I am a newbie who needs help. Where can I get a Schilling test for the source of my B12 deficiency

[Garrillee]

I am a newbie who needs help. Where can I get a Schillng test for the source of my B12 deficiency

[wedgewood]

I’m afraid that you will not be able to get a Schilling test anywhere in the U.K. It has long been unavailable . It was very expensive and needed a radio-active component , which is in very short supply . You can try to work out what the possible reason for your B12 deficiency is, as there is lots of information on the internet and with the articles on the Pernicious Anaemia Society website

Dietary -insufficient B12 which is found in meat , fish and dairy , Easily remedied with tablets . Vegans and strict vegetarians are at risk.

Very low / no stomach acid which can happen with continual use of Proton pump inhibitors like Omeprazole, certain diabetic drugs like Metformin, and some other medications which your GP should know about ( information on the internet )

Also ,as one becomes older ones body produces less stomach acid .

Abuse of Nitrous Oxide ( laughing gas)

Fish tapeworm ( this happened to a friend of mine who eat a lot of smoked salmon which had obviously not been sufficiently smoked . ). Also eating raw fish .

Stomach surgery.( Gastrectomy )

Chron’s . Disease

Helicobacter Pylori

Pernicious Anaemia is the most common cause . An autoimmune condition where the body attacks itself and produces antibodies which destroy the parietal cells in the stomach which produce the Intrinsic factor and stomach acid , both of which are necessary for the absorption of Vitamin B12

This can only be treated by injections of B12 .

There is a test for this condition called the “Intrinsic factor antibody test” . If it comes up positive , you have Pernicious Anaemia. BUT about 50% of P.A. patients test negative . Most doctors don’t seem to realise this , unfortunately for these patients.

Auto immune conditions seldom come alone - and there are over 100 of these .

It’s sad to say that doctors are often not well informed on Pernicious Anaemia . Hence this forum . You will be able to get help you may need here on that subject .

Best wishes .

I hope that I haven’t omitted any reasons !

[Gambit62 Administrator]

There has been some work on using gastrin as a test for diagnosing PA as the specific cause of a B12 deficiency - you could try asking your GP to look into this - not sure if it is available in the UK - certainly not as a standard test.

[wedgewood in reply to Gambit62]

Just googled Gastrin test . Available at all Spire Private Hospitals for £192.00

[2FloorLuka in reply to wedgewood]

I am amazed that some tests are much more expensive in UK than here in Brazil. Here it costs 1/3 of this price and most health insurances cover it. I just can't understand the logic behind it.

[helvella in reply to wedgewood]

Only £115 here:

doctap.co.uk/blood-test/cost/

("Only" being used strictly as a relative term!)

And a lab which provides the test to other providers says:

NOTES

The full profile comprises gastrin, glucagon, vasoactive intestinal polypeptide (VIP), pancreatic polypeptide (PP), somatostatin and neurotensin.

A request for ‘Gut hormones’ will result in all of these being assayed at a cost of £70.

Single hormone analyses are available (usually gastrin) and cost £30 per analyte.

The patient should not be receiving antacids or H2 antagonists for at least 72 hours preceding the test, or proton pump inhibitors (Omeprazole) for at least 2 weeks before the test.

Cimetidine is a common cause of hypergastrinaemia.

exeterlaboratory.com/test/g...

[Sleepybunny]

Hi,

A few links about PA and B12 deficiency that may be useful.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed

b12deficiency.info/what-to-...

UK guidelines indicate that patients with the symptoms of B12 deficiency should be treated even if serum B12 results are within range.

Have you considered joining and talking to PAS who can offer support and pass on useful info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

PAS website has lots of useful leaflets/articles about PA and B12 deficiency.

pernicious-anaemia-society....

Testing for PA (PAS article)

pernicious-anaemia-society....

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Have your gastrin levels been checked?

Gastrin test

labtestsonline.org.uk/tests...

Have you been tested for coeliac disease?

Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

There are many possible causes of B12 deficiency besides PA.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Is there a family history of PA or other auto immune conditions?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

Low dose cyanocobalamin tablets 50mcg are sometimes prescribed for dietary deficiency.

My understanding of UK B12 guidelines is that B12 deficiency with neuro symptoms present should be treated with IM injections even if cause of B12 deficiency is dietary.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

There are moves across UK to put move more patients from IM (intra muscular) B12 injections to high dose 1000mcg oral cyanocobalamin tablets.

