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ADDflower

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About ADDflower

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    Runs with scissors.

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    ADDflower
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    http://messpiles.blogspot.com/
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    Female
  • Interests
    ...it's more like things I like to do but can't seem to find the engery to do anymore...
    horses, miniatures (and mircominiatures), learning to knit, crochet, reading, learning to sew, machine embroidery, wishing I had the energy to make a mess making something.

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  1. wow.. has someone attempted to find contact information for Sunil Arya (the developer)? Apparently he/she was the team lead of the group at The University of South Florida in Tampa that developed this? edited to add: if they can develop this for saliva perhaps they can alter the sensor to work like a glucometer and use blood.
  2. This is interesting... since my pituitary surgery I've developed psorisis on my eyelids, eyebrows, sides of my nose and worsening bits in my scalp and my left elbow. I wonder if there is any relation?
  3. I took a look at the link you provided and the study article (which was rejected for publication, although that doesn't necessarily mean anything... the doctor writes that he's including peer reviews which he failed to do) has nothing to do with NSAIDs (which is what you are taking) but antivirals. SO... I realllllly don't understand.
  4. Your doctor is patently wrong because I personally knew a woman that had an inoperable brain tumor that was in a study, it was the study that she was in where they discovered that it blocked cortisol. As a result she had to take large doses of steroids that gave her exogenous Cushing's. There's no way that Linda would have had Cushing's from replacement steroids if what your doctor said was correct. She was an amazing woman and I miss her (she eventually died from the tumor): http://www.projectdignity.org/remembering%20linda.htm
  5. Hi Chi, I am one of the board moderators. We do have a section of the board for Research and News Items and I feel like that is where this post belongs. Because of the unique nature of your post (thanks for thinking of us!) I'm going to put a hold on posting replies to your message until I can contact another moderator or two and make a decision about where this information should be. At that time we will reopen comments. I hope you have reviewed our TOS Board Rules, but if you have not please take the chance to have a look, they're not too long. If any board members are interested in this study I suggest that they visit the website or use the contact information provided in Chi's message.
  6. I've actually gotten a number of messages from people wanting to know if they're the reason for this message... no one is the "reason". The board adminstrators have been busy and/or sick themselves and have not been on top of things. We didn't want to just start out of the blue enforcing rules that people hadn't looked at for a while. In fact, this will probably become a regular reminder every so often. So please... don't worry about anything that happened "before" because we're starting fresh with today. Hugs to everyone!
  7. I went and got definitions from NetLingo I hope that helps...
  8. For some time now we have been very lax about enforcing the TOS, a.k.a. Rules of the Road, set out for the use of this board. If you haven?t read the rules lately I am here to remind you to take a look at them Board Rules and refresh your memory. Go take a look? I?ll wait I?m going to address a few rules regarding posting specifically. The first is the ?bumping? of posts. This has never been permitted on this board, but it gets done often. I know first hand how frustrating it is, especially if you?re using the ?view new posts? feature of the board, to not get replies to a post you?ve made and to watch your post go further down the list where it might never get read by anyone. Any post that just says ?bumping this up? or something similar will simply be deleted. Use common sense with this. If you come across an older post that you think is relevant to a current issue post to the current thread with a link to the older post. First offenders will get a warning, but repeatedly doing so will result in your account being placed on a probationary status and if you really can?t stop yourself we will escort you to the door. The same actions will be taken for failure to follow any of the guidelines set out in the TOS (did you read them yet?). If violations of the guidelines are felt to be severe enough you may not get a second chance. I do not know any other way to say this: This is a support community. Behavior that is not supportive of a community that cares for and is welcoming to its members will result in your no longer being a part of this community. The support boards are here to provide a source of information and support for all of us. The intention here is to create a feeling of community. While we realize that in any community there will be disagreements from time to time, I want to remind all of you that we have community leaders whose job it is to get involved when this happens. They are here to smooth out any bumps in the road. Truth be told this board very rarely has issues. But, when we do, it often affects many of us deeply because of our unique health circumstances. We know it?ll happen from time to time, and we want to be able to get involved before it becomes a crisis. That?s where you come in. Each and every post on this board has a button at the bottom left that allows you to bring that post to the attention of the moderators. If ever you are concerned about a post we want you to use that button. That is why we have moderators, to help maintain the community. But moderators are not all-seeing. This is an active board and we need you to help us. If you have any questions about the TOS please feel free to ask them here. I will do my best to get you an answer.
