Seventeen years ago, my cousin was found to have B12 deficiency. She would have been in her early 30s then - and was told that PA was unlikely at that young age. They tested her. From what she has told me, it sounds as if she was given the Schilling test - as she remembers having to go to the hospital every day with a urine sample.
Was the Schilling test still around then ? I don't know of anyone aside from clivealive who has even had this test. I can't think what else this might have been.
I know that she has had a B12 injection every 8 weeks since then -and had to fight to stop this being changed to tablets during lockdown.
I also know that she had to have major emergency surgery on her spine, which left her with some back pain and some incontinence problems. A disc had to be removed -it had calcified and was crumbling as it was removed, lengthening the duration of the operation by several hours.
Wondering if this had a possible connection too ?
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Cherylclaire
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I had two Schilling tests - one in 1958 the second in 1972 which confirmed that I had PA by which time I was aged 31. From the description of your cousins experience with the 24 hours of radioactive urine collection she certainly did have a Schilling test. I well remember balancing the sloshing container on the back of my motorbike and taking it to Stoke Mandeville Hospital.
I don't know when Schilling tests were "abandoned" due to difficulties getting the radio active isotopes.
Could it be that nitrous oxide was used during your cousin's long surgery? This may have wiped out her B12. In my case it was gastric surgery at the age of 17 in 1959 that was the cause.
That’s so interesting to me Clive as I’d assumed that the deficiency caused by surgery could be slowly rebuilt. It also answers where my deficiency occurred. I suffered a cauda equine which resulted in paralysis and a subsequent lengthy surgery (which went well). But as it was 10 years before my eventual B12 deficiency diagnosis. I’d stupidly disregarded it as a cause regardless of the fact I’d spent years trying to get a doctor to realise there was something wrong 😑.
I think the deficit from surgery can be rebuilt, if you aren't already deficient, are young enough to still absorb and have a B12 rich diet. But not quickly, and sometimes not at all....
Yes, of course - I was thinking that she'd had the spine operation some time after the Schilling test but it could easily have been the other way around (my short-term memory is not great).
Not doing too badly, clivealive - how about yourself ? I gave up arguing with GPs lately and started taking the statins (calcification of the coronary arteries). Otherwise fine.
Seventeen years ago was probably about the time that Schilling Tests were taken 'off the menu'. It had become increasingly difficult to get supplies towards the end. The reason behind the withdrawal of the test seems to have been shrouded in mystery. Unavailability of the isotopes was one of the stated reasons, and the other was regarding the source of Intrinsic Factor used in 'Part 2' of the test. This was around the time of 'Mad Cow Disease' and the incorporation of animal by-products in a test was suspect. All we could be sure about was it was no longer available, leaving us with the IFAb test which only picks up around 1/2 of the cases, but at least doesn't involve swallowing 2 radioistotopes or collecting a 24 urine sample! [Happy Days.]
No . Was tested for Addisons amongst alot of othef things.Final week of tests were at Queens London after I pushed hard to get a referral there.
They put patients in a local cheap hotel ( cheaper for the trust) and collected daily .
Brutal daily tests .
But finally got a firm diagnosis of
PoTS
And HEDs ( Ehlers Danlos )
Still under Queens .
Midodrine then
Fludrocortisone along with appropriate support of a wheelchair eating aides ,complete change of diet and correct exercise has changed her life.
Of course regular now 8 weekly b12 In jections.
Daily folic acid 600mcg to stay in range.
Low dose iron.
Mtivits
High dose vit D
Has managed a very part time supermarket job.
A triumph as so isolated and lonely.
Chosen over a long process of being accepted to do a phd. ( decided too much at that time)
Prior to this managed a masters over 2 years as her brain woke up.
Best support to date with wheel chair access.
Also now proof reads for pHD students .
This is a case of undiagnosed vitamin b12 and folate deficiency.
Megabolistic anaemia .
This was not tested until I blocked her discharge from hospital.
Then they tested everything 🙄
Immediately started on b12 injections 💉
Then midodrine.
