There are many documents and websites which mention the Schilling test for Pernicious Anaemia. Look on TUK here and on the PAS forum and you find no-one seems to have had it in recent years.
The paper below is the first time I have found an actual reason, other than cost, for it not being available. Have already posted the link over in PAS but thought it could be of some interest here as well:
The Disappearance of Cobalamin Absorption Testing: A Critical Diagnostic Loss1
Ralph Carmel*
Department of Medicine, New York Methodist Hospital, Brooklyn, NY 11215, and Weill Medical College of Cornell University, New York, NY 10021
When the manufacturer of the most popular Schilling test kit (Dicopac, Amersham Health) discontinued its licensing in 2003, mainly because of concerns of potential transmission of bovine spongiform encephalopathy via its animal-derived IF dose, much of the medical community's reaction was muted. In fact, requests for the test, whose costs exceeded reimbursement by health insurers, were already in decline. I know of no American manufacturers who provide radioactive cobalamin test doses or IF today.
First we don't get 'life-long B12 injections' - Three monthly in the UK is the maximum-minimum.
I was fortunate to be diagnosed by the Schilling Test before any clinical symptoms appeared by a forward thinking doctor. Also because my mother had it.
So, the idea (I assume) is that you let pernicious anaemia advance until the patient's symptoms develop or until the patient becomes unwell and damage is done to the body. Something like the process for diagnosing hypo.
I have never had clinical symptoms of P.A. but a myriad of hypo and still not one 'knowledgeable' person ever did a blood test for thyroid gland. even the cardiology who didn't test it when my TSH was already 100.
Well aware that "we" don't get monthly injections. That even monthly injections for life would be less expensive suggests that even if the Schilling test in one form or another returned, it might be very hard to get one.
How do the doctors actually diagnose P.A. nowadays?
If B12 deficient and you get B12 injections will they 'stop' the injections as your blood tests are now at an optimum level? Will your levels of B12 remain at a certain point or decrease instead of being at a continuous level? Maybe a question for the HU P.A? I do know they have been requesting monthly B12's but are refused.
So they should carefully monitor the b12 thing so you definitely keep topped up.. Christ I don't want injections ever but if they do have a positive affect I'm going to lobby along with others to sort this out...
checking on blood levels is most definitely not the way to treat a B12 deficiency and is NOT recommended in the BCSH guidelines.
B12 deficiency is a blood disorder - low levels in serum will mean that not enough B12 is getting to cells where it is needed but it is not the only thing that can go wrong and as the serum test cannot tell you what is happening at the cell level it isn't a definitive guide.
There are a couple of tests that look at by products - harmful by products - that will build up if cells are not getting enough B12 - MMA and homocysteine - which generally need to be done in a hospital - which can help to clarify what is happening at the cell level - but as low B12 isn't the only thing that affects these processes they aren't specific test for B12
So recommendations revolve around symptoms - but given overlap with other conditions - including thyroid - and the likelihood of more than one condition being involved even this can be highly problematic. Add in that most GPs are totally unaware of the symptoms of B12 beyond macrocytosis and we have the situation that we have at the moment with patients struggling to get diagnosis for long periods of time and frequently being left with irreversible neuro damage
oh my goodness... I feel that it's so hopeless then to get a P A diagnosis and they are only going to give me two in the first month then every 3 months.. Why won't they make us fully functioning well...
That's nasty that again cost stops them finding out and helping!! It should be whatever makes the person well... I'm wondering if I start b12 jab this week if it would interfere with any tests for P A? Should I put this off and have test?.. 😊
if you are UK based you may be interested in signing this petition - if you haven't already - calling for research and possible reintroduction of schilling test
sorry not a member of either fb or twitter but feel free to promote the petition - started by a member of the PAS forum - as you can - think it needs 150000 before it gets debated.
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That even monthly injections for life would be less expensive suggests that even if the Schilling test in one form or another returned, it might be very hard to get one.
Hypothyroid AND Pernicious Anaemia. How to unpick the two? 
What do I need to do next re: possible pernicious anaemia?
Where do I get tested for Permicious Anaemia? 
