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Found 11 results

  1. NotSoCushie

    awareness

    On Dec 12th, I am speaking at a sold-out event and telling half of a funny story, then posting it on YouTube, To hear the rest of the story people have to go to my website which is all about Cushing's disease. Every day I see people who I am certain have Cushing's but don't know it. I want to reach these people and the general public. What title can I use for my video? I need your help with this. The story is much like Abbott and Costello's Who's on second, what's on third routine. But there has to be a connection to cushing's. So far, I have: Is it obesity or Cushing's disease? When I get the title and post the video, I need the support of everyone here to view it and go to my website. If you could share and get family and friends to do the same that would be greatly appreciated. Wouldn't it be great if the video went viral and so many people would learn about Cushing's? We can make this happen if I get your support. Thanks everyone. Keep working on a better tite for me. Can't wait to see your suggestions. Thanks again. jan
  2. I am looking for some place like The Mayo clinic or Endocrinologists that would be interested in setting up a dietary study with their Cushing's patients, I am having great success with my specialized diet in lessening the symptoms of cushing's and want to help others get a better quality of life while living with this disease. The first picture is me with Cushing's in 2013 before surgery. the next two pictures are me now with a cushing's recurrence while on my specialized diet. For 3 years I used my body as a science experiment with foods. I don't have a moon face, I have not gained any weight, my girth is much less and my energy and strength are much better than the first time I had Cushing's. The only difference is my diet. For 2 years my endo refused to test me for cushing's again because I did not look the way I should. I had to get other doctors to do the first and secong level tests then I brought those results to my endo and asked him to do the dex suppression test. All tests confirmed Cushing's recurrence. He still won't believe me that my diet has anything to do with the way I look or feel. I am the proof, but he still wont beieve me. What will it take for people to listen to us and believe us????
  3. until
    Presented by Irina Bancos, MD Assistant Professor of Medicine Endocrinology Department Mayo Clinic, Rochester, MN Space is limited. Reserve your webinar seat. After registering you will receive a confirmation email containing information about joining the webinar. Contact us at webinar@pituitary.org if you have any questions. Date: Tuesday, May 28, 2019 Time: 10:00 AM - 11:00 AM Pacific Daylight Time, 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description Learning Objectives: To distinguish between primary and secondary adrenal insufficiency To understand the pitfalls of current diagnostic tests to diagnose adrenal insufficiency. To describe physiological replacement therapy for adrenal insufficiency To distinguish between adrenal insufficiency and glucocorticoid withdrawal syndrome. Presenter Bio Dr. Irina Bancos is the Assistant Professor of Medicine and works in the Pituitary-Adrenal-Gonadal subdivision of Endocrinology division at Mayo Clinic, Rochester. She also serves as Director of the Endocrine testing center. Dr. Bancos received her M.D. from the Iuliu Hatieganu Medical University in Cluj-Napoca, Romania. She has completed her Internal Medicine Residency at Danbury Hospital in CT and Endocrinology Fellowship at Mayo Clinic, Rochester. In addition, Dr. Bancos completed a two year research fellowship (Mayo Foundation Scholarship) at the University of Birmingham, United Kingdom where she received training in steroid profiling and adrenal disorders. In 2015 she returned to Mayo Clinic, where her clinical and research interests include adrenal and pituitary tumors, adrenal insufficiency, congenital adrenal hyperplasia, Cushing syndrome, and mechanisms of steroid regulation of metabolism. Between 2015 and 2018, Dr. Bancos was the principal investigator and leader of the Transform the Adrenal Practice team at Mayo Clinic. Dr. Bancos has published 77 scientific articles. In addition to clinical practice in the pituitary-adrenal-gonadal clinic, Dr. Bancos enjoys teaching fellows, residents and medical students. She is the principal investigator of several ongoing prospective studies in Cushing syndrome, adrenal insufficiency, prolactinoma, and adrenal tumors. Dr. Bancos currently holds several grants in the field of steroid regulation of aging, metabolism and body composition.
