Louise Miller, 47, from Gedling, first started experiencing troubling symptoms in the autumn of 2021. The community psychiatric nurse developed breathlessness and pain in her muscles, despite being active and healthy.
At first, she put her symptoms down to carrying heavy bags and getting in and out of her car a lot as part of her job, which she’d only started recently.
After speaking to her GP, she started doing physiotherapy, but her symptoms remained the same and Louise was still “in agony with her neck and back”. Louise said: “I couldn’t even get out of bed. I couldn’t shower.”
After numerous blood tests and a wrong diagnosis of fibromyalgia, Louise, who was receiving treatment for a vitamin B12 deficiency, decided to seek advice from a B12 deficiency Facebook group. An online stranger advised her that, judging by her blood tests, her iron and vitamin D levels were too low for the B12 to be absorbed, which triggered her symptoms.
The 47-year-old said: “I was really struggling at work and despite doing the B12 injections, I still felt like I had no energy and I was struggling to get around. I was on my knees and I’d gone from being a healthy person doing spin classes, body attack, and playing football to not being able to walk.”
The B12 injections that Louise was receiving were making her iron levels drop further. Because of this, her body wasn’t able to absorb the B12, leaving her bedridden for six weeks. She said: “I wanted to drive to my mum’s to stay with her and I couldn’t feel my foot on the accelerator, it was really, really scary.”
Louise then received a high dose of vitamin D and tablets to help drive her iron levels up, after which she started doing B12 injections again. These went from every eight weeks up to every 12 weeks.
However, the NHS website states that B12 deficiencies should be treated with injections every other day.
After getting further tests at haematology and neurology departments and everything looking okay, Louise decided to order her own injections to do every other day in June 2023.
She said: “Seven months later, I’m really starting to feel the difference. The B12 group says it takes about two years to get back on track so it’s taking a while. The group saved me, though, so thank God for it because I don’t know where I’d be.
“I now have to continue reversing all the damage done to my back and neck and energy levels. I was getting a lot of tingling and numbness in my hands. I’m lucky I caught it at the right time.”
Louise now wants to raise awareness of the condition. She added: “I want to bring awareness around the fact that this could be why so many people are suffering from what may seem like a simple vitamin deficiency, but that is actually not that simple due to the treatment it requires.
“There are many co-factors regarding why B12 can become hard to absorb such as vitamin D, magnesium, iron, and folic acid and GPs never tell patients about this.”