Discontinuing B12 injections.

[ABC852031]

My mother had PA. According to parietal cell and intrinsic factor tests, I don't. My B12 was low but at the time I was taking omeprazole. If I had a blood test now, how long would I need to wait before having another one to determine whether I need injections for life or not? Can high B12 cause paraesthesia? I know the received wisdom is you can't have too much B12. My experience was I stopped having 3 injections a week August 2018 of my own volition because of extensive paraesthesia. I recommenced two monthly injections in February by which time the paraesthesia had subsided to just my lower legs. There are admittedly other factors but I don't want to bore anyone rigid.

[fbirder]

No. I have it straight from the lips of a Consultant Neurologist, Clinical Lead in Neuroimmunology and Honorary Senior Lecturer at the National Hospital for Neurology and Neurosurgery.

When I first saw him about my neuropathy I mentioned that I was self-injecting B12 every two weeks. One of his students said "Could the neuropathy be because of high B12?" "No", came the reply. "High B12 is harmless. You're thinking of Vitamin B6. And we've tested for that".

[ABC852031 in reply to fbirder]

Hi fbirder, thank you for your reply. I too was told that by a highly competent neurologist but these days I'm more of a sceptic than I used to be! I have numb finger tips and toes which I'm reliably informed are a result of dural ectasia and the loss of sensation (neuropathy) seems to be constant but the paraesthesia seemed to improved greatly after stopping b12. Unfortunately it's hard to be scientific about it because in desperation I stopped eating gluten at the same time. I really don't think I'm coeliac but I've persisted because there was a huge, immediate and totally unexpected improvement in my digestion.

What I'd really like to know is whether I actually need injections or not now I've stopped taking omeprazole, on the face of it there is no reason why I should be deficient. I thought maybe I could determine that scientifically by stopping b12 and monitoring blood levels and I wondered whether anyone on here could advise me how to go about it. I feel such a fraud taking injections when I don't have PA.

[Nackapan in reply to ABC852031]

I'm told I've not got PA. I'm on 2 weekly injections still. Lots more healing hopefully to come. I don't know the reason for leveks dropping. Csn only assume stress and reduced stomach acid. I was not on any medication. In hindsight (a wonderful thing) should've been on vitamins despite My really good diet. Sorting I wasn't advised on my 50 + health check? ?

As a way to go about it . Follow your symptoms and continue or if you can go the recommended time off b12 and have a B12 test. ??

[ABC852031 in reply to Nackapan]

Thank you for your input, hope your improvement continues.

[Sleepybunny]

HI,

"According to parietal cell and intrinsic factor tests, I don't."

Both PCA and IFA results can be unreliable. I think there are a few individuals out there who have PA even with negative results in both PCA and IFA.

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.

Both these tests can be unreliable.

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 you had folate and iron levels checked?

[ABC852031 in reply to Sleepybunny]

Thank you for your reply. Both my ferritin and folate were fine when they were checked a year ago. I just wish I could find definitive proof as to whether or not I actually need continuing b12 injections. The only way I can think of to achieve this is to discontinue treatment and see what happens. I was trying to find out roughly how long it would take without injections to establish this by reference to blood tests.