  9. I sent an e-mail asking if she'd do an interview with MaryO and Robin for our radio show.
  10. Come see the post by the same title in the Fundraising section. Fun Raiser Topic Link
  11. While not about cushing's I thought that some of the information in this article was interesting... http://www.npr.org/templates/story/story.p...;cc=es-20090118 Morning Edition, January 8, 2009 ? The holiday season is pretty much over. But is your body over the holiday season? For many people, indulging during these food-filled celebrations can set the stage for routine overeating. The problem, some doctors and researchers say, is that overeating causes biological changes in the body that can lead to more food cravings and cause your stomach to send mixed signals about when it's actually full. As the years go by, those holiday pounds add up. Dr. Rita Redberg, a cardiologist at the University of California at San Francisco, says each January she sees many patients lugging around an extra five pounds. Or more. "We'll have a very earnest talk in October about weight loss," she says, "and then the visit in January after the holidays is generally a weight gain. And I see that commonly in my patients." Year after year, those few holiday pounds can add up to 15, 20, even 30 pounds, making it all the more difficult to lose extra weight, Redberg says. "People get discouraged when they realize year after year they've gained weight." Overeating May Change Body Clock In mice, studies of the biological clock ? an innate mechanism that tells you when to sleep and when to eat ? indicate that when they are overfed, their body clocks change and gear them toward more overeating. "If mice eat a high-fat diet, they actually wake up during what is nighttime for them and eat," says Dr. Joe Bass, a Northwestern University endocrinologist and molecular biologist who has published numerous studies about the body clock and mice. "It would be as if you were waking up every night during holiday season and eating all the sweets in your refrigerator." Bass found that among the mice who got fat, the weight gain resulted directly from food consumed during what would normally be their sleeping time. This suggests that people who eat less fat will sleep better, and they are not likely to engage in nighttime bingeing, he says. A Vicious Cycle Overeating "sets your body chemistry sort of into red alert," says Dr. Sasha Stiles, a family physician who specializes in obesity at Tufts Medical Center. "The kinds of hormone and metabolic processes that normally will try to metabolize food will go into overdrive to make sure they get rid of this huge food load," Stiles explains. This means that much of what you eat will be stored as fat rather than converted into healthy byproducts. Excess food can trigger an unfortunate cycle: The pancreas produces extra insulin to process the sugar load and remove it from the bloodstream. It doesn't stop producing insulin until the brain senses that blood sugar levels are safe. But by the time the brain stops insulin production, often too much sugar is removed. Low blood sugar can make you feel tired, dizzy, nauseous, even depressed ? a condition often remedied by eating more sugar and more carbohydrates. This feeling of low blood sugar sends many people after more carbohydrates, says Stiles, and they go for high-sugar foods to bring their blood sugar back up to normal and make them feel better. Sending Mixed Messages This cycle of overeating can lead to a yo-yo effect. If you consistently overeat, you'll trigger changes in your stomach, the doctor says. The neurological tissue at the top of the stomach, which signals the brain that the stomach is full, starts to malfunction. "When you overeat time and time again, this electrical conduit pathway gets tired and it doesn't tell your brain that you're full anymore," says Stiles. "It may send abnormal signals and you may not even realize you're full." If you drink lots of icy beverages with your food, the mixed messages to your body only worsen, she says. "When you drink cold liquids, your stomach will start contracting and it will massage the food that will again quickly leave [the] stomach to the rest of the gastrointestinal track." This means your stomach will be empty sooner than normal, and you will be hungrier sooner.
