Christine knew that she was not alone. There had to be other pituitary patients misdiagnosed like her with ME or Chronic Fatigue Syndrome. She told her story to them, ending with these words:.=

“I put my heart and soul into my story. I wrote it to help you. I think of you all each and every day now and forever.”

I never forgot her. I did not know her, apart from a few phone conversations some years before her death, but I sensed her quality. I took up her fight with the Society for Endocrinology. Their leaflet at the time described the short synacthen test as “a very reliable instrument in diagnosing adrenal insufficiency arising from both adrenal and pituitary disease.” – a whopper if ever there was one. (See my previous blog for the research that shows it misses two out of five cases arising from pituitary disease). I emailed Professor Wiebke Arlt, who had written the leaflet.

Here, to my surprise, I made some headway. The Professor suggested the wording could be modified to:

“The short synacthen test is a very reliable instrument in diagnosing adrenal insufficiency arising from both adrenal and pituitary disease. Where adrenal insufficiency arising from pituitary disease is suspected and the short synacthen test results do not match the clinical suspicion and symptoms persist, then your doctor may consider to perform an alternative test to assess adrenal function, such as an insulin tolerance test.”

At this stage I had met a lovely journalist called Helen Hague, who snorted when she read this. “If you had a plumber who only came out three out of five times when you called him, would you call him reliable?” But still, the mere suggestion that a ‘normal’ SST might not be the be-all and end-all was worth something. I said I would be happy with the change.

But Dr Debbie Willis, the Society’s Policy and Professional Affairs Manager, was having none of this. She insisted that the leaflet was fine as it was. It was only when Helen called in at the annual Pituitary Foundation Conference and interviewed a few important endocrinologists, asking probing questions about the tests used for diagnosing adrenal insufficiency, that the tectonic plates began to shift. Then, when we discovered that Debbie Willis was not a medical doctor, yet was presuming to override a Professor who had authored some 200 papers on pituitary disease, and when we emailed commenting on the enormity of this, copying in all the Society’s Committee members, at last they caved in. There was an interval of roughly two hours before Debbie’s email arrived saying they were going to adopt the new wording.

A victory!

But nothing lasts. When I looked recently, the leaflet had been revamped once more, and this time you’d never know that the SST isn’t the perfect instrument for diagnosing adrenal insufficiency. Keats’ self-chosen gravestone inscription was ‘Here lies one whose name was writ in water’ and I know how he felt. But we’ll change that wording back, I hope, and maybe the wet lettering will linger a while before it evaporates. Watch this space.