MaryO

Kind of reminds me of this article from Men's Health Magazine http://www.cushings-help.com/youd-rather.htm I know that all they say is true, but I'm not (always!) sure that I'd rather be dead.

http://www.seacoastonline.com/news/1130200...shings-n29.html 11-30-2006 'The ugly disease' By Toby Hatchett features@seacoastonline.com When Fedela Vincent, 68, of Rye, was diagnosed with Cushing's disease, she was relieved, almost happy. After more than three years, she knew what was wrong with her. Vincent had spent years trying to figure out what was wrong with her, what was happening to her and her body. A petite woman, of 5 feet, she had always been trim and fit. She ate right, worked out at the gym and led a healthy lifestyle. But, for no apparent reason, she began to gain weight. Lots of weight, primarily in the upper body. "I looked like an apple, with a moon face," Fedela says. "Cushing's is not called ?the ugly disease' for nothing." Cushing's disease victims don't share the same symptoms, but many of the symptoms are physically noticeable: the extreme weight gain in the upper body, the moon face, a buffalo hump on the back, hair loss and blotchy, red skin with breakouts. "Feeling constantly cruddy" is the polite description of being a Cushie," Fedela says. Then there are the other symptoms, those not visible on the outside. Fedela says the worst for her was the insomnia, the anxiety, the fear of abandonment and pain. The joints hurt, the muscles lose their mass and walking is difficult. When Fedela was at her worst, she couldn't walk up the stairs, let alone cook or shop. She was as weak as a kitten, she says. Her doctors at this time urged her to lose weight, giving medications that often made her sick in an effort to solve the problem. Bob Vincent, her husband of 48 years, never left her side during this difficult time. Cushing's disease is such a traumatic disease that it is estimated more than half of husbands leave their wives. The mood swings can be dramatic. "When Bob would bring me coffee," says Fedela, "he never knew what to expect." Then Fedela decided to try a different kind of doctor. She went to Dr. Jennifer Warren, in Hampton, who specializes in weight control. In Warren, she found someone who listened to her and paid attention. Warren was the first doctor to suggest Cushing's disease might be the cause of Fedela's weight gain. From that moment on, things began to happen. Fedela went to Dr. Daniel Nadeau who put her on a diabetes-related medication for weight loss. This didn't work and after a month, she was given a simple urinalysis test. Within 24 hours, she had her diagnosis. Nadeau referred Fedela to the Lahey Clinic, in Burlington, Mass. There she met the doctor she now calls her "savior," Dr. Nicholas Tritos. This clinic is world-renowned for its work in pituitary malfunctions. What is Cushing's disease? It is the body reacting to a constant overdose of steroids being released by the adrenal glands. The pituitary gland over-stimulates the adrenal glands, which in turn send crisis-level chemical messages to all the other endocrine glands. "The body reacts to the hyper-stimulation by constantly being in a state of fight or flight," says Fedela. "It's 24/7 with no relief." Cushing's disease affects an estimated 10 to 15 out of every million people. The fact that it is relatively rare in numbers is one cause of the lack of public knowledge and awareness of this disease. Non-diagnosed, Cushing's disease can lead to uncontrollable diabetes, and eventually, death. The symptoms can be so varied and mimic so many other conditions, that Cushing's disease is often not diagnosed or misdiagnosed. "The not knowing what is wrong with you is awful," Fedela says, "and the way people look at you when you're not what society calls ?normal.'" "People would tell me ?you are what you eat' and suggest I try Weight Watchers, things like that." But Fedela was carefully watching what she ate, often eating less than her doctors prescribed. Even when her energy level was almost non-existent, she and her husband would go to the gym. "Bob wouldn't let me stay inside. We kept going out, for drives, to Market Square and lunch with friends." After the initial diagnosis, Fedela spent six months undergoing various tests. Then, on Mother's Day of this year, during the New Hampshire floods, she was operated on. Fifty percent of one side of the pituitary was removed and 25 percent of the other side to remove the offending tumorous tissues. Fedela spent five days recovering at the Lahey Clinic. "The whole staff was just wonderful. The nurses would pop in to see what a Cushie looked like. They never left me alone." When she came out of the surgery, Bob was there beside her, along with a very special teddy bear. "The teddy bear was hugged by members of South Church, including the children Fedela taught in her kindergarten class," he said. The blessing of this disease, as Fedela describes it, is in learning how to receive. Having long been a giver herself, this was not an easy lesson to learn. South Church, in Portsmouth, put together a Fedela Vincent Support Group, with people from Portsmouth, Rye, Salem, Mass., and Greenland, to provide moral support, company and meals. For six weeks, day and night, someone was there. "South Church is an amazing institution," Bob says. "The support group was invaluable. Fedela received over 250 cards from all over the country." This support group is still there for Vincent as she continues to recover and regain her health. She still has problems, but she can now lead a more normal life. "I can shop!" she says with a grin. "I wanted to do this interview as a call to the medical community to be alert to the symptoms of Cushing's disease and to really listen to their patients." Fedela also hopes that by sharing her story, others may learn that diet alone is not always the cause of weight gain. America's obsession with skinny bodies and the resulting negative judgmental views on those who do not fit this picture is something she hopes people may think twice about before making judgments. Lastly, Fedela wants to publicly thank her husband, family, friends and physicians who have stood by her during this difficult struggle. She still has a long way to go, but she is on the mend now and knows what was wrong with her. "The not knowing what was happening to me was the worst of all." "If by telling my story, I can help even one person not go through what I did, then it's worth it." Tritos, a leading endocrinologist at the Lahey Clinic, says it is common for Cushing's disease to not be immediately diagnosed. "It is common because the condition itself is uncommon. The symptoms are subtle and can be attributed to other causes." "In Fedela's case, her own body was producing an overload of steroids." There is a peculiar type of weight gain, in the face, neck and upper torso. Unfortunately, it can take awhile to be diagnosed. "Most patients go from one doctor to another before Cushing's disease is diagnosed." Also, Tritos says, sometimes the tests are inconclusive. But once on the appropriate path, most patients can be helped. Tritos also notes the value of a good support system, which Fedela had in place. "The support of family and friends is very important. By telling her story, Mrs. Vincent will increase the public's awareness of Cushing's disease."

