Commonly asked questions about Cushing’s syndrome

QWhat is Cushing's syndrome?
ACushing's syndrome is the collective name for a variety of health problems that develop if there is too much cortisol circulating in the body for too long.¹ Click here for more information.

QWhat causes Cushing’s syndrome?
AIn the majority of cases, Cushing’s syndrome develops when a person has been regularly taking more glucocorticoid-containing medicine than his or her body can handle. But in the other cases, Cushing’s syndrome is usually due to a tumor causing overproduction of a glucocorticoid called cortisol.^1,2 Click here for more information.

QAre tumors that cause Cushing’s syndrome usually cancerous?
ANo. In the majority of people, the tumor is benign (noncancerous).³ Click here for more information.

QWhere is the tumor that causes Cushing’s syndrome located?
AIn more than 2 out of 3 people, the tumor is in the pituitary gland. However, in some cases the tumor is in the adrenal gland or somewhere else in the body.¹ Click here for more information.

QHow does a pituitary tumor cause Cushing’s syndrome?
AA tumor in the pituitary gland produces excess amounts of a hormone called adrenocorticotropic hormone (ACTH). This excess ACTH tells the adrenal glands to produce too much cortisol. Excess cortisol is what causes Cushing’s syndrome.⁴ Click here for more information.

QHow does an adrenal tumor cause Cushing’s syndrome?
AAn adrenal tumor releases excess cortisol, irrespective of ACTH production.⁴ Click here for more information.

QWhat is the difference between Cushing’s syndrome and Cushing’s disease?
ACushing’s disease is when Cushing’s syndrome is caused by a pituitary tumor.⁴ Click here for more information.

QWhat is “ectopic Cushing’s syndrome”?
AEctopic Cushing’s syndrome is caused by a nonpituitary tumor that produces excess ACTH.⁴ Click here for more information.

QWhat are some of the signs that indicate a person might have Cushing's syndrome?
ASome of the most visible signs of Cushing's syndrome include a round ("moon") face, purplish streaks across the skin, an unusual buildup of fatty tissue in the abdominal area and/or between the shoulder blades ("buffalo hump"), easy bruising, and excess hair growth (hirsutism) in women.^1,5 Click here for more information.

QDo these changes happen to everyone with Cushing's syndrome?
ANo. Cushing's syndrome signs and symptoms can vary from person to person.¹ Click here for more information.

QWhat are some of the other signs and symptoms of Cushing's syndrome?
AObesity, reduced sex drive, a red face, high blood pressure, weakness, diabetes and other glucose metabolism disorders, weak bones, kidney stones, thin skin, memory problems, and depression and other mood disorders are some of the other signs and symptoms of Cushing's syndrome. ^2,6 Click here for more information.

QWhat are complications caused by Cushing's syndrome?
ACushing's syndrome can cause many complications, including several that can put the heart at risk. These include high blood pressure, high cholesterol, diabetes, and obesity. Other complications include osteoporosis and psychological and mental changes.² Click here for more information.

QHow are these complications treated?
AReducing cortisol to normal levels can help in the management of these complications. However, your doctor will decide the best way to treat them.⁴ Click here for more information.

QHow is Cushing's syndrome diagnosed?
AA series of tests are performed to first diagnose Cushing's syndrome and then to find out what is causing it. It can take a long time for many people with Cushing's syndrome to be accurately diagnosed since Cushing’s syndrome is easy to mistake for other conditions. Cushing’s syndrome causes many conditions, such as diabetes and osteoporosis, which are easy to diagnose and treat as the primary condition. If Cushing's syndrome is the underlying cause of another condition, it often requires more time and effort to diagnose.^1,5 When there are multiple conditions or other signs and symptoms, Cushing’s syndrome should be suspected. Click here for more information.

QWhy is Cushing's syndrome often misdiagnosed?
AThe signs and symptoms of Cushing's syndrome are not the same for everyone, and many signs and symptoms are the same as those seen with other, more common conditions. For this reason, Cushing's syndrome may be diagnosed as one of those other conditions at first.¹ Click here for more information.

QWhat tests are used to diagnose Cushing's syndrome?
ATo diagnose Cushing's syndrome, tests are performed to measure cortisol levels in the urine (urine free cortisol test), saliva (late-night salivary cortisol test), and/or blood (dexamethasone suppression tests). ^1,5 Click here for more information.

QDo you have to go to the hospital for these tests?
ANo. Samples of urine and saliva can be gathered at home and are then tested in a lab. For the other test, one or more doses of dexamethasone are taken at home, then a blood sample is taken a few hours later at the doctor's office.⁵ Click here for more information.

