Personal Story

DC

At 18 years old I started SRN Nurse Training which I loved and had no problem with Theory or Exams, but physically I was always tired, ending up in sick-bay on Iron. I fell behind my colleagues, not because I was incapable, but because I was constantly anaemic. I left Nurse Training in my 3rd year with the intention of returning after the problem of anaemia could be resolved. That never happened as anaemia and a ‘lamentable form of fatigue became part of my life, a constant malaise that I could not explain. In my 20s, a number of GPs thought I was Coeliac but tests were always negative and no explanation other than Iron deficiency or ‘are you depressed?’ was offered.

My daughter and son were born in the first 3 years of marriage. Again, I was exhausted, did not have the stamina necessary to be housewife/mother struggled to do both but felt a failure compared to others, neglected myself in my effort to make sure the children and my husband were OK. Again I sought GP help and was offered antidepressants. The same rounds of investigation started again which proved nothing except I was a ‘bit low on iron’. I then went privately to a Doctor known to the family where I received a course of Parentrovite injections which were a big help.

I returned to work part-time but I was still plagued with unnatural tiredness. Back again to the GP and the same tests with no positive results for reasons for my symptoms. This GP thought I might be Coeliac, but again asked was I depressed? I was beginning to feel a malingerer. This poor physical state continued, and I believe it was sheer willpower that kept me on my feet, until I was diagnosed with underactive thyroid and told it was ‘autoimmune’ and Thyroxine for life. At this stage I informed the GP that my Mother and 3 sisters also had underactive thyroids and my mother and 2 sisters had Pernicious Anaemia, I expected this information to be recorded on my file Later I had my gallbladder removed and was diagnosed with a Hiatus Hernia while still complaining of terrible tiredness. I kept being asked if I ws depressed to which my answer was ‘NO BUT I’M TIRED OF BEING TIRED’

In 2017 I noticed as well as exhaustion, dizziness, my hernia was playing-up, my hands and feet felt peculiar, I felt embarrassed in shops, I was clumsy in handling things, walking as though I was tipsy ( I do not drink alcohol and stopped smoking in 1998) I mentioned these to GP. Again a barrage of investigations ensued. ,One showed the stomach had atrophy and confirmed my hiatus hernia. In desperation I started a gluten and dairy free diet. I was then told I had PA, would get 6 injections over 2 weeks then my GP “would decide”! I got 5 injections of B12 by health care​ staff, when I presented for sixth injection was asked how I felt I said I felt alive and was then told I didn’t need any more injections. I was so disappointed. I continued to state my symptoms and that I felt ‘short of something’ but I was treated as though I just wanted attention and told to ‘buy over the counter vitamins’ which I did but which had little or no benefit.

From 2017 I started to request copies of my blood tests, until in summer of 2021 a blood test stated “Restart B12 injections”. I was to have B12 every 3 months, After each injection I noticed it lasted for barely 3 weeks and I felt like an old time gramophone, winding down, going slower and slower till I was on the verge of collapse by the next injection, When I raised this I was told see the doctor. I saw the doctor, reminded her I was from a family of PA and Autoimmune sufferers and it was then, grudgingly agreed to every 8 weeks and to buy vitamins over the counter. I was told to keep an interest in things but there was no point explaining again I did not have the energy or concentration for more than 3 weeks.

Having seen Liver Extraction in the home when I was very young before my mother was then put on monthly B12 injections, then seen 2 of my sisters and a nephew and niece on monthly B12, I am amazed at how little knowledge there is about PA. I cannot understand why the medical profession do not take symptoms seriously nor comprehend the effect not only on the sufferer’s life but on partners and the family as well. At least those Doctors in my mother’s day, but sadly now long retired, diagnosed by symptoms or were willing to try medication.

I was so glad to find out about the Pernicious Anaemia Society as it is a great comfort to know others understand how your life can be ruled by a complaint that was known years ago but is now more or less ignored or at best treated by professionals as trivial. I look forward to research and change in early diagnosis by symptom rather than protocols. In the meantime, I continue to ask for monthly injections.