We have just put together a new Pernicious Anaemia bundle on one of our private blood test websites which is quite comprehensive. I won't post any links unless requested by administrators, but the inclusions are..
Full blood count
Reticulocyte count
Folate (serum)
Iron and tibc
Active B12 (Holotranscobalamin)
Homocysteine,
Methylmalonic acid
Intrinsic factor antibodies
Parietal cell antibodies
In your opinions is this too comprehensive a profile (and therefore more expensive than it needs to be) or could other tests be included (but adding on expense).
I'd love to know your thoughts.
Paul Harris.
Clinical Support.
Written by
BlueHorizonMedicals
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I don't know if you've been hanging around the site for any length of time, but the upshot is:
Most people, clinicians and patients included, don't actually think B12 deficiency is a problem, they only think it becomes a problem when the patient can be diagnosed as having PA.
So, what doctors are looking for is A) Macrocytic anaemia and B) antibodies - other than that we are all fine.
Which is complete and utter poppycock.
So you put that thread up and I see Pernicious Anaemia and my blood pressure goes skyhigh.
So I go away and make a cup of tea and realise I am being completely unreasonable because it's not your fault... and you've got both reticulocyte count on there and you've got iron! Yeah. Which most of us can't get for love nor money.
However it's still named Pernicious Anaemia and many of us are put in the position of being neglected by medical professionals if we test negative for any of the antibodies.
So, if that test has to be ordered through a GP, what they will do is look at the antibodies primarily, declare us fit or otherwise dependant on the results and we end up in a right old mess of being 'unverified' by the test results even if both B12 levels and patients are through the floor.
So, while we've got you here (and be aware, we may tie you up and keep you!) let's try and get a few answers:
How accurate is the IFA test when it comes to sensitivity and specificity?
Are the results of the IFA test skewed further if a patient has had recent B12 treatment and if so in what way?
How accurate/reliable are the tests at measuring effectiveness of treatment at cellular level once treatment has commenced?
What are the calibrations of the serum B12 based on?
And, although I really know the answer to this one but I'm going to ask again anyway - is there currently any recognised test which you can include which measures the PH of the stomach acid?
- Amended to add - Thalassemia? Relevant enough to include?
There, you got off light (for a man who put Pernicious Anaemia in the title!)
Welcome (We've wanted our own pet-scientist for a while!)
Hi Paul,
It looks a good list to me, do agree the title could be more open to non specific PA, including B12 def would seem good. perhaps add the option for complete thyroid panel and antibody, but only as an extra option.
Kind regards,
Marre.
• in reply to
I suppose if you want to make it cheaper you could remove Parietal cell antibodies, and Homocysteine, as they are not specific only for for B12 def/ PA. Must cost a bomb that test panel...
Thanks for the welcome, and for not chewing me up too much!
We use 3 different labs for this type of test - TDL Pathology in London, Spire Pathology and Nuffield Pathology. All of these labs are reputable, reliable and fully accredited. They all base their tests upon different assays offered by the laboratory analyser's analyte solutions - so this is where I would find the answers to your questions - questions at such a micro managing level can often take some time to come back we find, especially this time of year - but I'll certainly ask and see what happens.
pH of the stomach acid - not available through a pathology test - thinking back to my nursing days when you needed to check if a feeding tube was in the right place (ie not in the lungs) you would test some aspirate from the tube)
Maybe I have the profile all mixed up - perhaps it is better that I ask the community what they want in a test as opposed to saying "This is a pernicious anaemia private blood test profile." Especially if GP interpretation will differ depending upon local protocols.
There is a test but it's spittle and it's not accredited. Acumen labs - no website.
A major problem for both clinicians and patients is the tendancy for no one to even try to understand why patients have a B12 deficiency if they don't have antibodies.
Very often it's assumed that patients have a bad diet. Which in most cases is a bit of a big leap.
Yet we all need an acid PH to cleave the B12 from food - if it's alkaline then it's end of story on the absorbing B12 front. Yet it is absolutely overlooked by scientists and clinicians alike. This is in spite of the problem that ph gets more alkaline as we get older and more elderly have a b12 problem.