http://neuro.psychiatryonline.org/cgi/cont...stract/18/4/450 J Neuropsychiatry Clin Neurosci 18:450-459, November 2006 doi: 10.1176/appi.neuropsych.18.4.450 ? 2006 American Psychiatric Publishing, Inc. Special Article The Neuropsychiatric Profile of Addison?s Disease: Revisiting a Forgotten Phenomenon Rebecca E. Anglin, B.Sc., M.D., Patricia I. Rosebush, M.Sc.N., M.D., F.R.C.P.(C.) and Michael F. Mazurek, M.D., F.R.C.P.(C.) Received November 2, 2005; revised January 8, 2006; accepted January 19, 2006. Drs. Anglin and Mazurek are affiliated with the Department of Medicine and Department of Psychiatry and Behavioral Neurosciences, McMaster University, Hamilton, Ontario, Canada. Dr. Rosebush is affiliated with the Department of Psychiatry and Behavioral Neurosciences, McMaster University, Hamilton, Ontario, Canada. Address correspondence to Dr. Rosebush, 3G15, Health Sciences Center, 1200 Main St.W, Hamilton, Ontario, L8Z 3N5, Canada; rosebush@hhsc.ca (E-mail). One hundred fifty years since Thomas Addison?s original description of the disease, it is not commonly appreciated that patients with Addison?s disease may present with psychiatric symptoms. A review of the literature indicates that disturbances in mood, motivation, and behavior are associated with Addison?s disease. Psychosis occurs less frequently, but can be the presenting symptom of a life-threatening adrenal crisis. Potential mechanisms for the neuropsychiatric symptoms of Addison?s disease include electrophysiological, electrolyte and metabolic abnormalities, glucocorticoid deficiency, increased endorphins, and an associated Hashimoto encephalopathy. Physicians must be aware that Addison?s disease may present solely with psychiatric symptoms and maintain a high index of suspicion for this potentially fatal condition. ~~~~~~~~~~~ You may access this article (from the computer you are currently using) for 1 day for US$15.00 at http://neuro.psychiatryonline.org/cgi/reprint/18/4/450

I'm so pleased with myself. This morning I just did a local "Turkey Trot", just the walking part, but I made it 2 miles and didn't need the extra cortisone I brought just in case. This event benefits the local Life With Cancer center where I take some classes. It's such a neat feeling to be out there with 4,000 others, all running/walking/trotting/pushing strollers/walking dogs for a common cause. This event today took in over $250,000. Amazing! My son and husband ran (one way faster than the other!) and my mom and I walked. It was so cold and rainy, but what a sense of accomplishment! I had no idea if I could do that or not, but now that I have, maybe next year I'll be running too. (HA!)

http://www.irishhealth.com/?level=4&id=10614 Pituitary patients missing out [Posted: Tue 21/11/2006] The absence of a national register of patients with pituitary conditions is preventing hundreds, perhaps even thousands of people, from the getting the treatment and medication they need, some of the country's leading endocrinologists have claimed. The pituitary gland is a pea-sized gland located at the base of the brain. It produces hormones, which in turn control the hormone production of many other glands in the body. There are a number of conditions caused by problems with the pituitary gland, including pituitary tumours and Cushing's disease, the symptoms of which include depression, weight gain and a round 'moon face'. According to experts, a large number of pituitary conditions remain under-diagnosed here. "There is no comprehensive database in Ireland of patients suffering from pituitary disease. This is a situation which requires immediate remedy. Extrapolating from European and other studies, we would estimate that there are several thousand patients with pituitary disease in this country", explained Dr Domhnall O'Halloran of Cork University Hospital. He emphasised that in order to alleviate the significant morbidity and increased mortality associated with pituitary disease, a dedicated team approach from both primary and secondary care is required. "Patients with pituitary disease require long-term supervision by a dedicated multidisciplinary hospital service working in collaboration with their family doctor. They will require pituitary hormone treatment, as well as management of heart risk factors, such as blood pressure and cholesterol. For their underlying pituitary conditions, they may require complex treatments including drug therapies and pituitary surgery", Dr O'Halloran said. These treatments, he explained, must be tailored to an individual patient's requirements and supervised by a team with expertise in this area. Also commenting on this issue, Dr Chris Thompson, a consultant endocrinologist in Beaumont Hospital, pointed out that new causes of pituitary dysfunction, such as traumatic brain injury (TBI) and the effects of radiation, have only recently been recognised. "The pituitary unit in Beaumont Hospital is a world leader in research on pituitary dysfunction following TBI. This opens up the possibility of hormonal treatment to improve outcomes for some patients with severe head injuries", he said. The endocrinologists made their comments to coincide with National Pituitary Awareness Day, which takes place on November 24. "We hope that this day will heighten awareness about the conditions and encourage healthcare providers and the public to be mindful of the many patients throughout Ireland affected by pituitary problems", said Brian and Ronnie Lawler, the Irish coordinators for the UK-based Pituitary Foundation, which provides support, advice and information to pituitary patients. Patient information leaflets are available from the foundation on a range of pituitary-related issues and conditions. For more information, call (01) 283 1060, email rep-ireland@pituitary.org.uk or log on to... http://www.pituitary.org.uk

