It was May last year when Julia Wheeler started noticing the symptoms – she was feeling fatigued and short of breath and suffeing shooting pains in both legs.
Julia, who works as a nurse, saw her GP. After a blood test she was found to be low in vitamin B12, a nutrient that the body needs to develop, maintain and repair nerve cells and make healthy red blood cells. A deficiency can cause symptoms including extreme fatigue, feeling weak, shortness of breath, impaired cognition, and pins and needles (paraesthesia).
She was prescribed tablets, but found that her symptoms didn’t improve. In fact, they got a lot worse.
“I couldn’t concentrate,” she says. “I struggled to remember things. I couldn’t remember the way to my local shop, and I no longer felt capable driving. The world felt very confusing.”
She had several phone calls with her GP and even visited A&E, but each time she felt fobbed off.
Julia – who lives with her husband in Buckinghamshire, and has three adult children – started feeling uncharacteristically depressed, to the point where she wrote a suicide note to her son.
Eventually, deciding that the stress of her job might be contributing to making her ill, she decided to retire in August last year. Then, while searching online for answers, she started reading more about vitamin B12 and wondered if it could still be playing a role.
She saw a private doctor specialising in B12 and iron, who looked at her medical history and blood tests. Although she ate meat and dairy – the main food source of B12 – and took tablets, the doctor said her levels might still be low because her body was not absorbing it, potentially due to the medicine she takes.
On the doctor’s advice, Julia began self-injecting the vitamin twice a week and now, months later, she has starting to feel like her usual self again.
“I feel massively better and feel like I have a future,” she says. She pays about £120 for 100 vials that last about a year. She also takes supportive supplements such as folic acid, vitamim D with K2, and iron supplements.
About 6 per cent of adults under 60, and 10 to 20 per cent of over-60s are thought to be B12 deficient. It is a known problem among people who follow vegetarian or vegan diets, and they are advised to supplement, but Katrina Burchell, chief executive of the Pernicious Anaemia Society and chair of the B12 Alliance, says a whole range of groups can be susceptible.
“Some people might not be absorbing B12 because they have an autoimmune disease, have had stomach surgery, or some sort of bacterial infection, or they have Crohn’s, or damage to their stomach cells,” adds Burchell.
Medication including heartburn drugs and the diabetes medicine metformin can impact absorption, as can weight-loss injections. The risk grows with age: as people get older, they produce less stomach acid, which helps release B12 from food so that it can be absorbed.
Culzean Tate, 32, an administrator from Essex, was diagnosed with low B12 two years ago after experiencing symptoms such as fatigue, muscle weakness, brain fog and back pain. She says she believes the deficiency may be down to a gut condition called small intestinal bacterial overgrowth (SIBO) – an excess of bacteria growing in the small intestine.
Culzean Tate couldn’t get out of bed and had numbness and weakness as a result of low B12After blood tests with her GP she was given six B12 injections. Initially her symptoms improved but months later they returned. Her doctor said her B12 levels fell within range and no further action was necessary, but she continued to experience muscle weakness and numbness, and memory loss too.
“I struggled to get out of bed unassisted due to issues with my back,” says Culzean. “I saw a physio for my back pain but it didn’t really improve. I couldn’t walk far distances without getting very tired. I couldn’t remember things and my friends and colleagues started noticing. I knew something was wrong.”
After no joy with her GP, she joined a support group on Facebook – Vitamin B12 Wake Up – which led her to a private specialist.
Culzean was diagnosed as being both B12 and iron deficient, given an iron infusion, and recommended to self-inject B12 twice a week while taking supplements such as folic acid and vitamin D.
Now, while she still has the “odd symptom”, she says the suffering has lifted to a great extent: “I can get out of bed easy, there’s no numbness and my brain fog has improved.”
Many low B12 patients say that GPs are failing to diagnose or treat the condition adequately.
The B12-Alliance is an international coalition that was set up by Julian Owens, whose daughter Georgina killed herself after suffering delusions due to a B12 deficiency several years after she had turned vegan. He is pushing for politicians and health leaders to adopt National Institute for Health and Care Excellence (Nice) guidelines, which include treating those experiencing neurological symptoms with B12 injections every other day, given that for many, tablets do not suffice.
“Tablets will work for some, but if people are experiencing neurological problems as Nice says, you need injections,” says Katrina Burchell. She points out that if people are having issues absorbing B12, they are probably struggling to absorb other vitamins. “That’s why many people need to supplement and take iron, vitamin D and folic acid,” she adds.
Dr Andrew Klein, a doctor specialising in B12, agrees that many patients are not receiving the diagnosis or treatment they need with their GPs. “There is often zero or very little training on nutrition and micronutrients in medical school and GPs need to be trained to better recognise and treat B12 deficiency,” he says.
Klein says a normal B12 range is 350 and above. Lower than 350 is borderline and may cause symptoms, while under 200 is considered B12 deficient.
He believes health professionals need to listen to patients, follow the Nice guidelines, provide better tests to all patients to get a diagnosis, teach patients to self-inject with B12, and prescribe them the injections.
“We don’t make diabetic patients go to their practice nurse for their injections or buy their insulin online – so why do we do this for patients with B12 deficiency?” he says.
B12 deficiency is a growing problem, he believes: “Dietary changes – for example, vegetarian and vegan diets increasing, and gastrointestinal issues like IBS due to modern diets and lifestyles, are leading to problems absorbing B12 and other micronutrients, while weight-loss injections lead to poor absorption of B12.”
Culzean Tate is glad she has now got the right diagnosis, but ads: “Although my B12 was within range it was really low in that range and I was still experiencing neurological symptoms. There needs to be more awareness and understanding on B12 deficiency for medical professionals and the public.”
When life is difficult, Samaritans are here – day or night, 365 days a year. Call them for free on 116 123 or visit www.samaritans.org
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