Stopped injections

[hotcherry]

Hiya everyone, why is it that gp,s just suddenly stop injections after 3 year from diagnosis saying b12 levels are fine? Do they really no what they are doing? My son is 24.

[Gambit62 Administrator]

In answer to your question most of them don't have a clue when it comes to vitamin B12.

I presume he was given B12 because he had an absorption problem.

That won't go away with B12 levels being replete so it will just be a matter of time before he becomes fully depleted again.

Many mistakenly believe that because B12 is stored in the liver once levels get back up then the body is going to be okay but the reality is that the recycling mechanism also depends on the ileum functioning normally and if there is an absorption problem that isn't the case, so all of the B12 he receives is just going to end up excreted in urine.

You could try asking your GP to explain to you what has happened between the original absorption problem and now that means your son is okay ... and try and force them to think through the liver recycling problem in the hope the penny will drop.

Sorry, but suspect you have a battle on your hands.

[Hidden in reply to Gambit62]

I agree. Go in armed for a battle. Explain all his symptoms. The danger it can course for an injection which costs pennies.

[mikeg71 in reply to Hidden]

Gambit - some of the responses you post are information gold mines.

This forum is a better place for your input.

Thank you.

[pvanderaa]

GP is wrong. B12 injections for a B12D are for life.

Test also for folate.

Elevated Homocysteine or methlymalonic acid tests (blood or urine) are more reliable at identifying B12D than the B12 test of the blood.

[Hidden]

No they don't. Did the G.P. test his levels before stopping? In my experience, to suddly stop without a test shows ignorance of the illness surely?

[Sleepybunny]

Are you in the UK?

My top tip would be to phone the PAS as soon as possible. In some cases they can intervene. They are helpful and sympathetic. The website library section has good info. If you leave a message they will get back to you. I think they would be very interested in the fact that his injections have been stopped.

pernicious-anaemia-society.... 01656 769467

martynhooper.com/

Martyn Hooper is the chairman of the PAS. If you scroll down his blog entries, sadly you will find your son's experiences are not unique.

b12deficiency.info/

This website has a useful section on writing letters to your GP.

Your MP may be a source of help. There should be contact details and dates of advice surgeries on their website.

I'm too tired to add more but I have written detailed answers on some threads which you could search for.