What Is Cushing’s Syndrome?
Cushing's syndrome is a hormonal disorder caused by long-term high levels of the hormone cortisol in your body. It’s also known as hypercortisolism. Cortisol comes from your adrenal glands, which sit on top of your kidneys. It helps your body in several ways, including:
- Maintaining blood pressure
- Regulating blood sugar
- Lowering inflammation
- Turning the food you eat into energy
But when you have too much cortisol, it can throw off your body's other systems.
Most of the time, Cushing's syndrome can be cured, though it may take some time for your symptoms to ease up.
The condition is more common in women than in men. Women are about three to four times more likely than men to have Cushing's syndrome that begins in the pituitary or adrenal glands. Cushing’s is most often seen in people ages 20-50.
Cushing’s Syndrome Types
You can get Cushing's syndrome when there’s too much cortisol in your body for too long. There are two main types, which are set apart by the source of the excess cortisol.
Exogenous Cushing’s syndrome
This means the source of the cortisol is something that comes from outside of your body, usually medications called glucocorticoids, also known as corticosteroids or steroids (for example, prednisone).
These prescription steroids are used for conditions such as asthma, rheumatoid arthritis, lupus, or after an organ transplant. They’re powerful anti-inflammatory medications. It’s common to develop Cushing’s syndrome if you take high doses for a long time.
You can also get Cushing’s syndrome from injectable steroids, such as repeated shots for joint pain, bursitis, and back pain.
Steroid skin creams, used for eczema and other skin problems, are less likely to cause Cushing’s syndrome, but it can happen.
Endogenous Cushing’s syndrome
This means the source of the excess cortisol is something inside your body. Endogenous Cushing’s syndrome is rare compared with exogenous Cushing’s. While the exact numbers are unclear, it’s estimated that no more than 24,000 people in the United States get diagnosed every year.
Several things can cause your body to make too much cortisol:
Pituitary tumor. Your pituitary gland (found at the base of the brain) makes many important hormones, including adrenocorticotropic hormone (ACTH), which signals your adrenal glands to make cortisol. An ACTH-producing tumor in this gland can lead to excess cortisol. This type of tumor usually is not cancerous.
This is the most common cause of Cushing's syndrome that comes from inside the body, making up around 70% of cases. It’s also called Cushing’s disease.
Ectopic ACTH-producing tumor. It’s much less common for a tumor that produces ACTH to form somewhere else in your body. These tumors can be cancerous or noncancerous. They’re usually found in the lungs, pancreas, thyroid, or thymus gland.
Adrenal tumor. It’s also uncommon, but a tumor in the adrenal glands can prompt your body to make too much cortisol, which can lead to Cushing’s syndrome.
Cushing’s Syndrome Causes
Exogenous Cushing’s syndrome most often comes from taking too much steroid medication for too long.
Doctors don't know exactly what causes the tumors that lead to endogenous Cushing’s syndrome.
It's not usually a condition that's passed along in families. But in some rare cases, people have it because a problem in their genes makes them more likely to get tumors on their glands.
Cushing’s Syndrome Symptoms
Your case might be different than someone else's, but when the disease is full-blown, common symptoms are:
- A rounded, rosy face
- Weight gain, especially in the central body, with thin arms and legs
- A fat pad in the upper back or base of the neck
- Weak muscles
- Thinning skin that is easy to bruise, with stretch marks especially on your belly, thighs, arms, and chest
Other symptoms include:
- Acne
- Being very tired
- Sleep problems
- Low sex drive and problems having an erection
- Fertility problems
- Extra hair growth on your body and face
- Irregular periods
Children who have Cushing’s syndrome often have obesity and tend to grow slowly.
Cushing’s Syndrome Diagnosis
Cushing’s syndrome can be very hard to identify. The condition tends to develop slowly, and many other things can cause similar symptoms. It may take years to get to the correct diagnosis.
Your doctor will try to rule out other, more common health problems that could be causing your symptoms. It’s important that they know about any steroid medications you use. If your doctor thinks you may have Cushing’s syndrome, they will probably recommend some of these tests:
24-hour urinary free cortisol test. This common test collects your urine for 24 hours to measure cortisol levels in it.
Dexamethasone suppression test. You’ll take a low-dose steroid pill at 11 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 levels in your saliva at night, when cortisol production is usually the lowest.
You might have to take these tests more than once because even if you have Cushing’s syndrome, your cortisol levels might not be high all the time.
If these tests confirm Cushing’s syndrome, you’ll have other blood tests or imaging scans to find out what's causing it.
