B12 deficiency questions

[Nadpa]

Hi there.

I hope some of you can help me with a few questions.

Some background: I got diagnosed with pernicious anaemia back in 2015 and also Hashimoto's. I have since received b12 injections every three months which is protocol in Denmark where I now live. My symptoms prior to diagnosing were anxiety/stress related. And then I had one odd symptom which I have never mentioned to a doctor and don't know whether is relevant or just a random odd thing: Every time I've had an episode of stress and anxiety I have prior to it and doing it had an itching spot underneath my left foot near the lower part of the axe of the foot. I've had it for years and it's always in the exact same place. I recently had another episode where I was less good at dealing with stress and anxiety - despite not having had it for years - peaked it's head out as well. It was, as previously, preceded by the itching spot under the foot which has now continued for several months. I've also been unusually tired. It hits me between 2/3pm till 8pm.

I recently had some blood tests done. They showed my b12 levels to be sky high (1480), but I also had test done a for methylmalonic - which apparently, if raised, is a sign of b12 deficiency. It was in my case slightly raised 0,35 µmol/L (normal is less than 0,28). I also had low iron which I often have and don't know why. It was 6 µmol/L (normal range 9-34) also transferrin saturation was low 0,09 (normal range 0,20 - 0,50).

So all this leads to my questions which I hope you might be able to help me with. I have a new doctor who knows nothing about any of this and I need to take matters into my own hands and show her scientific studies on the area. So...

1. could the itchy spot be a damaged nerve relating to b12? have you ever heard anything like that before?

2. I remember reading that once you have injections the b12 blood test is no longer true. It will always be high. Is that true? is there a scientific site to specify that?

3. does the raised methylmalonic mean I am b12 deficient despite the high reading of the b12 blood test. If yes should I then have more frequent injections?

4. do you know if iron deficiency is related to pernicious anaemia. And do you know if there is any symptoms from it despite having haemoglobin levels within the normal range (though right at the edge of being too low).

Thank you

[Gambit62 Administrator]

article on functional B12 deficiency in relation to raised MMA

academic.oup.com/qjmed/arti...

as PA attacks the cells that produce acidity it's likely that you have low stomach acidity which can affect the absorption of other vitamins and minerals - particularly iron and folate - so that is probably why your iron is low

the reason why serum B12 after B12 shots can be very misleading is actually logic - the injection puts a lot into your blood and then it falls as the excess is removed by kidneys - the amount that is removed because you have used it is generally very small.

couple of articles on how much the rate of removal varies from individual to individual

ncbi.nlm.nih.gov/pmc/articl...

onlinelibrary.wiley.com/doi...

I would suggest that your doctor take a look at the area of the PAS website aimed specifically at helping medical professions improve the diagnosis and treatment of B12 deficiency

pernicious-anaemia-society....

not sure about the itchy spot - neurological effects of B12 deficiency aren't entirely confined to neuropathy - B12 plays a part in the process that recycles neurotransmitters - however, the way it works means that neurological symptoms of B12 tend to be symmetric. Guess its possible that if there was some damage to a particular reason then symptoms would be more noticeable in that area - I have damage to nerves in my right ankle which means I notice symptoms more in my left foot than in my right.

[Nadpa in reply to Gambit62]

Thanks so much for all that information! Really helpful. :))