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Tammie (stjfs on the boards)...
STJFS on the boards writes... Hi- our local newspaper did a story on myself and cushings disease. I think they did a pretty good job. They don't have a website, so I'll copy/ paste it...
Medical Mystery Unveiled In Area Woman
By: Meghan Reinke
The Community View
With the advent of several T.V. shows dedicated to the inner workings of the medical profession, many of us are used to seeing medical mysteries unravel before our eyes in an hour during primetime television. Dr. House figures out the treatment for a perplexing disease only minutes before the patient expires, the doctors of Grey’s Anatomy argue about the cause of a man’s paralysis, and a cure is found for an epidemic disease that is spreading like wild fire through a Chicago school on ER. Though we have the ability to watch these works of fiction almost every night during the week, rarely do any of us imagine anything like that happening to us or our family. Unfortunately for one area woman, a medical mystery held her hostage for a good portion of last year, and it is her goal to spread the word about the rare maladies Cushing's syndrome and disease.
Tammie Schenk, of Shawano, began noticing changes to her petitely framed body a year and a half ago. Generally healthy, she thought that it was probably just the natural slowing of her metabolism as she grew older. “About winter of 2004, [I noticed] I had been gaining weight in kind of odd spots, like around my neck, my stomach and my face was getting fuller and fuller. I had other symptoms such as stretch marks, dark body hair growth, flushed red face, and insomnia. I thought ‘well, if this is the way I’m going to look and feel when I gain weight, okay, great,’ ” she explained with a sarcastic smile. “So I started working out and watching what I was eating, but I kept gaining weight and gaining weight and I was getting frustrated.” A few months later, Tammie’s blood pressure shot sky high, and it was then that her husband, a nurse, had a strong feeling that this wasn’t just a little weight gain and looked suspiciously like an endocrine disorder of some type. She visited the doctor and had tests done to check her cortisol levels. Though a normal person is usually at a level of 3.5 to 45, Tammie’s level was at a whopping 412. It was at that point that the mystery known as Cushing's syndrome and disease came to light for Tammie and her family.
Cushing's syndrome, according to www.Cushing's-help.com, is a hormonal disorder caused by lengthy exposure to high levels of cortisol, which is a hormone. It is rare, and generally affects 10 people per million each year, with people between the age of 20 and 50 most commonly affected. The increase of cortisol in the bloodstream causes symptoms such as upper body obesity, skin abnormalities like tags, frequent bruising, purplish pink stretch marks, severe fatigue, high blood pressure and high blood sugar. Anxiety and depression are also commonly associated with Cushing's syndrome.
Most cases of Cushing's syndrome are caused by pituitary adenomas, which are non-cancerous tumors of the pituitary gland that, in turn, secrete increased amounts of ACTH (adrenocorticotropin), which stimulates the adrenal glands. The glands then secrete more cortisol than needed due to the abnormal amounts of ACTH. When an adenoma is discovered, the syndrome is then diagnosed as a disease. Cushing's disease affects women five times more frequently than men.
Tammie learned she had Cushing's disease after a battery of tests and several visits with various doctors unveiled a tumor on her pituitary. She did a lot of research on doctors across the country, and ended up choosing a doctor in Portland, Oregon who had experience to back his expertise in the removal of such tumors. The tumor was removed on August 11, 2005, but after more tests, they realized there was still something affecting her levels. “After that first surgery they do what they call a crash. They took away my oral hydrocortisone to see what amount of cortisol my adrenal glands were producing. A successful surgery would’ve meant a very low cortisol level,” she said. “Well, my body was still producing a pretty good amount. So they knew that there was still tumor there.” Surgery number two took place on August 16, and finally after that, all levels were within normal range.
The battle is far from over for Tammie. Much like an alcoholic or drug addict goes through withdrawals in rehab, Tammie’s body is having to go through a slow withdrawal process for cortisol. “I have to take hydrocortisone to replace that until the adrenal glands start working again. Because the tumor was going haywire my adrenal glands shut off because they lost the massive amounts of pituitary hormone (ACTH) that they need to produce normal levels of cortisol. My adrenal glands aren’t used to that low level of cortisol so they haven’t “woken up” yet. So until they wake up I still have to take the hydrocortisone.”
Though on the road to recovery, the cortisol withdrawals have been intense and Tammie needs to cautious at all time. “I have to watch out for getting nauseous. If I throw up I have to take a hundred milligrams of hydrocortisone [to replace the loss]. If I throw up again, I have to go to the emergency room and have IVs of hydrocortisone.” When Tammie left the hospital she was taking 40 milligrams, three times a day. Now she is taking 20 milligrams one time a day and has finally been able to start losing weight, though it is now hard for her to focus during reading and other tasks that require quick eye movement due to dizziness and head pain. Chills and fatigue are other constants in Tammie’s life for the time being as her body readjusts.
And now that her body is on the upswing, Tammie patiently awaits the day when she can consider herself fully cured. She watches for signs that it’s coming back, and looks forward to reaching her milestones. Her doctor mentioned that after two years a patient can consider themselves in the “good” category, after 5 years they are probably pretty safe and after 10 years a patient can consider themselves 100% cured.
Tammie stated that www.cushings-help.com has been a great resource to her, considering how rare the disease is. There is a chat every Wednesday, and many people are available to answer questions for those interested. For more information about valuable resources regarding Cushing's, feel free to contact Tammie by e-mail at firstname.lastname@example.org.
Read Tammie's bio here.
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