Cushing's Awareness Day - Emily's Story
Our next story for Cushing's Awareness Day comes from Emily. She talk's about her journey to diagnosis, her treatment and how helpful support groups are for support and to ask questions.
"My symptoms began with cognitive issues that were investigated by the Neurological department, from there, symptoms developed over the years without diagnosis. As well as the cognitive issues - including brain fog and memory problems, I also struggled with my mental health, in particular, anxiety and depression. I gained 40kg in weight, mostly abdominal, alongside stretch marks, weakened muscles, moon face and hair loss. I also became very out of breath doing simple tasks and struggled with sleep. My undiagnosed condition caused significant problems in my teaching career and relationships.
Upon joining a new GP surgery, the locum first saw me and told me he thought that I was presenting as a textbook case of a rare disease and wanted to refer me to the local Endocrine department for further testing. Over the next few months I had many tests and imagery, and an MRI revealed a 4.7mm tumour located on my pituitary gland. An IPSS test confirmed that this was the source of the excess cortisol and I was diagnosed with Cushing’s disease. A bone density scan also revealed that I had Osteopenia, which is the result of the excess cortisol.
In Sept 2021 I had transsphenoidal endoscopic surgery in London to remove the tumour. Recent blood tests and imaging through my local Endocrine department have shown that the tumour is in remission. I am pleased that I will be followed up regularly to monitor for any signs of recurrence. The removal of the tumour left me with adrenal insufficiency, for which I take replacement steroids daily until my pituitary starts functioning normally and producing ACTH again - I also take thyroid medication.
As relatively few people are diagnosed with Cushing’s disease and due to the complexity of the testing process, I am very grateful for the support groups that exist to help people in my position. They are crucial for support and to answer questions and raise awareness and to help people like me to live as full a life as possible."
Emily is a member of the Cushing's UK facebook group, which has lots of great patient support.