Since I had surgery for kidney cancer May 9, 2006, I've been looking around for somewhere to read and talk about this with other survivors (hopefully!) I haven't found anyplace I'd like to visit or feel comfortable with yet, so I decided to make a new blog here. I'm sure that my recovery will be much the same as for any other major abdominal surgery, although I'd like it to be faster Before my surgery, I didn't have time really to consider that I had cancer, and what it meant for my life. There was no going from doctor to doctor, running a different test each week, suspecting that maybe... Just boom, there it is. Cancer. Now that I'm about 6 months post-op, I'm thinking more and more about this and how it might affect my future. I know that there are going to be lots of scans, every 3 months, just to be sure that there wasn't a cell hiding out. I know I have to be careful with meds - no NSAIDs so my arthritis is worse. I can no longer take hGH (recombinant growth hormone by daily injection, due to panhypopituitarism) even though I'm deficient. In 5 years (if I survive!) I can take the GH again, supposedly. I'm supposed to be eating less protein, more fruits/veggies, drinking more water. And I'm supposed to avoid playing football and other things that might damage my remaining kidney. Normally, I know how very lucky I am. I just reread the path reports and know that the tumor was already hemorrhaging around the borders and the cysts contained hemorrhagic fluid. Things could be much worse. Sometimes, at night when I can't sleep, I wonder why I was lucky like this. What haven't I done with my life that I should. Seems to me that I've accomplished what I should already. And, in the night, I worry about the cancer returning, taking my other kidney or worse. At this time, there's no standard chemo unless it's metastasized, although there are some promising clinical trials. Radiation doesn't seem to work for this kind of cancer, so if it returns it's more surgery. From my past posts: and I plan to keep a kidney cancer journal of sorts in here, so years from now I can look back and laugh and wonder why in the world I was so worried. I just updated my bio. I said: People mostly assume that everything is OK with me because I am not getting chemo or radiation and because I look so "healthy" (thanks to the Cushing's/daily Cortef!). They figure that if there was any real danger of the cancer metasticizing that I would be on chemo, like other cancer patients do. They don't understand that I have to wait and pray because there are no approved ajuvant treatments. If/when my cancer returns, it's just more surgery. If I'm "lucky" enough and get to a stage 4 THEN I can have chemo/radiation as a pallative measure. Aarrggh! Do I see starting a kidney cancer support group in my future?

http://journals.endocrinology.org/joe/fca/JOE06925.htm Changes in thrombospondin-1 levels in the endothelial cells of the anterior pituitary during estrogen-induced prolactin-secreting pituitary tumors Abby J Sarkar, Kirti Chaturvedi, Cui Ping Chen and Dipak K Sarkar Endocrinology Program and Department of Animal Sciences, Rutgers, The State University of New Jersey, 84 Lipman Drive, New Brunswick, NJ 08901, USA (Requests for offprints should be addressed to D K Sarkar) Abstract Thrombospondin-1 (TSP-1), a multifunctional matrix glycoprotein, has been shown to control tumor growth by inhibiting angiogenesis in various tissues. However, the role of this glycoprotein in pituitary angiogenesis is not well studied. In this report, we determined the changes in the production and action of TSP-1 on endothelial cells in anterior pituitary following estradiol treatment, which is known to increase prolactin-secreting tumor growth and vascularization in this tissue. We showed that TSP1 immunoreactive protein is distributed in the anterior pituitary, particularly in the endothelial cells. Estradiol treatment for 2 and 4 weeks decreased the total tissue immunoreactive level of TSP1 as well as the endothelial cell specific immunoreactive level of this protein in the anterior pituitary. The steroid treatment also decreased the protein levels of TSP1 in anterior pituitary tissues and in purified pituitary endothelial cells in primary cultures. Determination of the effects of TSP-1 on proliferation and migration of pituitary-derived endothelial cells in primary cultures elucidated an inhibitory action of TSP-1 on this vascular cell functions. These results suggest that locally produced TSP-1 may regulate estrogen angiogenic action on the pituitary. Journal of Endocrinology Download the ACCEPTED PREPRINT (i.e. full text) of this article in Acrobat PDF format.

http://www.sun-herald.com/NewsArchive2/111...p;story=hn1.htm 11/16/06 TOO MUCH IRON RUSTS THE LIVER DEAR DR. DONOHUE: My husband died at age 62 of liver cancer. I have a feeling that it might have been caused by the undiagnosed complications of hemochromatosis. I think this is so because three of my five children over the age of 40 have just been diagnosed with hemochromatosis and are presently under treatment for it. Could there be a connection between it and my husband's cancer? -- P.F. ANSWER: Hemochromatosis (HE-moe-CROW-muh-TOE-suss) is an inherited disorder with an unfortunately unusual name that makes people think it's a rarity. It is not. It has to do with an inappropriate absorption of iron. Humans have a built-in mechanism that allows the digestive tract to absorb only the amount of iron that is lost every day. People with hemochromatosis don't have this mechanism. They absorb far too much iron, which deposits in many tissues and organs. The liver is the principal organ affected, and the iron rusts it, so to speak. Excess liver iron leads to cirrhosis. Iron in the heart brings on heart failure. In the pancreas it causes diabetes. Joints filled with iron become arthritic. Iron infiltrating the skin turns it a bronze color. Iron can invade the testicles and the pituitary gland and greatly damage them. Although the defect is present from birth, signs don't develop until sometime between 40 and 60. If the illness is diagnosed before organ damage takes place, treatment by removing blood keeps organs healthy. Blood is the body's storehouse of iron. Liver cancer can be a consequence of hemochromatosis. It happens to about 30 percent of those hemochromatosis patients who develop cirrhosis. Since hemochromatosis is a genetic illness, all your children should be checked so that early treatment can keep organs healthy.

