> Panhypopituitarism > Stories

PHP as a result of Tumour at 16 yrs of age.

I was 14 yrs old when I started to have signs that all wasn't right with my body. I was getting headaches and was carrying spare blouses in my school bag as I was leaking breast milk. I never spoke to any one for over a year as I was young and didn't know what was happening to me. At the age of nearly 16 years I went to see a doctor and was told that I needed to be referred to a neurologist. I had blood tests & a scan which revealed a large Macroadenoma on my Pituitary Gland, a Prolactinoma with sky high raised Prolactin levels. By this time I was like a pregnant woman I was gaining weight and so emotional, cried at everything and I had severe crushing headaches with vomiting on a daily basis. I started my period late at 16 yrs of age and didn't have another for a year after. All symptoms of elevated Prolactin hormone mimicking pregnancy. At the age of 16 I went into hospital to have the tumour removed with a 6 week course of Radiotherapy afterwards and a concoction of medication. I was told it was likely I would never experience having children in the future. At the age of 20 I was visiting the specialist looking after me as usual and I asked the question could I be pregnant as I can't explain it I just feel "different"? I was told highly unlikely and on my way home that day I trusted my gut instinct and picked up a pregnancy test. What followed was a complete surprise as it revealed positive! I visited my doctor to find that I was six months pregnant! The pregnancy went well, although at the end I was poorly with my body coping with the extra load and my Hydrocortisone was increased to help my body cope. I turned 21 and shortly after my healthy miracle baby was born! Over the years I have gained a lot of weight and still struggle with my weight. I have PHP and take Thyroxine, Hydrocortisone, Growth Hormone, Vitamin D and Antidepressants. I was diagnosed with Osteoarthritis with severe changes to my bones at the age of 38 and had both knees replaced. I gave up my business as a beauty therapist as I was struggling with the symptoms I was getting with my body, from the condition. I am now 42 years of age, I live on my own and haven't been able to work for the past 7 years. My greatest struggle is the fatigue I get on a daily basis, I still get regular headaches and a lot of muscle tension and weakness. Life is difficult but I am grateful for it and just get on with it and manage the best way I can with family support.

World map of Panhypopituitarism


Find people with Panhypopituitarism through the map. Connect with them and share experiences. Join the Panhypopituitarism community.