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  1. Thanks for being a member of Rare Patient Voice, LLC. We have an opportunity for you to take part in a Cushing Syndrome interview (NEON_4470) for Patients. Our project number for this study is NEON_4470. Project Details: Telephone interview Interview is 60-minutes long One Hundred Dollar Reward Looking for Patients diagnosed with Endogenous Cushing Syndrome Things to Note: Patient study only, Caregivers please pass the link along Unique links, please do not pass along for 2nd use Want to share this opportunity? Let us know and we can provide
  2. I think we always knew Cushing's and pregnancy were related... Abstract Cushing’s syndrome (CS) during pregnancy is very rare with a few cases reported in the literature. Of great interest, some cases of CS during pregnancy spontaneously resolve after delivery. Most studies suggest that aberrant luteinizing hormone (LH)/human chorionic gonadotropin (hCG) receptor (LHCGR) seems to play a critical role in the pathogenesis of CS during pregnancy. However, not all women during pregnancy are observed cortisol hypersecretion. Moreover, some cases of adrenal tumors or macr
  3. https://doi.org/10.1016/S2213-8587(20)30215-1 Over the past few months, COVID-19, the pandemic disease caused by severe acute respiratory syndrome coronavirus 2, has been associated with a high rate of infection and lethality, especially in patients with comorbidities such as obesity, hypertension, diabetes, and immunodeficiency syndromes.1 These cardiometabolic and immune impairments are common comorbidities of Cushing's syndrome, a condition characterised by excessive exposure to endogenous glucocorticoids. In patients with Cushing's syndrome, the increased cardiovascu
  4. Authors Ježková J, Ďurovcová V, Wenchich L, Hansíková H, Zeman J, Hána V, Marek J, Lacinová Z, Haluzík M, Kršek M Received 18 March 2019 Accepted for publication 13 June 2019 Published 19 August 2019 Volume 2019:12 Pages 1459—1471 DOI https://doi.org/10.2147/DMSO.S209095 Checked for plagiarism Yes Review by Single-blind Peer reviewers approved by Dr Melinda Thomas Peer reviewer comments 3 Editor who approved publication: Dr Antonio Brunetti Jana Ježková,1 Viktória Ďurovcov
  5. by Kristen Monaco, Staff Writer, MedPage Today LOS ANGELES -- An investigational therapy improved quality of life and reduced disease symptoms for patients with endogenous Cushing's syndrome, according to new findings from the phase III SONICS study. Patients taking oral levoketoconazole twice daily had significant reductions in mean scores for acne (-1.8), peripheral edema (-0.4), and hirsutism (-2.6), all secondary endpoints of the pivotal trial (P<0.03 for all), reported Maria Fleseriu, MD, of Oregon Health and Science University in Portland. "We're looking forward to see
  6. A simple test that measures free cortisol levels in saliva at midnight — called a midnight salivary cortisol test — showed good diagnostic performance for Cushing’s syndrome among a Chinese population, according to a recent study. The test was better than the standard urine free cortisol levels and may be an alternative for people with end-stage kidney disease, in whom measuring cortisol in urine is challenging. The study, “Midnight salivary cortisol for the diagnosis of Cushing’s syndrome in a Chinese population,” was published in Singapore Medical Journal. Cushing’s syndrome,
  7. Patients with subclinical hypercortisolism, i.e., without symptoms of cortisol overproduction, and adrenal incidentalomas recover their hypothalamic-pituitary-adrenal (HPA) axis function after surgery faster than those with Cushing’s syndrome (CS), according to a study. Moreover, the researchers found that an HPA function analysis conducted immediately after the surgical removal of adrenal incidentalomas — adrenal tumors discovered by chance in imaging tests — could identify patients in need of glucocorticoid replacement before discharge. Using this approach, they found that most sub
  8. A patient with depression developed Cushing’s syndrome (CS) because of a rare ACTH-secreting small cell cancer of the prostate, a case study reports. The case report, “An unusual cause of depression in an older man: Cushing’s syndrome resulting from metastatic small cell cancer of the prostate,” was published in the “Lesson of the Month” section of Clinical Medicine. Ectopic CS is a condition caused by an adrenocorticotropic hormone (ACTH)-secreting tumor outside the pituitary or adrenal glands. The excess ACTH then acts on the adrenal glands, causing them to produce too much cortiso