  12. http://www.endocrinetoday.com/view.aspx?rid=33057 The difficulties of Cushing?s syndrome Diagnosing and treating Cushing?s syndrome is sometimes just as difficult as it was 70 years ago. For as long as it has been described, Cushing?s syndrome has presented physicians with a problem. Harvey Cushing first described it in 1932, and the diagnosis, differential diagnosis and treatment of Cushing?s have remained a major challenge for endocrinologists ever since. Though uncommon, it is difficult to consider Cushing?s syndrome a rare occurrence. New research has shown Cushing?s syndrome to have a substantially higher prevalence than previously thought. Unexpected endogenous hypercortisolism may occur in 0.5% to 1% of patients with hypertension, 2% to 3% with poorly controlled diabetes, 6% to 9% with incidental adrenal masses and 11% with osteoporosis and vertebral fractures. ?We are gaining an appreciation that Cushing?s is more common than it was once believed to be,? said Mary Ruppe, MD, endocrinologist at the University of Texas Health Science Center at Houston, and program committee chair of the Women in Endocrinology organization. ?This fact points to the need for data regarding the value of the different diagnostic approaches and for data regarding treatment/outcomes in populations with Cushing?s.? As most of the characteristics of Cushing?s are common in the general population, including obesity, depression and hypertension, it is extremely difficult for endocrinologists to decide on who should be screened for the disorder. A recent clinical review by Hershel Raff, PhD, and James W. Findling, MD, noted that as the number of patients in these high-risk groups continues to increase, the need for a sensitive and specific diagnostic test for Cushing?s syndrome has become paramount. The three most commonly performed diagnostic studies for Cushing?s syndrome ? urine-free cortisol, low-dose dexamethasone suppression test and the nocturnal salivary cortisol ? are also not without hurdles. All three have been shown to produce false positives and false negatives. Approximately 80% of patients with Cushing?s syndrome have an adrenocorticotropic-secreting neoplasm from a pituitary tumor (Cushing?s disease) or a nonpituitary neoplasm, and the treatment of Cushing?s disease remains challenging for both endocrinologists and neurosurgeons as well. Transsphenoidal surgery is currently the standard treatment of choice in patients, but achieving surgical remission has been difficult as well. ?Cushing?s syndrome is a very rare but important diagnosis for the patient and endocrinologist. Confirming the diagnosis may be challenging, and before embarking on a costly set of tests, the endocrinologist should be reasonably assured that the patient indeed requires diagnostic exclusion by rigorous screening methods,? said Shlomo Melmed, MD, senior vice president of Academic Affairs at Cedars Sinai Medical Center, Los Angeles, and an Endocrine Today editorial board member. With more than 7.5 decades of research since Dr. Cushing?s discovery, what are the best methods of diagnosis and treatment for Cushing?s syndrome? Endocrine Today talked with leading researchers in the field to uncover the current trends in Cushing?s syndrome treatment. Screening process Laurence Katznelson, MD, associate professor of medicine and neurosurgery at Stanford University, and medical director of the pituitary program at Stanford Hospital and Clinics, explained to Endocrine Today the difficulty of deciding who should be screened for Cushing?s syndrome. For instance, although the syndrome is associated with multiple comorbidities, including obesity, hypertension and depression, endocrinologists should be prepared to delve a little deeper into the symptoms to see if they warrant a screening test. ?The presence of Cushing?s syndrome should be considered if these medical conditions are present, though diagnostic testing should be performed only in subjects who have signs favoring Cushing?s, such as demonstration of objective proximal weakness, spontaneous ecchymoses and violaceous striae,? Katznelson said. ?For example, central obesity with supraclavicular and dorsicervical fat pads would favor a diagnosis of Cushing?s syndrome, in contrast to the presence of generalized obesity,? he said. Raff and Findling noted in a recent clinical review that endogenous cortisol excess also leads to fairly specific catabolic effects ? including the thinning of the skin with easy bruising, abdominal striae, poor wound healing, immune suppression, rib fractures, hirsutism in women, acne and muscle wasting leading to proximal muscle weakness. ?There is no clear guideline,? said Roberto Salvatori, MD, associate professor of medicine in the division of endocrinology at Johns Hopkins University School of Medicine. ?You need to keep your mind open.? ?Sometimes Cushing?s is obvious. Sometimes, when it is mild, it may not be diagnosed for many years. One must screen a lot of patients to find one with Cushing?s. However, anytime a physician thinks about the possibility of a patient having the disease, work-up should be initiated,? he said. Testing options Opinions varied when Endocrine Today asked researchers which of the three tests for Cushing?s syndrome was most reliable. ?No test is 100% sensitive or specific,? Salvatori said. ?I always use two, sometimes three, screening tests.? However, Salvatori noted he feels the night-time salivary cortisol