Common Questions

Common Questions

What's the difference between Cushing's syndrome and Cushing's disease?
A: Cushing's syndrome occurs when there are high levels of cortisol in the body for a long period of time. When Cushing's syndrome is caused by a pituitary tumor, it is called Cushing's disease.1

What causes Cushing's syndrome?
A: Cushing's syndrome can be caused by the overuse of steroids to treat serious medical conditions or can be related to a tumor. When the tumor is located in the pituitary gland, it can cause the release of excessive ACTH, which in turn acts in the adrenal glands, triggering them to overproduce cortisol. This is known as Cushing's disease. Tumors located elsewhere in the body (such as in the adrenal gland itself) can also cause high levels of cortisol.2,3

What is cortisol and why is too much of it a bad thing?
A: Cortisol is a natural hormone that's produced by the body. Cortisol is necessary for healthy metabolism, guarding tissues against damaging inflammation, and helping the body deal with stressful situations.4 But when levels are too high, the body reacts by developing symptoms such as weight gain, fatigue, increased blood pressure, and diabetes. These are also symptoms associated with Cushing's syndrome.2,3

When should I see an endocrinologist?
A: Oftentimes, your primary healthcare professional can administer a 24-hour urine free cortisol test. If the results show high levels of cortisol and your healthcare professional suspects Cushing's syndrome, he or she may recommend that you see an endocrinologist, a specialist in hormone functions and diseases.5

What are my treatment options for Cushing's syndrome?
A: If Cushing's syndrome is caused by a tumor or tumors causing overproduction of cortisol in the adrenal glands (endogenous Cushing's syndrome), surgery is often recommended to remove the tumor(s). If surgery fails, or if the patient is not a candidate for surgery, patients may require medications that lower cortisol levels or block cortisol at its site of action. Additionally it might be necessary to radiate the tumor.3

What's involved in surgery for pituitary tumor removal?
A: The most advanced pituitary tumor removal is performed by a trained surgeon using endoscopic technology and is called transsphenoidal surgery. This procedure involves entry through the patient's nose and sinuses, which gives the surgeon access to the tumor without having to make any external incision. The procedure takes about 3 hours and the patient can go home within 2 days after the surgery.3,4

What are some risks associated with surgery of the pituitary gland?
A: The pituitary regulates multiple hormones, so there may be a need for the replacement of other hormones postoperatively, including thyroid hormones, cortisol, growth hormone, estrogen, or testosterone. Damage to the back portion of the pituitary gland may produce a condition known as diabetes insipidus, which will lead to frequent urination and excessive thirst, since the kidneys will no longer adequately concentrate the urine. This can be controlled with supplemental medications in some cases. Remember, each case is different, so it's important to consult with your healthcare professional for the options that are right for you.

Damage to the carotid arteries, which are located on either side of the pituitary, is also a risk factor associated with surgery. However, keep in mind that this occurs in less than 1/1000 cases. Other rare risks include blood clot formation at the site of the tumor removal. In these cases, an additional operation may be needed to remove the blood clot.3,6

What can I expect after surgery?
A: Most people recover from surgery within 2 to 3 weeks, to the point that they can go back to work and normal daily life.3 However, feeling worse before you feel better is what most people with successful surgeries report. It's common to experience sinus headaches, nasal congestion, and fatigue, with a gradual decline of intensity as time goes on. This is usually due to the fact that your cortisol levels will drop well below healthy levels right after surgery. Your healthcare professional may prescribe a synthetic cortisol as a supplement to compensate for low cortisol levels. Most people can expect to take this supplement for 6 to 18 months until the adrenal-pituitary system can take over and function normally again. As your adrenal-pituitary system heals, you can expect the symptoms that you had before your surgery to go away and to feel normal again.3,6

If I have surgery, how will I know if I'm cured?
A: After surgery, your healthcare professional will measure the cortisol levels in your blood. A very low level usually indicates that the surgery was successful. This can typically be determined within 1 to 2 weeks after surgery. Successful outcomes of transsphenoidal surgery also involve the diminishing of symptoms that were present before surgery. For example, if weight gain in the abdomen was present before surgery, the weight may slowly come off as you recover. However, most people are advised to monitor and track their health to see if symptoms recur.3,6

How long will it take for my symptoms to go away after surgery?
A: After a successful surgery, virtually all symptoms of Cushing's disease are reversible. Most patients see symptoms diminish in the 1 to 2 years after surgery.3,6

What are my treatment choices if I'm not cured after surgery?
A: If your initial surgery is not successful or if you experience a recurrence of symptoms months or years after surgery, your healthcare professional may recommend a second operation or radiation therapy. Also, medications are available to block cortisol at the receptor site or reduce its concentration in the body by various mechanisms of action. Because each case is different, it's important to consult with your healthcare professional for the options that are best for you.3

What are the chances of a recurrence of Cushing's disease after surgery?
A: Some studies reveal that the remission rate for Cushing's disease can range from 42% to 86%.8 The rate of recurrence after surgery can increase over time. In one study, 7% of people had their symptoms return at 2 years, 11% at 3 years, and 26% at 5 years.7

Is a pituitary tumor cancerous?
A: In most cases, tumors of the pituitary are benign (noncancerous); malignant pituitary tumors are rare.9 However, tumors in other parts of the body that lead to Cushing's syndrome can, in some cases, be cancerous.2

  1. Cushing's syndrome. National Endocrine and Metabolic Diseases Information Service Web site. http://endocrine.niddk.nih.gov/pubs/cushings/cushings.aspx#diagnosis. Accessed April 13, 2013.
  2. Cushing's syndrome/disease. American Association of Neurological Surgeons Web site. http://www.aans.org/en/Patient%20Information/Conditions%20and%20Treatments/Cushings%20Disease.aspx. Accessed April 13, 2013.
  3. Frequently asked questions about transsphenoidal surgery for pituitary adenomas. Massachusetts General Hospital Web site. http://www.massgeneral.org/neurosurgery/services/faq_transsphenoidalsurgery_cushingdisease.aspx. Accessed April 13, 2013.
  4. Adrenal diseases: Cushing's syndrome. The facts you need to know. National Adrenal Diseases Foundation Web site. http://www.nadf.us/diseases/cushings.htm. Accessed April 13, 2013.
  5. Treatment options for recurrent Cushing's disease. Cushing's Support and Research Foundation Web site. http://www.csrf.net/page/treatment_options_for_recurrent_cushings_disease.php. Accessed April 13, 2013.
  6. Cushing's Syndrome and Cushing's Disease: Your Question's Answered. The Pituitary Society Web site. http://www.pituitarysociety.org/public/specific/cushing/cushings.pdf. Accessed April 13, 2013.
  7. Patil CG, Prevedello DM, Lad SP, Vance ML, et al. Late recurrences of Cushing's disease after initial successful transsphenoidal surgery. J Clin Endocrinol Metab. 2008;93:358-362.
  8. Findling JW, Raff H. Clinical review: Cushing's syndrome. Important issues in diagnosis and management. J Clin Endocrinol Metab. 2006;91:3746-3753.
  9. American Cancer Society Web site. http://www.cancer.org/cancer/pituitarytumors/detailedguide/pituitary-tumors-what-is-pituitary-tumor. Accessed April 25, 2013.
Cushing’s Syndrome patients