Can 2 + 2 ever make anything but 4

[Lilian15]

20 years ago my then GP diagnosed PA, and started me with injections. One of the symptoms I had at the time was burning feet at night. Since having the injections I never had burning feet. A year or so ago the injections were stopped, the GP saying I no longer have PA. Haematologist said I do not have absorption problems. However just recently I have been getting burning feet every night. Not quite as bad as they were 20 years ago (as yet). I recently had a blood test done and they didn't even request B12 so I do not know whether my serum B12 is going down. I would have thought that if I had it 20 years ago, it stopped with injections, and starting up again without injections, it is as plain as the nose of your face that it must be the injections that stopped it. I have not spoken to my doctor about it yet because of the difficulties making even a phone appointment. Every time I mention any kind of symptom she tells me it is my diabetes, but I had diabetes 20 years ago but the diabetes did not stop.

[Narwhal10]

I’m sorry to hear Lilian15,

There is no cure for PA. Its symptoms are managed with vitamin B12 injections.

One of many symptoms is burning foot syndrome otherwise known as Grierson-Gopalan syndrome. I and many have had.

How did the haematologist conclude you don’t have an absorption problem ? Intrinsic factor ?

It’s worthwhile contacting the PA society.

These doctors unfortunately are poorly educated although you do get the odd one or two who you think wow.

Best wishes

[Lilian15 in reply to Narwhal10]

They got away with it by saying I must have been misdiagnosed in the first place. Over the years I have had various doctors and they all continued with the B12 injections. The GP I have now, was giving me injections for 8 years. I do not know what tests the haematologist did. I was told by my GP that there were no records of my results when originally diagnosed. I would have thought there must have been something because a doctor would not just diagnose out of the blue. When I spoke to haematologist he let slip that there was a record of positive parietal cell antibodies then. He said they were negative now. Thanks for telling me what it is called, when I approach my GP again it sounds as if I know what I am talking about if I can give it name.

[Narwhal10 in reply to Lilian15]

So,

Say, you’d like to access your records. Speaking to clerical staff can help with this.

There has been a problem recording, storing and maintaining your records. This is called Information Governance its Data protection. So, throw that into the mix, as well.

The fact that vitamin B12 has kept your neurological symptoms at bay shows it is beneficial.

Wishing you the best.

[Nackapan in reply to Lilian15]

The rules have now changed As from April 2022.You shoukd be able to access online much more easily.

I don't know the details yet.

A nurse friend having training.

I asked a gp on a telephone consult and he confirmed thus.

Should be easier . I'm not IT savvy.

However have got an app now that shows all blood tests.

Only thing is only for last 6 months.

My practice make you sign s consent form to get a paper copy now

Another form to process in an admin plie !!!

Then told 9o days.

I think z way of stopping it.

However I persisted as no idea how to download from app to print.

So far I've managed to get paper copies.

Very good for hospital appointments as it systems not matching and they can't access your notes .

So much time wasted repeating things in a valuable consult.

They used to read up on you.

Now dependant on a two lines referral

[Narwhal10 in reply to Nackapan]

No, I’m not IT savvy either.

I’m aware that blood results are on one database and doctors/clinicians notes are on another database. Then there’s the paper hospital notes.

Requesting notes is called a Subject Access request

ico.org.uk/your-data-matter...

There’s a draft letter on there.

Sorry, this is a long term solution but Lilian15 and other affected by this ridiculous situation need their injections reinstated ASAP.

[Nackapan]

Exactly. You need treatment for life with Both conditions.

Get your injections reinstated

[FlipperTD]

Scientist, not medic.

20 years ago it was easier to diagnose PA than it is today. We had the Schilling Tests, which, when done properly, showed whether you had an absorption problem, and if so, whether IF resolved this. That's not been available for rather more than ten years now, and is very unlikely to come back. I suspect you never had this test performed, or you'd have mentioned it. It required pre-treatment with B12 before the test could be performed. This then involved a visit to hospital, a 24 hour urine collection and so on. It could be performed at a distance from the hospital and laboratory, but anecdotal evidence suggests that wasn't a good idea either.

The terminology is a major issue here. Some folks have used the terms 'PA' and 'B12 deficiency' interchangeably, and as we ll know, they aren't. PA is the commonest cause of B12 deficiency, but there are others. PA isn't curable, but it's manageable. Without suitable B12 supplementation, PA has a bad outcome. This has been known for a long time. Dietary B12 deficiency can be treated very effectively.

To be a little bit more controversial, it's likely there are a lot of mis-diagnosed cases of B12 deficiency on life-long B12 injections, and I suspect if you get a new GP going through the surgery records it's possible that they might think 'we seem to have a lot of folks on B12 injections' and then you end up being told you were 'mis-diagnosed'. In some cases that will be absolutely true, but in others it's completely wrong. If they can root out a few mis-diagnosed cases, then they'll reduce the surgery workload, but when they get one wrong, it's the patient who suffers.

As Narwhal10 asks, 'How did the Haematologist conclude you don't have PA?' If relying on negative IFAb, then that's only true 50% of the time. If relying on negative Parietal Cell antibodies, then that's even worse.

If the symptoms come back on stopping injections, and oral B12 doesn't make them go away, then I [as a mere scientist] would have thought it was obvious, but the doctor takes precedence...

Good luck.

[Cherylclaire Forum Support in reply to FlipperTD]

I just don't see it. Was there ever a time when a PA diagnosis was that easily obtained ?

