My Life With Cushing's Disease
A healthcare provider shares her story.
By Kathie Harrington, MA, CCC-SLP
Cushing's might sound like something soft and fluffy; but it's quite the contrary.
A rare condition that presents itself with many physical characteristics, Cushing's occurs most often in women ages 20-40, but can occur in males or in children and older adults, such as was the case for me.
I was diagnosed at 58.
I'd never heard of the disease until January 2007, when my endocrinologist confirmed some strange changes I was noticing with my body during a routine visit. He noted my "moon face" and the "buffalo hump" on the back of my neck as well as redness in my face and neck. He also realized my blood sugar levels were high even though I had been on 105 units of insulin per day due to my diabetes mellitus. My extreme fatigue was also a concern, as was my weight gain and lack of muscle strength in my arms and legs.
John Carmichael, MD, and Kathie at Cedars-Sinai, June 14, 2007.
Facing The Realization
When I was diagnosed, I was scared. After an MRI revealed a tumor on my pituitary gland it didn't take me long to realize that Cushing's is a very serious, life-threatening condition. But I also learned it often goes undetected and, thus, untreated. All healthcare professionals should know the signs of Cushing's disease in order to make/assist in an early diagnosis.
According to the Cushing's Support and Research Foundation (CSRF), an estimated 10-15 people are affected by the condition per every 1 million births. While Cushing's may never be a major portion of an LPN's patient caseload, it is important for nurses to be aware of its characteristics because it can co-exist with any disability, disease, or syndrome. As such, LPNs may find themselves in positions to assist in recognizing the disease.
Both Cushing's disease and Cushing's syndrome exist, both of which are the result of incorrect production of the steroid hormone cortisol, a hormone normally made by the adrenal glands and referred to as the "stress hormone" because it's typically produced by the body in response to stress. When produced it increases blood pressure and blood sugar, and reduces immune responses.
According to CSRF, Cushing's syndrome occurs when a tumor on the adrenal glands causes secretion of too much cortisol. Cushing's syndrome can also be caused by medications such as prednisone, which can limit and/or halt the level of cortisol the body is able to produce.
Cushing's disease occurs when one produces too much of the adrenocorticotropic (ACTH) hormone, which stimulates the adrenal glands and causes them to make too much cortisol. ACTH-producing tumors can originate elsewhere in the body (such as on glands, chest, thyroid or pancreas), but are most often found on the pituitary gland in both men and women. These tumors are almost never cancerous.
I had transsphenoidal surgery to remove the tumor and the gland at the Cedars-Sinai Medical Center, Los Angeles, in spring 2007. The procedure is very delicate in nature but is most often recommended, according to the Pituitary Network Association. It's carried out through the use of microscopic instruments that are inserted into the nose or upper lip and through the sphenoid sinus. I now take hydrocortisone, synthroid and desmopressin acetate. The hydrocortisone is needed to replace cortisol in the absence of my pituitary gland. I take the synthroid for hypothyroid and desmopressin acetate for diabetes insipidus, which is a result of losing the pituitary. I also wear a medical alert bracelet and carry a medical identification card in my purse.
Despite the surgeries, I was back at work on a limited basis within 4 months. In spite of how all of this may sound, I never once experienced any pain. I never even had headaches (as some Cushing's patients report).
According to my doctors, total recovery has been documented to take up to 3 years. Now, 14 months post surgery, I still experience muscle weakness, fatigue and dry skin, but I consider myself healthy.
I do get very cold easily, so I always make sure I have a sweater when I go out, and I had lost 30 pounds 2 months post-surgery because I had no appetite, but I've since gotten 10 back. Additionally, my insulin intake has gone from 105 units per day to 8 units and my blood pressure medication has been cut in half, which brings me within normal limits. I've lost my moon face and buffalo hump. As a bonus, I rarely have to shave my legs. (Thick, course hair is characteristic of Cushing's, but with the surgery comes normal conditions.)
As an SLP of more than 25 years, I have found some language deficits in myself due to the surgery. These deficits include word retrieval, memory and "language of confusion." This confusion is worse on some days than on others and is characterized by interchanging the beginning or ending consonants of single words such as saying, "ford" or "chord" but meaning "board." It's weird, and I recognize it as it is happening and am sometimes able to self-correct it most of the time. I also practice many word-retrieval exercises, puzzles and watch old movies (which I love) to write down the actors, scenes, dialogue, etc., I can identify.
My concentration and word retrieval are also getting better and, today, I would judge these language deficits within 95 percent of where I was presurgery, unless I am very fatigued and it's difficult to concentrate.
Relating To LPNs
I share this life experience with you and your fellow nurses because I want to implore you to be aware of your total patient. The root of someone's condition may not be what it appears to be. I was lucky because my Cushing's was originally suspected, not because of one individual characteristic but due to several seen together. I'm living proof that it can be cured.
Characteristics of Cushing's:
• Abdominal weight gain
• Poor concentration
• Poor short-term memory
• Excessive hair growth (women)
• Red, ruddy face and neck
• Extra fat around neck (buffalo hump on back of neck)
• Round face (moon face)
• Fatigue/muscle weakness
• Menstrual irregularity
• Stretch marks on abdomen/thighs (purple)
• Balding (women)
• Hip and shoulder weakness
• Swelling of feet/legs
• Excessive hunger
• Excessive thirst
• Frequent urination
(Not all characteristics are found in any one person.)