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Cushing Disease

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The road to getting diagnosed with Cushing disease is often long, painful and frustrating.

For some people, it can take years to figure out what’s going on. So once you get a diagnosis, you might be relieved. Finally there’s a reason why your muscles are weak, you’re gaining weight, have stretch marks and your face is rounded or bruised. You’ve got some answers. But you might still have a big question — what’s next?

Cleveland Clinic’s endocrinology (hormone) experts have years of experience diagnosing and treating issues like Cushing disease, a type of hormonal problem called Cushing syndrome. We’ll take time to listen, answer your questions and work with you to craft a personalized treatment plan so you can feel confident about moving forward.

Why Choose Cleveland Clinic for Cushing Disease Care?

Demonstrated expertise:

Our providers are dedicated to treating rare conditions like Cushing disease. They have years of experience providing surgical, radiation and medical treatments — ensuring you’ll get the best personalized treatment plan for you and your goals. Meet our team.

Innovation and research:

We’ve been researching and participating in clinical trials for Cushing disease for many years. This means we can provide the best treatment for you today — while working on solutions for tomorrow’s patients.

Collaborative care:

Cleveland Clinic providers work together to create your personalized treatment plan. You can often meet with all the members of your care team on the same day in the same office, avoiding the hassle of multiple visits.

Virtual visits:

We make it easy for you to get the care you need. Many of our healthcare providers offer virtual visits and follow-ups. You receive attentive, one-on-one care from your provider from the comfort and convenience of home. All you need is a smartphone, tablet or computer.

National recognition:

Cleveland Clinic is a trusted healthcare leader. We're recognized in the U.S. and throughout the world for our expertise and care.

Cushing Disease Diagnosis at Cleveland Clinic

Cushing disease is a specific type of an issue known as Cushing syndrome. People who have Cushing syndrome tend to have higher-than-normal levels of cortisol — your “stress” hormone that regulates your blood sugar and turns food into energy.

Having Cushing disease means your extra cortisol comes from a tumor in your pituitary gland, which is usually noncancerous (benign). You may have symptoms like frequent bruising and infections or a round, red face. Unexplained weight gain or stretch marks on your stomach and torso are other common symptoms.

Because Cushing disease is rare, some people don’t get a correct diagnosis at first. That’s why it’s important to work with providers who regularly treat this disease and can recognize the symptoms.

Our team of experienced Cushing disease specialists works closely to make the right diagnosis and find the best treatment for you. We go over your test results with other specialists on our team and regularly review your case with:

Endocrinologists (providers who treat your hormonal system).
Neuroradiologists (experts in diagnosing and guiding treatment using imaging tests).
Neurosurgeons (specialists who treat your brain and nervous system).
Radiation oncologists (specialists who use radiation to treat tumors).
Neuropathologists (experts who apply the latest molecular and genetic tests to analyze pituitary tumor tissue).

Your providers will run thorough tests to get to the bottom of your symptoms and confirm a diagnosis. We may also measure your blood pressure and blood glucose (sugar) levels. People with Cushing disease often have a higher risk of high blood pressure (hypertension) and high blood sugar (hyperglycemia).

To diagnose Cushing disease, our providers use several tests:

Salivary cortisol test, which you can often do at home.
Dexamethasone suppression test to see how well your pituitary gland can respond to high levels of steroids in your blood.
24-hour urine collection to determine cortisol production over a 24-hour period of time.
Blood tests to see if the cortisol is coming from the pituitary gland.
Imaging tests, like an MRI, to look for signs of a tumor.
Inferior petrosal sinus sampling can be done in patients without a definite tumor on an MRI. This test lets us look at your blood vessels and get samples of your hormone levels directly from the pituitary gland.

Because pituitary gland tumors can be very small, sometimes an MRI or other imaging tests may not spot them. At Cleveland Clinic, we have designed special MRI protocols to better let us find small tumors. This helps us get you the care you need. Without treatment, these small tumors can still cause severe symptoms.

Providers Who Treat Cushing Disease

Locations

Our healthcare providers see patients at convenient locations in Ohio, Florida and London.

Cushing Disease Treatment at Cleveland Clinic

There a few different ways to treat Cushing disease, including surgery, medications and radiation. If properly treated, the disease may go into remission. This can happen anywhere from two months after treatment to 18 months later. After treatment, you’ll continue to follow up regularly with your providers for salivary tests — usually about every six months for the rest of your life.

Medications

Your providers might decide to prescribe drugs that reduce your cortisol levels. Or they might change prescription medications you’re already taking because they’ve been contributing to your Cushing disease. You might also take medications if your pituitary tumor is hard to remove completely with surgery or if your Cushing disease comes back.

Surgery for Cushing disease

In most cases, we’ll treat your Cushing disease by removing the tumor on your pituitary gland through minimally-invasive endoscopic endonasal surgery (done through your nose) using specific surgical techniques aimed at removing the whole tumor. In some cases where we can’t see a definite tumor on your MRI, a special technique for exploration of your pituitary gland may be done to find the tiny tumor. If a surgeon removes your tumor completely, you’ll likely not need any more treatments. However, you’ll need to take a cortisol medication for three to 18 months until your pituitary recovers the ability to regulate your cortisol production.

Gamma Knife Radiation

If surgery for your pituitary tumor isn’t possible, we might also recommend Gamma Knife^® radiosurgery. This highly focused radiation technique can reduce or eliminate your tumor noninvasively. We were one of the first three medical centers in the nation to start using Gamma Knife. Our surgeons have been doing these procedures for more than 30 years, giving us a high level of expertise and skill.

Gamma Knife is one type of radiosurgery. Depending on your location and recommendation of your provider, you may get a different type of radiosurgery. Talk to your provider about the best option for you.

Taking the Next Step

Chances are, you’ve been on a long journey to get your Cushing disease diagnosis — maybe even for many years. We know it’s probably been hard to have symptoms for a long time with no answers or treatment. We’re here to help. Our providers will help get to the bottom of your symptoms and give you the compassionate, expert care you deserve.