PA with no antibodies?

[Katier92]

Hi all.

My b12 level was tested back in May 2018 and was 197 (180 was classed as low so wasn’t treated at the time) and when I had it rechecked last month it had dropped to 150. My GP then checked for intrinsic factor and parietal cell antibodies and then put me on the loading doses of b12 injections.

My GP suspected PA as there is a family history of the condition, I’m not on any medication that may affect the absorption of b12 and I have no gastric symptoms, however both of the antibodies have now come back as negative. What is the chance of the b12 deficiency being caused by PA if BOTH antibodies are negative? I’ll be speaking with my GP later next week but was wondering what your thoughts are?

Thanks

[Nackapan]

Mine did too. That blood test isn't accurate. I'm in the same predicament. Not really knowing the cause of low levels as not a vegetarian and n other medical problems. Mine was 106. I had neurological symptoms. Loading dose made them worse at first. Glad you getting the injections before neurological symptoms kick in. The old shilling test is no longer done.

[Katier92 in reply to Nackapan]

I unfortunately have the neurological symptoms too. Mainly burning/tingling in my heels which was also a lot worse during the first few injections as it started spreading up my legs. Luckily it’s settled down now. Have you had a diagnosis of PA or haven’t they diagnosed anything?

[clivealive Forum Support]

Hi Katier92 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.

A wiser person than I has commented:

"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".

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

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

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

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

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 so the three must always be in balance.

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 and your B12 levels are below the bottom of the range.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[Gambit62 Administrator]

IFA produces false negatives 40-60% of time depending on the exact test method. A positive is good evidence of PA. A negative is, however, a long way from demonstrating that you don't have PA and PA is the most likely/most common absorption problem.

The BCSH guidelines recognise the limitations of the test by referring to IFAB-negative PA to cover cases like yours.

[nephilim in reply to Gambit62]

Hi Gambit62,

yes but in combination with the parietal cell antibody test is it less likely - or are the tests totally independent? I find myself in exactly the same situation but I’ve never discovered if a combined test is a more accurate indicator of PA or not.

Thanks

[Gambit62 Administrator in reply to nephilim]

My understanding is that you can have PA even if GPCA comes back negative. There are two antibodies that are involved and you could have one or both.

[Katier92 in reply to Gambit62]

My issue is that both are negative, but there’s no other reason for my deficiency

[Gambit62 Administrator in reply to Katier92]

As above IFA being negative does NOT rule out PA.

most likely cause is PA but at the moment there isn't a good test to confirm this.

You are far from being alone in not getting a definitive diagnosis. I don't have one either but give other factors, such as very low stomach acidity, its the most likely explanation and I've decided not to drive myself mad trying to get a definitive diagnosis.

[nephilim in reply to Gambit62]

Thanks! I am in exactly the same situation as Katier92 - both tests negative, very low b12 of 103 (148 min) and no other deficiencies picked up in tests. I suspect PA because it’s in the family but can’t get it confirmed. Unlike you it’s still driving me mad😁Thanks for all you’re help

[Katier92 in reply to nephilim]

Nephilim your situation really is similar to mine isn’t it!! What did your GP say about both antibodies being negative? Are you being treated as if it’s PA?

[nephilim]

She said I didn’t have PA but treated me with loading doses and then once every 3 months. When that clearly didn’t work she showed me how to self inject and arranged a repeat prescription for an injection every 2-3 weeks