Pernicious Anaemia Society
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Recently diagnosed and wondering how to proceed

About 10 months ago, I flirted with vegetarianism and gave up after about 4 weeks, feeling awful. A few months later I was still feeling pretty run down, and although I've suffered for a very long time from dizziness, it reached a point where I often couldn't eat as I was so nauseous, and was frequently losing my balance.

That was the first time I thought to have my dizziness investigated, and the results were iron and B12 deficiency. My iron levels are back to normal. But following an initial loading session, and 3 months of fortnightly injections, my B12 levels haven't improved much. I don't have the specific numbers, but my doctor told me that after the initial loading session, my B12 values doubled (but were still too low), but another blood test this week has shown that they haven't changed, despite the injections and eating more meat. My doctor wants to continue unchanged, with injections every two weeks, and check out my blood values again in December.

I did initially notice I wasn't so tired all the time, I could concentrate much better, and my memory improved (Prior to getting my dizziness checked out, I was genuinely concerned I was somehow becoming less intelligent, but assumed it was "all in my head" so never got it checked out). There hasn't been any noticable change as regards being dizzy though, I've also had my ears checked and everything came back normal. I can do some exercise, however I've noticed the dizziness is much much worse afterwards. After doing something a little more strenuous, like cycling up a steep hill or climbing, I get a headache which normally lasts a few minutes, so long as I take a break.

Is this just a normal B12 deficiency, or could it be pernicious anaemia? So far the doctor hasn't mentioned anaemia, but I'm not living in my native country, and communication difficulties typically mean I leave the doctors knowing the bare minimum, with an instruction to go consult google.

A side effect has resulted in severe outbreaks of acne, should I be treating that separately (it's resulted in some scarring) or do I just need to ride that wave out too?

Is there something I'm doing wrong? Should I be avoiding exercise altogether if I'm getting headaches?

Thanks, given the language difficulties with my doctor, any help would be greatly, greatly appreciated. :)

3 Replies

Sounds like you may have a methylation problem. There are a set of genetic variants that affect the bodies ability to fully process some vitamins - mainly folate but also B12 - into the fully methylated forms that are used by the body.

This site gives an introduction to MTHFR

A word of warning - using artificial methylated forms of B9 and B12 can cause problems depending on the genetic variation involved - so wise to try with caution if you go down that route.

Its also true that people vary very much in how long they actually retain B12 so it cold just be that your kidneys filter it out very quickly and that is why your levels just aren't rising.

The acne is a pretty common response to B12 injections - definitely talk to your doctor about it if it is causing you scaring though - it tends to quieten down as body recovers.


Do you know your folate level ? If that's low too your uptake of the B12 will be poor, and your body will just flush it out.


Have you read any of these books?

Could It be b12 by Sally Pacholok

Pernicious Anaemia ;The Forgotten Disease by Martyn Hooper

Living with Pernicious Anaemia by Martyn Hooper

useful websites


I always try to get paper copies of my blood tests especially folate, ferritin. B12 and FBC (Full Blood Count). There can be useful clues on a FBC. High MCV and high MCH can indicate the possibility of a macrocytic anaemia. Low iron makes red blood cells smaller. Low B12 and/or low folate makes red blood cells larger. If you have both conditions red blood cells can appear normal size and a doctor may miss problems.

"could it be pernicious anaemia?"

Have you had an IFA (Intrinsic Factor Antibody" test? This can help to diagnose PA (Pernicious Anaemia) although results from this test are not always reliable.


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