Hormones are important substances created by your endocrine glands. Think of them as messengers that control and coordinate many activities in the body including development, metabolism, reproduction, mood, and other functions. Unbalanced hormones can cause serious and life-altering symptoms and diseases such as Cushing’s syndrome, which is a disorder of high cortisol levels in the body.
In this article, you can learn more about what Cushing’s syndrome is, prevention, signs of the disorder, risk factors, and treatment options.
What is Cushing’s Syndrome?
Cortisol is a steroid hormone. When abnormally high levels of it are in the blood, this is referred to as Cushing’s syndrome.
Causes of High Cortisol Levels
There are four triggers of Cushing syndrome. Finding the source of the excess cortisol is important because it determines the course of treatment.
Pituitary tumor
Tumors of the pituitary gland, also known as Cushing’s disease, cause 70-80% of Cushing’s syndrome.
Adrenal tumor
An adrenal tumor is responsible for about 10% of Cushing’s syndrome. The tumor is usually a bilateral adrenal hyperplasia or benign (non-cancerous) adrenal nodule that is making cortisol in excess. Adrenal cancer produces excess cortisol about half of the time, but it is an extremely rare tumor.
Ectopic tumor
About 10% of patients with Cushing’s syndrome have an ectopic cancer, most often in the lung that makes cortisol or a related steroid hormone.
Ingesting steroids in excess
Cushing syndrome may be the result of using corticosteroid medications for a long time. Corticosteroids may be prescribed to manage asthma, arthritis, and other diseases.
High Cortisol Levels Symptoms and Signs
There are several symptoms and signs of Cushing’s syndrome which include:
Symptoms
- Fatigue
- Mid-section weight gain
- Bruising easily
- Swelling in the legs
- Mood swings
- Irregular periods
- Mental fogginess
- Muscle weakness
Signs
- High blood pressure
- Round facial shape (moon face)
- Diabetes
- Pad of fat at the back of the neck (buffalo hump)
- Stretch marks
- Osteoporosis
- Abnormal hair growth
Additionally, some patients have “subclinical Cushing’s.” This means that while they have few, if any symptoms of Cushing’s disease, these patients have abnormal lab results and should likely have treatment.
Diagnosing Cushing’s Syndrome
Your doctor will run a series of tests to measure your cortisol levels and determine the source of the excess hormone (pituitary, adrenal, or an ectopic tumor). Tests include saliva, blood, urine, and imaging. Diagnosing Cushing’s syndrome can be difficult and take time because many of the symptoms can be caused by other conditions.
Risk Factors for Cushing’s Syndrome
A few inherited endocrine tumor syndromes increase a person’s risk for pituitary and adrenal tumors, which can produce cortisol. The most common one is MEN1. Any patient with confirmed macronodular hyperplasia also should be tested. Genetic testing and counseling are recommended for people with more than one hormone-producing tumor. It should also be considered for patients who have multiple family members with these tumors.
High Cortisol Levels Treatment
The goal of Cushing’s syndrome treatment is to reduce the amount of cortisol in your body. Treatment options vary depending on the cause of the high cortisol levels. Treatment may include:
Lessening use of corticosteroid medications
If Cushing’s syndrome is caused by taking a long-term corticosteroid medication, your doctor may be able to reduce your dosage or change your medication to a non-steroid.
Surgery
Surgery to remove an adrenal tumor is always recommended for an adrenal cause of Cushing’s syndrome. This is also known as an adrenalectomy. The tumor can usually be removed using a minimally-invasive surgery called laparoscopic adrenalectomy.
Learn More About This Procedure
Medications
Medications can be used to control cortisol levels in the body when surgery is not an option.
Prognosis and Follow-Up
After you have surgery for Cushing’s syndrome, you will meet with your surgeon two weeks after the operation. You will have regular appointments with your endocrinologist to monitor your blood tests and manage your medications. You will be slowly weaned off of steroids, a process that can take up to two years in some patients.
Many Cushing syndrome symptoms will go away after treatment, but this will most likely happen over time – up to 18 months. Weight loss, changing face shape, and reduced bruising are usually first. Additionally, if you have had long-standing issues caused by Cushing’s syndrome, there may be some long-term effects that require monitoring. Lastly, increased cortisol levels may have suppressed some autoimmune disorders. Once cortisol levels are normal, the disorders may come back.
For additional information about Cushing’s syndrome, please visit our Center for Endocrine Tumors and Disorders.
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Written by Melanie Goldfarb, M.D., Associate Professor of Surgery, Director for the Endocrine Tumors and Disorders Center, and Medical Director for Cancer Survivorship at the Saint John’s Cancer Institute.