  4. Presented by Irina Bancos, MD Assistant Professor of Medicine Endocrinology Department Mayo Clinic, Rochester, MN Space is limited. Reserve your webinar seat. After registering you will receive a confirmation email containing information about joining the webinar. Contact us at webinar@pituitary.org if you have any questions. Date: Tuesday, May 28, 2019 Time: 10:00 AM - 11:00 AM Pacific Daylight Time, 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description Learning Objectives: To distinguish between primary and secondary adrenal insufficiency To understand the pitfalls of current diagnostic tests to diagnose adrenal insufficiency. To describe physiological replacement therapy for adrenal insufficiency To distinguish between adrenal insufficiency and glucocorticoid withdrawal syndrome. Presenter Bio Dr. Irina Bancos is the Assistant Professor of Medicine and works in the Pituitary-Adrenal-Gonadal subdivision of Endocrinology division at Mayo Clinic, Rochester. She also serves as Director of the Endocrine testing center. Dr. Bancos received her M.D. from the Iuliu Hatieganu Medical University in Cluj-Napoca, Romania. She has completed her Internal Medicine Residency at Danbury Hospital in CT and Endocrinology Fellowship at Mayo Clinic, Rochester. In addition, Dr. Bancos completed a two year research fellowship (Mayo Foundation Scholarship) at the University of Birmingham, United Kingdom where she received training in steroid profiling and adrenal disorders. In 2015 she returned to Mayo Clinic, where her clinical and research interests include adrenal and pituitary tumors, adrenal insufficiency, congenital adrenal hyperplasia, Cushing syndrome, and mechanisms of steroid regulation of metabolism. Between 2015 and 2018, Dr. Bancos was the principal investigator and leader of the Transform the Adrenal Practice team at Mayo Clinic. Dr. Bancos has published 77 scientific articles. In addition to clinical practice in the pituitary-adrenal-gonadal clinic, Dr. Bancos enjoys teaching fellows, residents and medical students. She is the principal investigator of several ongoing prospective studies in Cushing syndrome, adrenal insufficiency, prolactinoma, and adrenal tumors. Dr. Bancos currently holds several grants in the field of steroid regulation of aging, metabolism and body composition.
  5. Metoclopramide, a gastrointestinal medicine, can increase cortisol levels after unilateral adrenalectomy — the surgical removal of one adrenal gland — and conceal adrenal insufficiency in bilateral macronodular adrenal hyperplasia (BMAH) patients, a case report suggests. The study, “Retention of aberrant cortisol secretion in a patient with bilateral macronodular adrenal hyperplasia after unilateral adrenalectomy,” was published in Therapeutics and Clinical Risk Management. BMAH is a subtype of adrenal Cushing’s syndrome, characterized by the formation of nodules and enlargement of both adrenal glands. In this condition, the production of cortisol does not depend on adrenocorticotropic hormone (ACTH) stimulation, as usually is the case. Instead, cortisol production is triggered by a variety of stimuli, such as maintaining an upright posture, eating mixed meals — those that contain fats, proteins, and carbohydrates — or exposure to certain substances. A possible treatment for this condition is unilateral adrenalectomy. However, after the procedure, some patients cannot produce adequate amounts of cortisol. That makes it important for clinicians to closely monitor the changes in cortisol levels after surgery. Metoclopramide, a medicine that alleviates gastrointestinal symptoms and is often used during the postoperative period, has been reported to increase the cortisol levels of BMAH patients. However, the effects of metoclopramide on BMAH patients who underwent unilateral adrenalectomy are not clear. Researchers in Japan described the case of a 61-year-old postmenopausal woman whose levels of cortisol remained high after surgery due to metoclopramide ingestion. The patient was first examined because she had