I’m frustrated and angry at being ignored for so long. I fell through the net. My experience should become a case study to avoid the problem occurring for other people. – Angus
‘Some 20 years ago when I went home to visit my family in Scotland I was diagnosed with type 2 diabetes and put on oral medication. When I returned home to Adelaide, my doctor conducted the normal HbA1c test and was delighted at the result which showed I had perfect diabetes control and discontinued my medication.
Over the years, numerous health professionals assured me that despite some of my pathology reports showing fasting blood glucose levels on the high side, my HbA1c tests showed I was maintaining excellent control of my diabetes. But I knew my diabetes management was far from perfect. I continually felt unwell and my own blood glucose monitoring showed my levels were high, especially under job related stress. I eventually stopped taking my BGLs as I didn’t see the point.
Frustrated that no one would listen to me, I entered into a research program for people with diabetes. Over a five-year period I had blood samples taken every six months to measure my HbA1c. Again, the results came back showing that my diabetes was continuing to be well-managed.
Eventually, I saw another endocrinologist, who finally solved the mystery of why numerous laboratory-based tests performed over almost 24 years showed my HbA1c readings were within normal range. He ordered a frucosamine test, which measures blood glucose over a shorter period, and following further investigations, told me that I had haemoglobinopathy
I had never heard of haemoglobinopathy so I went away and researched to find out what it all meant. In fact it is an hereditary, uncommon blood abnormality and a pitfall in diagnostics because it interferes with the HbA1 readings. After my diagnosis, I was put on additional oral medication and my diabetes management is back on track.
My story highlights the need for a greater focus on patient-centered care. Health professionals need to listen to what patients say and when results don’t continually add up, people need to be referred to specialist services. When blood glucose results obtained at home over an extended period of time differ substantially from the HbA1c tests, it’s important to consider so called “interfering factors”, one of which could be haemoglobinopathy.’