What I Learned During My Frustrating Journey to Diagnosis

Kat Rees avatar

by Kat Rees |

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Getting diagnosed with Cushing’s disease was a tricky process for me, and it often can take a long time. While some in my community have been struggling with symptoms for years, a few of us received our diagnoses rather quickly.

Here’s a bit of history to preface my advice. When I first started noticing symptoms, I was in college and thought nothing about the weight gain. Everyone seemed to be gaining the “freshman 15.”

I also didn’t think much of the forgetfulness, or brain fog, as we “Cushies” call it. As a college student with two jobs, I had a lot on my plate.

When I started experiencing additional symptoms as the years progressed, I decided to tell my doctor I was unable to lose weight, I was starting to have migraines, and my hands were shaking uncontrollably. All of these suggested I was experiencing anxiety and depression. My past history of anxiety didn’t help me figure out that something else was going on.

(Courtesy of Kat Rees)

The day I started getting answers is clear in my mind, and it’s a day I won’t forget. At this appointment, I shared things I hadn’t at previous ones.

When my neurologist entered the room, I explained to him that I had suddenly developed large, baseball-sized lumps above my collarbone. He asked to see them, and when I pulled my hair away from my neck, he saw my enlarged supraclavicular fat pads, a common sign of Cushing’s.

I had seen this doctor before and received another diagnosis of anxiety and depression. This time, he asked me to change into a robe because he wanted a physical exam, which no other doctor had asked for. What he saw hiding behind my hair and large sweaters shocked him. The buffalo hump, the supraclavicular fat pads, the moon face, the excess hair, and the acne all told him I was suffering from an endocrine problem. He suggested I go to an endocrinologist, which I did a couple weeks later.

At that appointment, I did one more thing I hadn’t done at previous doctors’ appointments: I showed the new doctor before-and-after photos of me, which highlighted the changes in my appearance within a short period of time. He immediately ordered lab tests to check my cortisol levels.

From there, I quickly received my diagnosis of Cushing’s disease, had scans to find the location of my tumor, and booked my surgery date.

My best advice for anyone thinking they might have Cushing’s disease is to ask for a physical exam and show before-and-after photos of your appearance. These two things will show classic signs of this disease.

Kat today. (Courtesy of Kat Rees)

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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.

Comments

James Adams avatar

James Adams

Just self diagnosed and followed this path. I definitely have superclavicular fat pads.
I quit smoking 3 years ago and was having slight anxiety from stopping.
These pads started growing after taking prednisone and being given shots of prednisone for extreme bouts of anxiety.
The pads became stiff and make it hard to breathe by pushing up against my throat.
Try telling a doctor in the emergency room that you are choking or feel like you are being strangled by an unknown pressure.
I am emarrassed as I am sure they thought I was crazy or imagining this or thought I was on drugs due to the tests I was given.
So, in the end of each visit, they would give me even more prednisone and send me home.

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Emine Onat avatar

Emine Onat

Hi Kat,
You look amazing and I am happy for you that you were able to overcome the cushing's s disease. I believe I have it too, as I have all the symptoms and associated illnesses. Could you please share which kind of diagnostic tests are done to confirm you have cushing's such as saliva, urine samples of cortisone, and/or MRI, how they find out where is the tumor and what was the stages of your treatment? How long did it take to get back to your normal self? Do you need to have continuous treatment now? What happened to your buffalo hump? Did it go away on its own? Thank you !

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