B12 result after 6 months…

[Nikkim236]

Hi,

So initially in October I was diagnosed with what they suspect to be pernicious anaemia, I had a negative IF test but due to me having diabetes and no other factors which could indicate why I was so low in B12 they put it down to me having pernicious anaemia.

I had 6 loading doses after which my levels were >2000ng/L and was told I would be on 3 monthly injections for life.

I had my first single injection at the end of January, my doctor wanted to see where my levels were at and I was fine with that so B12 was retested on the 8th of March and the result came back at 228ng/L.

I suppose my question is, is that a normal amount for it to drop by or is that a lot? I know before my injection was due at the end of January I was beginning to feel tired again and with how my levels are now I suspect I will suffer the same fate before my next injection is due in a months time. Should I be requesting more frequent injections??

Thanks!

[Sleepybunny]

Hi Nikkim236,

I've assumed you're in UK. Let me know if you're somewhere else.

Your GP has put you on a treatment pattern normally used in UK for those without neurological symptoms.

If you have neuro symptoms, I would expect GP to put you on this pattern.

A B12 loading injection every other day until symptoms stop improving followed by a B12 injection every 2 months.

I left information that might be of interest to you in the thread below.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

NICE (National Institute for Health and Care Excellence) published a new B12 deficiency guideline on March 6th. Worth reading as this may influence treatment GP gives in future.

nice.org.uk/guidance/ng239

If you have time, try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England (Health Board in Wales/Scotland).

I'm not a health professional.

[wedgewood in reply to Sleepybunny]

I am so grateful that you are not a health professional Sleepybunny . We would not be getting the marvellous help that you give us on Pernicious Anaemia/ B12 deficiency otherwise . Thank you so much .

[Nackapan]

Yes.In your case it being retested is in your favour to get a higher frequency .

Go by your symptoms.

We all need different regimes .

[Sleepybunny]

Just wondered if you'd considered joining and talking to PAS (Pernicious Anaemia Society).

Pernicious Anaemia Society

Based in Wales, UK. Has overseas members.

pernicious-anaemia-society....

You do not need a confirmed PA diagnosis to join.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

There is a PAS members helpline and an online contact form.

pernicious-anaemia-society....

They have lots of useful leaflets and a page for health professionals and there have been some interesting blog posts.

pernicious-anaemia-society....

pernicious-anaemia-society....

PAS support groups

There are several in UK and one in US.

I don't know how active the groups are.

pernicious-anaemia-society....

B12info.com is a website run by a UK campaigner on B12 deficiency issues.

Has lots of useful info and a blog with interesting posts.

b12info.com/

If you're in Scotland, there is also The B12 Society.

theb12society.com/