - like anyphalactic shock - at least you could be taken somewhere for help. Once you've had one you should be fine.

I'm not medically trained but have had over 600 cyanocobamalin B12 injections during the past 45 years and I'm still "clivealive" and over 75.

I hope everything goes fine and wish you well.

1 like
Reply

Ive always been led to believe that higher than range b12 should be investigated by a gp as much as the reason behind a low one, especially as you have taken no supplements. Taking more b12 could compound an existing problem not necessarily solve it.

5 likes
Reply

What was the value of the MCV?

What makes you think that having even higher B12 might be beneficial?

1 like
Reply

I'm thinking that I need the B12 injected, so it bypasses the stomach and gut. Like the people with PA? But I think I will go back to the gp and quizz her on the high levels, see what she says. If she says anything!

Reply

Your GP should ask you why you believe you need B12 injections, so it might be a good idea to come up with a reasonable answer to that question.

2 likes
Reply

It's not so much that I want them, more that there must be a reason for these high levels and my total exhaustion, and she hasn't ever explained this or seemed interested. Diagnosed with ME 16 yrs ago then left to my own devices lol, housebound and always exhausted. Getting bored with it!

Reply

Hi MaryFu

In my opinion, it seems you are going about this in a rather 'hit and miss' way. If your B12 results are already high, you don't have any indication that more will be better.

What I would suggest is that you ask for a print-out of all your recent tests, along with the ranges, and then post the relevant results here, along with the normal ranges. At least, any advice can be based on something a bit more concrete.

There are lots of other issues that can cause similar symptoms and MS is one of them. Unfortunately, MS isn't as easily managed and you will need to come to terms with this illness, learning to pace yourself etc so as to reduce how often you feel exhausted.

Have you been in touch with the MS Society to discuss management and support ? That might be a good place to start, if you haven 't already

Wishing you luck in finding something to improve your life etc. :)

Reply

people with PA need injections because the mechanism that allows them to absorb B12 from their food is broken. Although people do store B12 in the liver it is the same mechanism that is a key part of the process for releasing it back into their blood.

If you have high levels of B12 in serum then the problem isn't absorption.

Many people with high levels of B12 in serum in their blood are perfectly okay which is the main reason why it doesn't ring alarm bells. However, some people respond to high levels of B12 in serum by shutting down the mechanism that allows B12 to be transferred from blood to cells, resulting in a functional B12 deficiency.

If you are highly symptomatic of B12 deficiency then this is what may be going on for you.

The question is really why your serum B12 levels are so high without supplementation - some people just naturally have high B12 levels. In others it can be a sign of a problem elsewhere - kidneys or liver. You really need to discuss this with your GP and identify what may be going on for you.

This is a paper from a few years ago that was arguing that high serum B12 levels should be investigated and discusses the reason why and also talks a bit about functional B12 deficiency

oup.silverchair-cdn.com/oup...

1 like
Reply

Ok many thanks, will have a think about this. JMN I haven't got MS, I have ME/CFS, and also Addisons disease. I will go off and google some more on B12, thanks all x

Reply

Please accept my apologies, MaryFu

My brain probably got as far as 'M' and made up the 'S' ;) So sorry. However, what I've put in the post still stands ;)

Reply

You may also like...