test is the most reliable and easy to obtain. Raff and Findling described the measurement of free cortisol in a 24-hour urine collection as being long considered the gold standard for the diagnosis of endogenous hypercortisolism. The test relies on the concept that as daily production of cortisol is increased, the free cortisol filtered and not reabsorbed or metabolized in the kidneys will be increased. They noted that current research has shown that many patients with mild Cushing?s syndrome do not have elevations of urine-free cortisol, ?making it a poor screening test for this condition.? The low-dose dexamethasone suppression test relies on the concept that the correct dose of dexamethasone will suppress ACTH, and cortisol will release in normal patients while patients with corticotroph adenomas will not suppress below a specified cut off. Raff and Findling noted that because of the significant variability of the biological behavior of corticotroph adenomas, research has shown that neither the overnight 1-mg dexamethasone suppression test nor the two-day low-dose dexamethasone suppression test appears to be reliable using the standard cutoffs for serum cortisol. According to Raff and Findling, there is no diagnostic test used in the evaluation of Cushing?s syndrome that performs better than the late night/midnight salivary cortisol method. The concept is based on the fact that patients with mild Cushing?s syndrome fail to decrease cortisol secretion to its nadir at night. However, they still acknowledged that many factors, such as stress, sleep disturbances and psycho-neuroendocrine may falsely elevate nocturnal cortisol secretion. ?Because each of these tests has associated false positives and negatives, a combination of these tests is often necessary for a valid diagnosis,? Katznelson said. ?In the end, these tests need to be considered in the context of a history and physical examination that favors this diagnosis.? Lynette Nieman, MD, associate director of the Intramural Endocrinology Training Program at the NIH, agreed. ?Of the three recommended tests, each is useful in certain conditions,? she said. ?I try to stress that the testing should be individualized since some tests are likely to be falsely positive in some situations, eg, a woman on birth control pills is likely to have a high corticosteriod-binding globulin, which might elevate serum cortisol.? Ruppe said the choice between the tests should be based on patient characteristics that will allow for adequate collection of each sample. ?For instance, the use of a late-night salivary cortisol measurement would be suboptimal in an individual who works the third shift and may not have an intact circadian rhythm, or the choice of a 24-hour urinary free cortisol may be suboptimal in an individual with urinary frequency or urinary incontinence.? Ruppe also noted that one possible improvement would be to improve standardization of the assays across different labs. ?Since there is no standardization, the quality of the performance of the assay can vary across different facilities and centers,? she said. Petrosol sinus sampling Another controversial topic in the field is whether or not the inferior petrosol sinus should be sampled for an ACTH gradient to distinguish between Cushing?s disease and occult ectopic ACTH syndrome. The invasive procedure has proven to be relatively safe when performed by experienced radiologists, but not all medical centers have the capability. A woman with mild hypercortisolism, a normal or slightly elevated plasma ACTH and normokalemia has an approximately 95% likelihood of having Cushing?s disease before any differential diagnostic testing is performed, according to Raff and Findling. In contrast, a male patient with prodigious hypercortisolism of rapid onset, hypokalemia and marked elevations of plasma ACTH may be more likely to have an occult ectopic ACTH-secreting tumor. About half of patients with ACTH-secreting microadenomas are estimated to have a normal pituitary MRI. In such situations, it is important to perform further testing, particularly an inferior petrosal sinus catheterization, to discern the presence of an ectopic ACTH-producing lesion, according to Katznelson. ?Some people would say that every patient should have it because it is the one best test for the differential diagnosis of ACTH-dependent Cushing?s syndrome,? Nieman said. ?However, patients in whom data strongly suggest Cushing?s disease might forego it.? ?In a young woman with an MRI with a definitive adenoma and high-dose dexamethasone test showing less than 60% suppression, it is reasonable to proceed with surgery,? Salvatori said. ?But even the International Prostate Symptom Score is not 100% sensitive or specific.? Raff said that he disagrees with the high-dose dexamethasone test. Transsphenoidal surgery Currently, transsphenoidal surgery is the primary treatment of Cushing?s disease associated with an ACTH-secreting pituitary tumor. According to recent studies, remission rates after transsphenoidal pituitary microsurgery range from 42% to 86%. Raff told Endocrine Today that the most important treatment recommendation that an endocrinologist makes to a patient with Cushing?s disease is referral to a neurosurgeon with extensive experience. ?Referral to a neurosurgeon who is highly experienced in this procedure is critical,? Katznelson agreed. He noted that there have been studies demonstrating that both the degree