On December 26, 2014 I went to a local urgent care clinic with pneumonia, confirmed by an x-ray, for which I was treated. I received a phone call from the urgent care clinic a few days afterwards explaining that the radiologist had seen something unusual that needed further examination. After numerous tests my suspected Cushing’s diagnosis was confirmed. Although I’d had symptoms for the prior ten years or so, I had no idea that they were due to anything other than aging (I was 68). My symptoms included weight gain around my middle which for the first time in my life I couldn’t shed, high blood pressure, pre-diabetes, osteoporosis, bright red blotches all over my arms and eventually hands, which came from even the mildest bump (very embarrassing, so I was constantly looking for the right makeup to cover them up, and wearing long sleeves in spite of living in a tropical climate), a full round face, thin skin that would tear at the slightest nudge with profuse bleeding, very dry hair, splitting nails, and a constant bad taste in my mouth (I always carried a toothbrush, toothpaste and gum), etc. All these things were puzzling and upsetting, but since no doctor was concerned I didn’t think it was anything other than my body wearing out.
I had an adrenalectomy at UCSF nearly a year after the initial concerning x-ray. I was told that I should stay home from work for a week, and that I’d be on hydrocortisone until my remaining adrenal gland functioned properly again, but I was given no information about the severity of withdrawal from the huge amounts of cortisol to which my system had become accustomed. I woke up from the “no big deal just one night in the hospital” surgery and felt sick in every cell of my body. The surgeon came in with his friendly face and asked how I was. I told him I was sick and he asked where – all I could do is repeat “everywhere”. He said he couldn’t help me if he didn’t know where I was sick, and I wondered in my grogginess how I was supposed to answer when the answer was that it was everywhere in every way. At home I slept nearly continually. After 5 days I saw some slight progress when I was able to wash my hair before falling back in bed.
When I returned to the surgeon after a week he upped my hydrocortisone, at the same time telling me, as did my endocrinologist, that there was no reason I should feel so ill. The same day the surgeon increased my hydrocortisone my endocrinologist lowered the dose. I was told that I may be having an extreme reaction to the anesthetic, or perhaps I’d had too many surgeries in a short period of time (I’d had knee replacement surgery 6 months prior from which I had fully recovered). My doctors also said I’d feel better in about 6 months (never had I been told anything about a long recovery period). When I showed my endocrinologist my swollen ankles he said he didn’t know the cause, nor about the aches, fatigue and nausea – one of his theories was that the cortisol had been masking the normal aches and pains of aging. He discouraged internet research, saying there’s “too much misinformation out there”, but when I asked for a suggestion about a medical textbook, he said that it would be too hard for me to understand. I did buy a medical textbook on Cushing’s (Cushing’s Syndrome, Ed. Lewis S. Blevins, Jr. M.D.), and therein learned about the extreme discomfort faced by patients undergoing “withdrawal syndrome” and finally felt validated. I also discovered CRSF, and was thrilled to discover this wonderful resource for understanding my situation, no longer feeling so alone and confused.
What lay ahead was a very challenging, requiring me to make important life changes. My fatigue and nausea were severe, leading to my decision to stop working and cancelation of numerous plans. For months I also felt like an empty shell of a human being and wondered whether I would ever again have a personality – it was the weirdest thing, feeling as if I had no center.
Today my body is different in mostly good ways. Immediately following surgery my blood pressure was normal, I was no longer pre-diabetic, no red spots ever appeared again, nor does my skin tear as it had. I also lost the excess weight, and eventually my “real” hair and nails came back. I am grateful for these wonderful results, and that I had the good fortune to be alerted to the adrenal tumor by a most perceptive radiologist. The depression eventually lifted, my core sense of self returned, and I feel good. The bad taste in my mouth disappeared, so I’m no longer a compulsive teeth-brusher, and I was relieved of nausea after four months. I no longer have the high level of energy I enjoyed prior to surgery, and I’m cold when others are either warm or comfortable, so I just wear more layers, and these are things I can live with.
Gradually I’ve developed better muscle tone after the loss of muscle caused by Cushing’s, with lots of exercise, and I am grateful that I can do yoga, long walks, and other physical activities. I still get extreme fatigue and nausea from time to time after stressful events, such as international travel, and there’s nothing to do except to rest for a day or a few days until I feel better. I’m enormously grateful for the unending support of my husband, family and friends, and to the Cushing’s community for helping me along this strange journey.
HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap
