Newly diagnosed with B12 deficiency. Do I need to be tested for PA before B12 injections?

[Lautturi]

Hi all, so glad to find a forum on health unlocked about this.

So, I’ve recently been diagnosed with B12 deficiency, following a good 4+ years of increasingly worsening symptoms, mostly neurological. I’ve had migraine headaches for most of my life, but developed tinnitus, chronic pain across the body, cold sensitivity, real issues with my mood, balance issues and so much more. This was so severe I was crutch bound for a week. I’m in my early 30s and it was a combination of my neurological, physical and gastrointestinal symptoms that pushed me to go to the doctor - I couldn’t take it anymore.

I got lucky that the doctor tested for B12 (amongst a whole host of other things) rather than going down the route of fibromyalgia which runs in the family. With a level significantly sub-normal, I’ve been started on B12 injections and am currently in the loading dose phase.

Having read up on the condition and, having recently found out my aunt has been diagnosed with PA, I was wondering that if my serum B12 injection was low enough to warrant immediately starting injections, should I ask for the other blood tests to rule in/out PA? If so, are the tests something I can ask now I’m on B12 injections?

At early 30s with significant neurological symptoms, I’m really keen to know if it’s PA because I worry that once my level is higher following the tests that they’ll stop treatment.

Thank you all.

[clivealive Forum Support]

Hi Lautturi according to the P.A. website "Treatment of Pernicious Anaemia" -

"BE AwARE taking supplements that contain B12 will affect any tests ordered by your doctor to assess your B12 status. You should not take any supplement before having your B12 assessed and/or having the test to find out if you have the Intrinsic Factor Antibody."

Scroll down the link below to BE AWARE. You may need to be a member of the P.A.S to read the full details

pernicious-anaemia-society....

Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

If your aunt is a blood relative I think you should mention this to your doctor as P.A. may be "inherited".

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 47 years.

I wish you well.

[Lautturi in reply to clivealive]

Hi clivealive, thanks so much for the response, really appreciated.

My GP basically started me on the loading dose of the injections immediately because of my B12 level (low 100s) and increasingly worsening neurological symptoms. I’ve never taken B12 supplements, just had the first injection of six for my loading dose.

Having done a little research, it does sound like I can have the IFA tested as long as I wait long enough following the B12 ‘top up’ and I will mention my aunt to my GP. She is a blood relative and it sounds as if my paternal grandmother also had it. Given I’ve inherited a lot from that side of my family medically, wouldn’t be surprised if PA was a family inheritance!

Thank you again!

[clivealive Forum Support in reply to Lautturi]

Do you know what your Folate level was?

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

A wiser person than I has commented previously:

"Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same."

The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

I too was in my early 30s when i (finally - 13 years after gastric surgery) got the diagnosis of P.A. and I'm still "clivealive" at the age of 78

[Lautturi in reply to clivealive]

I don’t know my folate level, so I shall check that with the nurse when I go in for my next injection on Monday. I think that was taken amongst the complete repertoire of tests the doctor ordered.

It definitely isn’t dietary, happy meat-eater here, though I can’t have dairy!

Given my doctor said they’d do these shots to see if it fixed my levels, then wasn’t talking about continuing them after (though the nurse said I’d likely be on them for life), I’ll push a little to get tested for the underlying cause.

I’m very much grateful for your advice and that you’re still clivealive!

[fbirder]

Way back in the dim and distant past (in the early 1980s) it was necessary to wait over three weeks between injection and testing for IF antibodies. In the late 1980s they developed a new RadioImmunoAssay that only needed a few days gap. Then in 2007 the developed a new types of assay (ELISA) that needs no gap - supposedly.

One would hope that all labs would be using the new assay, but there's no way to tell.

To be safe I would leave a week between an injection and an IF antibody test.

[fbirder]

The question as to whether or not to be tested for IF antibodies is a difficult one.

If you test positive then you have a definite diagnosis of PA, which can be a good thing for future treatment. The problems may crop up if you test negative. Many doctors seem to take that as a sign that you do not have PA and, therefore, do not need further treatment if your B12 levels are high (which they will be if you're on injections). Even though half of all those with PA will test negative.

It all depends of your doctor - how well informed they are and how willing they are to listen to a patient contradicting them if they aren't well informed.