  9. I think I knew this already but it's still hard to read in print Functional remission did not occur in most patients with Cushing syndrome who were considered to be in biochemical and clinical remission, according to a study published in Endocrine. This was evidenced by their quality of life, which remained impaired in all domains. The term “functional remission” is a psychiatric concept that is defined as an “association of clinical remission and a recovery of social, professional, and personal levels of functioning.” In this observational study, investigators sought to deter
  10. Metyrapone treatments helped patients with Cushing syndrome reach normal, urinary-free cortisol levels in the short-term and also had long-term benefits, according to a study published in Endocrine. This observational, longitudinal study evaluated the effects of the 11β -hydroxylase inhibitor metyrapone on adult patients with Cushing syndrome. Urinary-free cortisol and late-night salivary cortisol levels were evaluated in 31 patients who were already treated with metyrapone to monitor cortisol normalization and rhythm. The average length of metyrapone treatment was 9 months, and 6 pa
  11. Thomas “Tommy” F. Zachman, of Windsor, formerly of Toledo, Ohio, died suddenly and unexpectedly at University Hospital in Denver on June 3, 2010, complications of Cushing’s Syndrome. Read more at https://cushingsbios.com/2015/06/03/in-memory-thomas-f-zachman-1950-2010-2/
  12. Children with Cushing’s syndrome are at risk of developing new autoimmune and related disorders after being cured of the disease, a new study shows. The study, “Incidence of Autoimmune and Related Disorders After Resolution of Endogenous Cushing Syndrome in Children,” was published in Hormone and Metabolic Research. Patients with Cushing’s syndrome have excess levels of the hormone cortisol, a corticosteroid that inhibits the effects of the immune system. As a result, these patients are protected from autoimmune and related diseases. But it is not known if the risk rises after their
  13. Measuring cortisol levels in saliva multiple times a day is a convenient and useful way to determine the best course of treatment for patients with Cushing’s syndrome, a preliminary study shows. The research, “Multiple Salivary Cortisol Measurements Are a Useful Tool to Optimize Metyrapone Treatment in Patients with Cushing’s Syndromes Treatment: Case Presentations,” appeared in the journal Frontiers of Endocrinology. Prompt and effective treatment for hypercortisolism — the excessive amount of cortisol in the blood — is essential to lowering the risk of Cushing’s-associated conditio
  14. Addison’s disease: Hyperpigmentation is a classic symptom of Addison’s disease, an endocrine disorder in which the adrenal glands fails to produce steroid hormone. The disease causes darkening of the skin in certain areas. Cushing’s syndrome: The abnormal amount of cortisol in the human body causes a condition known as the Cushing’s syndrome. And one of the symptoms of the disorder is hyperpigmentation of the skin. Adapted from http://www.thehealthsite.com/diseases-conditions/health-conditions-that-can-cause-hyperpigmentation/
  15. Ectopic Cushing’s syndrome can be challenging to diagnose, especially when it comes identifying the problem source. But appropriate hormone management protocols, used in combination with advanced imaging methods, may help physicians identify ectopic ACTH-producing tumors. The findings in a case report of a young man with ectopic Cushing’s syndrome were published in the International Journal of Surgery Case Reports, under the title “Case report: Ectopic Cushing’s syndrome in a young male with hidden lung carcinoid tumor.” Cushing’s syndrome is caused by high amounts of glucocoticoster
  16. The effects of obesity on the diagnosis of Cushing’s syndrome and strategies to alter the traditional approaches have been addressed in a new review study. The study, “Diagnosis and Differential Diagnosis of Cushing’s Syndrome,” appeared in The New England Journal of Medicine. The author was Dr. Lynn D. Loriaux, MD and PhD, and a professor of medicine at the Division of Endocrinology, Diabetes and Clinical Nutrition at the School of Medicine, Oregon Health & Science University (OHSU), in Portland, Oregon. Traditionally, exams of patients with glucocorticoid excess focused on the