http://jcem.endojournals.org/cgi/content/abstract/91/11/4528 Journal of Clinical Endocrinology & Metabolism, doi:10.1210/jc.2006-0426 The Journal of Clinical Endocrinology & Metabolism Vol. 91, No. 11 4528-4536 Copyright ? 2006 by The Endocrine Society Novel HESX1 Mutations Associated with a Life-Threatening Neonatal Phenotype, Pituitary Aplasia, but Normally Located Posterior Pituitary and No Optic Nerve Abnormalities Marie-Laure Sobrier, Mohamad Maghnie, Marie-Pierre Vi?-Luton, Andrea Secco, Natascia di Iorgi, Renata Lorini and Serge Amselem Institut National de la Sant? et de la Recherche M?dicale U654 H?pital Henri-Mondor (M.-L.S., M.-P.V.-L., S.A.), 94000 Cr?teil, France; Department of Pediatrics (A.S.), University of Pavia, 27100 Pavia, Italy; and Department of Pediatrics (M.M., N.d.I., R.L.), Instituto di Ricovero e Cura a Carattere Scientifico G. Gaslini, University of Genova, 16147 Genova, Italy Address all correspondence and requests for reprints to: Serge Amselem, M.D., Ph.D., Institut National de la Sant? et de la Recherche M?dicale, U654, H?pital Henri-Mondor, Cr?teil F-94010, France. E-mail: serge.amselem@creteil.inserm.fr. Context: Hesx1 is one of the earliest homeodomain transcription factors expressed during pituitary development. Very few HESX1 mutations have been identified in humans; although in those cases the disease phenotype shows considerable variability, all but one of the patients display an ectopic posterior pituitary and/or optic nerve abnormalities. Objective: The objectives of the study were to describe the complex phenotype associated with the panhypopituitarism of two unrelated Italian patients who, at birth, presented with hypoglycemic seizures and respiratory distress complicated by shock, in a familial context of neonatal death in one family and spontaneous miscarriage in both families and to identify the molecular basis of this unusual syndrome. Main Outcome Measures: Magnetic resonance imaging of the pituitary region, study of HESX1 gene and transcripts, and assessment of the ability of mutated HESX1 proteins to repress transcription were measured. Results: Magnetic resonance imaging examination showed an anterior pituitary aplasia in a flat sella turcica and a normally located posterior pituitary in both patients. A constellation of extrapituitary developmental defects were found in the two patients, but without any optic nerve abnormalities. Sequencing of HESX1 exons and their flanking intronic regions revealed two different homozygous mutations. A frameshift (c.449_450delAC) was identified in one case, whereas the other patient carried a splice defect (c.357 + 2T>C) confirmed by the study of HESX1 transcripts. If translated, these mutations would lead to the synthesis of truncated proteins partly or entirely lacking the homeodomain, with no transcriptional repression, as shown by their inability to inhibit PROP1 activity. Conclusions: These observations reveal two novel HESX1 mutations in a so-far-undescribed disease phenotype characterized by a life-threatening neonatal condition associated with anterior pituitary aplasia, in the absence of ectopic posterior pituitary Full Text (PDF): http://jcem.endojournals.org/cgi/reprint/91/11/4528

Apparently several papers put their own spin on this story. I had collected these 2 versions for the next email newsletters: http://www.emaxhealth.com/24/8215.html Google Helping Doctors Diagnose Difficult Cases Google For A Diagnosis Searching with Google may help doctors to diagnose difficult cases, finds a study from Australia published on bmj.com today. Doctors have been estimated to carry two million facts in their heads to help them diagnose illness, but with medical knowledge expanding rapidly, even this may not be enough. Google is the most popular search engine on the world wide web, giving users quick access to more than three billion medical articles. So, how good is Google in helping doctors diagnose difficult cases? Doctors at the Princess Alexandra Hospital in Brisbane identified 26 difficult diagnostic cases published in the New England Journal of Medicine in 2005. They included conditions such as Cushing's syndrome and Creutzfeldt-Jakob disease. They selected three to five search terms from each case and did a Google search while blind to the correct diagnoses. They then selected and recorded the three diagnoses that were ranked most prominently and seemed to fit the symptoms and signs, and compared the results with the correct diagnoses as published in the journal. Google searches found the correct diagnosis in 15 (58%) of cases. The authors suggest that Google is likely to be a useful aid for conditions with unique symptoms and signs that can easily be used as search terms. However, they stress that the efficiency of the search and the usefulness of the retrieved information depend on the searchers' knowledge base. Doctors and patients are increasingly using the internet to search for health related information, and useful information on even the rarest medical syndromes can now be found and digested within a matter of minutes, say the authors. "Our study suggests that in difficult diagnostic cases, it is often useful to google for a diagnosis." ~~~~~~~~~~~~~~~~~~~~~~~~~~~ http://www.abc.net.au/news/newsitems/200611/s1785466.htm Doctors use Google to diagnose disease: study By Anna Salleh, ABC Science Online It is not just patients who are frantically plugging their symptoms into Google to see what disease they might have, Australian researchers say doctors are doing it too. Dr Hangwi Tang and Dr Jennifer Ng of the Princess Alexandra Hospital in Brisbane have reported their findings online in the British Medical Journal. Dr Tang says the study was driven by personal curiosity after noticing how patients and doctors alike were using Google to diagnose difficult cases. In one example he had a patient whose father used the search engine to correctly diagnose that his son had the rare circulatory condition -Paget-von Schr?tter syndrome. Dr Tang and Dr Ng selected 26 difficult cases presented in the New England Journal of Medicine, including Cushing's syndrome, Creutzfeldt-Jakob disease, encephalitis and cirrhosis. They then plugged the symptoms of each case into the search engine to come up with a diagnosis. When these diagnoses were compared with the correct published diagnoses, the researchers found that Google got it right 58 per cent of the time. They say an online search is likely to be more effective at helping to diagnose conditions with unique symptoms that can be used as search terms. Dr Tang says part of the challenge in using Google is to be able to efficiently sift through the many pages of links that you get from an online search. He thinks that doctors are better placed than patients at doing this because they are better at selecting relevant links. "I don't think Google can replace doctors, in other words," said Dr Tang. Millions of facts Doctors have been estimated to carry 2 million facts in their heads to help them to diagnose disease, the researchers say. But search engines allow them to get quick access to an ever increasing medical knowledge base that might be impossible to hold in their head. Google in particular gives access to more than 3 billion articles, they say, with Google Scholar restricting searches to peer reviewed articles. Dr Tang says while there are a number of other search engines that clinicians can use, they often prefer Google because it is so easy to use and freely available. Other studies Professor Johanna Westbrook of the Centre for Health Informatics in Sydney says the findings are consistent with her own. Her team looked at how specialised search engines could help clinicians to both diagnose and treat patients, using the best available evidence. The study found clinicians were 21 per cent more likely to give the correct answers when they used online search engines. Interestingly though, a few clinicians got the wrong answers using the search engines, although they got the right answers without them. Professor Westbrook says this underscores the importance of learning how to interpret complex evidence. Another interesting finding was that clinical nurse consultants using the search engines were just as accurate as doctors. Professor Westbrook says this suggests search engines might help such nurses to diagnose and treat patients in rural areas where there are fewer doctors. "[An online search engine is] available 24 hours a day," she said. "Whereas you can't get a clinician 24 hours a day. You can't get to a hospital library 24 hours a day." Professor Westbrook says that while Google might be good for helping find information about diseases with unique symptoms, more sophisticated search engines would be required for more complex diseases. ~~~~~~~~~~~~~~~~~~~~~~~~~~~ Thanks, Robin!

