If you are having any symptoms or have any questions, please call 811 to speak with a registered nurse 24 hours a day.
What is Cushing’s syndrome?
Cushing’s syndrome is a disease that occurs when your body makes too much of the hormone cortisol. Also, it can occur from getting too much cortisol from medicines.
A little cortisol isn’t bad. Prolonged exposure to the hormone causes problems. Cortisol is produced by the outer area of your adrenal glands. These glands are located above each kidney. Cortisol is good for your body in limited amounts. In fact, cortisol is sometimes called a “stress hormone.” This is because it helps the body respond to stress. Also, it helps your body use nutrients, treat inflammation, control the amount of water in your body, and tell your liver when to increase your blood sugar as it needs it.
Cortisol is controlled by another hormone known as ACTH. It is made in your pituitary gland. This gland is located just below your brain.
What are the symptoms of Cushing’s syndrome?
The following are some of the symptoms of Cushing’s syndrome:
- Fat deposits that form around the abdomen and upper back (a hump often forms between the shoulders)
- Thinner skin that is easily bruised
- Cuts, scratches and insect bites that take a long time to heal
- Pink or purple stretch marks on your skin (especially the arms, breasts, abdomen and thighs)
- Round and puffy face
- Muscle weakness
- Irregular menstrual periods in women
- Thicker or more visible hair on the face and body (usually more noticeable in women)
- Erectile dysfunction in men
- High blood pressure
- Osteoporosis (weak and brittle bones)
- High blood sugar levels
CAUSES & RISK FACTORS
What causes Cushing’s syndrome?
The most common cause of Cushing’s syndrome is taking corticosteroid medicines (pills) every day for weeks to months. These medicines are usually prescribed to treat inflammatory disease, such as lupus and rheumatoid arthritis.
Inhaled steroid medicines for asthma and steroid skin creams for eczema and other skin conditions don’t usually cause Cushing’s syndrome. These forms are used for eczema and other skin conditions. Even pills taken every day for short periods of time or every other day for longer periods don’t often cause Cushing’s syndrome.
The next most common cause of Cushing’s syndrome is when the body makes too much cortisol. It may be one adrenal gland producing too much cortisol, or it may be both adrenal glands. This overproduction could be triggered by a tumor on the pituitary gland. Pituitary gland tumors causing Cushing’s syndrome aren’t usually malignant (cancerous). However, if these tumors get too big, they can cause problems with your eyesight.
Cushing’s syndrome also can be caused by other tumors in your body. Ectopic ACTH-producing tumors can be malignant or benign (not cancerous). They release too much of the hormone ACTH. This tells your body to produce more cortisol. Not much is known about what causes the tumors. If your body isn’t getting enough ACTH, your cortisol levels will decrease. As this happens, it shrinks your adrenal glands. This can lead to another disease called Addison’s disease.
A primary adrenal gland disease or disorder can also cause Cushing’s syndrome. With this type of disorder, your glands make too much or too little cortisol. This production of cortisol is not in response to ACTH.
DIAGNOSIS & TESTS
How is Cushing’s syndrome diagnosed?
Your healthcare provider may start by asking you questions about your medical history and doing a physical exam. If the cause is a medicine you are taking, no tests are usually needed. If your healthcare provider thinks that you have Cushing’s syndrome but you are not taking medicines that can cause it, you may need to have some blood and urine tests. These tests measure the amount of cortisol in your body.
You may be asked to collect your urine for 24 hours. You may also be given a medicine before your blood or urine is collected. This tests your body’s response to steroids. You also may be asked to collect your saliva late in the evening. How much cortisol is in the saliva can help your doctor determine if you have Cushing’s syndrome.
You may need a computerized tomography (CT) scan or a magnetic resonance imaging (MRI) scan. These tests take a picture of your insides. Looking at these pictures, your healthcare provider will be able to tell whether there are tumors on the pituitary gland or in other parts of your body that may be causing Cushing’s syndrome.
Can Cushing’s syndrome be prevented or avoided?
If your healthcare provider plans to treat any of your health issues with steroid medicines, talk with them first. Discuss how long you will have to take the steroids. Ask them if there’s a possibility it will cause Cushing’s syndrome. There is no way of preventing pituitary gland tumors.
How are Cushing’s disease and syndrome treated?
If a corticosteroid medicine is causing Cushing’s syndrome, your healthcare provider will gradually lower your dose over time. Abruptly stopping a corticosteroid can cause a dangerous drop in your cortisol Never stop taking these medicines without your healthcare provider’s approval. Your healthcare provider may also prescribe a non‑corticosteroid medicine to replace the corticosteroid that was causing Cushing’s syndrome.
If a tumor is causing Cushing’s syndrome, your healthcare provider will surgically remove it from your pituitary gland. This type of surgery is usually successful. Radiation treatments are sometimes used after surgery to lower the risk that the tumor will come back. You’ll need to take a cortisol replacement medicine after the tumor is removed. This is because it will take your body some time before it starts producing normal amounts of cortisol. Most people only need to take the cortisol replacement medicine for a few months, but it could take up to year.
Living with Cushing’s syndrome
Cushing’s syndrome treatment does not always return people to the same level of health they once had. Their bones may not be as strong. People who no longer have Cushing’s syndrome are at higher risk of developing diabetes, high blood pressure, or high cholesterol. A person cured of Cushing’s syndrome might have some memory loss and slight mental decline. But the change is slight. In rare cases, people who have had surgery to remove a tumor that was causing Cushing’s syndrome never regain normal cortisol levels and must therefore continue to take the cortisol replacement medicine.
Once you’ve been diagnosed with Cushing’s syndrome and treated, you will need regular checkups for the rest of your life. In rare cases, surgery to remove a tumor may miss some of the tumor and it may grow again.