How I documented my Cushing’s symptoms to help get a diagnosis

Last November, I had a transphenoidal pituitary resection surgery to remove a 3 mm tumor on my pituitary gland, in hopes of placing me in remission from Cushing’s disease. It’s laughable to say that having brain surgery was the easy part of this journey, but getting to the right specialist and establishing a proper diagnosis was a much more challenging task.

Let’s rewind three years. That’s about the time I started to notice subtle shifts in my body composition, mental health, and energy levels. I felt tired. I felt weak. My bones hurt. My anxiety seemed to be through the roof. I had a lot of brain fog. I noticed weight gain, and my face started to grow more round. I started to conduct my own research trying to find answers for these symptoms, but I also knew it’d be helpful to talk with my doctor about my concerns.

I presented my symptoms to my primary care doctor, explaining to her that I was worried about the possibility of Cushing’s. She didn’t seem concerned about that and instead insisted I go on a low-calorie diet and exercise more. I still had worry about my health, so I decided to find a new primary care doctor. Just like my first doctor, she felt that Cushing’s wasn’t a realistic explanation for my symptoms.

At this point, I decided to stop pursuing the possibility of Cushing’s disease. After all, two different doctors told me that it wasn’t likely.

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A few months later

One afternoon, I was climbing into the shower after going for a long walk in my neighborhood. I caught a glimpse of myself in the mirror and saw my buffalo hump (fat pad), the largest I’d ever seen it. I stared at it in the mirror for a few seconds and then I felt it. It was firm to the touch.

I knew I had to document it, so I took a picture. At that very moment, I realized these symptoms were not going away; instead, they seemed to be progressing. I had to find someone who specialized in Cushing’s disease, someone who’d take me seriously.

Finding a specialist

I did more research on Cushing’s and found a California specialist who accepts self-referrals. Because I was paying out of pocket for these appointments, I wanted to make the most of them. My goal was to help this doctor see a comprehensive picture of everything I was dealing with.

On the weekends, I put together a 25-page document to present to this specialist. I divided it into three parts, complete with a cover page and a table of contents.

The first section was devoted to my symptoms. I included all that I’d experienced over the past year and placed each symptom in bold, to make it stand out. After each one, I used a short narrative to describe its development and severity. I tried to keep the descriptions brief, yet concise.

The second section showcased my most recent lab results. I tried to hone in on what I felt was most relevant to him. I copied and pasted my labs into the document, including the name of the test, the test result, and the reference range. It turned out that this doctor wanted to run his own labs, but he also wanted to see my previous labs to get an idea of what he was dealing with.

The last section of the document included photographs. In my opinion, this section was the most important of the document. I showed pictures of what I looked like before my symptoms, then photos of symptom development to the present. Additionally, I showed symptom-specific photos and their progression over the past few years.

Although putting together this document took a lot of effort, I found it to be an essential tool for my doctor to have a comprehensive picture of what I was going through.

One thing I’ve learned through this journey is that sometimes you have to help doctors see what you’re experiencing. When you’re in front of them, they only see a snapshot of you in that moment. Creating my document allowed my doctor to have a greater overview — and more than he saw during our first appointment.

How have you been able to help your doctor better understand what you’ve been going through? Please share your response in the comments below.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.