I just updated my bio. I said: Update October 26, 2006 I went to see my Johns Hopkins endo again last week. He doesn't "think" that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have. He was happy to see that I had lost 22 pounds since my last 6 month visit. Not all of that was from surgery! He reminded me that I can take more cortisone, but I hate to do that because I gain weight so fast when I take more. He thought that my blood pressure was low - for me, not for "normal" people. He took my pressure several times, lying down, getting up quickly. But I never got dizzy. Maybe my pressure increase was temporary when the cancer started. All these mysteries I have that no one can answer. My energy levels are lower than when I was on GH, and they're lower again because I had the adrenal removed, because of my panhypopit, because of my cancer (even though currently NED, it can come back at any time, because of my GH deficiency... Every day is a challenge getting up, doing something useful, doing something without arthritic pain and weakness, having the energy to finish even something "easy". I'm starting to get very depressed over all this. If this is the way the rest of my life is going to be, why bother?

From http://www.newswire.ca/en/releases/archive...6/23/c3257.html Hormone resistance of pituitary tumors and Cushing disease explained MONTREAL, Oct. 23 /CNW Telbec/ - Montr?al scientists led by Dr Jacques Drouin, researcher at the Institut de recherches cliniques de Montr?al (IRCM), and collaborators from around the world (Canada, France, the Netherlands and United States) unravel mechanism of hormone resistance in pituitary tumors of Cushing disease patients. Cushing disease is caused by pituitary tumors that produce excessive amounts of hormone because the tumor cells have become resistant to negative feedback control by a class of steroid hormones, glucocorticoids. In Cushing disease, this excessive hormone production can lead to hypertension, obesity, diabetes and osteoporosis. Through detailed molecular investigation of the mechanism of this negative feedback, a Montr?al research group has identified two essential components (proteins) of this feedback mechanism. Extrapolating from these basic studies, they have shown that about half of the pituitary tumors from Cushing disease patients are deficient in expression of either of these proteins, thus providing a molecular explanation for the hormone resistance that is the hallmark, and likely first event, in the formation of these tumors. The novel insight provided by knowledge of the basic mechanism of hormone resistance will lead to the rational design of therapeutic approaches for the better management of Cushing disease patients. This insight will also help understand other forms of hormone resistant cancers. This work is published in Genes and Development (Bilodeau et al, Genes Dev 2006, 20:2871- 2886) and it was supported by grants from the Canadian Cancer Society and from the Canadian Institutes of Health Research. Dr. Jacques Drouin is the Director of the Molecular Genetics Research Unit at IRCM. He holds the GlaxoSmithKline Chair in Molecular Genetics. The IRCM (www.ircm.qc.ca) is recognized as one of the country's top-performing research centres. It has a mandate to establish links between research and patients, promote the prevention of illness, and train a new generation of high-level scientists. The IRCM has 37 research units and a staff of more than 450. The IRCM is also affiliated to Universit? de Montr?al. For further information: Lucette Th?riault, Communications Director, Institut de recherches cliniques de Montr?al, (514) 987-5535, lucette.theriault@ircm.qc.ca

