Pernicious Anaemia Society
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New here and some B12 questions/could this be it?

Hey all,

So for about a year I've had a mystery illness that pretty much no one has been able to figure out. At first I thought it was my liver but I had some scans that ruled it out so I'm looking into this as well.

Basically over the past year I have:

-light sensitivity

-Balance/gait issues

-waves of dizziness

-slight motor problems

-internal/resting tremor

-head pressure/cotton ball feeling

-really bad anxiety

-chest tightness

-altered levels of consciousness (derealization?) and memory problems

-sometimes my pupils dilate, around the same time I have ‘migraine auras’

-muscle twitching, sometimes involuntary

-tingling hands/feet

-cramps/pressure on right side of my ribs

- (This one is the worst!) BURNING sensation in my hands and feet.

Nothing worked for a solid year. Then, as a hail mary, my doctor gave me a B12 injection.

What. A. Difference. I woke up feeling amazing. I'm not 100% but it's been two weeks now, only had two B12 injections but also taking sublingual B12 and honestly all of my symptoms have greatly improved.

My GP dismisses this - my B12 was never officially 'low' (between the 200-300 mark) but I can't help but just feel the difference. It's bounced around from 180 to a high point of 350, and never seems to be consistent. He says 'its placebo' and even the neurologist I saw dismissed it - but I feel what I feel!

Shoddy labwork the past year also is pointing to *some* form of anemia - my MCH is -always- high (the one constant in every single lab test) and my MCHC and MCV are usually right along with it. I had high bilirubin once (which led me to believe liver was indeed the culprit) alongside high ferritin and low vitamin D.

Another thing to note - I had labwork done twice within 48 hours about a month ago (GP referred me to specialist, both did labs) and noticed that within a day, my B12 had dropped a good 80 points. A curious find.

I'd love any input you guys have. Could this be the culprit? I have read that B12 is a bit of a tricky thing, and I certainly don't understand a lot of the science behind it, but it's definitely doing something beneficial. I feel warmer, my circulation is better and my balance issues are better. I took oral B complex pills for years and they had literally zero effect. Are there additional tests/better tests than serum B12 I could run?

Thanks a lot, and looking forward to sharing/hearing.

2 Replies

Hi Cthulwhoo ,

Welcome here. From what you write symptom wised and blood test wise it sounds very much that yes you are most probably B12 def at tissue level and the fact that the injections helped you speaks for it self. If you can get to learn to self inject B12 then you will never depend on a GP saying placebo any more, ity really is the best way for you to get to properly try B12 treatment I feel good if I get my serum B12 over 300 not good in the 250 range, you levels are not high by any means with B12 injection and supplements.

Have some monitoring of folate and ferritin if you are going to self medicate is what I recommend and taking a good multi vitamin to keep everything in balance.

Kind regards,



Can only re-iterate what Marre has said.

My symptoms improved dramatically when I started self medicating because the regime in UK really wasn't working for me - got my life back after years of suffering with depression.

It is really sad that GPs seem to be so unaware of the range of symptoms B12 Deficiency can cause and that the serum B12 test isn't the most accurate guide in the world ... though guidelines are moving to recognise that it will probably be a while before that really starts to filter down.

In Japan they regard 500 as the trigger level I believe, it certainly varies from country to country.


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