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‘I have lived with B12 deficiency for 26 years – the problems in my hands and feet seem normal’

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5 months ago

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‘I have lived with B12 deficiency for 26 years – the problems in my hands and feet seem normal’

A patient who lived with the sensation of “needles” in their hands and feet for 26 years had grown so accustomed to the problems that they thought nothing of it – then they were diagnosed with B12 deficiency.

This is an extreme example of a surprisingly common complaint. B12 deficiency is often missed or misdiagnosed by medical professionals.

When it is eventually picked up, a majority of patients complain that the treatments barely relieve their symptoms.

One user took to Reddit to share their ordeal, which lasted for more than two decades.

The B12 sufferer also experienced tinnitus

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“I never noticed it. I always thought it was normal to be so tired and that the tinnitus, needles in the feet and hands, the numbness, etc was normal,” they wrote.

The unnamed user grew up being deficient and “my parents weren’t really paying attention to me”.

Then at the age of 26 everything changed. A blood test revealed they had extremely low B12 levels.

‘I think my body doesn’t absorb it with food I need the shots,” the user added.

Another user shared a similar story.

“I was pretty ‘healthy’ as far as illnesses and diseases went, but one day my foot began to burn a bit,” the unnamed user wrote on Reddit. “It never returned to normal.”

This was not the end of the story but the beginning as “more symptoms popped up over the next 10 to 20 years”, they wrote.

What explains these symptoms?

B12 deficiency can damage parts of the nervous system. This is known as peripheral neuropathy.

Woman holding her foot

B12 deficiency can damage parts the nervous system, causing numbness, tingling and burning in the feet

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This can cause the following symptoms:

  • Vision problems
  • Memory loss
  • Pins and needles
  • Loss of physical co-ordination (ataxia), which can affect your whole body and cause difficulty speaking or walking

If neurological problems do develop, they can sometimes be irreversible.

It’s therefore crucial to get treated with B12 tablets or injections as soon as possible.

Unfortunately, this is easier said than done. Data from a review of patient experiences and surveys involving more than 2200 patients with B12 deficiency in the UK indicate that many patients have concerns related to healthcare quality, safety, and treatment, with nearly two thirds of respondents reporting that their treatment is insufficient to manage symptoms.

Some patients may experience recurrence or worsening of symptoms when the interval between injections is extended or extended too quickly, and report that continuation of frequent intramuscular hydroxocobalamin injections – one of the main treatments is needed to remain asymptomatic.

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