For years I fought my weight. Every year my PCP would encourage more exercise or healthy foods. In college, although I was playing softball and working out daily, I still gained. Then at once, I went up 50 more pounds and being the heaviest I have ever been, something had to give. My PCP went through all my past appointment notes and all my labs, my symptoms, and she looked me up and down and said “ It’s rare, but I think you might have Cushing’s.” That began my road of testing. All my cortisol tests came back seriously high. Everything on paper pointed to a pituitary tumor, all except the MRI which they couldn’t see anything on it. We don’t have any Cushing’s specialists here in Maine so I was referred to Mass General Neuroendocrine and Pituitary Center. They did more tests which all came back pointing to Cushing’s. The Neurosurgeon looked at my images and didn’t see anything, but my IPSS test clearly pointed to one side of the gland. I was happy- there was an answer-I’d get better!!
I had my surgery to remove some of my pituitary gland in hopes to get the tumor, unfortunately, we didn’t get it. Shortly after that, I had a second surgery, removing half my pituitary gland, and we still didn’t get it. Here I was so happy for an answer and a cure, but it never came.
After the surgeries, I still struggled with weight and fatigue, but a new symptom came- depression. I’ve had depression all my life, but this was different. Never in my life have I been so close to ending everything. My brain wasn’t my brain. I went to a PCP appointment and flat out told my doctor I wasn’t going to be around much longer. She set me up with a therapist and an outpatient clinic which has helped tremendously getting through that.
A year after my last transsphenoidal surgery, I decided to go the route of gamma knife radiation. The doctors say that can take at least 2 years to take effect, if it ever does. While waiting for radiation to kick in, I’ve taken medication to keep my cortisol down. I started with Ketoconazole, which my body didn’t like. Cabergoline, also made me sick. Metyrapone, which at the max dose was still not controlling my cortisol as desired. Now I’m on one of the newest medications to hit the market, Isturisa. So far its been good. No harsh side effects and my cortisol is in normal limits.
It’s been 3 years since radiation. Although meds make my cortisol look good on paper, I am still struggling with weight, I take a nap most days, I can stand at the sink to wash dishes for about 5 minutes before I need to sit and rest, and my bones hurt most days.
I have good days and bad days. I try to take in everything I can on my good days. Someday, I’m hoping for more good days and less of the bad until finally there are no bad. Till then, I’ll keep trekking along.
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