experienced high blood pressure, abnormal lipid levels in the blood, and osteoporosis for ten years. She also was pre-obese. She was given medication to control blood pressure with no results. The lab tests showed high serum cortisol and undetectable levels of ACTH, suggesting adrenal Cushing’s syndrome. Patients who have increased cortisol levels, but low levels of ACTH, often have poor communication between the hypothalamus, the pituitary, and the adrenal glands. These three glands — together known as the HPA axis — control the levels of cortisol in healthy people. Imaging of the adrenal glands revealed they were both enlarged and presented nodules. The patient’s cortisol levels peaked after taking metoclopramide, and her serum cortisol varied significantly during the day while ACTH remained undetectable. These results led to the BMAH diagnosis. The doctors performed unilateral adrenalectomy to control cortisol levels. The surgery was successful, and the doctors reduced the dose of glucocorticoid replacement therapy on day 6. Eight days after the surgery, however, the patient showed decreased levels of fasting serum cortisol, which indicated adrenal insufficiency — when the adrenal glands are unable to produce enough cortisol. The doctors noticed that metoclopramide was causing an increase in serum cortisol levels, which made them appear normal and masked the adrenal insufficiency. They stopped metoclopramide treatment and started replacement therapy (hydrocortisone) to control the adrenal insufficiency. The patient was discharged 10 days after the surgery. The serum cortisol levels were monitored on days 72 and 109 after surgery, and they remained lower than average. Therefore she could not stop hydrocortisone treatment. The levels of ACTH remained undetectable, suggesting that the communication between the HPA axis had not been restored. “Habitual use of metoclopramide might suppress the hypothalamus and pituitary via negative feedback due to cortisol excess, and lead to a delayed recovery of the HPA axis,” the researchers said. Meanwhile, the patient’s weight decreased, and high blood pressure was controlled. “Detailed surveillance of aberrant cortisol secretion responses on a challenge with exogenous stimuli […] is clinically important in BMAH patients,” the study concluded. “Caution is thus required for assessing the actual status of the HPA axis.” From https://cushingsdiseasenews.com/2019/05/07/metoclopramide-conceals-adrenal-insufficiency-after-gland-removal-bmah-patients-case-report/
  6. The use of an insulin pump to deliver continuous pulsatile cortisol may be a viable treatment option in patients with severe adrenal insufficiency who are unresponsive to oral corticosteroids, according to study results presented at the 28th Annual Congress of the American Association of Clinical Endocrinologists, held April 24 to 28, 2019, in Los Angeles, California. According to the investigators, increasing oral steroid doses may be required to prevent adrenal crisis in patients with adrenal insufficiency. However, in light of the associated side effects of long-term use of steroids, an alternative treatment method is needed. Insulin pumps, typically used to treat patients with diabetes, can be used to deliver steroids and may provide symptom control, prevent adrenal crisis, and lower required corticosteroid dose. The current study enrolled patients with adrenal insufficiency who could not absorb oral corticosteroid treatment or were not responding to treatment. Of 118 patients with adrenal insufficiency, 6 patients were switched to pump treatment. The results indicated that the use of cortisol pumps was associated with a 78.5% risk reduction for adrenal crisis compared with oral corticosteroids. As hydrocortisone dose was gradually tapered using the cortisol pump, there was a mean dose reduction of 62.77 mg compared with oral corticosteroid therapy. The researchers noted that in addition to reducing the number of adrenal crises, use of a cortisol pump was found to be associated with better symptom control