From http://jcem.endojournals.org/cgi/content/abstract/91/10/3746 Journal of Clinical Endocrinology & Metabolism, doi:10.1210/jc.2006-0997 The Journal of Clinical Endocrinology & Metabolism Vol. 91, No. 10 3746-3753 Copyright ? 2006 by The Endocrine Society CLINICAL REVIEW Cushing?s Syndrome: Important Issues in Diagnosis and Management James W. Findling and Hershel Raff Endocrine-Diabetes Center (J.W.F.) and Endocrine Research Laboratory (H.R.), St. Luke?s Medical Center, Milwaukee, Wisconsin 53215; and Department of Medicine (J.W.F., H.R.), Medical College of Wisconsin, Milwaukee, Wisconsin 53226 Address all correspondence and requests for reprints to: Hershel Raff, Ph.D., Endocrinology, St. Luke?s Physician?s Office Building, 2801 West KK River Parkway, Suite 245, Milwaukee, Wisconsin 53215. E-mail: hraff@mcw.edu. Context: The diagnosis, differential diagnosis, and treatment of Cushing?s syndrome are challenging problems in clinical endocrinology. We focus on critical questions addressing screening for Cushing?s syndrome, differentiation of Cushing?s subtypes, and treatment options. Evidence Acquisition: Ovid?s MEDLINE (1996 through April 2006) was used to search the general literature. We also relied on previously published reviews and a recent monograph and cite a mix of primary articles and recent reviews. Evidence Synthesis: Although this article represents our opinion, it draws heavily on a recent consensus statement from experts in the field and a recent monograph on Cushing?s syndrome. Conclusions: We concluded that: 1) measurement of late-night or bedtime salivary cortisol is a useful approach to screen for Cushing?s syndrome; 2) measurement of suppressed plasma ACTH by immunometric assay is useful to differentiate ACTH-dependent and -independent Cushing?s syndrome; 3) inferior petrosal sinus sampling for ACTH should be performed in patients with ACTH-dependent hypercortisolism in whom a pituitary magnetic resonance imaging is normal or equivocal (in the absence of a pituitary ACTH gradient, prolactin levels should be measured to confirm the integrity of venous sampling); 4) computed tomography of the chest and abdomen and somatostatin receptor scintigraphy should be performed in patients with the occult ectopic ACTH syndrome; and 5) patients with Cushing?s disease should be referred to a neurosurgeon with extensive experience operating on corticotroph microadenomas. Bilateral laparoscopic adrenalectomy should be considered in patients with Cushing?s disease who fail therapies directed at the pituitary.

Meri posted this article here: http://cushings.invisionzone.com/index.php...mp;#entry152353 Thanks, Meri!

http://www.wqad.com/Global/story.asp?S=5435645&nav=7k8p Obese from Secret Disease Imagine exercising everyday, eating very little and still gaining weight. That's what happens to hundreds of people with a rare metabolic disorder that often goes undiagnosed for years. There is hope and help. Obese from Secret Disease As a young teen, Jaimie Augustine weighed 130 pounds. She started gaining weight at 15. At 22 she weighed 220. "I was at the gym every day for an hour and a half; I was consuming 1,000 calories or less a day," says Jaimie. Jaimie also had insomnia, excess hair growth, severe acne, depression and stopped menstruating. But it took five years before she found a doctor who recognized the symptoms of this mystery disease. "I felt validation because I had friends and family that didn't believe me. They're just thinking, 'Oh, you're sneaking Oreos at night,'" she says. Jaimie was diagnosed with Cushing's disease. "Virtually all the symptoms and physical features of Cushing's can be associated with other diseases -- and diseases that are more common than Cushing's," says Dr. William Ludlam, and endocrinologist at Oregon Health and Science University in Portland, Oregon. It's caused by a tumor in the pituitary gland that imbalances your hormones. Glands on the kidneys then release too much of the hormone cortisol. "So despite what you do, your metabolism has been hijacked by too much of a hormone that you actually need to live," says Dr. Ludlam. Surgery like this can remove the tumor -- with the greatest chance for a cure in the hands of an experienced neurosurgeon. Jaimie's first surgery didn't work, so last fall she had a second procedure. It worked. She's already lost 40 pounds. "Now I have my life back," says Jaimie. And she has a future she can look forward to instead of dread. No one knows exactly how many people have cushing's disease because it often goes undiagnosed. But about one-thousand people are told they have it each year in the U.S. The first step in diagnosing it is to find an experienced endocrinologist -- the diagnosis can then be confirmed through blood and urine tests. Some centers also treat it through drugs and radiation. Log on to www.ivanhoe.com for more information. Watch the latest Medical Breakthrough every Monday, Wednesday and Friday on NewsChannel 8 at 5 and every Monday and Wednesday on NewsChannel 8 at 10.

From http://jcem.endojournals.org/cgi/content/abstract/91/7/2656 Surgical Remission of Pituitary Adenomas Confined to the Neurohypophysis in Cushing?s Disease Robert J. Weil, Alexander O. Vortmeyer, Lynnette K. Nieman ( http://www.cushings-help.com/doctors-md.htm#nieman ), Hetty L. DeVroom, John Wanebo and Edward H. Oldfield ( http://www.cushings-help.com/doctors-md.htm#oldfield ) Surgical Neurology Branch (R.J.W., A.O.V., H.L.D., J.W., E.H.O.), National Institutes of Neurological Disorders and Stroke, National Institutes of Health, and Reproductive Medicine and Biology Branch (L.K.N.), National Institute of Child Health and Development, National Institutes of Health, Bethesda, Maryland 20892-1414 Address all correspondence and requests for reprints to: Edward H. Oldfield, M.D., Surgical Neurology Branch, National Institutes of Neurological Disorders and Stroke, National Institutes of Health, Building 10, Room 5D37, MSC 1414, 9000 Rockville Pike, Bethesda, Maryland 20892-1414 E-mail: mailto: oldfiele@ninds.nih.gov Context: Partial or total removal of the pituitary cures 60?80% of patients with Cushing?s disease (CD) in whom an adenoma cannot be identified at surgery. Many patients who fail complete or partial hypophysectomy are cured by sellar and parasellar irradiation. Design/Patients: As part of a series of prospective studies of CD, we identified 12 patients (34.5 ? 19.9 yr; 11 females; four children) with tumors located completely within the neurohypophysis among 730 patients undergoing surgery for CD. Setting: The study was conducted at a tertiary referral centerat a clinical research hospital. Results: All 12 patients had clinical and biochemically defined CD. Tumor was visible at surgery in 11 patients; all 12 tumors were positive for ACTH by immunohistochemistry. Two tumors were excised at repeat surgery because of persistent hypercortisolism within 14 d of negative exploration of the adenohypophysis. There were no long-term complications. At follow-up of 71.9? 34.2 months (range, 30?138 months), all patients are in remission of CD. Adult patients have had significant improvement in weight and body mass indices, with restoration of normal menses in all women. In the four pediatric patients, height, weight, and body mass indices have been restored toward normal by surgical remission of CD. Hypopituitarism or long-term neurohypophysial dysfunction has not occurred. Conclusion: We report a new subset of patients with CD, ACTH-secreting adenomas that arise wholly within the posterior lobe of the pituitary gland. In cases of CD in which an adenoma is not identified in the adenohypophysis and in patients with persistent hypercortisolism after complete or partial excision of the anterior lobe, tumor within the neurohypophysis should be considered; selective adenomectomy of a neurohypophyseal, ACTH-secreting tumor can produce long-term remission.

