Cyclical Cushing’s: A patient’s perspective

Cyclical Cushing’s: A patient’s perspective

By Meagan Jenkins

 

They say Cushing’s happens to 2-3 people per million*, which means Cyclical Cushing’s is even more rare.

All statistics vary, and many Doctors try to go strictly by “textbook” when it comes to Cushing’s.

In patients with Cushing’s this saying rings very true—

“When you hear hoof beats think Zebras not Horses.”

Cushing’s is a disease or syndrome caused by a tumor in your pituitary or adrenal glands causing your body to produce too much cortisol.  In patients with Cyclical Cushing’s, the tumor essentially shuts on and off, causing your body to not ALWAYS produce too much cortisol, but at times too little as well.

Some Doctors refer to this as “Episodic Cushing’s” or “Mild Cushing’s” however I can tell you first hand there is absolutely nothing mild or even episodic about Cyclical Cushing’s.

During the times your body has too much cortisol or in a “high” you experience feelings of being too wired to sleep yet exhausted, weight gain, stretch marks, hormone deficiencies (from your body trying to compensate for too much of the cortisol hormone in your body).  Pain all the time from your body being poisoned by toxins.   It causes periods of hunger, and emotions feel like they are out of your control.  When your body is cycling, or in a “low” you feel fatigue, nauseous, feverish, flu like, anxiety and pain from your body “withdrawing” from not having enough of the hormone it is SO use to having.

Cyclical Cushing’s, is very rarely researched.  It takes a special group of Doctors, and a special group of tests to catch it.  It takes a very strong willed patient to get the diagnosis they seek.

The longer Cyclical Cushing’s or Cushing’s in ANY form goes undiagnosed the longer it takes to fully recover from Cushing’s itself.  Cortisol can mask other issues, and often leaves a patient with several different invisible illnesses that can be chronic and very hard to face.

Treatment for Cyclical Cushing’s is the same as Cushing’s.  You must find where the tumor is located (Pituitary or Adrenals) and remove it.  Recovery is VERY different for each patient.

Do not judge your journey, for that’s what makes us all you unique.  Instead, find strength in the common, allow that to bring you strength and embrace YOUR story.

*https://www.nichd.nih.gov/health/topics/cushing/conditioninfo/pages/risk.aspx