Managing mental health difficulties and a pituitary diagnosis

Ali’s story

Sharing stories helps all of us in living with our rare health conditions to be informed and supported in our journeys. All of us have trodden different paths so there are going to be some similarities and some differences to your own experiences in reading this but what we share above all is resilience and the community of likeminded people who share a pituitary diagnosis. So this is my story…

I am Ali and in 2017 felt really unwell. My daughter was not in the UK and I convinced myself, supported by my GP, that this was mental health presenting with anxiety symptoms, dizziness, wave after wave of nausea, fatigue and panic attacks. My mental health had been poor for decades but I really lost the plot feeling more and more physically unwell. On one particular day I told my husband Terry (who is always is there for me) that I felt so bad I couldn’t cope so he took me to the GP for an emergency appointment. Reassured yet again but with a prescription for antibiotics (just in case it was a urinary tract infection) and I was sent home to rest. I got into bed, my husband went to work and I felt I was going to die. A friend came to the house to check on me in concern and really saved my life. Shona took me to A&E and from there I was admitted to be monitored. A pituitary macroadenoma was diagnosed and I was started on hydrocortisone but the burden of long-term mental health, the distress of experiencing my symptoms for months on end and potentially the large doses of steroids to stabilise me formed the backdrop to my mental health deteriorating further in developing a new mental health condition and voice hearing (also called psychosis).

Time moved on and with support from the hospital pituitary team and the early intervention team offering me psychological help, I was prepared to be ready for surgery but no one could have anticipated the intervention of Covid. This prevented the surgery from taking place until restrictions lifted, in 2021.

The surgery was successful in removing the tumour and I will never forget the face of the surgeon when she came to tell me what she had achieved and my own emotional overwhelm in processing this fact, thinking about my husband and family waiting for news – Sophie and Mark and Robbie and Sophie – not being able to visit me because of Covid restrictions.

Any recovery can have its hiccups, as mine did, but adjusting and managing endocrine issues / dosage of replacement hormones, including growth hormone, became more important in this phase to optimise my quality of life to live the best life I can. My visits to the hospital for monitoring continue and the endocrine team are now familiar and treasured faces in my care. I guess I want to say that I am here because of the NHS and the skills, kindness and patience of the team that support me so magnificently, thank you for everything – you know who you are!! To the family and friends who support me in all my ups and downs, all my love and gratitude as always.

Support for your mental wellbeing

We know that living with a rare condition is not easy, and it may have impacts on your mental health and wellbeing. We have lots of resources available to support you and your mental health, throughout your pituitary journey. Take a look at our Psychological Support Hub to find out more.