Personal Story

Sheila

It is almost 30 years since I was diagnosed with PA. I have always been anaemic, have never been able to give blood, and struggled to keep weight on until after my diagnosis and treatment. In 1993, when I was 30, I had a cone biopsy (preventative treatment for pre-cervical cancer). I also later began to be physically sick, not being sure why. At that point I was unemployed and looking for a job. I was finding it very difficult – I was constantly exhausted, sleeping a lot, and continuing to be sick while losing weight. This caused problems at home as my now ex-husband perceived me to be lazy. I was behaving strangely and unpredictably, feeling very stressed and anxious. I went to the doctor two or three times and at one point diagnosed myself with depression, which may not have helped with the doctor trying to look any further into what was going on. I began to take Complan and vitamin tablets – you do really know what is going on with your body. People at the job I had started noticed I had a green pallor – a sign of severe anaemia – and I struggled through the day at work. This was 1994.
personal story pernicious anaemia sheila
Eventually I had to stop work as I could barely walk. I got myself to the doctor’s surgery where I collapsed. The doctor was not happy with me – told me I’d done this to myself when I told her I was vegetarian – and sent me off after taking blood, despite telling her I was on my own. The next day she was at the door, trying to track me down as my iron (I think) level was so low I was almost dead. I then spent a week in hospital, where they did a sternal puncture and found megaloblastic anaemia, having also been asked some unlikely questions about whether I’d picked up something while abroad. Pernicious Anaemia was not a consideration at my age according to them! Having finally told my family as I hadn’t wanted to worry them, they reminded me that my cousin on my father’s side and my grandmother on my mother’s side both had PA. I was started on IM injections and spent two more weeks off work. I was very underweight and just escaped having a blood transfusion. I returned to hospital the following week to have a Schilling test, and then another cone biopsy as they still found traces of pre-cervical cancer.

I settled down to the standard treatment of 3-monthly injections, and as my cousin had given his own injections to administer, my doctor also allowed me to treat myself. I had to beg and scrape for needles and I felt like I was treated like a junkie but it was much easier to do it yourself. I also found that a year after diagnosis, I was able to put weight on for the first time, which was great. I had spent a year going downhill to the point of collapse, and a year to recover – I hadn’t really had any neurological problems apart from the strange behaviour. I also later found out that PA can cause false-positive smear tests which was why I had had the two rounds of treatment at that time. I’ve had no positive smear tests since. I have also developed tinnitus in the last few years, which I believe is common in patients with PA.

Over the course of the next few years, I began to decrease the interval between injections as my symptoms returned – feeling more tired and also needing to eat a lot. After an injection I felt normal again. Over the course of the last 28 years since I’ve been self-injecting, I’ve increased the frequency to once every two weeks. In that time my doctors’ surgery had popped up occasionally and we’ve had ‘a discussion’ about how often I inject. At one point they referred me to a haematologist. I was injecting every month at that point in time, and he could see there were no problems so I was left alone by my doctor until a couple of years ago. At this point I was injecting every two weeks and they had finally noticed. Now I had a fight to even talk to them, much less have a sensible discussion about my health and symptoms – they knew better apparently.

So it was back to the haematologist, who knows there is still no problem with what I am doing, and he knows I am probably better informed than he is. However, my doctor won’t budge from her previous advice and will now only prescribe one ampoule a month. I have to go along with this, like a naughty child, as they don’t trust me with a prescription for a box of 5 ampoules. And so began my having to purchase B12 from Germany, like so many others. At least now I don’t have to worry about fighting with the doctor to keep myself healthy – I take what they give me and sort myself out when I need it.

I informed the CQC of the appalling incompetence of my doctors and their lack of knowledge of this condition. It won’t change anything in the short term, nor will the fact that I’m a scientist, and have enough medical papers which I took with me when I went to see them to argue my case and try to provide them with information. Maybe the change in government will eventually create some space in the system for GPs to have more time for patients and to get things right rather than clutch at the wrong straw.

But the good news is, having been diagnosed, I was able to get back to normal, get fit, work full time, had a child, and now can manage things on my own terms, by just taking things a bit easier if I need to and vary my injection frequency as needed. The photo is me at just over 50, just before I began teacher training. There is also a lot of support from groups like this and others online, and it is good to see the research that is being done. There is no need to live a partial life simply because your doctor will not listen and treat you as a patient rather than a condition and a series of numbers on a blood test.
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