And It's About Time There Was Some Support For Cushing's!
In 2004 I had petrosal sinus sampling which comfirmed I had an ACTH producing tumour but not in my pituitary. In 2005 I had a PET scan which showed I had a dermoid cyst on my ovary. This was removed in October 2005, and was not cancerous.
My story begins in October 2003 when I became acutely unwell.
Previous to this I had all the symptoms of Cushings but unlike some of the people who visit this website I never put 2 and 2 together to make 4!
I went to the Dr with weight gain and fatigue after the birth of my 2nd baby in 2000. I was started on blood pressure tablets.
Suddenly in 2003 after an early miscarriage I lost one and a half stone in a fortnight. Not bad for a life long weight watcher. While people were asking didn't I feel better for it. The truth was I felt dreadful. I had severe shakes, could not climb steps or open jars. Went back to Dr who took bloods which showed my potassium was very low but started me on a different BP medication. I could hardly move off the couch and had developed oral thrush. Dr visited. I thought I may have gynae problems after miscarriage and I was sent to gynae dept. They told me I was not pregnant after doing a vaginal exam. (I knew this). I was sent home. Then the fun began.
I became acutely psychotic overnight and my husband took me to the Drs and then the hospital. After numerous tests, scans and ineffective medication. (Octreotide injections three times a day helped)
I had bilateral adrenalectomy on 23 12 03. I was in hospital for 10 weeks and was in a wheelchair when I came out. They could not find the source of the ACTH. My adrenal glands were clear but at least I was on the mend.
In 2004 I had petrosal sinus sampling which comfirmed I had an ACTH producing tumour but not in my pituitary. In 2005 I had a PET scan which showed I had a dermoid cyst on my ovary. This was removed in October 2005, and was not cancerous. (One other recorded case). Obviously I am on hormone replacement tablets for life.
Although tired at times I am now back at work and back to 'normal' life. I have always had heavy periods and knew hormones ruled my life. I just didn't know which ones.
My experiences have been helped by this website where I have received advice and reassurance that I am normal. I loved reading all the Bio's. The chat forum's are brilliant. Thank you.