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Everything posted by kellysue

  1. I was on low, low carb from 1/1/2000 and was diagnosed w/ a fatty liver in fall/2005 and 2006. I usually didn't make it to 25 grams of carbs in a day, so I don't know if that study is correct for everyone, but still interesting.
  2. If it's my skin cream, I'm buying a ticket to China to kick some non-Cushings' ass! I almost thought it was a joke at first, but I know Mary wouldn't do that. I read it 3 times. Since this stuff happened last year, it's changed my buying; I live is SF and there are a lot of Asian markets and there's a huge one down the street. No more soy sauce, no more green horseradish (can't remember the name), no more potstickers. I don't even buy garlic there. It's San Francisco, I just walk two more blocks and buy it from the Greek market!!! I love SF!
  3. I think it's doctors trying to get around the fact they have no idea why we get strange symptoms and they're unable to explain any of it. How can you explain the weird symptoms that are relieved after surgery - I had a couple of doozies. Post-BLA, I didn't have to urinate every 20 minutes for the first time in 15 years. The hair grew back on my head. It takes us years to convince them that something's wrong; they're sure not sympathetic to the horrible things we have to live with for years - easier to say we're crazy. Wait until everyone and their mother starts getting steroids cushings - we'll be hailed as pioners and we'll be able to write books with everything we've learned!
  4. I'd love to get a couple - they're a hoot! Kelly
  5. Thank you so much - I've been trying to figure out what was going on for months and thought it was some kind of weird depression. Apathy's much, much closer. Thanks much! Kelly
  6. Gina, That's a beautiful post and idea that you shared - thanks so much! If we know we have a place to go and it's ok to talk, it might help at least one person. There are so many parts of the disease that outsiders don't understand that can push a patient to the brink: the horrible physical changes, the pain, the never-ending tests, the idiot doctors, family and friends not understanding. It's a horrible thing. Kelly
  7. Thanks Mary - that was an inspirational article! (I dribbled part of my Big Mac on it when I printed it out, but it was good!)
  8. Wow! That was a fantastic article - thank you for posting it! Kelly
  9. The Everything Health Guide to Thyroid Disease: Professional Advice on Getting the Right Diagnosis, Managing Your Symptoms, And Feeling Great (Everything: Health and Fitness) by Theodore C., M.D., Ph.D. F. and Winnie Yu (Paperback - Dec 2006) Whoo - hoo! Just found it on Amazon and think I'll order it - will also check and see if I'm in it Kelly
  10. Gpd, that is exciting news!!! I'm imagining a long line of Cushie's jumping up and down waiting to get tested. That is such hopeful news. Thanks for sharing it! Kelly
  11. Hi Kristy, Hoping that you would see the post! Over my head, but knew you'd get it! Kelly
  12. Hi guys, Came across this and thought I'd post it. Kelly Mifepristone Orphan Drug Status for Cushing's Syndrome Secondary to ACTH Secretion in EU On July 27, the European Commission approved orphan drug status for mifepristone (made by Laboratoire HRA Pharma, France) in the treatment of Cushing's syndrome secondary to ectopic adrenocorticotrophic hormone (ACTH) secretion. The condition affects fewer than 5,000 individuals in the European Union (EU). The product acts as a reversible competitive antagonist at cortisol receptors, thereby decreasing the effects of elevated cortisol levels and improving long-term outcome. Mifepristone (made by HRA Pharma) was approved for this orphan drug indication by the U.S. Food and Drug Administration (FDA) in February 2005. Mifepristone was also granted traditional approval by the FDA in September 2000 for the medical termination of intrauterine pregnancies. http://www.medscape.com/viewarticle/512621
  13. Wow! Mary, that is fantastic - I had no idea that was possible! Thank you!!!
  14. Lynne! OMG! You'd think since I graduated from college that I could read the fine print and realize it's a sham! This is the best part of the boards (and I promise that I won't cash in my savings to buy magic wafers!) Kelly
  15. Yeah, it seemed too simple and neat and was ignoring all the other issues --- just got excited thinking that my 4 million problems could be solved w/ a simple wafer!
