Asked for Female | 19 Years
How can I advocate for cushing disease diagnosis effectively?
Patient's Query
Before I share my worries I have to always note that I am a childhood cancer survivor Osteosarcoma I am now 19 and I was diagnosed at 11, I have been free from cancer since 13 years old I have worries of having cushin disease, I show all the symptoms and researched on YouTube by various videos of different doctors speaking of the subject. I gained a lot of weight in such a rapid speed even though I was very skinny, no matter how heathy I eat eating enough protein, cutting gluten and diary out as well as sugar I feel like i keep gaining weight. I have a fat pad at the back of my neck and the fat seems to go to my back and stomach, have awful bruising on my feet sometimes, horrible exhaustion by just lifting my arms and my bones sound like they crack a lot. Alongside many other symptoms like insulin resistance a doctor noticed due to darkening to my neck, but diabetes was ruled out when I went to a doctor and she said she did see many signs of a hormonal issue just by looking at me, referred me to a endocrinologist. I suspected high cortisol because i have dealt with a history of psychological issues such as diagnosed depression. I am suffering and will see this specialist soon, but my general blood lab tests have been “normal” before, I have read out of fear of not being heard by my doctor that lab tests sometimes do not show abnormal cortisol levels if the cortisol is not or condition of it is not too advanced I want to know all the tests that I need done that are necessary to be diagnosed, and what alternatives can I discuss with my doctors if the labs come out “normal” I am aware i need to advocate for myself sometimes I just dont know how to word it because of fear of seeming ignorant and like i know more than my doctor, I dont think this I just want my pain to be over! I think hearing advice from a professional would be best on how i can best approach advocation for my health.
Answered by Dr. Babita Goel
The symptoms you're experiencing could be related to Cushing's disease. It's important to discuss the necessary tests with your doctor to get an accurate diagnosis. These tests include a cortisol urine test, blood cortisol levels, and an MRI to check your pituitary gland. Cortisol levels can fluctuate, so multiple tests at different times may be needed for a definitive diagnosis. Even if initial tests are normal but your doctor suspects Cushing's disease based on your symptoms, further testing and monitoring might be required. Be open and honest with your doctors, ask questions, and express your concerns to ensure you receive the best care.

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