QWhat tests are used to find out what is causing Cushing's syndrome?
AThe doctor uses a blood test to measure ACTH levels, an MRI and/or CT scan, and other tests to find out if Cushing's syndrome is being caused by a pituitary tumor producing too much ACTH, an adrenal tumor producing too much cortisol, or a tumor in another part of the body producing too much ACTH. ² Click here for more information.

QWhat is a CRH stimulation test?
AA CRH stimulation test involves giving an intravenous injection of CRH (which stands for cortisol-releasing hormone). First, a blood test is performed to check ACTH and cortisol levels. Then, the CRH injection is given. After that, blood tests are repeated several times to recheck ACTH and cortisol levels. If these levels are higher, this helps to confirm that there is a pituitary tumor.⁷ Click here for more information.

QWhat is an IPSS test?
AAn inferior petrosal sinus sample (IPSS) test can be used to determine whether an ACTH-producing tumor is in the pituitary gland or elsewhere.²

QWhat are the treatment goals for Cushing's syndrome?
AThe treatment goals for Cushing's syndrome are to return cortisol levels to normal, reduce excess ACTH levels, reverse signs and symptoms, and maintain control of the condition for the long term.⁴ Click here for more information.

QCan Cushing's syndrome be cured?
AYes, Cushing's syndrome can be cured, but this can depend on several factors, such as the size of the tumor and the treatment used.⁴ Click here for more information.

QHow is Cushing's syndrome treated?
AIf Cushing’s syndrome is caused by glucocorticoid-containing medicine, then the medicine should be gradually stopped.⁸ If Cushing's syndrome is caused by a tumor or other type of growth, then surgery to take out the tumor or growth is the preferred first treatment.^1,4 Click here for more information.

QHow effective is surgery for Cushing's syndrome?
AThe success of surgery can often depend on how large the tumor is and the skill of the surgeon. For example, with pituitary surgery, success rates are as high as 90% when tumors are small, but less than 65% when they are large.⁴ Click here for more information.

QWhat is transsphenoidal surgery for Cushing's syndrome?
ATranssphenoidal surgery is the type of surgery most often used to remove a pituitary tumor. During this procedure the neurosurgeon, who should be skilled and experienced in this type of surgery, reaches the pituitary gland through an incision in the mouth or nose.^4,8-10 Click here for more information.

QWhat is laparoscopic surgery for Cushing's syndrome?
ALaparoscopic surgery is often used to remove the adrenal gland where the tumor is located.¹ With this type of surgery, a fiber optic viewing tool is placed through an abdominal incision. Laparoscopic surgery is less invasive than traditional surgery. Click here for more information.

QIs radiation therapy ever used to treat Cushing's syndrome?
ARadiation therapy at the pituitary gland can be used to treat Cushing's syndrome if transsphenoidal surgery is ineffective. It may have a good success rate in these cases, from 45% to 83%.^6,10 However, it can take a long time before improvement is noticeable.¹ And, radiation therapy can cause a condition called hypopituitarism, which means that the pituitary gland partially or completely stops working.¹ Click here for more information.

QIs there medicine for Cushing's syndrome?
ACurrently, there are no medicines that have been approved specifically for Cushing's syndrome. However, there are medicines to reduce cortisol production in certain situations.¹⁰ Click here for more information.

QCan children get Cushing’s syndrome?
AYes. However, Cushing’s syndrome is rare in children.¹¹ Click here for more information.

QHow can you tell if a child might have Cushing’s syndrome?
AThe most obvious signs of Cushing’s syndrome in children are when their faces keep getting rounder, and they are gaining weight but not growing normally in height. In addition, children may develop certain conditions that are unusual for their age, such as high blood pressure.¹¹ Click here for more information.

QDo children have surgery for Cushing’s syndrome?
AYes, surgery to remove the tumor is generally the preferred first treatment for both adults and children with Cushing’s syndrome.¹¹ However, radiation therapy can also be used as the first treatment for children.⁶ Click here for more information.

QCan animals get Cushing's syndrome?
AYes. Dogs, cats, horses, and other animals can get Cushing's syndrome.¹² Click here for more information.

QWhat are the symptoms of Cushing's syndrome in animals?
ASymptoms of Cushing's syndrome common to dogs, cats, and horses are a “pot belly,” drinking and urinating more than usual, and muscle problems.^12-14 Cats and horses with Cushing's syndrome also frequently develop diabetes.^13,14 Click here for more information.

QWhat is the treatment for animals with Cushing's syndrome?
ATreatment for dogs and cats with Cushing's syndrome can be surgery or medicine, depending on the specific case.^12,13 Horses are treated with medicine.¹⁴ However, there are currently no approved medicines specifically for Cushing's syndrome in animals.