It could be down to vitamin B12 deficiency Martyn Hooper thought he knew exactly what it felt like to be tired — it was the warm, ready for bed feeling that came after one of his three-day walks in the hills or a busy time in his job as a college lecturer and A-level examiner.It was a nice kind of tiredness from which he would always spring back.But, at 41, he gradually became aware of a new kind of fatigue he’d never known before. Even after a good night’s sleep, Martyn was still tired. He put it down to being the wrong side of 40. ‘I fought it, trying to carry on as normal, but I had to fight harder to keep going,’ says Martyn. was also suddenly more forgetful than usual. I once announced to my wife that the Queen Mother had died — as if it was news to me — yet it was several months after the event. I thought it was all part of becoming middle aged.’There followed a cascade of problems. Martyn’s normally placid, patient nature gave way to snappy irritability with his wife Cheryl, then 36, and his students.
And then, six months after first being aware of this new fatigue, he started to feel so low he often felt like crying. ‘I guessed it was depression, but was too embarrassed to tell anyone — even my doctor,’ he says. There were also physical problems —notably a mysterious numbness in his legs. But an MRI scan could find no sinister cause and Martyn was sent away with a clean bill of health. ‘I never mentioned the tiredness or brain fogs — still thinking they were just part of the ageing process.‘But my legs remained numb and then my balance and gait became a real problem. 'It got to the stage that I had to make a conscious effort to move each leg. I had to use the lift at work, and walk holding on to a wall. ‘Cheryl and I were worried and confused. We didn’t know what to think.’Nine months after the tiredness began, Martyn was falling over regularly. Then his sister, a nurse, insisted he had a blood test for vitamin B12 deficiency. It should be easy to get all the B12 we need from our diet.
It comes from every single animal product - meat, fish and dairy The test revealed Martyn was, indeed, low in B12.Vitamin B12, or cobalamin, is vital to every cell in the body, says Dr Joseph Chandy, a GP from Horden, Co. Durham, who has been studying vitamin B deficiency for 30 years.‘B12 affects every system — nervous, digestive, cardiovascular, endocrine, ear, nose and throat,’ he says. It should be easy to get all the B12 we need from our diet. It comes from every single animal product — meat, fish and dairy. A 100g chunk of cheese provides your recommended daily amount of 2.5mcg. But two problems can affect this. ‘As we age, the stomach shrinks and produces less of the acid needed for B12 absorption to take place,’ says Dr Chandy.‘Second, those with pernicious anaemia (known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’Dr Chandy estimates pernicious anaemia could be behind 20 per cent of chronic disease worldwide.
The range of symptoms caused by B12 deficiency is diverse with no set pattern — but tiredness and low mood are common. In the elderly, it can cause dementia, says David Smith, Professor Emeritus of Pharmacology at Oxford University. ‘B12 deficiency is more common after the age of 60 and, once levels fall below 500 pg/ml (picograms per millilitre — the normal range being 500 to 1,000), the brain starts to deteriorate at twice the usual rate, making memory loss six times more likely,’ he says. Pernicious anaemia is also linked to tinnitus (affecting seven out of ten sufferers), the skin conditions rosacea, vitiligo and psoriasis — it may even be linked to multiple sclerosis, thyroid disease, rheumatoid arthritis and psychosis, says Dr Chandy.‘Unfortunately, too few doctors are aware of this or that treatment is cheap, easy and free of side-effects, with robust clinical evidence for its efficacy.’Many people are not being diagnosed — and, when they are, they are failing to get the treatment they need, adds Professor Smith.
‘NHS guidelines insist B12 deficiency be identified by one of two possible blood tests — both of which are unreliable. ‘One test looks for macrocytic (enlarged) blood cells, which can be a sign of deficiency. The other measures the total amount of B12 in the blood. But you can be B12 deficient and sail through these tests.‘GPs need to look for symptoms that suggest B12 deficiency — then see if these improve with B12 treatment. 'The definition of deficiency in the UK is below 200pg/ml — but harm to the brain can begin at anything below 500.’But therein lies another problem. Most primary care trusts will fund treatment only when a diagnosis has been made.And, as Martyn discovered, the treatment offered is often inadequate. Despite being cheap — 60p per injection — NICE recommends B12 injections only once every three months (after an initial boost of one jab a day for a week, then weekly for four weeks, then monthly for three months). For Martyn, this was not enough.
His brain fogs and leg numbness continued and, in 2003, he had to give up the job he loved. Indeed, a survey by the Pernicious Anaemia Society, which Martyn chairs, found 64 per cent of people find the treatment regime to be inadequate.And there’s a third problem with treatment — as Dr Fiona Porter-Smith, a GP from Penarth, Glamorgan, discovered. She was diagnosed with pernicious anaemia three years ago and, after she found treatment didn’t help her low mood and the pins and needles in her hands and feet, she began to do her own research.‘I discovered that the B12 we use in the UK, hydroxocobalamin, is inactive and needs to be converted by the body before it can use it. 'Not everyone has the necessary enzymes to do this. But, in the U.S., an active form, methylcobalamin, is used.’ This is a far superior product and more easily absorbed, according to Dr Chandy. ‘If the NHS started using methylcobalamin instead of hydroxocobalamin, so many various health problems could be treated and so much money saved on other drugs that the NHS could save £750 million a year,’ he says.
Fiona, 41, takes very high doses of methylcobalamin. She can obtain it only from a private UK consultant and it costs her £200 a month — but it keeps her energy up. Cured of her pins and needles, she has gone on to have her first baby, Alfred, who is nearly three months old. Martyn, now 52, also gets methylcobalamin from a private doctor, but needs a lower dose costing about £45 every two months. He discovered the treatment three years ago, after seeing a remarkable recovery in a woman he met through the Pernicious Anaemia Society. ‘At that point, I still had numbness in my legs and terrible brain fogs,’ he says.But since starting on the new injections, the leg numbness has disappeared and his brain fogs have cleared.‘GPs need to consider B12 deficiency even when blood tests look normal,’ says Professor Smith. ‘They must take notice of what their patients say about their symptoms.’Pernicious Anaemia: The Forgotten Disease by Martyn Hooper (Hammersmith Books, £14.99).