For Those Who Celebrate Easter
Posted on April 8, 2012 by MaryO
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Day Eight, Cushing’s Awareness Challenge
Posted on April 8, 2012 by MaryO
It’s Here!
Dr. Cushing was born in Cleveland Ohio. The fourth generation in his family to become a physician, he showed great promise at Harvard Medical School and in his residency at Johns Hopkins Hospital (1896 to 1900), where he learned cerebral surgery under William S. Halsted
After studying a year in Europe, he introduced the blood pressure sphygmomanometer to the U.S.A. He began a surgical practice in Baltimore while teaching at Johns Hopkins Hospital (1901 to 1911), and gained a national reputation for operations such as the removal of brain tumors. From 1912 until 1932 he was a professor of surgery at Harvard Medical School and surgeon in chief at Peter Bent Brigham Hospital in Boston, with time off during World War I to perform surgery for the U.S. forces in France; out of this experience came his major paper on wartime brain injuries (1918). In addition to his pioneering work in performing and teaching brain surgery, he was the reigning expert on the pituitary gland since his 1912 publication on the subject; later he discovered the condition of the pituitary now known as “Cushing’s disease“.
Today, April 8th, is Cushing’s Awareness Day. Please wear your Cushing’s ribbons, t-shirts, awareness bracelets or Cushing’s colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen.
And don’t just raise awareness on April 8. Any day is a good day to raise awareness.
Filed under: Cushing's | Tagged: awareness, Cushing's, Cushing's Awareness Day, Dr. Harvey Cushing | 1 Comment »
Day Seven, Cushing’s Awareness Challenge
Posted on April 7, 2012 by MaryO
Sleep. Naps. Fatigue. I still have them all. I wrote on my bio in 1987 after my pituitary surgery “I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.”
That seems to be changing back, at least on the weekends. Last weekend, both days, I took 7-hour naps each day and I woke up tired. That’s awfully close to taking a whole day off to sleep again.
In 2006, I flew to Chicago, IL for a Cushing’s weekend in Rockford. Someone else drove us to Lake Geneva, Wisconsin for the day. Too much travel, too Cushie, whatever, I was too tired to stay awake. I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead.
This sleeping thing really impacts my life. Between choir rehearsals, I come home for a 45-minute nap. Sometimes, during adult choir rehearsals, I start to nod off anyway.
I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.
Maybe now that I’m more than 5 years out from my kidney cancer I can go back on Growth Hormone again. My surgeon says he “thinks” it’s ok. I’m sort of afraid to ask my endo about it, though. I want to feel better and get the benefits of the GH again but I dont want any type of cancer again and I certainly can’t afford to lose another kidney.
I’m feeling so old and weary today…
Filed under: Cancer, Cushing's, growth hormone | Tagged: Cancer, Cushing's Awareness Challenge 2012, endocrinologist, fatigue, growth hormone, kidney cancer, MaryO, nap, pituitary, sleep, surgeon, surgery | 1 Comment »
Day Six, Cushing’s Awareness Challenge
Posted on April 6, 2012 by MaryO
People sometimes ask me how I found out I have Cushing’s. Theoretically, it was easy. In practice, it was very difficult.
In 1983 I came across a little article in the Ladies Home Journal which said “If you have these symptoms…”
I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.
After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors and all of them said was rejected each time.
Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.
In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“. According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.
The term derives from the aphorism “When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore. Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.”
So doctors typically go for the easily diagnosed, common diseases. Just because something is rare doesn’t mean that no one gets it. We shouldn’t be dismissed because we’re too hard to diagnose.
When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.
When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist. Fortunately, he ran a twenty-four hour urine test and really looked at me and listened to me. Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me. They packed me off to an endo where the process started again.
My final diagnosis was in October, 1987. Quite a long time to simply “…ask your doctor about Cushing’s”.
Looking back, I can see Cushing’s symptoms much earlier than 1983. But, that ‘s for a different post.
Filed under: Cushing's, Rare Diseases | Tagged: bleeding, Cushing's, Cushing's Awareness Challenge 2012, depression, MaryO, symptoms, weight, zebra | 2 Comments »
Remission of Cushing’s disease may improve body composition, reduce cardiovascular risk markers
Posted on April 5, 2012 by MaryO
Geer EB. J Clin Endocrin Metab.2012;doi:10.1210/jc.2011-3123.
Patients in remission of Cushing’s disease may experience decreased total fat and improved cardiovascular risk factors, according to data from a prospective study.
Researchers examined 14 participants (12 women, 2 men) with active Cushing’s disease before transsphenoidal surgery and 6 to 8 months after glucocorticoids (remission), using whole-body MRI to pinpoint patients’ lean and fat distributions. One patient required two transsphenoidal surgeries before entering remission.
Of the 14 participants, 13 had hypertension, which was confirmed by a resting blood pressure higher than 140/90 mm Hg or the use of antihypertensive medications. At follow-up, only three participants had persistent hypertension.
Most participants remained in the overweight (BMI >25 ) or obese (BMI >30) category.
Eliza B. Geer, MD, researcher for the division of endocrinology at the Mount Sinai School of Medicine, and colleagues, investigated the link between body composition and CV risk in the altered bodies of patients with Cushing’s disease.
According to the study, remission decreased visceral, pelvic bone marrow, subcutaneous (including trunk and limb) and total fat; waist circumference; and weight (P<.05). The researchers found that remission altered fat distribution, which resulted in decreased visceral/total fat (P=.04) and visceral fat/skeletal muscle ratios (P=.006). In addition, CV risk factors such as insulin resistance, leptin and total cholesterol decreased (P<.05).
“Prospective studies of CD [Cushing’s disease] are needed to understand possible associations between previous or persistent abnormalities in adipose tissue distribution and cardiovascular risk markers in patients successfully treated for CD [Cushing’s disease],” the researchers wrote.
Further studies are needed to examine the lack of change in adiponectin, C-reactive protein and other lipid measures.
Disclosure: The researchers report no relevant financial disclosures.
Cushing’s disease alters fat distribution, muscle mass, adipokine profile and increases cardiovascular risk factors (serum insulin, glucose, leptin, high-molecular-weight adiponectin, C-reactive protein and lipid profile). Even though only a small group of 14 patients were studied, this is difficult to overcome in a rare disease like this.
They demonstrate that even though disease remission reduced most fat depots, dramatically improving body composition abnormalities, not all CV risk markers normalized completely; namely, adiponectin, C-reactive protein, and some lipid measures did not change after control of hypercortisolism. Furthermore, a decrease in skeletal muscle also persisted. This is interesting since one of the main complaints in patients “successfully” treated for Cushing’s disease is tiredness and fatigability, which persist beyond 1 year after surgery. This limits the patient’s exercise capacity and negatively affects their everyday life and subjective feeling of well-being, impairing their health-related quality of life.
Susan M. Webb, MD, PhD
Professor, Department of Medicine/Endocrinology
CIBER-ER, Unit 747 on Pituitary Diseases Hospital de Sant Pau
Universitat Autònoma de Barcelona, Spain
From http://www.endocrinetoday.com/view.aspx?rid=96175
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