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Home / Lifestyle

I thought my brain fog was dementia until I discovered it was a vitamin deficiency

By Maria Lally
Daily Telegraph UK·
14 Dec, 2024 04:00 AM8 mins to read

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Could persistent fatigue and brain fog be signs of a B12 deficiency? Photo / 123RF

Could persistent fatigue and brain fog be signs of a B12 deficiency? Photo / 123RF

After years of fatigue, brain fog and countless GP appointments, one reader finally got the diagnosis she needed.

It was a cold, dark, wintery night in October 2018 when Katrina Burchell was commuting from her job as a solicitor in London to her home in Hertfordshire. Burchell, feeling tired and confused, accidentally boarded the wrong train, and when it reached the end of the line in north London, she found herself alone on a dark platform, miles from home.

“It was the third night in a row I had got on the wrong train,” she says. “When I eventually stepped off the train, I was completely lost and confused. The train driver took one look at me and realised something was wrong.”

“He kindly took me back to the main station, and while he did so I explained I had pins and needles in my hands and feet and felt tired and confused. He looked worried and concerned and asked me why I wasn’t getting any treatment. His last words to me were, ‘You deserve to be listened to. Do not leave the doctor’s office until they agree to help you.’”

For some years, Burchell had been grappling with debilitating brain fog and fatigue. She was concerned it was a sign of dementia or a brain tumour, but wasn’t getting any answers from her GP.

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A few days later Burchell had a referral appointment with a haemotologist, and with the train driver’s words in her head, she told the doctor she was not leaving until things were sorted. Soon after she was diagnosed with pernicious anaemia, an autoimmune condition that affects your stomach and is the most common cause of vitamin B12 deficiency.

Burchell, now 60, says her main symptom of fatigue had been present for as long as she could remember: “My mother used to say, ‘If you go to bed any earlier, you will meet yourself getting up’. When I was 19, I went to see my GP and described my fatigue and some gastric problems I’d been having, and he diagnosed me with IBS [irritable bowel syndrome]. He told me it was very common, nothing could be done, and I’d just have to live with it.”

Her GP also tested her B12 and iron levels, but while both were low, they were within the normal range (she says if she were tested now, new guidelines would show her to be deficient). Vitamin B12 is a water-soluble vitamin that helps maintain the health of our cells, metabolism, and DNA production.

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Burchell went on to study law and practised as an intellectual property lawyer for 35 years, working as a solicitor. She also married, had two children and took up running. But her symptoms remained.

“I was functioning, but I was constantly fatigued,” she says. “But it’s like poor eyesight, in that you don’t know what other people can see. It took me a while to realise that not everybody felt the way I did.”

Vitamin B12 deficiency often mimics conditions like dementia or depression, making it hard to diagnose. Photo / 123RF
Vitamin B12 deficiency often mimics conditions like dementia or depression, making it hard to diagnose. Photo / 123RF

Things worsened when she had children (now aged 30 and 26). The nitrous oxide (or gas and air), which is used as pain relief during childbirth, is known to deplete B12 and lead to neurological issues.

She says she was a busy, hard-working mother, something she now feels was used to bat away her concerns. “I was told I was tired because I was a mother, or because I had a stressful job. One doctor even accused me of having an eating disorder.”

“People would say, ‘Oh, you’re just a tired new mum’, or ‘You’re working too hard’. But that wasn’t it. I was physically not able to function.

“I would wake up, have a shower, and then need to lie down to muster up the energy for work. I would sleep on the train and read every email three or four times because the brain fog was so thick. It was all a form of masking, and I often felt like I was hanging on by a thread. At low points, I questioned whether I could live like this long-term and whether I really wanted to.”

Socially, she retreated: “Because I tried so hard to keep it together at work, I had less energy for home, and I noticed family members becoming irritated with me for struggling to find the right words.”

“I became anxious and stopped socialising. I can’t stress enough what the toll was on my mental health. I had panic attacks, thinking I had dementia or a brain tumour because of my brain fog and confusion at an early age.

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“My husband and children were incredibly supportive, however, and even found it funny at times. Once, when I wanted to say ‘pineapple’, I said, ‘You know, the fruit with the Mohican’, which we still call pineapples today!”

During this time Burchell was taking vitamin supplements, including B12, B9 and vitamin C “like they were going out of fashion, just to function”. She visited her GP occasionally with B12 deficiency symptoms, but they were dismissed.

