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Who goes into an MRI wishing for a brain tumor? Well, you do if you are looking for a Cushings diagnosis. If not diagnosed and treated it is fatal due from the disease and symptoms that result from Cushings. 
It is believed that I had my 4x5x6 mm tumor on my pituitary gland for possibly 15 years. The tumor was an ACTH producing tumor that wrecked havoc on my entire endocrine system, especially from the over production of cortisol by my adrenal glands.
The progression of my disease started out small and seemed insignificant. The time I dropped a book out of my hand, the lone facial hair that appeared out of nowhere, and the missed periods for 11 months. To the more serious diagnoses of PCOS, essential tremor, hypertension, obesity, insomnia, migraines, fatigue, severe joint pain, depression and anxiety, psoriasis, rosacea, adult acne and Type II diabetes being insulin dependent.
Each of my diseases seemed to baffle the general family practitioner. I only saw specialists. I saw an internist, endocrinologist and dermatologist regularly and occasionally a cardiologist, gynecologist and nutritionist. I don’t want to say that I was misdiagnosed by any of them because I truly had these diseases. However, no one saw the whole picture.
Even with treatment I would not get better and could barely control diabetes and hypertension on medication. Before surgery I was on three different types of insulin and on the maximum dosage of oral medication for diabetes. I still was unable to control my blood sugars. My weight was not significantly affected by diet and exercise. I gained 30 pounds in one month and another 20 or so at another time in a few weeks. Ever hear of a person who claims they cannot lose weight or gain weight when they diet and exercise? That was me. At one point I went to a personal trainer three times a week, swam and walked daily and had a 1000-1200 calorie diet for 6 months and gained four pounds. I knew something was very wrong.
My female issues resulted in a full hysterectomy in 2002. I was fortunate to have had my three children with no fertility issues. I began seeing a gynecologist for hormonal issues and was diagnosed with early onset of menopause at age 25. It changed into PCOS and progressively got worse with hormonal issues. The hysterectomy resolved the majority of my symptoms.
 My appearance was what is called Cushingoid. I had developed a moon face, buffalo hump, rosacea, acne, thinning hair on my head, extra male patterned facial hair, skinny legs and arms with muscle loss, easy bruising, stretch marks on my stomach and legs, extra hair on the backs of my legs and buttocks, psoriasis on the majority of my body and the centralized obesity. Internally, I was suffering as well. I had uncontrolled blood sugars, blood pressure, and cholesterol. I had a resting heart rate of 130 and a body temperature of 97. Until tested for Cushings I was unaware of my high levels of cortisol running through my system.
Cushings is EXHAUSTING. It is a disease that will make you question yourself, your sanity and the medical profession. I encourage you to be patient with yourself and your doctors. Most general physicians will only have one “cushie” in their entire careers and some may not even know it. They treat the presenting problem and send us to specialists when we stump them.
There are many obstacles in the diagnosis and treatment of Cushings. The symptoms and diseases can all be legitimate. It takes looking at all of them and finding the etiology. I was fortunate to be seen by a new endocrinologist who mentioned Cushings within the first five minutes of our appointment. He was even unsure how to test for this rare disease. I was then connected to Dr. William Ludlam, a neuroendocrinologist who specializes in Cushings. He has an extensive testing protocol in which he is able to diagnose Cushings and provide the delicate aftercare treatment. My surgeon, Dr. Marc Mayberg performed a transphenoidal adenomectomy (through the nose) on
October 16, 2007 at the
Swedish
Hospital in
Seattle,
Washington. The Swedish Neuroscience Institute is one of the only hospitals that can do this delicate surgery.
 I am being treated with hydrocortisone 20 mg a day which is the therapeutic dose that replicated the physiological amount a normal person produces daily until my adrenal glands wake up and begin functioning on their own. I am off almost all of the 13 pre-surgery medications. I no longer have my essential tremor, daily headaches, high blood pressure or lipids, excessive body hair, acne or rosacea. My blood sugars and heart rate are coming down, my hair is thickening on my head and I have lost 60 pounds without diet or exercise. My prognosis is good for a cure. I feel blessed for every day without Cushings. A full recovery can take years.
I encourage you to seek out support with other people suffering with this rare endocrine disorder. The MAGIC Foundation is a place where you can connect with others that are going through the same frustrations living with this disease. As Division Consultant I will try my best to be there for you on your journey, no matter if you are just starting to test or are on the other side of recovery.
Leave a message with MAGIC to reach me by calling (708) 383-0808 or email ContactUs@magicfoundation.org and put Stacey in the Subject. I will get back with you!
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