Personal Story

Christine

Christine
In the summer of 2001, I had an accident that resulted in a broken elbow. I had managed to fragment several pieces from the head of the Ulna, and in 2005, the problems and difficulties the fragments caused led to keyhole surgery to remove the troublesome debris. I was prescribed an opiate based drug to cope with recovery pain. Whilst weaning off this, I realised the peripheral neuropathy, which I had thought was a side effect, was not reducing. A month after stopping altogether, the pins and needles were still there, along with other symptoms which I had thought were medication related such as sudden memory losses and balance issues especially at night and extreme fatigue.
At first, I thought it was just taking time for the symptoms to finally disappear, but gradually they were getting worse, and I also noticed I was more tired and having episodes of fatigue that I had not experienced before. My husband could see I was struggling and insisted I see a doctor. I remember telling my GP how I was so tired of being tired. Blood tests were taken immediately and the results showed abnormal red blood cells. My B12 levels were low, and we had to find out if this was due to my diet or something else. I was prescribed a course of tablets for three months and then had another blood test. This showed my body was not retaining B12 and Pernicious Anaemia was diagnosed, meaning I would need injections for the rest of my life. I was given a loading dose and told I needed this every other day for two weeks. The nurse gave me the details of a website called the “Pernicious Anaemia Society” where she said I would find more information about the condition and that I would need to book appointments every twelve weeks to have the injection repeated.

Of course, I let my family know the situation and on discussing it with my mother, I found out that my maternal grandmother had the same condition and had been quite poorly. I also discovered other family members on my paternal side had the same diagnosis, so it felt a bit like a double whammy.

I never really felt like the injections lasted very long. After each injection I would feel much better, but some symptoms would return within five or six days, and within a couple of weeks I felt I needed the injection again. I had become a member of the PA Society and had read that the tests were unreliable as results had been shown to produce false negatives and false positives. I made many attempts to persuade my doctor that I needed more than the twelve-weekly injections and provided information from the PAS website. This included information from official bodies such as the National Institute for Health & Care Excellence (NICE), but nothing made a difference. My GP was adamant this was the tried and tested treatment that had been working for years, and additional injections were not available. Other members on the website were having similar difficulties, and PAS support groups were beginning to form both physically and virtually.

Through time, I learned some members were treating themselves via different methods including self-injecting. I decided to try this myself, and although I was very nervous about it, Istarted self-injecting. I was managing well for a while; however, my husband was unhappy about this and asked if there was any other way. After further research I found a few alternatives had become available, so I opted for sublingual drops on a daily basis, and found that although not as good as the injections, they were helping.

I had continued having my twelve-weekly injections and over several years was managing well until around April/May 2014, when a letter from my surgery advised me to make an appointment to discuss a routine matter. I had recently had a routine blood test taken that had included another B12 test. From information on the PA website, I knew that when B12 treatment had started, no further tests should be required. My GP advised he was stopping my injections as my B12 levels were too high, and therefore I did not need the treatment. I questioned his original diagnosis, and he advised he must have made a mistake. I was horrified and very upset. My husband was with me, and we spent almost a whole hour arguing the case with my GP, but he was immovable.

Feeling angry, frustrated, and very concerned, I decided to stop taking supplements, wait for six months and then get private blood tests done, as this seemed to be the only way of getting a definitive answer, or proof, that my injections should not have stopped. The first result I received at the end of October 2014, was 1509 pmol/l (Ref range 191 – 663). The next result was in May 2015 at 482, followed by another in June 2015, with the result being 360. A trend showing a drop of 1027 units in the first 6 months and a further 122 units in the last month. It could be said that at this rate there would be nothing left within the next 3-4 months. Clearly my body was not capable of holding suitable levels of B12 to maintain longevity.

Armed with this information, I returned to my GP, gave him the information, and said I wanted injections to be restarted with the normal loading dosage. He was still sceptical and insisted on writing to the Endocrinology Department at the local hospital, which resulted in the advice that treatment should be restarted immediately with loading doses, followed by injections every eight weeks. Since this change, I have been a lot better. I still use sublingual’s due to returning symptoms before my injection is due, but I am managing well.

Sometimes we have to take matters into our own hands, and, for me, this was one of those occasions. Had it not been for the Pernicious Anaemia Society’s research and fight for change, I would not have the information that gave me the conviction to, in some sense, become a guinea pig in order to prove my treatment is a lifetime necessity. Although I would not advise anyone to do the same, I would say keep going, stand your ground if your GP is not listening, and gather some of the wonderful information and tools so readily available today to pass onto your surgery.

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