Cushing's Syndrome Support Group
Cushing's syndrome is an endocrine disorder caused by excessive levels of the endogenous corticosteroid hormone cortisol. Symptoms include rapid weight gain, atrophy of the skin (which gets thin and bruises easily) and others. Patients frequently suffer various psychological disturbances as well. Join the community to get support and find others who know what you're going...
Hello:
When I was 21 years old I was told that I had borderline high blood pressure. But I also had hypokalemia and was very thin at the time. They attributed the blood pressure to needing potassium. On and off for the following ten years I was diagnosed with the same condition, but again I was thin and no one was very concerned. But then I suddenly started gaining weight for no reason. My doctor said that my metabolism was slowing down and that it was normal. She suggested that I needed to eat a healthy low fat diet and exercise more. It didn't matter because the only success that I had controlling my weight was following a strict stage one Adkin's diet. In the proceeding years my weight yo-yoed, but never out of the overweight to obese range. I developed high cholesterol, uncontrollable high blood pressure and type 2 diabetes. I also had breast cancer and another rare heart condition known as Congenital Long QT Syndrome, but those are unrelated. Because I have had so many medical problems I get watched medically pretty closely and have had numerous abdominal CT scans, especially over the last 10 years. I recently had another one and the report said I had a 7 mm thickening on my left adrenal gland. It referenced another study done nine years before that also mentioned the thickening and said that it was essentially unchanged. The test was requested by my nephrologist who said "It hasn't changed in nine years so don't worry about it." But I wasn't willing to so casually blow it off. Something was keeping my body from being able to control either by blood pressure or my electrolytes. When I asked about it I was told that I had hyperaldosteronism and high cortisol levels. I decided that I needed to see an endocrinologist to get to the bottom of this. I called the Emory Endocrinology Clinic here in Atlanta and was seen by an endocrinologist. She walked in the room and immediately started talking about Cushing's Syndrome. I was expecting her to talk about Conn's Syndrome. She showed me that the left adrenal gland does have a thickening that she said she was sure that it was an active tumor. She also showed me that the right adrenal gland is significantly atrophied but still functioning. She said that would be caused by adrenal Cushing's Syndrome. She also pointed out all the Cushing's symptoms that I have been having. I do have the moon facies and the buffalo hump along with the facial reddening and hair. My hair has significantly thinned out and I bruise very easily. I also have many spider varicies all over my body. About the only symptom I don't have is the straie. But because a great deal of the skin from my abdomin and chest were sacraficed during my mastectomy and reconstruction it is impossible to tell if I wouldn't have them. She want's me to do a 24 hour urine sample but I have to detox from spironolactone before I can do the test. It's crazy but as afraid as I am that I do have Cushing's, I will almost be relieved if I do. It will mean that I can finally say, that I'm not lazy with bad eating habits. I'm sure that other doctors will just roll their eyes, but I will know. And if it can be taken care of, maybe my body can heal from this. So this is my introduction. Please feel free to give me all the advice that you want. I'm sure that it will help.
When I was 21 years old I was told that I had borderline high blood pressure. But I also had hypokalemia and was very thin at the time. They attributed the blood pressure to needing potassium. On and off for the following ten years I was diagnosed with the same condition, but again I was thin and no one was very concerned. But then I suddenly started gaining weight for no reason. My doctor said that my metabolism was slowing down and that it was normal. She suggested that I needed to eat a healthy low fat diet and exercise more. It didn't matter because the only success that I had controlling my weight was following a strict stage one Adkin's diet. In the proceeding years my weight yo-yoed, but never out of the overweight to obese range. I developed high cholesterol, uncontrollable high blood pressure and type 2 diabetes. I also had breast cancer and another rare heart condition known as Congenital Long QT Syndrome, but those are unrelated. Because I have had so many medical problems I get watched medically pretty closely and have had numerous abdominal CT scans, especially over the last 10 years. I recently had another one and the report said I had a 7 mm thickening on my left adrenal gland. It referenced another study done nine years before that also mentioned the thickening and said that it was essentially unchanged. The test was requested by my nephrologist who said "It hasn't changed in nine years so don't worry about it." But I wasn't willing to so casually blow it off. Something was keeping my body from being able to control either by blood pressure or my electrolytes. When I asked about it I was told that I had hyperaldosteronism and high cortisol levels. I decided that I needed to see an endocrinologist to get to the bottom of this. I called the Emory Endocrinology Clinic here in Atlanta and was seen by an endocrinologist. She walked in the room and immediately started talking about Cushing's Syndrome. I was expecting her to talk about Conn's Syndrome. She showed me that the left adrenal gland does have a thickening that she said she was sure that it was an active tumor. She also showed me that the right adrenal gland is significantly atrophied but still functioning. She said that would be caused by adrenal Cushing's Syndrome. She also pointed out all the Cushing's symptoms that I have been having. I do have the moon facies and the buffalo hump along with the facial reddening and hair. My hair has significantly thinned out and I bruise very easily. I also have many spider varicies all over my body. About the only symptom I don't have is the straie. But because a great deal of the skin from my abdomin and chest were sacraficed during my mastectomy and reconstruction it is impossible to tell if I wouldn't have them. She want's me to do a 24 hour urine sample but I have to detox from spironolactone before I can do the test. It's crazy but as afraid as I am that I do have Cushing's, I will almost be relieved if I do. It will mean that I can finally say, that I'm not lazy with bad eating habits. I'm sure that other doctors will just roll their eyes, but I will know. And if it can be taken care of, maybe my body can heal from this. So this is my introduction. Please feel free to give me all the advice that you want. I'm sure that it will help.
The cushing's endocrinologist at Emory has proven to be pretty good. I hope you continue to have a good experience there.
The treatment for your condition is a relatively simple surgery, however, since you have been sick for so long it will take you a long time to recover, but you will.