If we could get round the PH issue somehow then at least some patients could provide their doctors with a reason for their deficiency.
Anyway it was just a 'thinking out loud' situation because I know, 99%, that there is no recognised test available in Europe - I was just hoping to be proven wrong!
I know i have a problem absorbing B12 - don't know if I have PA - so agree with others that talking about B12 would be a good thing, rather than PA which (although the terms do get confused) is much narrower.
I don't have any sign of anaemia which means my GP assumes that it is a recent development but in fact I can trace some symptoms back decades ... though GP doesn't seem to be aware that they are symptoms of B12.
One thing that would probably be appreciated is if the tests came back with caveats. I may be wrong but I believe it is the case that even with Active B12 you can show up as 'normal range' but still be suffering from clinical symptoms of B12 deficiency which seems to be the argument used for not replacing serum B12 with active B12, ie it isn't a question of the tests necessarily so much as the interpretation and not assuming that general practitioners - or even specialists - necessarily understand how to interpret the results - and educating them of the limitations of individual tests and the importance of a clinical assessment.
And following on from Sleepybunny's comments would be good to have clear guidance on circumstances before tests are taken - eg length of time that people should refrain from supplementing.
I like that you have included Reticulocyte count on the list. I've never once had that tested, even when I saw a hematologist. I've read that it is a very basic level indicator and would be diagnostically useful. I don't quite understand why it isn't used more often. Perhaps doctors have forgotten it exists.
Hi Paul, this test sounds like what I am looking for. I can't find it on your website so I don't know if it will be affordable. If you have time perhaps you can message me the link? Thanks.
Sorry for the slow response, a busy week all in all.
What we find is that no matter the reference range for the results that come back, the final say often comes down to the patient's own GP when referral and/or treatment is needed.
The panel above we have managed to source for £355 through Spire Pathology and can be found here privatebloodtests.co.uk/Per... - I'll have to go back to them marre and see what the price is without the parietal cell antibodies. A bomb it certainly is, but cheaper than ordering the tests seperately.
Have a lovely weekend everybody, and I'll catch up on Monday.
Wow just seen what the thyroid panel costs..removing homocysteine may also help making the B12 def/PA test cheaper; as homocysteine is also raised in folate def, so not that specific for B12 def only.
£355 is a lot of money especially bearing in mind people are ill and therefore may not be working. I think it would be helpful to offer one level of test, as well as this extensive test, which covers the tests GPs don't usually offer, eg the Active B12 (which as far as I know is only available on the NHS at one London hospital - I may be wrong?), the MMA etc.
I come from a family with a strong history of pernicious anaemia. My great great grandmother, my great grandmother and my grandmother's brother all died from or where diagnosed with PA and needed B12 injections. I have been suffering with fatigue and breathlessness for over 2 years. I have been to my GP on more than one occasion and have had low folate and low iron results but my B12 is always ok.
At one point I did manage to persuade one of the GPs at my practice to do an Intrinsic Factor antibody test but the lab decided not to do the test because my B12 was ok. I am fully aware that the current B12 assays are possibly not as reliable as the older style B12 assays that used radioactive tagging. But I have been unable to persuade any medical professional that this is the case and therefore not been able to obtain any further tests.
The bottom line is that I would willing pay the £355 for this bundle of tests just for the peace of mind that I have not inherited the family disease and am not likely to shuffle off this mortal coil because of misdiagnosis. In fact I did follow the link you gave above (healthunlocked.com/api/redi... but its seems that this bundle cannot be purchased yet. There is no ability to place this bundle into the shopping basket. How soon before you think this bundle will be freely available?
I agree. The Active B12 we can do as a home kit (finger prick) or phlebotomy kit - both of which are sent to TDL Pathology in London for analysis. We can get it through Spire hospitals too but at an increased cost. Tests like homocysteine have less availability in terms of sample requirement restrictions, but I think MMA is generally available through our websites.
What would you include in your "the NHS did everything but these" test?
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