(This is the third of a series of posts on B12 deficiency. You can read the first post here.)
The reason vitamin B12 deficiency can manifest itself through such a wide range of symptoms is because B12 is essential to every cell in the body. Together with folate (folic acid) and iron, it works to repair and replace damaged and worn out cells. Without it, every system in the body will gradually begin to break down.
The most urgent, and potentially irreversible, symptoms of B12 deficiency are the neurological symptoms. Things like visual disturbances, numbness and tingling in the extremities, nerve pain in fingers and toes, dizziness and loss of co-ordination, confusion, inability to concentrate and “brain fog.” Every nerve in the body is coated with a substance called myelin that acts like the protective rubber layer on the outside of an electrical cable to insulate and protect the nerve itself. As the cells in the myelin sheath break down and there’s not enough B12 to repair them, the protective layer becomes frayed and damaged, and the nerves start to short circuit. Even the spinal cord, that carries messages from the brain to every part of the body, is vulnerable to damage from B12 deficiency. If damage to the spinal cord goes too far, or continues for too long, it can be irreversible and result in permanent disability.
As part of my research into B12 deficiency, I bought a book called Could It Be B12? by Sally Pacholok. Sally is a nurse, and a Pernicious Anaemia sufferer, so she has a personal interest in B12, and she turned to raising awareness when she discovered the lack of awareness of – and general indifference to – B12 deficiency in the medical community. Her book mentioned several things that I thought would be relevant to my family so, armed with all the information I could find, I talked to them, and suggested they should get their B12 levels tested.
I was shocked by their total lack of interest.
My father and grandfather have both suffered heart problems that the medical community notes can be hereditary, especially through the male line. My research had identified B12 deficiency, and a corresponding rise in other chemicals in the body, as a potential factor in their illness. I suggested my father – and particularly my brother, who had not yet shown any symptoms – get tested for B12 deficiency. My parents pretty much laughed at my concerns and told me to be careful about buying “dodgy supplements” off the internet (I had bought my B12 supplements from Amazon), and suggested I went to my doctor if I was concerned about myself. My brother didn’t even reply to my messages.
(I’ve since learned this is a common reaction when B12 deficiency sufferers try to alert family members to a possible vitamin deficiency that is easy and cheap to treat, so I’m trying not to take it too hard. You can lead a horse to water …)
Nervously, I made an appointment with my doctor.
If you have read this post, you will know I have – had – a very good relationship with my doctor. My past (asthma related) experiences of the medical community were generally bad, with the only person I really trusted being an asthma nurse in Cornwall who actually knew more about asthma than I did. (She had an asthmatic daughter, so she made it her business to know about every study, every drug, every possible side effect or complication …) Most doctors don’t know that because their knowledge of disease is too broad, and the only specialists I had met were distant, and treated me like a sick body rather than a person.
My current doctor, the one I have been with for the last 5 years, had always seemed different. He listened to me, took notice of how I felt rather than just focusing on test results, and over the time I had been seeing him, I had slowly grown to trust him. I even confidently posted in a FaceBook group that he would probably be happy to treat B12 deficiency based on my symptoms alone. After all, it’s a water soluble vitamin, and it’s impossible to take too much of it because your body will just excrete what it doesn’t need.
I told him about my symptoms, about the exhaustion, the breathlessness and the neurological symptoms, that I had been vegan for some time and hadn’t known to supplement B12. As soon as I mentioned the possibility of B12 deficiency, I knew I had made a mistake in trusting my doctor.
“I don’t think you’re B12 deficient,” he told me. “A lot of food is supplemented with B12, and you only need 1.5 micrograms a day.”
“Actually, the RDA is 2.5 micrograms,” I corrected. (In other parts of the world, it’s 3 micrograms, and there are campaigns in place to get that ridiculously low figure raised.)
He shrugged. “Clinical symptoms of anaemia appear before neurological symptoms in B12 deficiency. You don’t look anaemic to me.”
Of course I didn’t look anaemic. I live on the Costa del Sol. My summer tan had barely even started to fade.
He was also wrong. Neurological symptoms can, and often do, appear before any signs of anaemia. In fact, it’s entirely possible to experience neurological symptoms, have blood levels of B12 below the “reference range” and not have any obvious symptoms of anaemia. The body is very good at managing its resources so it can continue to function – just about – for as long as possible.
“You said you’re experiencing breathlessness,” he went on. “That sounds like your asthma.”
“It isn’t my asthma. I can tell the difference between being breathless and having an asthma attack.”
But I could tell he wasn’t listening. He wasn’t interested in listening. When he moved on to suggest that I might be suffering from depression, I realised I was wasting my time and started to extricate myself from the situation.
“I wish I had a doctor who would sit and talk to me like this,” he said, as I was leaving.
I wish I had a doctor who would listen to me.
The hardest thing about this is not the lack of an official diagnosis, and not the lack of treatment from my doctor – I can buy everything I need to treat B12 deficiency at my local farmacia without a prescription. The hardest thing is the betrayal of trust.
I had thought I had a doctor who listened to me, respected me and understood me. After 5 years of him being my doctor, I had believed I could trust him, and I was wrong.
I won’t make that mistake again.
To be continued …