and quality of life. “Continuous pulsatile cortisol replacement via pump is an option for management of severe adrenal insufficiency in patients unresponsive to oral therapy,” concluded the researchers. Reference Khalil A, Ahmed F, Alzohaili O. Insulin pump for adrenal insufficiency, a novel approach to the use of insulin pumps to deliver corticosteroids in patients with poor cortisol absorption. Presented at: American Association of Clinical Endocrinologists 28th Annual Scientific & Clinical Congress; April 24-28, 2019; Los Angeles, CA. From https://www.endocrinologyadvisor.com/home/conference-highlights/aace-2019/cortisol-pumps-may-be-viable-option-to-reduce-adrenal-crisis-in-severe-adrenal-insufficiency/
  7. until
    13th Annual Conference for Adults with Endocrine Disorders in Partnership with Barrow Neurological Institute Pituitary Center February 28th, 2019 - March 3rd, 2019 Phoenix, Arizona Schedule of Events Thursday 5:00 pm - 7:00 pm Welcome Reception, Wyndham Garden Phoenix Midtown Friday 9:00 am - 4:00 pm Exhibitors, Barrow Pituitary Center 10:00 am - 12:00 pm Educational Segments, Barrow Pituitary Center 12:00 am - 1:00 pm Lunch (included) 1:00 pm - 3:00 pm Educational Segments, Barrow Pituitary Center 5:00 pm - 8:00 pm Group outing to Scottsdale Waterfront Saturday 10:00 am - 12:00 pm Educational Segments, Barrow Pituitary Center 12:00 am - 1:00 pm Lunch (included) 1:00 pm - 3:30 pm Educational Segments, Barrow Pituitary Center Sunday 9:00 am - 1:30 pm Educational Segments, Wyndham Garden Phoenix Midtown ********************************************************** Friday Educational Segments at Barrow Pituitary Center 10:00 am Managing Cushings: Navigating Through the Maze, Yuen or 10:00 am Managing AGHD: Daily and Beyond, Knecht 11:00 am Hypothalamic Obesity: Not Just Calories In, Calories Out, Connor 12:00 pm LUNCH (included) 1:00 pm Me, Myself and My Adrenal Insufficiency, Yuen 2:00 pm Navigating the Medical Maze, Herring Saturday Educational Segments at Barrow Pituitary Center 10:00 am Beyond AGHD and Cushings: Familial and Genetic Factors, Stratakis 11:00 am Q&A, Stratakis 12:00 pm LUNCH (included) 1:00 pm Tools for Coping with my Endocrine Disorder, Jonas 2:00 pm Finnigan and Friends: A Year in AI Training, Palmer 2:30 pm Quality of Life Study, Cushings, Edgar & Keil or 2:30 pm Life is What You Make Of It, Jones Sunday Educational Segments at Wyndham Garden Phoenix Midtown 9:00 am Preventing Muscle Wasting and Nutrition, Fine 10:00 am Nuances of Treating Hypothyroidism, Friedman 11:00 am Macrilen Stimulation Test for Growth Hormone Deficiency, Friedman 11:45 am The New and The Old for Diagnosing Cushing's Syndrome, Friedman 12:30 pm Ask the Wiz, Friedman Location Barrow Neurological Institute at St. Joseph's Hospital and Medical Center Goldman Auditorium and Sonntag Pavilion 350 W. Thomas Rd. Phoenix, AZ 85013 Transportation will be provided on Friday and Saturday between the Wyndham Hotel to Barrow for an hour prior to the segments and an hour after close of the segments. The hotel is approximately 1/2 mile away from Barrow Pituitary Center if you choose to walk or travel there on your own. Hotel Room Rates and Reservations Wyndham Garden Phoenix Midtown 3600 N. 2nd Ave. Phoenix, AZ 85013 $109 per night + tax. Includes free wifi, parking and buffet breakfast To make hotel reservations call 602-604-4900 and ask for The MAGIC Foundation guest room block. Refrigerators are first come so be sure to request one when making your reservation. Airport Transportation Transportation is not provided to/from the hotel from the airport. The Wyndham is approximately 9 miles from the airport. Preferred airport is Phoenix, AZ - PHX - Sky Harbor Intl. Deadline to Register and book your hotel is January 28, 2019 View the entire PDF Program
  8. MaryO

    Last Day to Register

