I first began to feel very tired and hazy in the nineties. I had a history of being diagnosed anaemic every year or so when I gave blood and was given the usual iron tablets. I visited my GP in about 1996 who took a blood test and said I was extremely anaemic. He put me on the usual iron tablets but after several weeks and more blood tests I was referred to Colchester hospital as I was still anaemic. This resulted in an endoscopy and a colonoscopy which found nothing. Various tests and appointments at the hospital drifted on until in February 2002 when I was referred to the Consultant Haematologist. More blood tests, a barium Xray and a special scan for Meckel’s diverticulum, all of which proved nothing. I seem to remember I had more than one endoscopy but it was long time ago to remember the details. Eventually my GP called me in and told me I had PA, no explanation, just I would need three loading injections then three-monthly injections for life and all would be well.
It was at this point that I resorted to Google to try and find out more about PA and discovered the PA website and all the information this gave on the condition. This has been my only source of information. The PAS was also asking for help from anybody with accounting and charity knowledge. As I was a Finance Director of a large charity, I volunteered my services and have been a trustee of the society ever since.
I cannot remember that the injections made a lot of difference to my feeling tired and mussy. I tried a doctor in Cardiff who gave me an infusion of cobalamin, this made no difference. I tried various tablets from Amazon but these didn’t help. I obtained cobalamin from an online veterinary medicines shop, which was extremely cheap compared with overseas suppliers, to self-inject, this I think helped. As recommended by the PA society I told my GP I was self-injecting and was told that as I was putting unknown substances into my blood, he would no longer take any blood tests from me. As I was moving to a new village at this time, I changed my GP. Eventually the online supplier asked what animal I was treating and that I needed a prescription from a vet to
My new GP has continued the three-monthly injections even through the lock down, but is pedantic on not a day before the three months. I found out my medical record is marked beware this patient is a trustee of PAS. I have a blood test nearly every year but the only result I get is the receptionist saying no problem. I retired from full time accountancy 11 years ago, but for the last few years of working I found that I had to do as much of my work as possible in the morning as I was in a little mussy dream world in the afternoon and could not concentrate. I
volunteered with the National Trust as a guide at Flatford, home of John Constable, but had to give it up as some days I could not even remember Constable’s name let alone dates and other family names, which was very embarrassing when in front of a group. I find that I have good days when I only feel a little mussy and tired, other days I do not feel “with it “all day and cannot concentrate on anything. I find I am better in the summer when I can be out in the sun for much of the day. I cannot work on a computer for long without my concentration fading. I have the usual problem of not being able to find even the most common of words, my wife is used to having to fill in words for me as I speak.
I have been alarmed over the years at the lack of knowledge of PA by GPs and by hospital doctors and nurses. If they have even heard of it, they just think a 3 monthly injection is all that is required and all symptoms will disappear. All the GPs I have seen over the years were frightened to disobey the NICE guidelines in fear of being struck off.
The society has worked hard over the years to get PA recognised by health professionals and at last it seems with the NICE review some notice is being taken that the diagnosis and treatment of PA has fallen short of that expected. The charity is supporting the research into the 10 Uncertainties identified during the JLA process which hopefully will lead to an improvement in the diagnoses and treatment.