Blood tests for B12 giving misleading results

[chris2008]

Can anyone point me to the research which shows that serum levels of B12 may not show the true state of B12 deficiency?

Thanks

[Hypo101]

I don't have links for what your asking but there is a private test you an do which is more reliable. It's active B12 test and shows how well it's getting into your cells.

Standard B12 test just tells you what's in your blood and does not tell you if your deficent. You can have all the B12 in your blood but if it isn't getting in to your cells then you have a B12 problem. You can have serum B12 levels in hundred (some people above a thousand) but can still be deficent because it's not getting into your cells. Active B12 tests is more reliable but not doctors wont do it or haven't heard of it.

You can order private test on sites like blur horizons but can be exspensive. They have a sale on now though is only £39. Got mine through post and sent my blood off already

[Lisahelen in reply to Hypo101]

Thanks for that info, i have just ordered myself one.

[fbirder]

Yup, this is from my summary document - frankhollis.com/temp/Summar...

"Some assays may give false normal results in sera with high titre anti-intrinsic factor antibodies(Carmel and Agrawal 2012, Hamilton, et al 2006, Hamilton, et al 2010)."

So, if you have PA th n it's quite possible that you'll have high levels of anti-IF and, therefore, falsely high results for a B12 assay.

[Gambit62 Administrator]

There are a load of references throughout the BCSH guidelines

bcshguidelines.com/document...

You could start with this article and go back and see what turns up from the references in the article

ncbi.nlm.nih.gov/pmc/articl...

[Gambit62 Administrator in reply to Gambit62]

also this

ncbi.nlm.nih.gov/pubmed/233...

[chris2008]

Thank you very much, everyone.  I shall now need to write to my GP with the evidence!

[Gambit62 Administrator in reply to chris2008]

To be honest the fact that UKNEQAS - the organisation that ensures that haematological tests are giving the correct results have an alert out on just going by the numbers in test results should be pretty compelling evidence that the tests are not accurate - this is one of the items referenced in the materials fbirder put together but can also be found here

ukneqas-haematinics.org.uk/...

[Jo5454]

Hi, realise you have all the written evidence above, but thought I'd share my experience as it is evidence that serum levels don't show the true state of deficiency...my blood serum was 261, and refused by Dr to be considered as low or causing symptoms and the range was 130-1100. I finally got a referral from dr for the Active B12 postal test at St.Thomas NHS hosp. My result was 27, if between 25-70 it's sent for an MMA test, this needed to be between 0-280 and mine was very high at 708, so was diagnosed with b12 deficiency at tissue level. So the serum test I had at the Drs was absolutely no use at all, nor their ranges either!

I had been extremely unwell with constant sinus/ inner ear infections, balance probs, migraines, sleep probs, tinnitus, feeling faint, numbness, exhaustion, poor memory and concentration, brain fog, digestive probs to name but a few! low ferritin and vit d and MCV overrange which all pointed to b12, but were all ignored and blamed on the diagnosis of ME I received 17 years ago!

I also ended up writing a letter to my Dr when requesting the Active B12 as was too tired and fed up to ask face to face, and after a further 2 months of waiting, he agreed!

So finally I've recently had the loading dose and hopefully getting started on shifting at least some if these symptoms!

I wish you the best of the luck and keep on until you convince your Dr...Jo

[Hidden in reply to Jo5454]

Thanks for your story - gives me hope!!!

[Jo5454 in reply to Hidden]

You're welcome, that's good, we need all the hope we can get when trying to get help with this! I couldn't have done it without the fantastic support of people on here...hope you get the help you need...

[Jo5454 in reply to Jo5454]

Forgot to say active test was £30, then referred for a free MMA test because it was in the indeterminate range. Have you got Martyn Hooper's recent book? There's a section in the front discussing recent findings about the inaccuracy of the machines in current use which are used for testing B12 and would be worth quoting? Also about how people with IFactor have higher serum results too and not necessarily in range...

[Hidden in reply to Jo5454]

Hi Jo Yes, I have bought a copy of Martyn's latest book and I am going to give it to my GP tomorrow. I have asked for a cell level test and he has agreed to do this. I have a very good GP but he has admitted he knows nothing about B12 defiencey so I was recommended to give him a copy of the book which is what I will do tomorrow. Yes, like you I have had a lot of help and advice from great people on here. Many thanks. 

[Sleepybunny]

Hi,

Just to add that some test results eg Active B12 test may be affected if you are already supplementing with B12 or have supplemented recently.

b12deficiency.info/b12-test...

active-b12.com/frequently-a... See 4th question.

Link which has ideas for writing letters to GP etc if unhappy with treatment.

b12deficiency.info/b12-writ...