From http://jcem.endojournals.org/cgi/content/abstract/91/7/2582 Comparison of the Dexamethasone-Suppressed Corticotropin-Releasing Hormone Test and Low-Dose Dexamethasone Suppression Test in the Diagnosis of Cushing?s Syndrome N. M. Martin, W. S. Dhillo, A. Banerjee, A. Abdulali, C. N. Jayasena, M. Donaldson, J. F. Todd and K. Meeran Department of Endocrinology, Imperial College, Faculty of Medicine, Hammersmith Hospital, London W12 0NN, United Kingdom Address all correspondence and requests for reprints to: Dr. K. Meeran, Department of Endocrinology, Imperial College, Faculty of Medicine, Hammersmith Hospital, London W12 0NN, United Kingdom. E-mail: k.meeran@imperial.ac.uk Context: The low-dose dexamethasone suppression test (LDDST) is widely used in confirming a diagnosis of Cushing?s syndrome. CRH administration at the end of an LDDST has been reported to improve the diagnostic accuracy of this test. Objective: Our objective was to assess whether CRH administration after a standard LDDST (LDDST-CRH test) improves diagnostic accuracy in Cushing?s syndrome. Design, Setting, and Participants: Thirty-six individuals with a clinical suspicion of Cushing?s syndrome each completed a standard LDDST and an LDDST-CRH test at Hammersmith Hospitals NHS Trust, London. The LDDST involved administration of 0.5 mg oral dexamethasone given 6-hourly for 48 h. Serum cortisol was measured 6 h after the last dose of dexamethasone, with a value of 50 nmol/liter or below excluding Cushing?s syndrome. Immediately after this, the LDDST-CRH test commenced with administration of a ninth dose of 0.5 mg dexamethasone. Exactly 2 h later, 100 ?g human-sequence CRH was administered. Serum cortisol was measured 15 min after the CRH injection, with a value of less than 38 nmol/liter also excluding Cushing?s syndrome. Main Outcome Measure: Diagnosis or exclusion of Cushing?s syndrome was the main outcome measure. Results: Twelve subjects were diagnosed with Cushing?s syndrome (eight Cushing?s disease and four primary adrenal). The sensitivity of the LDDST in diagnosing Cushing?s syndrome was 100%, with a specificity of 88%. In contrast, although the sensitivity of the LDDST-CRH test was also 100%, specificity was reduced at 67%. These results give a positive predictive value of 80% for the LDDST and 60% for the LDDST-CRH test. Conclusion: This small study suggests that the addition of CRH to the LDDST does not improve the diagnostic accuracy of the standard LDDST in Cushing?s syndrome. Get the full text from this link: http://jcem.endojournals.org/cgi/content/abstract/91/7/2582

