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Hi! I'm hoping you can help me! I am a black female in Atlanta GA, a medical/surgical nurse, and recovering from Cushing's syndrome. I was finally diagnosed in February 2003 after going through at least 8 doctors to get the correct diagnosis. It was blamed on everything; hypertension, diabetes, hyperglycemia, and the birth of my 3rd child on May 16th, 2002. They finally did the dexamethesone  suppression test and I tested positive for high levels of cortisol; 24hr urine test, an MRI, and on the CT scan they found a tumor on my left adrenal. I had surgery on April 23, 2003 and my recovery has been extremely difficult. After the surgery my doctor put me on 5mg of prednisone and after about a month, took me off. Since then I have complained and complained about how horrible I feel and he kept saying that my cortisol level is normal and I don't need the steroids. Some of the symptoms I get to this day include severe fatigue to the point where I cannot get out of bed and care for my children the way I would like to, dizziness, feel like I am about to faint or blackout, short-term memory loss, nausea, weakness, headaches, and depression because of these problems. I have lost 2 nursing jobs because of these problems and I don't know where else to turn because I need to care for my household. Lately I have been catching  colds, respiratory infections, strep and UTI's and I used to hardly ever get ill. I keep complaining to my endocrinologists about these problems and they seem puzzled and don't know what else to do for me. Sometimes I feel like it's going to be the end of the world if these people don't figure out something! The answers they always give me is that my chemistry is fine and there is nothing else they can do for me. They did test my ACTH and it was 35 and my cortisol last month was 7. My blood pressure does run low, so my new endo placed me on Florinef in March and I was on it until about August. I stopped taking it because I felt it wasn't helping. I started taking hydrocortisone (5mg) in October, but it didn't seem to help either, so I stopped that as well after my first endo became upset that the new endo had put me on it and the florinef. I am getting unrelated answers from two different endos and don't know what else to do. I have lost a lot of weight - before the surgery I was 5'3" and 209 lbs. and a month afterwards, 180 lbs. and now today I weigh 119 lbs., which is my normal weight. I'm really glad I lost the weight, but I still feel miserable. My story sounds like so many others, so I guess I will just wait it out. I would love to hear from anyone else who has been through this! Thanks so much! |
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