Oral B12 Supplement once a week and monitored annually?!

[HKAnne]

Hi,

I was diagnosed with Pernicious Anemia 8 months ago, my levels were very low (80), showing neurological symptoms. I had the loading dose i.e. 3 injections per week for 2 weeks, it made no difference to my condition, so after a long battle with my GP and reading all the helpful comments on this Forum, I managed to persuade him (after quoting NICE and BNF guidelines) into letting me self inject every other day (until symptoms stop improving). I have seen a Neurologist who confirms that I should carry on with the B12 injections until symptoms stop improving.

However, I have just received a copy of a letter sent to my GP by my Gastroenterologist saying that my B12 injections have been adequately replaced with oral B12 supplements once per week and that my B12 should be monitored once per year?!

I will be calling the Gastro's office tomorrow to point out this error and I hope he will amend the letter as, unfortunately, my GP is very anxious to get me off the B12 injections.

Before I start drafting a letter of complaint has anyone on this Forum ever heard of someone having Oral B12 supplements once a week and only being reviewed annually? Wouldn't a Gastro. know that if you have PA you cannot absorb oral supplements?

Many thanks for your advice.

Anne

[Gambit62 Administrator]

having PA means that your ability to absorb B12 is extremely impaired - on average 1% but could be a fraction of this - as not all B12 is absorbed in the ileum. Very high dose oral tablets have been shown to be an effective treatment for some but don't work for everyone.

Curious as to where you are based. If you are in the UK then high dose oral is licensed as a treatment for a B12 deficiency. the tablets that are licenced - 50mcg cyanocobalamin definitely won't be enough to treat an absorption problem.

when you say you were diagnosed as having PA does that mean you tested positive for IFA?

[HKAnne in reply to Gambit62]

Hi Gambit 62,

Many thanks for your response.

I am based in the UK and I have positive gastric parietal cell antibodies/positive IFA.

I had been managing well SI B12 every other day and now trying to manage on one injection per week, but after three weeks seem to be getting some of my old symptoms back again i.e. getting words mixed up, forgetting words and very poor concentration.

[clivealive Forum Support in reply to HKAnne]

Are you a member of the Pernicious Anaemia Society? There was an article recently highlighting the fact that more and more P.A. sufferers were being told that they had to go onto oral B12 tablets instead of injections which was strongly refuted.

Trouble is I cannot now find the article but this one is similar

google.co.uk/url?sa=t&rct=j...

[HKAnne in reply to clivealive]

Hi Clive

Thanks for your reply, yes I am a Member of the Pernicious Anemia Society. Many thanks for the link, I will have a read through when I get home from work this afternoon.

Thanks again.

[ArchengKamil]

eat chicory to make your gut bateria relive in you

[HKAnne]

Hi ArchengKamil, thanks for that tip, will give chicory a go