Pernicious Anaemia Society

Struggling to know what to do now: B12 deficiency


I was diagnosed with a B12 Deficiency 2 years ago in early August. I had 6 injections over 2 weeks, then was tested for PA which came back negative. My B12 was then tested again a couple of times and I was referred in December to a Gastroenterologist.

I went through a series of endoscopy tests (both ends and barium meal) and the gastro signed me off as needing injections for a year and then to come off them.

The problem is, I feel uncomfortable not having gotten to the bottom of why this has happened and what to do now. I'm not vegetarian and I do eat meat and dairy . My diet isn't perfect but it's not terrible and I now routinely take a multivit/mineral.

My last injection was in mid June.

What's the monitoring process for checking that my B12 remains at a decent level?

Also, should I come off any supplements I'm taking before having it tested again?

Previous experience showed it steadily dropping and I'm just afraid this is what's going to happen again and that I'll have to go through this procedure again. But equally I may just be a bit anxious about it.

Happy as I am that nothing gastro seems to be involved, my own piece of mind isn't great. Am I worrying about nothing?

3 Replies

The test for PA was, presumably, a test for anti-IF (Intrinsic Factor) antibodies. A positive result for this is a very good sign that you have PA. Unfortunately 50% of people with PA give a negative result. Even more unfortunately, not many doctors seem to know this.

That means that you could well have PA and, lacking any other probable cause of your deficiency (veganism, gut surgery, certain drugs - mainly PPIs) it's likely that you do have it.

If that is the case then the doctors obviously are expecting your B12 levels to continue to drop, until you start feeling really ill, get tested again and have another short course of B12 - rinse and repeat.

Obviously this is not a desirable situation - well, not for you it isn't.

Go to the doctor armed with the info in my summary - Print out the BMJ article linked to therein and highlight the relevant extract in the summary - especially the bit about injections are for life.

Doctors get fed up with patients bringing in stuff from the internet. So make sure you mention the name 'BMJ' - that's hard for any doctor to dismiss.

Ask what was the cause of your deficiency and why they have ruled out PA as a possibility. Tell them it can't possibly be diet as you eat lots of meat and fish.

Point out that the experts say that any B12 deficiency not due to temporary causes needs to be treated for life.

They may suggest it's due to your getting older. Point out that this is, as yet, not a temporary cause.

Point out that if nobody can prove the cause was temporary then the best outcome for the patient is to treat it as if it were permanent - lifetime jabs.

Oh - and it's probably a good idea to bring somebody along with you. Arm them with a copy of my summary and the BMJ paper and ask them to take notes. Brief them on the points above and ask them to tick them off as each is covered in turn.


Have you seen page 29 in the BCSH Cobalamin and Folate guidelines?

This is a diagnosis flowchart that shows the recommended process a GP should follow with someone they suspect has B12 deficiency. the same page also menions Antibody Negative PA which shows that some people can have PA without the IF antibodies.

I gave my Gps a copy of Martyn hooper's latest book which is up to date with BCSH Cobalamin guidelines.

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

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Link to BSH Cobalamin and Folate guidelines click on box that says Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines.

Link to flowchart in BSH Cobalamin guidelines

Hope you are okay and getting the treatment you need. If you want to update people with your story, may be a good idea to start a new thread as comments on old threads sometimes get missed.


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