It was around 10 o’clock yesterday that I had a telephone call from a male aged 41. “I have Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia” he said. “The problem is that around a month after having my B12 injections I start going downhill again”.
All I could do was sigh. I knew what would be next. He’d be asking if I can recommend a doctor who specialises in PA. He didn’t.
“But it gets worse” he continued. “In the weeks leading up to my injection I just come home from work and want to sit in a corner and do nothing. I’m like a zombie. I get irritable, I am quarrelling with my partner, I am forgetting things – important things in work. And worst of all I start hallucinating – seeing all kinds of terrible things in the garden and behind the television. They are so realistic that I am genuinely terrified. I have had to go part-time as I couldn’t manage to do my job full-time anymore”.
I asked how often he was getting his injection and he told me that it was every twelve weeks before adding “to the day”. I told him that he should receive an injection every other day until there was no improvement in his physical condition – he has numb hands and feet and keeps falling over. Armed with that information he was going to go back to his doctor to see if he could get the injections every other day. Before the call ended I asked him what he did for a living.
“I’m a senior Psychiatric Nurse” he replied. “And I get hallucinations worse than my patients”.
When will new website be online? I have been tested and have low folate 4 and b12 of 330. I have symptoms of pernicious anaemia not listed under folate deficiency such as palpitations and joint pain. I have seen some research that states anyone under 450 who is symptomatic should be treated. What are others experiences? Got results today but can’t see doctor for 3 weeks, is it worth me taking over the counter folic acid and b12 while I wait?
Hi Jennifer – the best place to get advice is on the online forum. Go to the Pernicious Anaemia Society website and click on Forum on the left hand side – they will be able to give you the best advice.
The other thing he could do is go online, order methylcobalamin tablets [that’s one of the forms of vitamin B12] – and take between 1,000 and 5,000 micrograms daily. There are some instant-dissolve sublingual tablets on the market [Superior Source] that work very well. Or to Holland and Barrett who sell 1,000 microgram tablets. The fact that even people with pernicious anaemia can absorb vitamin B12 via the oral route, if only the dose is large enough, has been called ‘one of medicine’s best-kept secrets’ [Cochrane Collaboration report on comparison between B12 injections and tablets 2009]. It certainly is.
oh god , poor man. hope he learns to self inject. I dont go near any G.P for my P.A anymore had it 15 years now, felt like a slow death. Alls they gave me was a pile of anxiety with no help. Feel like alls they did was prolonged my sufferings untill i would die. I treat myself now with subcut injections and feel great.Take control of it. Best of luck. xx
I know this post is past but this is an aspect of b12 deficiency that bears more discussing, I think.
It is reassuring to hear frank discussion of the psychiatric effects of deficiency, since they are so terrifying to experience and they make it much harder for patients to understand and advocate for proper treatment.
I had been exhibiting volatile moods, weepiness, pessimism, obsession, etc as my deficiency progressed undiagnosed, yet oddly the hallucinations started during initial supplementation. I was given high doses of methylfolate and other nutrients as well as b12 and I do wonder if that played some role.
I had been hoping b12 would be like rain on dry ground, but instead I had a severe increase in symptoms, particularly neurological and psychiatric, and this continues to confuse me.
I cover this in much detail including some very interesting case studies in my latest book – What You Need To Know About Pernicious Anaemia and Vitamin B12 Deficiency…