A must-read for anyone who thinks they may have cortisol deficiency or GHD
Once upon a time there was a Yorkshire lady named Christine Wrightson. Here she is.

You can see the kind of person she was: downright, valiant, not to be messed with.

She got ill. She’d had arthritis for decades and in 2005 she got a virus that wouldn’t go. She got exhausted easily, she was dizzy, she had tinnitus and blurred vision, vomiting, palpitations, poor circulation (causing a deep vein thrombosis in her leg) and hot sweats. Her blood pressure veered wildly. She felt as if she was going to die.

She saw consultant after consultant but nobody could say what was wrong. At last an endocrinologist suggested a pituitary problem and gave her the SST or short synacthen test, a test that claims to diagnose cortisol deficiency. It came back normal.

She was getting worse. “I became toxic, everything I ate tasted like poison,” she said. “The only thing I could tolerate was rice pudding.”

She had a private saliva test which cast doubt on the SST, but the NHS ignored this. Emeritus Professor Malcolm Hooper explained that the test only shows whether the adrenals work when stimulated. If the pituitary isn’t stimulating them, the SST will not pick this up. He asked if she could travel. She said ‘possibly if I lay down in the back of the car.’ He gave her the name of a consultant who would test her correctly. This is how she got the glucagon stimulation test, which showed she was profoundly deficient in both growth hormone and cortisol. At last, nearly four years after the onset of her symptoms, she got replacement hormone treatment.

Her complaint to the NHS was not upheld. A consultant endocrinologist stated that if the SST was ‘unequivocal, no further testing was necessary.’

Christine was determined to save others. Despite her poor health, she got coverage in local newspapers and wrote to the Strategic Health Authorities (the fore-runners of CCGs, now called Integrated Care Systems) who agreed that the SST did not diagnose pituitary-related cortisol deficiency. She lobbied 1400 MPs. She and her friend Jill Mizen, another SST sufferer, complained to the Ombudsman and urged the Society for Endocrinology to explain this in their revised leaflet. When they did not, she lost heart and died soon afterwards.

The story of the short synacthen test will be continued in my next blog

Christine’s full story can be found here and Jill Mizen’s here.