What Is Cushing's Syndrome?
Cushing's syndrome is all about the stress hormone cortisol. When your body makes too much of it, the excess hormone can throw off your body's other systems.
Most cases of Cushing's syndrome can be cured, though it may take some time for your symptoms to ease up.
The condition, also known as hypercortisolism, is more common in women than men. It's most often seen in people ages 25 to 40.
You can get Cushing's syndrome when there’s too much cortisol in your body for too long. Cortisol comes from your adrenal glands, which sit on top of your kidneys.
These prescription steroids are used for conditions such as asthma, rheumatoid arthritis, lupus, or after an organ transplant. They are powerful anti-inflammatory medications. Taking too much, for too long, can lead to Cushing's syndrome.
A tumor in your pituitary gland, found at the base of the brain, or a tumor in the adrenal glands, can also prompt your body to make too much cortisol, which can lead to Cushing’s.
It's not usually a condition that's passed in families. In some rare cases, though, people develop it because a problem in their genes makes them more likely to get tumors on their glands.
Your case might be different than someone else's, but when the disease is full-blown, common symptoms are:
- Rounded, rosy face
- Weight gain, especially upper body
- A fat pad in the upper back or base of the neck (you may hear this called a "buffalo hump")
- Thin arms and legs
- Being very tired
- Weak muscles, especially when using your shoulders and hip muscles
- High blood pressure
- High blood sugar levels
- Depression and anxiety
- Kidney stones
- Sleep problems
- Extra hair growth on your body and face
- Irregular periods
- Low sex drive and problems having an erection
Your bones may get weak. Everyday movements like bending, lifting, or even getting out of a chair can cause backaches or breaks in your ribs or spine.
Children with Cushing's syndrome are usually very heavy, what doctors call obese, and tend to grow slowly.
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 a low-dose steroid pill at 11:00 p.m. and then take a blood test in the morning 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?
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.
What to Expect
Your symptoms and how long they'll last depend on:
- The amount of extra cortisol you have
- The cause of your high cortisol
- How long you've had the condition
- Your overall health
Most of the time Cushing’s syndrome can be treated and cured.
If your Cushing's syndrome isn't curable, you'll want to look for ways to manage your weight gain, muscle weakness, and tiredness. Partner with your doctor on that, and tell your doctor how you're feeling. If you get depressed, it's important to get treated for that.
Look for ways to connect online and in person with people who have experience with Cushing's syndrome. You can learn more about living with the condition, and meet other people who have it, in forums on the Cushing’s Support & Research Foundation web site.