  17. By Tori Rodriguez, MA, LPC In the early 20th century, the term "pluriglandular syndrome" was coined by Harvey Cushing to describe the disorder that results from chronic tissue exposure to excessive levels of glucocorticoids.1 Now called Cushing's syndrome, the condition affects an estimated 10-15 million people annually, most often women and individuals between the ages of 20 and 50 years.2 Risk factors and common comorbidities include hypertension, obesity, osteoporosis, uncontrolled diabetes, depression, and anxiety.3 Presentation The clinical presentation of the disorder
  18. Diagnosing Cushing’s syndrome can take 24 hours of complicated and repeated analysis of blood and urine, brain imaging, and tissue samples from sinuses. But that may soon be in the past: National Institutes of Health (NIH) researchers have found that measuring cortisol levels in hair samples can do the same job faster. Patients with Cushing’s syndrome have a high level of cortisol, perhaps from a tumor of the pituitary or adrenal glands, or as a side effect from medications. In the study, 36 participants—30 with Cushing’s syndrome, six without—provided hair samples divided into three equ
  19. "As a potential solution to the limitations of these tests, hair cortisol has been increasingly studied as an additional means to diagnose patients with Cushing Syndrome. Much like hemoglobin A1C is a longitudinal marker of blood glucose levels, hair cortisol can be a measure of the body's glucocorticoid levels over the previous several weeks to months." Read more at https://cushieblog.com/2017/02/09/hair-test-for-cushing-syndrome/
  20. DESCRIPTION This trial is testing the safety and effectiveness of a new investigational drug for the treatment of Cushing's Syndrome. Under the supervision of qualified physicians, cortisol levels and symptoms of Cushing’s Syndrome will be closely followed along with any signs of side effects. The link below will take you to the trial website where you can review additional information and the patient screener. http://curec.lk/1X0J6kT
  21. Well I am having problems for the last week. I am having pains in my joints and muscles again, like when I was weaning off the hydro. In the morning it is a little better but the evenings are getting untolerable. Tried to call my PC this morning but have not been able to get through to her. I want to order salivary test, morning cortisol draw and thyroid tests. I'm so tired of all this, and my weight loss has stopped. How discouraging. Going to post on the forum see if I can get any advice. Hanging in there, Renata
  22. Well once again its been a while since I posted. Now I am feeling better. Not there yet but definately better. I still have some aches especially in the morning when I get up. My right arm feels like I have carpral tunnel, my two fingers keep falling asleep. I sleep at night with an arm brace and take it off in the daytime. I believe it is getting better. I also have tennis elbow, and that started acting up, but I know not to pick up heavy things until the pain subsides. I stopped taking ibuprofen, because it too was an anti inflammatory and I did want my body to heal on its own. So
  23. Well as you can tell it's been a while since I have blogged. I went through withdrawals from weaning off hydro and the body aches and pains were very painful. I have found ibuprofen helps. On March 17th I had the ACTH stim test and the next day my endo called and said my right adrenal was working, and I could stop taking the hydro. I had weaned down to 5mg a day. Even now though I get pains in my body still....especially in the evenings. If it gets bad I take ibuprofen again! So far so good. I have begun to lose weight, however so slowly. Only 4 lbs so far. 60 more to go.
  24. Best night so far last night. took lorazepam and ibprofen and slept the most i have so far. Had a 2 and half hour nap today also. Wonderful feeling to sleep. so i guess i am ready and possibly on my way UP...? Just had to share the good news.
  25. Well i am taking 20mg hydro in the AM and 15 hydro in the evening now. So far so good. taking ibuprofen for stiffness and soreness, and lorazepam to rest. I was taking some hydrocodone for pain but honestly, it makes me feel worse than why i am taking it. Ibuprofen does just fine. I still get dried out alot, needs lots to drink. My bp is great, and pulse is now staying under 100. Still having issues with blood sugar but will work on that next. I slept well last night, despite the soreness from turning over. And had an hour nap today. Much better. Even though when I woke up this morning
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