of tumor bulk resection and rates of biochemical remission are increased for all types of pituitary tumors when the surgery is performed by a neurosurgeon with extensive experience in endonasal pituitary surgery. ?In Cushing?s disease, this is especially true,? Katznelson said. ?Because the tumors in this disorder are often small, if not microscopic, the surgical strategy may require dissection through the gland. In inexperienced hands, this may result in higher rates of hypopituitarism and lower rates of biochemical cure,? Katznelson said. ?There is no doubt that the surgeon?s experience influences the success rate,? Nieman said. Constantine Stratakis, MD, with the National Institute of Child Health and Human Development, said he agreed, and stressed the importance of confirmation of diagnosis of Cushing?s syndrome prior to a referral to a neurosurgeon. ?There is nothing worse than an inexperienced surgeon operating on a patient with Cushing?s or a surgeon operating on a patient who does not have a firm diagnosis of Cushing?s syndrome,? Stratakis said. ?Surgery offers a reasonable chance for cure in the hands of an experienced neurosurgeon,? said Amir Hamrahian, MD, a staff physician at the Endocrinology Institute at the Cleveland Clinic. ?We are currently involved in two studies looking at new medications for medical treatment of patients with Cushing?s syndrome. However, surgery is still the best initial approach for those not cured,? Hamrahian said. The future ?Medications are the future for patients with inoperable, recurrent Cushing?s syndrome,? Stratakis said, referring to pasireotide (SOM230), a somatostatin analog. He was part of a study in 2006 examining the in vitro effects of SOM230 on cell proliferation in human corticotroph tumors. Researchers found SOM230 significantly suppressed cell proliferation and ACTH secretion in primary cultures of human corticotroph tumors. They concluded that SOM230 may have a role in the medical therapy of Cushing?s disease. Raff said he believes that clinical trials in patients with Cushing?s disease who used SOM230 were not particularly successful. Anne Klibanski, MD, director of the neuroendocrine clinical center at Massachusetts General Hospital and primary investigator of the study, commented that in vitro studies play a critical role in assessing novel targeted pituitary tumor therapies. It is only in rigorous clinical trials that the overall efficacy and risks of such therapies can be established, she suggested. ?Microsurgical improvements will also be significant, but the major problem right now is the number of patients who are left untreated with recurrent disease,? Stratakis said. ?For them, there are very few options other than irradiation, so innovative medical treatments with molecularly designed compounds or targeted to specific receptors and/or functions of the pituitary are the most important advances that I see coming in the near future,? Stratakis said. According to James Liu, MD, assistant professor of neurologic surgery at Northwestern University Feinberg School of Medicine in Evanston, Ill., the future appears bright in the battle against Cushing?s. ?Technical advances in surgery including endoscopic pituitary surgery and pseudocapsular dissection can improve surgical outcomes,? Liu said. Katznelson said he hopes the future will bring improved diagnostic strategies important for detecting true Cushing?s syndrome in the presence of multiple comorbidities. He noted that the ongoing research studies involving innovative medical therapeutic strategies that target the corticotroph adenoma itself, or block the effects of cortisol in the periphery, should bring new treatment options in the future. ?These studies will hopefully lead to novel medical options for this syndrome,? Katznelson said. ?There have been significant advances in surgery, particularly with the development of minimally invasive, endoscopic surgery that has resulted in both improved biochemical outcomes and patient tolerability.? ? by Angelo Milone
  13. I will try. Tumors that cause Cushing's Syndrome tend to be covered with receptors of these two types. Think of receptors like a puzzle or a block sorter, some things fit, some things don't and other things fit mostly (but aren't the right part). They name the receptors based on what sticks best in them or activates them. I think this is pretty straight forward, because they've learned about the presence of these receptors they're studying them to see if they can trick them. this is a description of the type of receptors. sticking something into the receptors seems to make the tumors stop releasing ACTH, at least in a petri dish, when using cells that have been harvested directly from the tumor. Using both chemicals at the same time seems to work best in people tested. Mentioning another thing that worked... the sst2-preferring compound refers to the type of receptor that the chemical binds to. This says that despite the fact that these things seem to work they think that the usefulness of the treatment will be limited since most people get better from surgery alone. **** I hope that helps... (and that I didn't mess it up)
  14. Gee... that sounds like a lot of "us" on the board these days... I wish some of these doctors would come ask people from this board to volunteer medical records for their studies. I can't think of too many that would say no.
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