Was my neurologist honest?

[GGourmet]

If a neurologist told you that they had a patient recently whose serum B12 was zero, implying that my 146 was not of interest, would you say they were honest? Surely if someone had got to zero they would long since be dead, or would they?

[Galixie]

I think, if that happened to me, my follow up questions would be: Did they repeat the test to check for lab error? And did the patient survive? I would also wonder how bad the permanent damage was to the patient.

Even if the doctor did have a single patient who had not yet died even though their result was zero, it's a sure bet that was a very unusual case (otherwise the doctor would not remember it so clearly).

It's unfortunate but true that many doctors simply aren't aware of how important B12 is.

[Annnon58 in reply to Galixie]

I wonder if he got IF result muddled with b12 level which shows how little he knows about PA ? ?

[Gambit62 Administrator]

as far as I am aware measuring serum B12 that low isn't going to come out of the lab results - there comes a point at both the bottom and the top where the assay method doesn't produce an accurate result. Think it would be a case study in the texts if it had ever happened.

[helvella in reply to Gambit62]

100% agreed.

This document discusses concepts and terms:

beckmancoulter.com/ucm/idc/...

For one assay, selected by ease of finding rather than any other reason:

LOD 63.3 pg/mL

LOB 30.6 pg/mL

LOQ 96.7 pg/mL

diazyme.com/websites/diazym...

I need to get my brain working to understand properly...

[Gambit62 Administrator in reply to helvella]

my understanding

LOD - limit of detection 63.3pg/mL - so that would be the lowest concentration that can be detected with reasonable certainty

LOB - limit of blank 30.6pg/mL - marks the top point of results from a sample that didn't actually contain any B12 at all - you could get a higher result from an empty sample but it would be unusual.

LOQ - limit of quantitation 96.7% - the point at which the assay method stops being an accurate measure of the amount in the sample

So, on that basis a lab would never actually give a result of 0 on serum B12.

[GGourmet]

Thanks guys. Really helpful. This was private BUPA referral. I felt from the outset that she was backing up my GP, three of whom said 'stress and anxiety'. Since proved wrong!!!!!

[clivealive Forum Support]

GGourmet do you know what the range <from - to> was on the test when your result was 142 because to me that seems pretty low. Also was your Folate level checked at the same time?

As to your neurologist's remark are you sure he wasn't talking about a cadaver at the time - maybe he didn't notice....

[GGourmet in reply to clivealive]

The low was 180 high 914. Folate was around 5.6 but since fell to 3.1 sometime after B12 levels were corrected. On taking prep for a colonoscopy 10 days later Folate rose to about 8.4. Circumstantial evidence so far to support SIBO, esp as B12 had stabilised at around 800 for some months but also shot up to 1150 in the same test that the Folate went up. Dietitian said the prep strips out bacterial overgrowth which can take 4 weeks to reestablish. This is why there has to be a min 4 week period after a colonoscopy before Hydrogen and Methane breath tests can be done with any reliability.

[plug]

My level was 40 on diagnosis and i felt horrendous, enlarged cells,enlarged liver and neuro problems. Was put onto 6 weekly injections, later changed gp who made me have 12 weekly injections,i'm now back on 6 weekly but symptoms are increased in neuro issues, i think this results from time of under-treatment during 3 years of 12 weekly jabs, because new gp believed 1500 was too high. I did see a video of a doctor in US whose level was lower, he was in wheelchair and expected to die, luckily a fellow doctor friend realized the true problem and saved his life with b12 treatment.

If zero or close to was recorded then the medics involved in allowing the patient to become so deficient ought to hang their heads in shame, the patient would have been through a lot of avoidable hell and would surely have seen lots of doctors who had not diagnosed or under-treated the B12 issue.

[Clover81]

They told me anything under 100 was BAD BAD BAD, but most people should be around 500. The range is like 100-1000? Anyway, when they first checked me I was 85, but it also had to be backed up with the Homocystine and Methlymalonic Acid test (the two things in your blood that B12 gets rid of, and should be low) mine were OFF THE CHARTS. So that's what cinched it for me. You have low B12 and high Homocystine and high Methlmalonic Acid and it's a sure sign.

But really I think anyone under 200 should be treated just a little bit at least! Under 200 and I KNOW I start feeling like garbage. But I have had follow up tests that said I was in the 200's and my doc said I was ok and the shots were working. (heh "working" :P)

[LinBuer]

My B12 level at diagnosis was zero- no detectable B12 in my serum. I wasn't dead, but I sure was ill. Lots of neurological symptoms- difficulty walking, balance issues, peripheral neuropathy, cognitive disfunction, couldn't perform many basic functions like writing, reading or speaking! I had multiple white streaks of demyelination in my brain and cervical spine. It has been three years since my PA diagnosis and I am happy to say "I'm back!" I have some lingering issues but I am employed, hiking, cooking and fully engaged in life once again. Don't allow your physician's arrogant responses undermine your experience. I saw thirteen physicians who mainly said I was scamming the healthcare system and that I was delusional until I got my diagnosis. Have faith in yourself and knowing your own truth. We are the best at knowing what is going on for ourselves.

[wedgewood]

Amazing that you stayed sane through all that ! Well done , and thanks for telling us

[GGourmet in reply to wedgewood]

I found that when I was very ill in August/September 2016, sanity was something that I had to rely on others for. At that point, I had to be chaperoned for GP appointments because I had virtually no mental functioning or capacity.

[LinBuer]

I, too, had to be chaperoned by my husband to even walk, forget about understanding what the doctor said or to drive myself. It took months before I could drive again. I am eternally grateful to get a diagnosis and to have found this forum.