- A blood test checks levels of the cortisol-regulating hormone ACTH. If levels are normal or high, a pituitary or ectopic tumor is the likely cause. If they’re low, it’s probably an adrenal tumor.
- A corticotropin-releasing hormone (CRH) stimulation test is one way to tell the difference between a pituitary and ectopic tumor.
- A high-dose dexamethasone suppression test is another way to tell the difference between a pituitary and ectopic tumor.
- Imaging tests are sometimes done to look for tumors.
- A test called petrosal sinus sampling takes blood samples from veins close to the pituitary gland and far from it. You’ll also get a shot of CRH, the hormone that causes the pituitary gland to release ACTH. Levels of ACTH in the blood samples help tell whether it’s a pituitary or an ectopic tumor.
Questions to Ask Your Doctor
You can ask your doctor the following questions:
- 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?
Finding Expert Care
For Cushing's syndrome caused by something inside your body, a doctor called an endocrinologist will probably guide your care. This type of doctor specializes in hormonal disorders. You may also need a brain surgeon or a cancer doctor.
Your primary care doctor or your insurance carrier can give you a referral to an endocrinologist. Ask whether a particular doctor has experience treating Cushing’s syndrome. You can also check the provider directories of hospitals, medical groups, and medical schools in your area, and some advocacy groups and professional organizations can help you locate an expert, such as:
Be aware that you’ll probably need approval in advance to see an endocrinologist who isn’t in your insurance network, and you might have high out-of-pocket costs.
Cushing’s Syndrome 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.
- If you have too much cortisol because you're taking steroid medicines to treat a chronic condition, your doctor will check to see if you can slowly lower your dose while still managing your asthma, arthritis, or other conditions.
- You may need surgery to remove a tumor.
- You may have radiation alongside surgery if your doctor can't completely remove the tumor. They'll use it instead of surgery in some cases.
- Medications to control cortisol production or block its action may be an option when surgery and radiation don’t work. These medications can have serious side effects. A doctor may also prescribe medications before surgery to people who are very sick with Cushing’s syndrome.
- In some cases, the tumor or its treatment will affect other hormones produced by the pituitary or adrenal gland, and you may need hormone replacement medication.
Cushing’s Syndrome Complications
Cushing’s syndrome can cause serious health problems and even death if not treated. Problems may include:
- A heart attack or stroke
- Blood clots in the legs or lungs
- Infections
- Bone loss and fractures
- High blood pressure
- High cholesterol
- Depression or mood changes
- Loss of memory or trouble concentrating
- Type 2 diabetes
- Kidney stones
What to Expect With Cushing’s Syndrome
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
Treatment cures most people with Cushing’s syndrome. But it might take more than a year before you’re symptom-free, and some complications may be permanent.
If your Cushing's syndrome isn't curable, for example, you can’t stop taking steroids because of another medical condition, you and your doctor will discuss ways to manage your symptoms and lower your risk for complications.
Getting Support for Cushing’s Syndrome
It can be very frustrating to live with Cushing’s syndrome. Even when treatment is successful, progress may be slow. The changes to the way you look can be particularly hard to handle.
Look for ways to connect online and in person with people who have experience with Cushing's syndrome. Your doctor may know of a support group in your area. There are also virtual support groups and patient forums sponsored by advocacy groups including the Cushing’s Support & Research Foundation and the National Adrenal Diseases Foundation.
Tell your doctor how you feel emotionally, not just physically. If you get depressed, it's important to get treated for that.
Takeaways
Cushing's syndrome is a hormonal disorder caused by too much cortisol in the body. Taking steroid medications for conditions such as asthma or lupus commonly causes Cushing's syndrome. It’s also a rare disease caused by certain types of tumors. Treatment for the condition depends on the underlying cause and may include surgery, medication, or lifestyle changes. With proper management, most cases can be cured.
Cushing’s Syndrome FAQs
What happens if you don't treat Cushing's syndrome?
Without treatment, Cushing’s syndrome will continue to get worse. You’re likely to develop serious complications, like heart disease, blood clots, type 2 diabetes, and serious infections. You can also die from it.
Is Cushing's syndrome curable?
Usually, yes. If it’s caused by a medication you’re taking, Cushing’s syndrome will likely resolve if you’re able to lower your dose or switch to a different drug. For Cushing’s syndrome caused by a tumor, surgery or radiation can be effective.
Is Cushing’s syndrome caused by stress?
Experts say the spike in cortisol that happens when you feel stress isn’t enough to cause Cushing’s syndrome.