When having memory loss is a sign you need more vitamin B12
But getting the right treatment can be hard, as Suzie found
WATCHING footage of singer Suzie Mac performing live on stage, it’s easy to see why she was spotted by record scouts on the lookout for new stars. Just over a year ago, her youthful energy was electrifying.
However, fast-forward 14 months and Suzie sometimes struggles to walk even a few yards on crutches.
Even the slightest exertion can leave her bedbound for days, sleeping for up to ten hours at a time. Her limbs are constantly numb and weak, and her hair has fallen out in clumps.
Her memory is so poor she can hardly remember the words to her own songs.
Suzie, 25, says: ‘My lowest moment was when the doctor asked me my parents’ names and I couldn’t recall them.’
But it is not a rare, tropical illness that’s had this effect. Her neurologists say it is vitamin B12 deficiency, a problem that experts believe thousands may have.
Vitamin B12 — found in red meat, fish, dairy products and fortified cereals — is important for brain and nervous system function, helps the body produce red blood cells, converts food into energy, and plays a role in regulating mood.
Most people absorb it naturally without problem, but deficiency is not uncommon — particularly among older people.
‘Studies have shown that at least 10% of people aged 65 and over are deficient,’ explains David Smith, a professor emeritus of pharmacology and an expert on the condition.
‘As we get older, we don’t produce as much of the stomach acid and enzymes which break the B12 off the proteins in food, so we don’t absorb it as well.’
At least 20% or more of vegans and vegetarians are deficient, he says.
And some people are unable to absorb the vitamin naturally in the intestine. These include patients with pernicious anaemia, an autoimmune condition where the body attacks cells in the stomach that produce a protein called intrinsic factor, which helps it absorb B12.
Conditions such as Crohn’s disease, where there is inflammation of the digestive system lining, can have a similar effect.
Patients taking acid reflux medication long-term can also become deficient, as it inhibits acid secretion in the stomach, which, in turn, limits the body’s ability to extract B12 from food.
DIAGNOSIS typically involves a blood test to check levels of B12. Doctors can also look for enlarged, or ‘macrocytic’, red blood cells. The body needs B12 to help with cell division; without it, undivided cells will simply grow bigger.
The definition of deficiency is a reading below 148 pmol/L. But some experts maintain that thousands of patients with higher readings than this are still not getting enough.
‘The traditional cut-off values for deficiency are too low and deficiency is more common than generally thought,’ explains Professor Smith.
‘We have evidence that people suffer harm from levels up to 300pmol/L, yet they receive lab reports saying their levels are normal. That’s why it’s important to ask for your exact level if you’ve been tested.’
The signs of deficiency — which typically include tiredness, muscle weakness, disturbed vision and numbness or tingling — are insidious and slow to develop, he says, so ‘people often think they are just getting old’.
‘Or they may go to the GP and they sometimes are misdiagnosed with depression. This condition isn’t obvious like a heart attack or a stroke, it builds up slowly.’
But early treatment can make a big difference, says Professor Smith. ‘Memory loss is one of the key signs of advanced deficiency. If they are caught early enough, the neurological signs can improve after treatment.
‘We did a clinical trial in Oxford on people with memory problems. They had mild cognitive impairment, but had not been diagnosed with B12 deficiency, having not met the official cut-off.
‘However, we gave them 500mcg of B12 every day for two years and almost halted the shrinkage of the brain and slowed the memory loss.’
Dr Rangan Chatterjee, a GP and presenter of the BBC series Doctor In The House, says GPs need more education to spot the symptoms: ‘Every week, I see patients whose test results are technically normal, yet who are still complaining of vague symptoms. One patient, aged 36, kept falling asleep with extreme fatigue and suffered night sweats, waking up with his sheets drenched.
‘When I put him on vitamin B12 supplements, he said it was like switching a light on.’
Dr Chatterjee says there is no harm for patients in trying supplements for four weeks as any excess is expelled through urine. ‘People can also help themselves by eating animalderived food, particularly liver and liver pate (a good source of vitamin B), milk and fish, especially shell fish.’
Suzie Mac’s B12 deficiency appears to have had a more unusual cause. Her health deteriorated dramatically following an extreme allergic reaction (known as anaphylaxis) to peanuts. After a gig in February last year, she ate a spoonful of curry that contained nuts. Suzie’s mouth, tongue and throat immediately swelled. She vomited and collapsed, and had to be taken by ambulance to hospital, where she was kept overnight.
‘After that I was drained of energy. Over the next few weeks I couldn’t keep awake,’ she says. ‘I had a terrible stabbing pain behind my eyes, and pins and needles in my arms and legs. My hair also began falling out.
‘In June, I went on a songwriting workshop in Spain. I couldn’t remember the lyrics or melody of songs I had just written. One night, I had severe cramp and fell to the floor. I lay there for hours, too weak to move.
‘On the flight home, my legs became numb and swollen and my mum raced me to hospital.’
Suzie was admitted for tests, including MRI scans (to rule out a brain tumour) and a lumbar puncture, where a needle is inserted into the spine to extract fluid. Tests revealed her vitamin B12 level was just 155.
Exactly why her allergic reaction led to this remains something of a mystery. There is no known link between anaphylactic shock and vitamin B12 deficiency, although Professor Smith insists more research is needed to rule one out. ‘It could just be a coincidence or it could be that pernicious anaemia is linked to severe allergy because both involve the immune system,’ he says.
ONCE diagnosed, Suzie was treated with hydroxocobalamin, an injectable form of B12, with eight 1 mg doses over three weeks (injections are given in more severe cases to ensure it is absorbed straight into the bloodstream). This was then dropped to one jab every three months, despite guidelines which say those with neurological symptoms such as memory loss and depression should receive more frequent treatment.
Suzie had shown initial improvement with the higher dose of B12, but deteriorated fast when the dose was dropped, and had to move in with her parents.
‘Some people need the injections more than one every three months,’ says Professor Smith.
‘We need further research, because many GPs won’t increase the dose, and patients are forced to buy B12 over the internet in desperation, injecting themselves to relieve symptoms.’
To reduce the risk of deficiency Professor Smith says over-50s should take a 500 mcg vitamin B12 tablet daily with food. He is also pushing for vitamin B12 deficiency screening in memory clinics.
Meanwhile, Suzie is fundraising for treatment with Dr Stephen Dreskin, an allergy and immunology specialist at the University of Colorado in the US who has researched a possible link between anaphylaxis and B12 deficiency.
‘I’m fighting to get my life back,’ she says. crowdfunder.co.uk/suziemac musicandmeds/updates