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Possible Adrenal Issues

Diabetes & Endocrine System | Last Active: Jul 8, 2019 | Replies (21)

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@catnip

Hi. I am new to this forum. I have an adrenal gland tumor and have had it since 1991. It finally decided to act up within the last 6 months growing larger and my cortisol level is sky high which is a problem. I now have an endocrinologist who has run a boat load of tests and believes the adrenal gland should be removed. I am gaining weight and no matter how much I exercise the cortisol releasing is the problem. My doctor also is associating this with Cushings' Disease. I have had new onset of headaches, high blood pressure, fatigue, and lack of energy in the past 6 months. I have had a variety of blood work and urine testing along with CT, MRI, Octretide scans which do not report it as being a metastatic problem at present but I very much look forward to surgery at Mayo Clinic. I wondered if anyone here has had an Adrenalectomy and how they felt after the surgery. Also was in laparoscopic or surgical?

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Replies to "Hi. I am new to this forum. I have an adrenal gland tumor and have had..."

Hi there @catnip ! I recently had my gallbladder removed at Mayo Clinic and while looking for some advice on diet modification when I stumbled upon this group. I wanted to give you a little of my history with Cushing's. I am now 38 years old but when I was a senior in high school, I started to gain weight for no obvious reason. I was getting headaches, and my cycle basically stopped. I had the puffy face, my hair was thinning, and I had the "buffalo hump" on my back. I was taken to a couple of doctors who just said I needed to watch my eating. I started my sophomore year of college in Milwaukee and when I came back for a break, my parents took me to my OBGYN who said that I was just "stressed" from college and suggested that I be put on birth control. Well that wasn't a sufficient explanation for my mom. She had read somewhere about the effects of cortisol and Cushing's in a medical article and asked that my cortisol be tested. It was EXTREMELY high. So she referred me to an endocrinologist in town who said we should just wait and watch it for a while. Well, I can tell you as 19 year old girl in college who had always been healthy and slim, I did not want to wait anymore. I was barely eating and still growing out of my pants. My parents contacted the Cushing's Research Foundation who referred me to an endocrinologist in Milwaukee who specialized in Cushing's. He took one look at me and said he could almost guarantee that I had it. So after a series of tests, we found out that I had a tumor on my left adrenal gland that was about the size of a golf ball. I had surgery during spring break of sophomore year, and it was the best thing that I could have ever done.

The entire adrenal gland was removed. My other one was "sleeping" but the doctor said that it would wake up eventually. The biggest fear for my parents at the time was that I would get into an accident or have some trauma that would have required adrenaline and my other adrenal gland would be asleep on the job. So I had to wear a medical bracelet for a while to alert medical professionals that I needed adrenaline in an emergency. Honestly, the worst part was the "withdrawal" that I went through after the cortisol-producing tumor was removed. I supplemented with artificial cortisol that gradually tapered off when the other gland started working again. I probably cut it back too far too fast because I just wanted to lose the weight. I remember feeling so anxious sitting in class, like my legs could not sit still. But that didn't last very long and eventually my other adrenal gland turned back on only a few months later. I started to loose weight almost immediately. But when I returned to school my junior year after being home for the summer, I had so many people who didn't even recognize me. The change was so dramatic. For the first time in years, I felt like my old self. I had energy, no headaches, my blood pressure was lower, I felt normal. I didn't have any long-terms complications at all. So the point of all this is for you not to be afraid of having the adrenal gland removed. I felt better than I had in years and the recovery was about as easy as could be. Perhaps that was because I was a lot younger (it's taking a bit longer to bounce back after this gallbladder removal but I am almost 20 years older:). I was so glad to know that it wasn't "stress" or "bad eating" that was causing me to feel the way I did. I hope your surgery is equally as successful and you start to feel better soon!