“They said I was getting older, or that I was hormonal and needed a good night’s sleep. No tests were taken.”

This lack of knowledge about B12 deficiency in the healthcare profession is something Burchell says she still sees every day from her charity’s helpline.

However, in 2004 after another blood test, her GP diagnosed her with pernicious anaemia and put her on 12-weekly injections of B12. Burchell feels she was “under-treated” and should have had a higher dose (she eventually did in 2018), and wasn’t monitored.

By this point, Burchell was still tired and had nerve damage in her fingers and the soles of her feet, meaning she couldn’t feel them – which made her clumsy. In July 2010, she fell down the stairs of a London bus and broke her hand. At the local hospital they gave her gas and air for hours, which nobody linked to a further decrease in her B12 levels.

At this point, Burchell changed her job to one where she could work from home, stopped running, developed anxiety attacks and became largely bed-bound, unable to stay awake for more than seven hours a day.

In 2014, she was taken to A&E with chest pains and diagnosed with severe iron deficiency anaemia and developed bladder and bowel incontinence and barely left her house. Soon afterwards, she read about pernicious anaemia online and asked her GP whether her symptoms were connected to that. She was told they were not.

B12 injections can alleviate symptoms but may require frequent dosing for some patients. Photo / 123RF
B12 injections can alleviate symptoms but may require frequent dosing for some patients. Photo / 123RF

After seeing the haematologist in 2018, her condition was finally taken seriously and treated properly. She now gets injections every eight weeks, but more in between if needed. “He was angry with my GP and kept apologising for how long I had been suffering.”

In 2019, Burchell began volunteering at the Pernicious Anaemia Society and took on the role as chief executive after its founder retired. “Better awareness and education about vitamin B12 in primary care is vital, as is a change in attitude to the importance of vitamin deficiencies,” she says.

Burchell says she hears stories from other sufferers with similar stories: “A lot of medical gaslighting goes on, especially with autoimmune diseases,” she says.

“Part of the problem is that B12 deficiency isn’t on the curriculum for GPs. They don’t look holistically at a patient’s overall nutrition or health, or family history. They just look for one symptom and want to treat it with a prescription.

“If I can save just one person from going through what I went through, it would mean the world to me.”

B12 is essential for DNA production and nervous system function, yet many GPs don’t test for it. Photo / 123RF
B12 is essential for DNA production and nervous system function, yet many GPs don’t test for it. Photo / 123RF

Seven signs you may be deficient in vitamin B12

By Dr Harry Jarrett, head of science and research at supplement brand Heights.

1. Fatigue and lack of energy

B12 is essential for energy metabolism and nervous system function, so a lack of it disrupts these processes and your body can’t produce energy effectively.

2. Pins and needles

B12 is essential for maintaining the myelin sheath, a protective covering around nerves. Without enough of it, the myelin breaks down, causing tingling or numbness, especially in the hands and feet.

Fatigue from B12 deficiency is caused by disrupted energy metabolisation. Photo / 123RF
Fatigue from B12 deficiency is caused by disrupted energy metabolisation. Photo / 123RF

3. Sore or red tongue

B12 is vital for producing healthy cells, including those in the tongue. Also known as glossitis, less oxygen supply to the tongue leads to cell death manifesting as a sore, swollen or red tongue.

4. Mouth ulcers

B12 deficiency can affect the health and repair of the lining of the mouth. This can lead to inflammation, slow healing, and the development of painful sores.

5. Muscle weakness

Lack of B12 leads to fewer healthy red blood cells, reducing oxygen delivery to muscles.

6. Problems with vision

Vision problems, including blurred or disturbed vision, can occur in B12 deficiency, although this is less common than the other symptoms. It’s reported to occur in less than 1% of patients and is believed to be a result of damage to the optic nerve.

Tingling in one's hands and feet is a common sign of low B12 levels due to nerve damage. Photo / 123RF
Tingling in one's hands and feet is a common sign of low B12 levels due to nerve damage. Photo / 123RF

7. Depression and confusion

B12 is essential for producing brain chemicals like serotonin and maintaining healthy neuronal function. Low levels can disrupt these processes, affecting mood, memory and thinking.

For a full list, visit the symptoms checklist at Pernicious Anaemia Society’s website.

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