Help with Intrinsic B12 test results

[acdoore]

Hi all,

I finally got my doctor to agree to do an intrinsic/active B12 test as my serum B12 was 192 ng/L and my mum has PA.

Rang up for my results and the receptionist said it was "normal". So I have paid £5 for a copy and have them here but still none the wiser.

Its says my levels were 2.3 U/mL with a range of 0.0 - 10.0

Any ideas on what this means.

[clivealive Forum Support]

Sorry I can't help with the results but I think £5 is iniquitous

[Sleepybunny]

Hi,

"intrinsic/active B12 test "

Were two different tests done?

Intrinsic Factor Antibody test and Active B12 test?

"my levels were 2.3 U/mL with a range of 0.0 - 10.0"

Is this result for the Intrinsic Factor Antibody test?

Sometimes on a copy of a blood test result there will be a note from the laboratory or result may be highlighted in some way if lab feels result is significant.

The result is within reference range so more likely that lab did not feel result was significant.

"So I have paid £5 for a copy"

If it was just one A4 piece of paper £5 seems a bit steep... I have in past been charged 50p per A4 sheet

Link below about charges for accessing medical records in UK

nhs.uk/chq/Pages/2635.aspx?...

UK

In UK, it is recognised in the "BSH Cobalamin and Folate Guidelines" that it is possible to have Antibody Negative Pernicious Anaemia.

This is PA where result in IFA test is negative .

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines (mentions Antibody Negative PA)

stichtingb12tekort.nl/weten...

I'm not sure that Antibody Negative PA is recognised in other countries.

PAS (Pernicious Anaemia Society)

Has members from around the world

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left, may take a few days to get a response

PAS may be able to tell you about reference ranges for Intrinsic Factor Antibody tests or pass on other useful info about PA and B12 deficiency.

I've written some very detailed replies in last week or so, there may be some useful info if you search for them.

I am not a medic, just a person who has struggled to get a diagnosis.

B12 book

I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" It's up to date with current UK guidelines.

[acdoore]

Thanks for your replys.

So this is what the 1 page (that cost me £5!!) says.

Request: SER-GEL

Observations

Tissu transglutaminase IgA lev 2.3 U/mL (0.0 - 10.0)

Negative results may occur in IgA deficiency

Active coeliac disease can occasionally occur without positive antibody tests

A negative TTG result excludes coeliac disease in 97% of cases

I am really starting to lose confidence in my doctors and thinking about going elsewhere. Trouble is I live in The Vale & Cardiff NHS Trust area which are notoriously bad for diagnosing PA & B12 def.

[toph]

You can have PA with a negative IFAB result. Maybe get B12 injections yourself (cheap) try online German pharmacies... U don't need a prescription.

[acdoore]

I was thinking that but I am a little scared of self injecting

[acdoore]

Does that mean they did not test my active B12 which what I asked them to do?