Patient with complex condition shares her story

Our Endocrine and Clinical Investigation Unit (CIU) team recently shared the story of a patient who was successfully treated for a complex condition caused by having too much of the hormone cortisol in the body.

Sarah, 32, was referred in 2019 after she presented with symptoms suggesting Cushing’s, which can be caused by a growth in the pituitary gland (Cushing’s disease) or a tumour in one of the adrenal glands (Cushing’s syndrome).

“Unlike many endocrine conditions, Cushing’s requires several investigations to find the correct diagnosis,” said Neetha Joseph, Senior Endocrine Specialist Nurse.

“Sometimes this can take months or years and we followed Sarah very closely. We formed a very strong bond with her. Once diagnosed, she had to have some medication to block the excess cortisol production while she was waiting for surgery.

“She had pituitary surgery in May 2021 and was then started on hydrocortisone to replace the steroid hormone.”

Some patients will be on more than one hormone replacement therapy after pituitary surgery.

“Sarah had several appointments with our team to review medication, have further blood tests and we also provided psychological support pre and post-surgery.

“Cushing’s disease can affect people’s physical and mental health. Sarah was able to contact us by telephone and we also provided face-to-face appointments when required.”

“Everything I have experienced is nothing but kindness and empathy,” said Sarah.

“Neetha and her colleagues were constantly in touch with me throughout the testing and recovery, they eased all my worries and I feel like they genuinely care about me.

“I was followed up regularly and had telephone calls even after I had left just to ensure I was coping OK. I am very lucky to have been looked after by such a wonderful and highly skilled team.”

Although Sarah is now recovered there’s a chance Cushing’s disease might return, so she’s closely monitored with regular blood and urine tests.

“Sarah is currently taking steroids as part of her therapy, but she’ll need a lifelong follow-up with our team,” added Neetha.

The Clinical Investigation Unit was opened in 1981- the first out-patients day unit – and had only two consultants and a staff nurse.

“The team has expanded and now we work with 12 consultants and have five specialist nurses,” said Neetha.

“We perform a wide range of complex blood and urine tests to diagnose and monitor patients with endocrine or hormonal disorders. These can be genetic or caused by tumours in one of the glands.”

Over the last year the team performed more than 1,000 tests and 500 infusions and injections to treat conditions such as acromegaly, osteoporosis and thyroid eye disease.

“Many endocrine conditions are lifelong, so it is vital that patients and their families understand their conditions in detail,” added Neetha.

“The endocrine specialist nurses play a key role and provide individualised education sessions for some patients and carry a wealth of information resources and leaflets in the unit.”