Cushing's Disease Support Group

I have a repeat MRI to show the size and exact location of my pituitary adenoma. Scared as hell. I look horrible and feel worse. I just need to talk to one of the 10 people per year that are diagnosed. I am at my wits end physically and emotionally. I don't think it's quite hit me yet, even when I look in the mirror and when I can't physically do things I used to do. Is anyone still awake that wants to talk?

Hey there, things will get better!! I was diagnosed with Cushing's in 2003 when I was 22. I gained a tremendous amount of weight, had awful stretch marks, got all the facial hair, high blood pressure, insomnia, actually every symptom I had. I went to the university of virginia medical center and had the tumor removed from my pituitary gland and started to feel better almost instantly. Before the surgery I had thoughts of hurting myself, like life couldn't go on. I am telling you there is light at the end of the tunnel and you will get better!!! I don't take any medications at all and have no symptoms or side effects other than some stretch marks and a bit of memory loss which I don't know is even associated. Take care and keep your head up!

Hi Lucky,

I had my pituitary tumor removed Sept 4 of this year. It's only been a couple months and I'm feeling a lot better. It takes time, I know everyone tells you to be patient, but thats all you can do. The hormone replacement is hard because my body is only making 1mg of cortisol on its own. The doctors want me to taper my meds but I don't want to feel crappy all the time. I have gone 1 week without feeling sick because I upped my dose. On Friday I have to come back down. One thing that has helped me, although I'm not happy about it, I take anti anxiety medication and anti depressants. My endocrinologist recommends it to help alleviate the emotional symptoms. What helped me was to have a sense of humor about the tumor and the disease that has plagued my life and could have been there since I was a child. Also, be happy that they found it and embrace the opportunity to be well again. I know this all sounds ridiculous, but its all I've got. I'm struggling right beside you. There are days that I want to pull my 25 year old gray hair out and scratch my unbelievable dry skin right off my body. But my mom always tells me that, "God never gives us more than we can handle." Be an advocate for yourself and your well being and really focus on taking care of yourself. I'll stop rambling now. Oh, my doc recommended that I take vitamins, like C,D, Gelatin, Acai, and Zinc. Helps with energy and skin issues as well as the zinc will help your body if you get a cold or something. Good Luck!

I sort of know how you feel. I didn't understand the way I felt. I was depressed, upset, frustrated. If you read my personal story you'll see that it gets better. I had transsphenoidal surgery September 28 and now (Nov. 17) I have lost so much weight. I am finally starting to look like myself. My confidence is back. the first few weeks sucked, I felt like a druggy (sudden drop of cortisol 113 to 3). It sucks not being able to blow my nose, but hey it's way better than getting the migraines, confusion, and being grossly obese. I'm on supplements now (birthcontrol for hormones and hydrocortisone to make up for the sudden drop of cortisol).

I my name is liz I live in Australia. I had by pituitary gland removed in 1986. another operation in 88 they thought it had regrown but it didn't. I was still putting on weight and the symptoms didn't go away so in 1989 they removed my adrenals glands which gave me Addison's disease. that was 25 years ago. I am leading as normal life as possible. take or leave some bad days. i am on a lot of medications, I work 2 days a week as a volunteer at a special school for 12 years have my own home and enjoy life. So things will get better if you take one day at a time and enjoy life as it is. take care liz.