Pat McBride is the Head of Patient and Family Services at The Foundation and editor of our members' magazine Pituitary Life. She has been involved with the charity for 23 years and here she shares some of her story:
In 1995, when I first heard that this charity had been launched, I phoned and spoke to Sue Thorn, one of our Founders. I soon became a volunteer and started Liverpool Support Group in 1996. The support and information I gained was just incredible, as there was literally nothing like this when I was diagnosed and operated on in 1986.
My symptoms began in 1985; my periods stopped, I had a raging, insatiable thirst and headaches that progressed to feeling as though someone had dropped a bag of cement on my head. On numerous visits to my GP, I was checked for diabetes, which I didn’t have, and I was diagnosed with migraine. I struggled through many months, drinking massive amounts day and night, weeing every 20 minutes (day and night); the headaches had become excruciating and I would projectile vomit – once I managed to do this right across the bedroom!
I was eventually referred for tests at a local hospital. The tests they did came back clear and I was told I had a clean bill of health! They thought it may be my ‘female hormones’ and said I should see a gynaecologist. The appointment wait was six months, but, as I still felt so ill, I paid for a one-off consultation and was seen within a week. The gynaecologist listened, took some bloods and ordered a brain scan. Within a few weeks, I was told I had a bulge on my pituitary gland (I hadn’t a clue about anything ‘pituitary’ then), and he referred me to an endocrinologist, where I had more tests, including a water deprivation test and a MRI. DI was diagnosed – desmopressin heaven! Within the next several weeks, I met the surgeon (Mr Pat Foy), and had a craniotomy as he didn’t want to bring ‘whatever it was’ down my nose via transsphenoidal surgery. A primary pituitary abscess was found and after seven days recovering, I came home. In those days, heads were fully shaved for craniotomies, and with the high doses of steroids, I went from seven and a half stone to 12 stone in just three months post-op. Although I felt better and the headaches had stopped, I was very upset – who on earth was this person looking back at me in the mirror. My endocrinologist at that time sent me to a dietician as I was gaining weight so fast – the steroids made me eat so much, until the doses were tapered down.
33 years on, I take all pituitary hormones. I have met so many lovely people through The Foundation and our local group; you are brave, inspirational and it’s a privilege that we can walk this pituitary journey together. If I answer your call or your email, or meet you at events, I hope you’ll see from reading my pituitary journey that I ‘get it’; I understand.