http://www.oregonlive.com/living/oregonian...1020.xml&coll=7 A diagnosis to end the despair Wellness: Finally learning they have Cushing's brings a sense of relief Wednesday, July 05, 2006 KATE TAYLOR The Oregonian They've spent years, they say, chasing misdiagnoses. "You eat too much pizza," said some doctors. "It's fibromyalgia," said others. "Lupus, thyroid disorder, menopause," said still more doctors. It was only when they found Dr. William Ludlam at Oregon Health & Science University that they were diagnosed with Cushing's disease, which causes uncontrollable weight gain. And it wasn't until they found each other that they felt anyone else really understood their frustration and despair. "I tear up just thinking about how complete and validated I felt when I met them. We're like family now," said Jaimie Augustine, 22, of San Diego, sitting recently in a hospital room with Ludlam and two other Cushing's patients, Karen Nolan of Vermont and Lisa Eldridge of Massachusetts. Reaching a hand toward Nolan, Augustine said, "I call her 'Karen, my Cushy mom.' She understands things that I can't even talk to my own mother about." Like the nightmare of turning into someone she didn't recognize in the mirror. Or the strict dieting and strenuous exercise that did nothing to stop the weight gain. Or the helpless anger at so many fruitless medical appointments. As director of the OHSU Pituitary Unit, one of the largest neuroendocrine centers in the country, Ludlam says he's glad to see Cushing's patients bonding. He is working hard to diagnose and spread awareness about the rare disease, which is caused by a tumor in the brain's pituitary gland. Ludlam guides about 30 patients a year through surgery. Because it's difficult for surgeons to siphon the pituitary tumor -- "it's like a puddle," he says -- patients sometimes have to go through surgery more than once. Only 600 patients nationwide are diagnosed each year with the disease, but doctors like Ludlam suspect that many others go undiagnosed. Besides wild weight gain, symptoms of Cushing's include rounded, puffy facial features, increased fat around the neck, fragile and ruddy skin, unusual hair growth and thinning or balding scalps. They are symptoms that the three friends say they fought for years. As Augustine's weight rocketed from 120 to 220 after she turned 14, she went on low-calorie diets and upped her workouts to 11/2 hours a day. When she continued to expand, she stopped dating and taking part in social activities. "I was continuing to balloon into a person I no longer recognized," she said. "I knew something was seriously wrong, and I could not keep beating myself up over what I was or wasn't putting in my mouth." The friends found each other by entering phrases such as "uncontrollable weight gain" on their computer search engines, they said. On Cushings-help.com -- a Web site the three describe as "lifesaving" -- they found one another. As they read each other's stories, waves of relief washed over them. "I really thought," Augustine said, "that I was the only one." Many doctors, Ludlam said, don't have the expertise to recognize Cushing's. "There are two issues. One is that the general practitioner doesn't see the disease very often and won't think of it when a person has it right there in front of them," he said. "The other problem is that it's complex, so a doctor might not give the diagnosis because one piece of the work-up doesn't fit." One of the most problematic aspects of Cushing's, Ludlam said, is that it drains away patients' energy even as they try to seek help. For Nolan, 55, Cushing's came with a weakness and shakiness that made even a trip up the stairs or a short drive to the store dicey. "The fatigue was odd," she said. "I'd be driving and suddenly have to open up all the windows because I was afraid I was going to fall asleep." The onset of Nolan's disease began sometime in 1999, when her weight shot from 128 to 206 and she lost nearly all her hair. As doctors guessed everything from menopause to depression, the former office manager grew ever larger, ever more frightened. "The darkest moment was when one doctor told me I'd better just get used to being heavy and bald," she said. "I remember driving home and crying the whole way." Nolan, who had surgery in January, is anticipating the kind of weight loss experienced by her "Cushing's family." Augustine, whose surgery was in November 2005, has lost 20 pounds; Eldridge's surgery was in April 2005, and she has lost 50 pounds. As more and more people are diagnosed, the three patients are working to help spread awareness about Cushing's. And, they say, they hope to be able to support many other patients who have to go through the same ordeal. "You can't believe how much it helps to have friends," Augustine said. "When one of us can't see the light at the end of the tunnel, the others can help us get through." Kate Taylor: 503-294-5116; katetaylor@news.oregonian.com

I can also add them to those that are at http://www.cushings-help.com/links.htm if you think that would be helpful.

Crap! I just went to see my endo again on Thursday to see how things are. Although I know how they are - I'm still tired, gaining a little weight, getting some red spots (petechiae) on my midsection. My endo appointment is over. Turns out that the argenine test that was done 2 years ago was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something. So, I'm off GH again for 2 weeks, then I'm supposed to be retested. The "good news" is that the argenine test is only 90 minutes now instead of 3 hours. He also noted that I have a "little" buffalo hump again. I was just looking through my bio again and noted that I'd said in 1999 after I had my first Insulin Tolerance Test: But the most amazing thing happened. Saturday and Sunday I felt better than I had for 20 years. I had all this energy and I was flying high! So I hadn't felt well in the 20 years before 1999 either? I was so stupid way back in 1987 when I thought that all my troubles would be over when my surgery was over. I have now been sick with this stuff sine at least 1983 - 23 years. Even if I should get my life back, I'm nearly too old to enjoy it. My life is mostly all sleeping. What a bummer! And so I wait for the next test...

Well, Sue is home now and has started with hospice. She's had Last Rites. She's in pain, depressed and scared. I am so afraid of losing my good friend Many people on the boards seem to think that she'll be back to read what they've posted in her thread. I sure hope that they're right and I'm wrong.

Dr. Vance always says that it's not a brain tumor. Her answer to Is a pituitary tumor a brain tumor? However, when I'm talking to almost anyone I will tell them I had a brain tumor. Everyone knows where the brain is and too few know where the pituitary is. If I have more time, I'll give them the full works so they know for sure where the pituitary is On the other hand... if so many doctors have trouble with this stuff, a cartoonist might make the same mistakes they do (unless he comes here! LOLOL). Rex Morgan is still going??? I remember that from my childhood, about a century ago

Someone sent me these in my email...

Coming March 3rd, new Awareness Bands. These are going to be the light Blue color still with the debossed text in yellow. The text will read (those are little hearts on the side): ♥ Cushing's Awareness ♥ It's About Time! I have ordered 60 Medium, 20 Large and 20 Child. Tomorrow, I expect to put up a pre-order form which, as before, will be cheaper than they will be after they arrive.

Well, I guess they're averaging out. Alice is feeling a bit better - Sue is feeling a lot worse I'm so worried for Sue. When I talked to her yesterday she sounded so weak. She's stopped taking her morphine in the hope that she could keep food down - so her pain is returning She doesn't have any steroids so she's not as hungry as she was in the hospital, so she's getting weaker. She's freezing cold all the time and can't get up from the sofa or toilet easily. Her daughter tells her she looks so old because she's so thin from not eating and vomiting. Normally, I'd post all this on the board, but I don't want things to sound like they're impossible, but everything sounds so difficult for her right now. She sounds scared, though. She wants to eat and get stronger but can't. I sure hope that her doctor can give her something tomorrow, something that will help her take her morphine, eat, gain weight, be strong, beat this thing. I'm spending so much time worrying about my friend and I don't feel like I have anywhere but here to talk about this. I try so hard to sound up and cheery for Sue but it's getting harder all the time. I need to go get a tissue...