    13th Annual Conference for Adults with Endocrine Disorders in Partnership with Barrow Neurological Institute Pituitary Center February 28th, 2019 - March 3rd, 2019 Phoenix, Arizona Schedule of Events Thursday 5:00 pm - 7:00 pm Welcome Reception, Wyndham Garden Phoenix Midtown Friday 9:00 am - 4:00 pm Exhibitors, Barrow Pituitary Center 10:00 am - 12:00 pm Educational Segments, Barrow Pituitary Center 12:00 am - 1:00 pm Lunch (included) 1:00 pm - 3:00 pm Educational Segments, Barrow Pituitary Center 5:00 pm - 8:00 pm Group outing to Scottsdale Waterfront Saturday 10:00 am - 12:00 pm Educational Segments, Barrow Pituitary Center 12:00 am - 1:00 pm Lunch (included) 1:00 pm - 3:30 pm Educational Segments, Barrow Pituitary Center Sunday 9:00 am - 1:30 pm Educational Segments, Wyndham Garden Phoenix Midtown ********************************************************** Friday Educational Segments at Barrow Pituitary Center 10:00 am Managing Cushings: Navigating Through the Maze, Yuen or 10:00 am Managing AGHD: Daily and Beyond, Knecht 11:00 am Hypothalamic Obesity: Not Just Calories In, Calories Out, Connor 12:00 pm LUNCH (included) 1:00 pm Me, Myself and My Adrenal Insuffiency, Yuen 2:00 pm Navigating the Medical Maze, Herring Saturday Educational Segments at Barrow Pituitary Center 10:00 am Beyond AGHD and Cushings: Familial and Genetic Factors, Stratakis 11:00 am Q&A, Stratakis 12:00 pm LUNCH (included) 1:00 pm Tools for Coping with my Endocrine Disorder, Jonas 2:00 pm Finnigan and Friends: A Year in AI Training, Palmer 2:30 pm Quality of Life Study, Cushings, Edgar & Keil or 2:30 pm Life is What You Make Of It, Jones Sunday Educational Segments at Wyndham Garden Phoenix Midtown 9:00 am Preventing Muscle Wasting and Nutrition, Fine 10:00 am Nuances of Treating Hypothyroidism, Friedman 11:00 am Macrilen Stimulation Test for Growth Hormone Defiency, Friedman 11:45 am The New and The Old for Diagnosing Cushing's Syndrome, Friedman 12:30 pm Ask the Wiz, Friedman Location Barrow Neurological Institute at St. Joseph's Hospital and Medical Center Goldman Auditorium and Sonntag Pavilion 350 W. Thomas Rd. Phoenix, AZ 85013 Transportation will be provided on Friday and Saturday between the Wyndham Hotel to Barrow for an hour prior to the segments and an hour after close of the segments. The hotel is approximately 1/2 mile away from Barrow Pituitary Center if you choose to walk or travel there on your own. Hotel Room Rates and Reservations Wyndham Garden Phoenix Midtown 3600 N. 2nd Ave. Phoenix, AZ 85013 $109 per night + tax. Includes free wifi, parking and buffet breakfast To make hotel reservations call 602-604-4900 and ask for The MAGIC Foundation guest room block. Refrigerators are first come so be sure to request one when making your reservation. Airport Transportation Transportation is not provided to/from the hotel from the airport. The Wyndham is approximately 9 miles from the airport. Preferred airport is Phoenix, AZ - PHX - Sky Harbor Intl. Deadline to Register and book your hotel is January 28, 2019 View the entire PDF Program
  9. MaryO

    Rare Disease Day

    What am I doing for Rare Disease Day? For me, it's more that one day out of the year. Each and every day since 1987, I tell anyone who will listen about Cushing’s. I pass out a LOT Cushing’s business cards and brochures. Adding to websites, blogs and more that I have maintained continuously since 2000 - at mostly my own expense. Posting on the Cushing's Help message boards about Rare Disease Day. I post there most every day. Tweeting/retweeting info about Cushing’s and Rare Disease Day today. Adding info to one of my blogs about Cushing’s and Rare Disease Day. Adding new and Golden Oldies bios to another blog, again most every day. Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April...and will anyone else participate? And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!) ~~~ Why am I so passionate about Rare Disease Day? I had Cushing's Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a "success" but I still deal with the aftereffects of Cushing's and of the surgery itself. I also had another Rare Disease - Kidney Cancer, rare in younger, non-smoking women. And then, there's the adrenal insufficiency... And growth hormone deficiency... If you're interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/ HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
