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Cushings Syndrome

Welcome to the Cushing Syndrome section of our website. We have deliberately listed this condition as Cushings Syndrome because the average "layperson" searches for help using this spelling. Therefore, in order to reach and help as many people as possible via the search engines, we listed the information in a way to be most helpful.

Introduction

Cushings Syndrome (CS) is a hormonal disorder caused by high levels of the hormone cortisol. The most common cause of Cushings Syndrome is excess steroid medications. Otherwise, Cushings Syndrome is caused by growths (tumors) in the body.

What are the Signs and Symptoms?

·        Change in fat distribution, with more fat in the upper body, such as a rounded face, increased fat around the neck, a large abdomen, and thinning arms and legs.

·        The skin becomes fragile and thin, with easy bruising and poor healing. Purplish pink stretch marks called striae may appear.

·        Women may have excessive hair growth.

·        The bones are weakened due to osteoporosis, resulting in risk of fracture. 

·        Changes in mood, including fatigue, irritability, anxiety and depression. 

·        Hypertension and diabetes

·        Changes in the menstrual cycle in women.  Men may describe diminished sexual libido and performance.

How is Cushings Syndrome Diagnosed?

Demonstration of an elevated cortisol (called hypercortisolism)

·        24-Hour Urinary Free Cortisol Level: An elevated urinary cortisol level from a 24-hour collection suggests CS.  Usually, this test needs to be repeated several times.

·        1 mg overnight dexamethasone suppression test:  In this test, the patient takes 1 mg of dexamethasone orally at midnight, and a fasting cortisol is drawn at 8AM the next day.  An elevated morning cortisol is suggestive of CS.

·        Salivary cortisol: In this test performed at home, saliva is placed in a tube at midnight, and then sent for cortisol measurement.

·        LowDose Dexamethasone suppression Test: In this test, dexamethasone tablets are taken by mouth every 6 hours for 2 days, and urine collections for cortisol are performed. This test may be accompanied by a CRH test, where CRH is administered through an IV at the end of the 2 days of dexamethasone, and blood cortisol is then measured. Elevated urinary or blood cortisol tests suggest Cushings Syndrome.

What is the Cause of the Cushings Syndrome?

Once Cushings Syndrome is detected, the next step is to find the cause.  Normally, the pituitary gland produces ACTH, which circulates in the blood and stimulates the adrenal glands to produce cortisol.  Therefore, Cushing's Syndrome can arise from too much ACTH, or by production of cortisol by the adrenal gland.  A blood ACTH test helps determine the cause:

·        ACTH dependent: the blood ACTH is normal or high. This includes a pituitary tumor producing ACTH (referred to as Cushing’s disease and is the most common cause), and ectopic ACTH production (the ACTH is produced elsewhere, such as by a carcinoid tumor or lung cancer). 

·        ACTH independent: the blood ACTH is very low. Cushings Syndrome consists of an adrenal growth, either benign or malignant, producing cortisol.

Next steps:

·        If the patient has ACTH independent Cushings Syndrome, then a CT scan of the adrenal glands should be performed to look for an adrenal mass. 

·        If the patient has ACTH dependent Cushings Syndrome, the next step is a brain MRI scan to look for a pituitary tumor. If no pituitary tumor is seen, then the patient will undergo a catheterization procedure called petrosal sinus sampling, an outpatient procedure where catheters are introduced through a vein in the upper thigh/groin region, with local anesthesia and mild sedation. The catheters are threaded through the blood vessels (petrosal sinus) which surround the pituitary gland.  Levels of ACTH from the petrosal sinuses are measured and compared with ACTH levels in a forearm vein. ACTH levels higher in the petrosal sinuses than in the forearm vein indicate the presence of a pituitary adenoma; similar levels suggest ectopic ACTH syndrome.

How to Treat Cushings Syndrome?

The treatment depends on the cause of the Cushings Syndrome. 

·        For Cushing’s disease, (due to a pituitary tumor), the treatment is transsphenoidal surgery, through the nose or upper lip. The success rate of this procedure is over 80% when performed by a surgeon with extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results.

·        If the evaluation suggests the presence of ectopic Cushings Syndrome, then the treatment is directed to the source.  For example, if a carcinoid tumor in the lung is detected, then there are several options for therapy, including surgery.

·        If an adrenal growth is the cause, then surgery of the abnormal adrenal gland is necessary.

·        If patients are not cured by this surgery, then further therapy, including use of medications that lower cortisol secretion from the adrenal gland, surgical removal of the adrenal glands, or radiation to the pituitary gland can be considered.

What Happens After Surgical Cure?

After curative surgery, cortisol levels will be very low, called adrenal insufficiency. Patients are given a synthetic form of cortisol (such as hydrocortisone or prednisone) at that time. Most patients can stop this replacement therapy in less than a year. 

Written by
Dr. Laurence Katznelson

Medical Director, Pituitary Center

Professor, Division of Endocrinology

Stanford University School of Medicine

Stanford, California

 

Thank you Dr. Katznelson for allowing us to alter this document by changing the name of Cushing Syndrome to Cushings throughout this document. Your understanding of our efforts to reach and help those impacted by this condition is greatly appreciated. 


Welcome to the Cushings Syndrome support group of The MAGIC Foundation.

My name is Stacey and I am a Cushing's patient and the Coordinator of our group. 

As an affected adult, I am here to help you.

On this page you will find-

  • An easy to understand/ general description of Cushing's, more commonly referred to as (CS) written by a medical professional 
  • A link to my personal story- you are not alone!
  • A Glossary of Terms (left) helps you understand difficult medical terms
  • If you need help, or want to speak to our Cushings/patient and Division director contact us at (708) 383-0808 or here online. 

If you would like to become a part of our wonderful group of CS people you will be able to access:

    • A Friday Email with Links to medical information/additional articles which are helpful to
  • Discounts to our annual educational convention
  • and Network with others like us!

   To see information on joining- click the Join link at the upper right side of this page.

link to facebook group for cushings patients

Cushing Syndrome folks on Facebook! Join us!

 

link to educational convention information

link to friday email information

 

 

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