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Cushing's Syndrome

Getting a Diagnosis

It might take several appointments to settle on your diagnosis.

When you go to your doctor, she'll do a physical exam and ask you questions.

  • What symptoms have you noticed?
  • When did you first see them?
  • Does anything make them better? Or worse?
  • Are you feeling more emotional?
  • What medications are you taking?

Your doctor will probably also recommend some of these tests to help screen for Cushing’s syndrome if she suspects you have it:

24-hour urinary free cortisol test. This common test collects your urine for 24 hours to measure how much cortisol is in it.

Dexamethasone suppression test. You'll take low-dose steroid pills every few hours for several days, then take a test to see how much cortisol your body still makes.

Late-night salivary cortisol level. This test measures cortisol in your saliva. As the name suggests, these tests happen at night.

If you have Cushing's syndrome, your doctor may refer you to a specialist who will do other blood tests or imaging scans to find out what's causing it.

Questions for Your Doctor

  • Will my symptoms change? If so, how?
  • What are my treatment options? Which do you recommend?
  • How will we know if they're working?
  • Do these treatments have side effects? What can I do about them?
  • When will I start to feel better?
  • Does this condition put me at risk for any others?

Treatment

The first thing your doctor will figure out is why you have too much cortisol. That will lead to how to treat your condition.

For instance, if you have too much cortisol because you're taking steroid medicines, your doctor will check to see if you can stop taking the drugs, or take a lower dose.  

If a tumor is causing your Cushing's syndrome, you'll likely have other tests to determine the location of the tumor first before deciding on your treatment. Surgery to remove the tumor may be best. If not, your doctor may be able to shrink the tumor with radiation or medicine.

Taking Care of Yourself

Eating well is an important part of living with Cushing's. A healthy diet can ease some symptoms and prevent others. Protect your bones by eating foods with calcium and vitamin D. Limit how much sodium and fatty foods you eat. A nutritionist can help you make sure you're getting enough of the right nutrients.

Let your family and friends know what you're going through. Ask for their support, and let them know how they can help.

Take time for the people and activities you enjoy. It's OK to say no and set limits, so you keep your energy up. If you're feeling overwhelmed, talk to a counselor or therapist. Your doctor may be able to give you a referral.

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