  10. Patients with different subtypes of Cushing’s syndrome (CS) have distinct plasma steroid profiles. This could be used as a test for diagnosis and classification, a German study says. The study, “Plasma Steroid Metabolome for Diagnosis and Subtyping Patients with Cushing Syndrome,” appeared in the journal Clinical Chemistry. A quick diagnosis of CS is crucial so that doctors can promptly give therapy. However, diagnosing CS is often complicated by the multiple tests necessary not just to diagnose the disease but also to determine its particular subtype. Cortisol, which leads to CS when produced at high levels, is a steroid hormone. But while earlier studies were conducted to determine whether patients with different subtypes of CS had distinct steroid profiles, the methods researchers used were cumbersome and have been discontinued for routine use. Recently, a technique called LC-MS/MS has emerged for multi-steroid profiling in patients with adrenocortical dysfunction such as congenital adrenal hyperplasia, adrenal insufficiency and primary aldosteronism. Researchers at Germany’s Technische Universität in Dresden used that method to determine whether patients with the three main subtypes of CS (pituitary, ectopic and adrenal) showed differences in plasma steroid profiles. They measured levels of 15 steroids produced by the adrenal glands in single plasma samples collected from 84 patients with confirmed CS and 227 age-matched controls. They found that CS patients saw huge increases in the plasma steroid levels of 11-deoxycortisol (289%), 21-deoxycortisol (150%), 11-deoxycorticosterone (133%), corticosterone (124%) and cortisol (122%), compared to patients without the disease. Patients with the ectopic subtype had the biggest jumps in levels of these steroids. However, plasma 18-oxocortisol levels were particularly low in ectopic disease. Other steroids demonstrated considerable variation. Patients with the adrenal subtype had the lowest concentration of dehydroepiandrosterone (DHEA) and DHEA-SO4, which are androgens. Patients with the ectopic and pituitary subtype had the lowest concentration of aldosterone. Through the use of 10 selected steroids, patients with different subtypes of CS could be identified almost as closely as with other tests, including the salivary and urinary free cortisol test, the dexamethasone-suppressed cortisol test, and plasma adrenocorticotropin levels. The misclassification rate using steroid levels was 9.5 percent, compared to 5.8 percent in other tests. “This study using simultaneous LC-MS/MS measurements of 15 adrenal steroids in plasma establishes distinct steroid metabolome profiles that might be useful as a test for CS,” the team concluded, adding that using LC-MS/MS is advantageous, as specimen preparation is simple and the entire panel takes 12 minutes to run. This means it could be offered as a single test for both identification and subtype classification. From https://cushingsdiseasenews.com/2018/01/02/plasma-steroid-levels-used-screen-diagnosis-subtyping-patients-cushing-syndrome/
  11. The New Jersey Department of Health passed a waiver in October of last year that allows ambulances to carry Solu-Cortef, for the purposes of treating an adrenal crisis. As a result, New Jersey ambulances can be better prepared to treat adrenal insufficiency. This news was brought to NADF by Karen Fountain of the CARES Foundation, who has been helping push state health directors to accept protocols to help treat adrenal insufficient patients during an emergency. Adrenal insufficient people in New Jersey should contact their local EMS to make them aware of the waiver, and encourage them to carry Solu-Cortef in their ambulances. The hope is that other states, and eventually the entire coun- try and beyond, will start having their ambulances carry the needed medication to treat adrenal crisis. http://www.nadf.us
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