  16. Any opinions or ideas --- never heard of this before??? Healthbeat: Pituitary Tumor Wafer May 17, 2005 Jen Christensen Pituitary Gland The pituitary gland is a pea-sized gland located beneath the brain in an area above the nasal passages. It sits in a tiny space in the skull, called the sella turcica. The pituitary is the master gland of the body because it regulates most of the other glands in the body. The pituitary gland also produces some of the body’s important hormones. Growth hormone is used to regulate growth during childhood. Thyroid-stimulating hormone influences the growth of the thyroid gland and production of thyroid hormone, which regulates metabolism. Adenocorticotrophic hormone controls the growth of the adrenal glands and the production of steroid hormones. Melanocyte-stimulating hormone regulates the production of melanin, the pigment that gives skin its color. Prolactin is a hormone that works in conjunction with other hormones to stimulate the growth and development of mammary glands and the production of milk for nursing mothers. In women, luteinizing hormone and follicle-stimulating hormone regulate ovulation and the menstrual cycle. Pituitary Tumors Most pituitary tumors are benign and are classified as adenomas. Though they don’t spread, they can grow and press on surrounding tissue. If the tumor compresses the area of the optic nerve, vision can be affected. The tumor can also suppress production of pituitary hormones, or cause overproduction of certain hormones. Tumors that cause increased production of adenocorticotrophic hormone can cause Cushing’s disease. This condition leads to weight gain in the face, back of the neck and area of the collarbone, excessive growth of body hair, weakness and fatigue, easy bruising, purple stretch marks, muscle loss, menstrual irregularities, high blood pressure, diabetes and depression. Prolactin-producing tumors can cause milk production and cessation of menstruation in non-pregnant women and impotence in men. Growth hormone-producing tumors can cause excessive growth of the face or body. Since pituitary tumors are usually benign, incidence is not included in cancer registries. However, researchers say they are the third most common type of intracranial tumor. If the tumors don’t cause symptoms, patients may not even be aware of their presence. One study estimates pituitary tumors occur in about 16.7 percent of the population. Treating Pituitary Tumors Surgery is the main form of treatment for pituitary tumors. In many cases, a surgeon can access the tumor by making an incision through the nose and sinuses (a transsphenoidal approach). Sometimes it is necessary to make an incision through the skull to get at the tumor. Radiation can also be used to shrink the tumor. The treatment may be given alone or in conjunction with surgery. Some pituitary tumors can be controlled with medications that stop secretion of excess hormones. Wafer Treatment Research suggests as many as 20 percent of pituitary tumors come back. And sometimes these recurring tumors grow very quickly. Researchers at the University of Virginia are using another treatment to try to keep aggressive pituitary tumors from recurring. After the tumor is removed, surgeons place pieces of a GLIADEL® wafer into the site of the pituitary gland (the sella turcica). The wafer pieces contain the anticancer drug, bischloroethyl-nitrosourea (BCNU, or carmustine). Implantation of the GLIADEL wafer serves two important purposes. First, the drug is released into the area of the tumor, hopefully killing remaining tumor cells. Second, the medication is released over time. The slow-release bathes the area with the anticancer drug for a longer period of time. In a Phase I study involving ten patients, 60 percent experienced good control over tumor growth. Researchers say the study is too small to say if GLIADEL is really an effective treatment for pituitary tumors. Investigators hope to eventually do a larger trial to study the effectiveness of the wafer for pituitary tumors. Currently, GLIADEL is approved for treatment of certain malignant brain tumors. AUDIENCE INQUIRY For information about pituitary tumors: American Cancer Society, http://www.cancer.org Pituitary Network Association, http://www.pituitary.com For information on GLIADEL® - http://www.gliadel.com http://www.hoinews.com/news/features/4/1575112.html
  17. Dear Moi, You did a beautiful job on that letter! I loved it! Good going! Kelly
  18. Our Health Center sent out a list of people who should come in for the flu shot and I was surprised to see Cushing's listed as one of the metabolic diseases (also diabetes, and Addison's) that meet the criteria. Just got the shot this morning and feel relieved - like whoof, one less thing to worry about during the holidays.
  19. Direct Link Between Stress and AggressionMad and Irritated? Check Your Stress Level Research shows that stress and aggression can be a damaging cycle.PhotoDisc Oct. 13, 2004 — Scientists have found biological evidence that stress and aggression feed off of each other, contributing to a "cycle of violence" that can be tragic. When we are under stress, we are more likely to fly off the handle, and when we fly off the handle, that increases our level of stress. It's a mutual back-scratching phenomenon, and new research shows that there is a biochemical basis for this potentially deadly spiral of stress and aggression. Researchers in The Netherlands and Hungary found the biological connection in 53 rats, so it's not yet been demonstrated in humans, but that connection has held up in similar research in the past. They experimented with rats because it's possible to implant electrodes in the brain to turn on and off the stress sensors, and of course that sort of thing would be frowned upon if the subjects were humans. Opening the Flood Gates The researchers found that when they turned on the electrodes to convince the rats that they were in a stressful situation, the level of corticosterone soared upward in their bloodstreams. That's the major hormone produced by bodies — both rats and humans — to help us get through stressful situations. What happened next was very revealing. The rats became very aggressive, even attacking other rats that had been drugged to the point that they were almost lifeless. That, in turn, stimulated the attacking rats to produce more of the hormone, thus plunging them into a hopeless cycle of stress and violence. The researchers found they could turn the cycle on and off just by regulating the hormone, and the rats could care less that their opponents were under "profound sedation," according to a report on their study in the October issue of "Behavioral Neuroscience," which is published by the American Psychological Association. It gets worse. The stressed rats didn't even need another rat to get riled up. "The confrontation with an opponent apparently is not required," they report.
  20. Mary, You did a great job - i love the new format of the boards. It's so easy to read. Kelly Sue
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