Although this is often promoted as easier for patients, cynical me suspects a cost cutting measure.

There are people on this forum who manage by using high dose oral tablets but others, including myself, who report that high dose oral B12 tablets are ineffective.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Each CCG/Health Board in UK will have own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down local guidelines for your CCG/Health Board and comparing them with BNF, BSH and NICE CKS links above.

Some local UK guidelines have been posted on the forum.

Try a search of forum posts using term "local guidelines" or an internet search or submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a copy of local B12 deficiency guidelines.

I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is managed.

b12deficiency.info/blog/202...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.

Point 5 is about being symptomatic for B12 deficiency with an in range serum b12 result.

Link has letter templates that people can base their own letters to GP on.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible.

It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive IFA test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Local MP may be worth talking to if struggling to get adequate treatment.

A few people go to the Press....I think of this as the nuclear option as is likely to permanently affect GP/patient relationship.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in above book is out of date. See BNF hydroxycobalamin link in this reply for up to date treatment info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films about PA and B12 deficiency

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg symptoms lists, more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.

[FlipperTD]

Scientist, not medic, and I still have fond memories of Schilling Tests.

Wedgewood is absolutely correct. This test [well, these tests, as it was a multi-part test] is no longer available for a variety of reasons. [lapses into reminiscence mode now].

What we refer to as the Schilling Test was typically DiCoPac, which used two different Cobalt radioisotopes. This enabled us to measure simultaneous absorption of IF-bound and unbound B12 and express the result as a ratio. It relied upon the patient being B12-replete before the test was performed. Needless to say, this caused confusion within our medical colleagues [who probably thought they knew better than us; I apologise for anyone I've just upset]. If you didn't treat the deficiency before performing the test, then the gut mucosa was also megaloblastic and probably didn't absorb the B12 even in the absence of IF antibodies. As a consequence, this wouldn't help diagnosis. We administered an IM shot of 'cold' ie non-radioactive B12 to saturate the transcobalamins for the duration of the test. Failure to do this would otherwise lead to storage and utilisation of the radioactive B12, and that doesn't seem like a good idea, does it? A further problem was the administration of B12 bound to Intrinsic Factor. This was an animal by-product. Finally, the test required the collection of a 24 hour urine sample, and there's always the possibility that the full 24 hour sample wasn't collected, or the peak excretion of absorbed B12 was missed, therefore further confounding the result.

So, it's a test that we still miss, but I'd be very surprised if we ever see it re-emerging onto the market. We tended to think it was [scientifically] infallible, but due to the technicalities and people involved, it wasn't quite that good!

From the laboratory point of view, we can perform literally hundreds of B12 assays per day, and in later years with the introduction of automated IFAb tests, the same applies, and at comparatively little cost.

The DiCoPac test however required the patient to attend the hospital, and typically we couldn't handle more than two cases per day. Sorry I've droned on for quite so long!

[helvella in reply to FlipperTD]

I think it was the BSE crisis which dealt the final blow in the UK. The animal derived substance(s) being from cattle hence there was at least some suspicion that they could transmit BSE.

[FlipperTD in reply to helvella]

You're absolutely right, but I didn't want to mention BSE as we've got quite enough to worry about!

😀

[mickeymouse42 in reply to FlipperTD]

Was it Gastro departments that carried out Schilling tests?

[FlipperTD in reply to mickeymouse42]

The tests were performed typically in a combination of Nuclear Medicine and Haematology departments because the process involved handling radioisotopes which were administered to patients. These products were [in my experience] ordered by 'Radiopharmacy'. The staff involved in performing and analysing the tests could be either Nuclear Medicine or Haematology staff.

The analysis required a sophisticated radioactivity counter that could measure two different isotopes simultaneously, so we could perform 'Part 1' and 'Part 2' Schilling tests in one visit.

I think it's highly unlikely we'll ever see this test back in the repertoire due to a number if issues.

[mickeymouse42 in reply to FlipperTD]

The SehCat BAM test also uses isotopes - I believe it’s banned in the US by the FDA because of the type of isotope used. Do you know why?

[FlipperTD in reply to mickeymouse42]

Sorry, I have no idea. Isotopes are still widely used in medicine. Both stable, and radioactive isotopes. What probably finished off the Schilling Test was the 'Intrinsic Factor' component that was used.