Fibromyalgia
Mental health/ anxiety
Removed from her notes.
She was most insistent on this .
Years of not being believed by those she needed to believe .
Sent to pain clinics .
Clinics for depression when hee brain was affected but wax nor clinical depression.
These sessions caused harm as did mindfulness as made her feel she shoukd do things.
Then resulted in days of POTS episodes unable to sit up let alone stand .
She wax being defiant proving it was nor in her head.
A very strong willed individual.
I've documented it all in copius notes.
Offered to present as a case study .
2 rounds of applying for PIP
Got these notes together.
Scored zero points .
Anyhow.
Early diagnosis of b12 deficiency could've saved hef of so much.
Any predisposition to anything comes to the surface when your body under attack .
Symptoms were from 9 years old .
Then intensified at 13 ( hormonal )
Then 18 .
Finally diagnosed at 24 yrs old .
The damage was done .
Taken the next 8 yesrs to be the best she can get .
To give hope to others .
Despite all the odds including polycysctic ovaries thrown in .
She is now a mother.
Despite The NHS bring under staffed ect she had excellent overall antenatal care led by a woman consultant .
Her POTS so much improved when pregnant.
Although b12 is included in the blood tests still more training is needed ,
especially with b12 stores naturally dropping after delivery and no advice to supplement? Everyone ) or perhaps have a few extra injections if on them already.
Not only can contribute / cause post natal depression but can deprive the baby if fully breast fed.
Nearly deleted this .
However left it as could help women / mothers / fathers identify things earlier .
Also definitely on topic with B12 def/ PA at the root cause .
So glad you did not delete. The more we can learn from each others' personal experiences, the nearer we all get to the truth.
I cannot honestly believe that a grain of truth is to be found in all those inane videos. Especially those that start with with a title frame of a confused-looking man in a white coat, grimacing below a giant question-mark. Still, where there's a void and desperation .....
I am finding it difficult to find the cause of cauda equina - and the difference between this rare condition (also called, dishearteningly, a syndrome) and neural problems experienced by some with B12 (particularly untreated) caused by demyelination. There seem to be similarities in presentation.
Any links there that you know of ? Seems that cauda equina is rare, so makes you wonder. It is spinal, neural ..... but don't want to just assume. Easy to think everything is B12-related, isn't it ?
I had a quick look and found something by Josh Farkas (2022) under "spinal care" in the Internet Book of Critical Care (emcrit.com) by googling "cauda equina B12 deficiency" but nothing else so far.
I am currently managing my own health. So, dealing with a crash. All brain energy was used sending a comprehensive report to one particular organisation.
Tomorrow, I would like to read a 165 page report about the Delivery of Services in NHS England which has been the first of its kind and printed in September 2021. The remit is acute and chronic neurological diseases/conditions/illnesses. A brief glance showed in 1 particular region there was one Consultant Neurologist to 80,000 patients.
I performed my last Schillings Test in 1979 at a large teaching hospital in Florida when I was in training for Nuclear Medicine. After graduation, I moved to smaller, rural hospitals and we did not have the proper analyzers to perform them. They were a pain in the ass for everyone involved, patients having to haul around tubs of urine and we had to handle them and compound our own radioactive capsules. It was quite the circus, but probably much more accurate that the IFab tests of today. Progress they say.
Hi Cherylclaire, My PA was diagnosed via the Schilling Test in October 2000, but I don't know why it was withdrawn for diagnostic purposes not long after that. Perhaps the danger of swallowing the radioactive capsule had something to do with it! The collection of your urine for a solid 24 hours thereafter and the transportation to hospital for testing was a bit of a faff too! I tend to hydrate well anyway, so needed two large plastic containers and they were heavy to cart in the car and then up 4 flights of stairs to the Path Lab! Was greeted (and embarrassed!) by the receptionist shouting 'there's another large pee sample for Dr. **** here' Still, at least the embarrassment got me the diagnosis and result I needed!
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