confused about B12 levels

[coopk]

I was diagnosed with PA 18 months ago, but my B12 levels went up after a few months of injections. They have stayed high but my GP says because I have been diagnosed I still need injections. Anyone know why?

[clivealive Forum Support]

I am amazed coopk that your doctor has not explained to you that for P.A. B12 injections are for life and that testing the level is not necessary once the injections have started.

P.A. makes it impossible to absorb B12 via the digestive system so it has to be injected.

Pernicious means fatal and without the injections you will die.

When I was first diagnosed in 1972 I was told that I had only two years to live unless I either ate raw liver three times a day or had the B12 injections. I chose to have the injections and they must be working as 45 years later I'm still "clivealive" at 75.

I hope this helps and I wish you well.

[coopk in reply to clivealive]

Thanks for that. I am glad you are well.

The doctor at the hospital explained about PA but when my GP took B12 levels they stayed high without injections for 6 months. I wondered why that might be and why I therefor still need injections. I feel OK.

[clivealive Forum Support in reply to coopk]

If you were given a definite diagnosis of P.A. by the hospital you need to go back to your doctor immediately - stamp your foot and wave your arms about and demand that injections be restarted and continued permanently.

If you have neurological symptoms the injections should be given every 8 weeks in accordance with the BNF and NICE guidelines.

Get an appointment today and also ask for your Folate and Iron levels are checked as these work together with the B12.

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

[coopk in reply to clivealive]

Thanks Clive. My GP is the one putting me on injections. I just wasn't sure why if my B12 is Ok and I feel fine.

[Foggyme Administrator in reply to coopk]

Hi coopk. Your GP (and clivealive ) are right - you should remain on injections.

The reason you feel fine is because you're having them 😄. If your injections were stopped you would eventually, inevitably, run out of B12 (a lack of intrinsic factor, caused by PA, means that you cannot absorb B12 and store it in the liver, in the usual way). Without the regular injections you would begin to suffer the symptoms of B12 deficiency.

It's also interesting to note that high levels of serum B12 in the blood is no indicator as to the efficacy of treatment...the thing that really matters is being symptom free so...

The fact that you are symptom free on the injections is very good news indeed 😄.

If you want to know more about the B12 deficency that PA causes there's lots of information in the PAS pinned posts to the right of this page when you log on (or at the bottom if using a phone).

Again, really pleased that you're well on treatment but...if you hit any snags in the future and want more advice or support, there are lots of lovely people here who can help.

Good luck and I hope that all continues to go well for you 👍

[coopk in reply to Foggyme]

thanks so much for the advice