Pernicious Anaemia Society
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B12 deficiency

Hi All

I’ve written about my problem on numerous occasions - I have b12 deficiency caused by being a vegetarian/vegan and having been put on omaprezole for years!

I went to the doctor about three years ago and was diagnosed with very low b12 (I don’t know the figure but the nurse was astonished at how low it was) and I have been having injections ever 12 weeks since.

Most of my symptoms ended pretty quickly but a recurring symptom has continued.

1. Without warning, I go into a semi conscious state.

2. I have tinnitus - a noise like radio interference.

3. The tinnitus fades and I have a feeling of euphoria and have auditory hallucinations- I hear voices which seem to make sense as they are occurring (like in a dream) but make no sense afterwards,

2 and 3 stopped after two years and only 1 occurred.

My last injection was on the 18 April and I had symptom 1 several times 2 day’s afterwards.

Then nothing until today (approximately 6 weeks after the injection). I had two events during sleep and, so far, three events this morning.

This time I am having 1 and 3 and no tinnitus.

I have read that b12 wipes out the iron and b9 - folic acid - but I take a multi vitamin every day as well as 1000 ml b12 tablet.

I feel totally well usually between the events but my body is sluggish and a fair amount of brain fog afterwards.

My go practice is useless - they diagnosed me as having PA and just give me the 12 week injection. I’ve told them of my recurring symptoms but they just say they are not symptoms of PA - although tinnitus is on the NHS list of symptoms of PA but auditory hallucinations is not.

I have been retested each time I see my doctor and I am told I have enough b12 in my blood.

I have read that b12 wipes out the iron and folic acid so should I supplement with these (although I take a multi vitamin every day with provides the recommended daily amount of iron And b9.

I did think that I was getting better but I am a bit depressed about this recurrence of symptom 3.

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Hi Alfabeta

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

It is also important that your Folate level is monitored as this is essential to process the B12. You need to know whether you are supplementing enough

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

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Thank you, Clive you’re a saint! I am taking a multi vitamin but read yesterday that b12 injections and supplements do/can deplete folate and iron so I am now taking folate tablets and iron supplements- started it today.

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