I would argue that, rather than previous overdiagnosing of PA, it is far more likely that many patients were never even given a cause - but, if they asked, were told the treatment was for the B12 deficiency, whatever it's cause might be. Which would mean that a lot of patients with PA don't have proof of this, simply because there was no follow-up.

Others may still have to wait a while: 44% of those in the Pernicious Anaemia Society survey were initially incorrectly given some other explanation for their symptoms. These ranged from anxiety and depression to multiple sclerosis. This may explain why 14% of those surveyed waited over 10 years for their PA diagnosis. Can't imagine there has been any positive progress there.

I doubt if those who had that long a wait -presumably eventually found to have a positive IFab result- would be eager to have a retest now !

So for anyone who does have a diagnosis of PA as a result of testing, either by Schilling test (which no-one seems to dispute, but can get lost) or by positive IFab test, get a copy of this printed off and keep it very safe.

[FlipperTD in reply to Cherylclaire]

Thanks for your observations, and your points are well made.

When Schilling Tests were introduced, (providing they were done properly) they were capable of giving a definitive answer to the malabsorption of B12 in the presence or absence of intrinsic factor. Using the DiCoPac method, it was quite straightforward if somewhat lengthy. First, treat the deficiency with a course of B12 injections, and then perform the test when the patient is B12-replete. (Some folks ignored this part 'because they knew better!' and caused further confusion.)

When we started performing IFAb tests, these were useful in identifying around 50% of PA patients. Schilling Tests were withdrawn when the theoretical risk of 'Mad Cow Disease' was considered, leaving us with IFAb tests. In terms of volumes, we would perform one or two Schilling Tests in a day, and this was typically one day per week. Perhaps a week later, the 24 urine sample would be returned for radioactivity counting and result calculation.

I suspect that the great majority of PA patients never had a Schilling Test. Likewise, they wouldn't get an IFAb either, as it wasn't available at the time. They were given a clinical diagnosis of PA.

Comparing the Schilling Test to performing the serum B12 test, we could perform maybe 60 B12 tests per hour, per analyser, day in, day out. The same goes for IFAb. Both of these were fully automated. The cost of either one was small, especially compared to the cost of a Schilling Test. Earlier radioisotopic assays relied on batching and the capacity depended on other factors, but the testing capacity was considerable.

It's worth noting that the diagnosis of PA is a clinical diagnosis, and is made by a doctor, based on all the information available. The laboratory data is only ever supportive. If the responsible doctor either doesn't understand or chooses not to do so, that's outside the influence of the laboratory. Patients who had no detectable IFAb would still be detected by Schilling tests.

So, in principle, when Minot, Murphy and Whipple were feeding patients on raw liver and noting recovery, they had a straightforward diagnostic procedure. When Castle was feeding half-digested raw hamburger meat to patients and showing recovery, we had a better diagnostic procedure which we'd never get past Ethics today!

It's likely [I have no data on this] that there are folks who have been mis-diagnosed due to the complexity of the processes and as I've said before, once you're on regular B12 injections then that can be seen as a 'case closed', and you're on them for life. Then there's the others, who are missed, and they will simply deteriorate over the next year or two, having been mis-classified.

This whole situation is 'imperfect', to say the least. I have no answer to the problem.

[Cherylclaire Forum Support in reply to FlipperTD]

The worst possible answer to the problem would be to stop B12 injections, put everyone on tablets - and then see who deteriorates. Deterioration would then be judged presumably by serum B12 levels being found to be below range - by which time, some of the patients will likely have suffered irreversible nerve damage.

Any visible evidence of deterioration would of course go undetected in a telephone appointment. In any case, it would require a level of knowledge of the range and severity of symptoms that are attributable to B12 deficiency - something many GPs simply don't have.

No statistics for that either, but posts here would point to it being true.

[FlipperTD in reply to Cherylclaire]

Dear Cherylclaire

I hope I haven't seemed to suggest that stopping injections, giving tablets and waiting for the undertaker to call is a sensible approach! That was never my intention.

There is little doubt that very many folks on injections need them purely to maintain life, and I support them having them.

However, there are some on injections who don't actually need them because they can absorb from the gut, even if they need mega-dose tablets. Of course, as ever, working out which is which is not simple.

It is possible to detect haematological recovery within a very short space of time in ideal circumstances, but that probably requires even more of the doctor's time than the patient was getting before. There is much to support the 'if it ain't broke don't fix it' approach, and I'm sure that many folks on B12 injections would find it very difficult to consider any change, considering what they've been through in the past.

I don't have an answer to this issue, and when you've got an otherwise deadly condition that can be kept at bay with regular B12 injections it's not going to win someone a Nobel Prize either. I wish I had an answer!

[Nackapan in reply to FlipperTD]

Is if true once on b12 injections your body actually needs the high amounts whatever?

I sometimes want a definitive answer.

All o had was a parietal cell antibody test which was negative.

Thankful fir other blood tests ruling things out.

Wax told it dietary but never asked what I ate

Never had the IFA test?

Trialled on tablets to reduce frequency of b1e injections.

Told it was z placebo

Ect ect.

I really don't think anyone would continue with b12 injections if they didn't need them.

They are not pleasant

On requesting 2 monthly for my mother. The doctor rang !

She said mum needed hef b12 level tested to assist in deciding her regime. .

Well I don't think she wax reckoning on my reply.

My mum now has been prescribed 2 monthly injections 💉

[rogergee]

HahaHA! This is not a constructive post, so apologies, but your chosen title made me laugh. In a system that determines one month is actually 4 weeks, yet 3 months is most definitely 13 weeks, 2+2 can most definitely = whatever they like!