And It's About Time There Was Some Support For Cushing's!
I originally came to this website when dealing with my impending diagnosis of a pituitary tumor causing Cushing's symptoms. It has now been 2 years since I was diagnosed and had transsphenoidal surgery. As far as I can tell I am still "cured" of this horrible disease. I am finally feeling confident enough to share my story, I guess. My Endocrinologist told me to look back at old pictures to see when my face began to change, and this would be approximately when my tumor began growing. My Neurosurgeon said that her Cushing's patients usually noticed a personality change that coincided. Well, that was 9 years ago now. I have done a lot of research about Cushing's. I wrote my Masters Thesis for my P.A. degree about the psychological aspects of this disease, and how this is often overlooked.
I had my surgery while I was on rotations for P.A. School, and somehow survived the aftermath well enough to continue on schedule--minus a few days and weeks off here and there. I guess I was lucky to be working around those in the medical profession... I experienced severe adrenal insufficiency and had diabetes insipidus for several months. My doctors felt that the best way to jolt the pituitary into functioning on its own again was to withold cortisol replacement. As much as it sucked, I am glad I didn't have to play the game of wondering if I was cured or not. I felt terrible, and I knew there was no way my tumor was secreting any ACTH! So what if I almost died, right.
Living through this experience gave me a whole new perspective on life. I have always believed that things in life happen for a reason. I have now gone back to school to be a Doctor. I believe I will specialize in Endocrinology. I am now in my second year of classes and have been on a crusade to educate as many classmates, faculty, preceptors, etc. about the realities of Cushing's--and not what the textbooks tell us. I was misdiagnosed for a long time and made to feel like I was going crazy for thinking there was something wrong with me. My presentation wasn't typical. I didn't have the normal vision problems, the excessive weight gain, the buffalo hump, the striae... I had become an exercise fanatic, fueled by the cortisol that wouldn't let me sleep. I ran marathons and went the gym for hours on most days of the week. The student health clinic doctors told me I was just anxious and sent me to a therapist and psychiatrist. I was given some pretty hefty medications. I complained of palpitations, easy bruising, fatigue, headaches, eye pain, blurring, "pressure feelings inside my head". This was all choked up to anxiety. Finally, i broke my ankle. This was the best thing that could have ever happened to me! At first they thought I was lying about what I had been doing to break it--just running along--didn't trip, fall, etc. It didn't heal well, and then I broke my foot as soon as the cast was off. Then I broke my foot again after that. Finally there was an endocrine work up--by a Resident. Thank God for fresh medical opinions.
I am happy to say I have been symptom-free for 2 years and due for my next set of follow up labs and MRI in January. My bone density is finally normal for a 32 year old. I am still pretty tired sometimes. Not sure if it is normal tiredness, or what normal is supposed to feel like yet. I hope my story will convince someone who may have suspicions of their diagnosis to be persistent. I had to learn to be my own advocate and annoy people to get things done. When you know something isn't right about you, or that you aren't you anymore--do whatever it takes to get help! There is someone out there who will know enough. I didn't present like a "normal" Cushie. Doctors need to know that that is a possibility. I am doing my best to make sure that what happened to me doesn't have to happen to anyone else. I hope someday I can help some of you!
