What to Do When You’re Struggling to Get a Cushing’s Disease Diagnosis

Eight is the number of doctors who didn’t listen. 

Five is the number of diagnoses that were wrong.

Two is the number of doctors who referred me to a psychiatrist for “making up” too many symptoms.

Four is the number of new doctors who finally listened to me and helped.

Ten is the number of years that it took for me to get diagnosed.  

When I hear stories like these from the people who experienced them, it makes me realize just how easy I had it. This could have been me, but I was fortunate. I had only one misdiagnosis, and I’ve never been referred to a psychiatrist because the doctors didn’t believe me.

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A question that I often get asked is how long it took for me to get diagnosed, as well as how I managed to convince my doctors I had Cushing’s disease.

While it wasn’t all smooth sailing for me, I’m one of the lucky ones — lucky that I didn’t have to go to too many doctors before I found one who listened to me and was willing to explore my concerns, and lucky that my tests consistently showed high cortisol levels, which led to my diagnosis. When my testing began back in 2017, it took three months to get a diagnosis.

Three months for me was a long time. But in the scheme of things, it really wasn’t. Compared with many people who had to see more than a dozen doctors over more than a decade to get a diagnosis, you could say I had a dream run.

The most common issue I’ve come across with people struggling to get a diagnosis is not having doctors who understand or are willing to listen. Why? There’s an old saying in the medical field, “When you hear hoofbeats, look for horses, not zebras,” meaning a doctor should first think about what’s a more common — and potentially more likely — diagnosis. That’s not a rare disease. Unfortunately for us, Cushing’s is a rare disease — although apparently it’s more common in horses and dogs —which explains why it’s not on most doctors’ radar.

Another dilemma for patients is having their symptoms dismissed because their tests came back normal. This, however, doesn’t mean the patient didn’t have Cushing’s; they could instead have cyclical Cushing’s, and the tests happened to occur when their cortisol levels were normal.

So what do you do when your doctors won’t listen to you? My best advice for anyone struggling to get a diagnosis is don’t give up, and get a second opinion. Or if the second opinion turns out to be a dud, get a third, or a fourth. Just don’t give up.

Documenting all the symptoms and changes to my body also helped me prove to the doctors that what I was experiencing wasn’t made up. As much as I hated it, I took photos of everything — photos of the stretch marks I gained, the buffalo hump I developed, before and after comparisons, even every time my feet swelled up like an elephant’s just from sitting at my desk for a couple of hours.

I tracked my menstrual cycle (or lack thereof), the times I couldn’t sleep for 72 hours straight, and when I had heart palpitations. I recorded everything, and it paid off. The endocrinologist was so impressed by my dossier of evidence that she had no hesitation in ordering a series of tests for me. I also kept all the results of those tests, by the way.

If you think you have Cushing’s, it’s important to remember that we all have different journeys with this disease, and how it happened for me may play out differently for you. You will get help eventually. You just need to keep fighting and make you and your symptoms a priority when you see your doctor.

And please, don’t ever let anyone make you think you’re crazy. No one knows your body like you do.

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.