MaryO's posts with tag: cushing's disease
| Start: | Mar 27, '08 7:30p | | Location: | http://www.blogtalkradio.com/CushingsHelp |
Monica (Monicaroni) and Crystal (Vinesqueen), March 27, 2008. The Call-In number is (646) 200-0162. Crystal and Monica went through every step of their Cushing's journey together--tested together, had surgeries the same days, and have become best friends because of it. Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed. Since there was no post-op crash, she also had a BLA in December 2006. Both surgeries were in Seattle. She is now free of Cushing's and am on the road to recovery! Monica is a professional violinist. From Monica's bio Crystal had pituitary surgery surgery 11/06 followed by a BLA 12/06. She also had a sinus excavation 2/06 and sinus surgery 5/07. Her last surgery was an internal hernia repair 8/07 Her blog is available at http://vinesqueen.blogspot.com/
| Start: | Jan 10, '08 6:30p | | Location: | http://www.blogtalkradio.com/CushingsHelp |
Thanks to the success of last night's first Voice Chats, we will be having them every Thursday night through January at 6:30 PM eastern. There is a call-in number if you want to share with the hostess and, if you can't make it at that time, archives will be available.
Robin (Staticnrg) explains that diurnal variation is one of the ways to diagnose Cushing's. It's typical of those of us who have Cushing's.
Robin says "If you have pseudo-Cushing's, this variation doesn't happen. A typical/normal person has their highest cortisol around 8 a.m. and it goes down incrementally until it is around zero at midnight. This is true of a person with pseudo Cushing's, too. A person with Cushing's Disease/Syndrome will have the variation shown in the link above. It's important to have this measured. The easiest way to find out is to have late-night serum cortisol measurements (around 11 p.m.) to see what it is at that time of night. If you have elevated late-night cortisols, it indicates Cushing's Syndrome/Disease. One test in the a.m. will not tell you enough information.
Stress affects everyone's cortisol. But elevated cortisol over a period of time is due to something other than "stress". And it hurts your body. Even it is intermittent (cyclical), it is very damaging, but harder to diagnose.
I hope you will go for more testing. I believe you need to find a doctor who will test 8 a.m. cortisol levels and late-night cortisol levels, preferably by both salivary and serum tests. Also, high Urinary Free Cortisol (UFC) levels are the "gold-standard" for Cushing's and if high, are very indicative. However, many of us don't have high UFC's but do have high salivary and serum levels. You need MUCH more testing to determine if you have Cushing's and to determine if your diurnal rhythm is out-of-whack!"
Surgery could cure rare Cushing's diseaseStory by JessicaLovell (Contact) 9:15 p.m. Saturday, July 22, 2006 This video requires the free QuickTime 7 plug-in. Download: Cushing’s disease brought four women together for what they fondly refer to as their “Cushie Party.” “I don’t know about you guys, but my family didn’t even believe me,” Jaimie Augustine***, Cushing’s patient, said. “You don’t gain 70 pounds in 7 months and have something not be wrong.” Cushing’s disease is caused by a rare tumor in the pituitary gland. The tumor itself is not the problem, but it causes the body to produce too muchof the hormone cortisol. It’s the excess cortisol that wreaks havoc on thebody. “I started having hair growth on my chin, and on my arms,” Augustine said. “I got purple stretch marks on my stomach.” It didn’t matter if Augustine ate as little as a thousand calories a day, she still gained 100 pounds. It took five years before Jaimie’s doctors pieced together her symptoms and treated her for Cushing’s. “Most centers that deal with this would accept that the first line oftreatment is pituitary surgery, brain surgery,” Dr. William Ludlam, endocrinologist, said. During surgery, doctors remove the tumor on the pituitary gland. “It’s still actually a difficult surgery, because these tumors are typically very liquidy, soft tumors and can ooze and go places,” Dr. Ludlam said. Augustine’s surgery was a success, and she began to lose weight after doctors removed the tumor. While Augustine said she can’t wait to have her body back, she admitted Cushing’s gave her a different perspective on life. More Information Dr. Ludlam cautions that pituitary surgery works dramatically for some patients, but not for all. If you have Cushing’s, or think you have symptoms, you can find out more information on the disease, or find support near you. *** Message Board Members. The person sitting next to Jaimie against the head board is Kristin (lookingforanswers), Amy (kalimae) is the blonde and the one in the yellow top is Krystine. More about Dr. William Ludlam
Link: http://www.cushings-help.comThis site provides information, support, RSS feeds, news, and education for people with Cushing's or other endocrine problems, their friends and families. Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of cortisol. Cushing's is a debilitating disease which causes the overproduction of cortisol, the substance that regulates blood pressure, and the metabolism of proteins, carbohydrates and fats. Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. It can be caused by a tumor of the pituitary gland, adrenal gland, elsewhere in the body (ectopic) or by excessive steroid use.
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