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  1. 2 points
    It sure sounds like you're on the right track!
  2. 2 points
    I received my dictation from Doctor F.. I pray that I am on the road to a diagnosis. I don’t know how much more of this I can take.
  3. 2 points
    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/
  4. 2 points
    I never had a hump but still had Cushing's. Unfortunately your symptoms (and most Cushing's symptoms) can also be caused by other medical conditions so it's important to test everything and if you're concerned about Cushing's I would do some cortisol testing if you haven't already. Have you done any 24 hour urinary free cortisol tests? or had your ACTH checked?
  5. 1 point
    I would be very interested to learn the current status of any Disability Claim for Agent Orange with Cushing. My 47 year old daughter had surgery in 2008 for unilateral adrenal Cushings in Orlando, FL. Frank
  6. 1 point
    Presented by Nathan T Zwagerman MD Director of Pituitary and Skull base surgery Department of Neurosurgery Medical College of Wisconsin After registering you will receive a confirmation email with details about joining the webinar. Date: Wednesday, August 21, 2019 Time: 10:00 AM - 11:00 AM Pacific Daylight Time 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description: Learning Objectives: Describe the signs and symptoms of Cushing's Disease Describe the work up for patients with Cushing's Disease Understand the goals, risks, and expected outcomes for treatment Describe alternative treatments when surgery is not curative. Presenter Bio: Dr. Zwagerman is a Professor of Neurosurgery at the Medical College of Wisconsin. He did his undergraduate work in psychology at Calvin College in Grand Rapids, Michigan. He earned his medical degree at Wayne State University in Detroit. He did his fellowship in endoscopic and open cranial base surgery, and then his residency in neurological surgery at the University of Pittsburgh Medical Center.
  7. 1 point
    Dr. Theodore Friedman hosts Gautam Mehta, MD for a fascinating webinar on Approaches for Pituitary Surgery Dr. Mehta is a neurosurgeon specializing in pituitary surgery at the House Clinic in Los Angeles. He was trained by Ian McCutcheon, MD and Ed Oldfield, MD Topics to be discussed include: • How does Dr. Friedman diagnose Cushing’s Disease • How does Dr. Friedman determine who goes to surgery? • What type of patients need surgery besides those with Cushing’s Disease? • How do the neurosurgeon and the Endocrinologist work together? • How does the neurosurgeon read pituitary MRIs? • What types of surgical approaches are used for pituitary surgery? • How long does surgery take and how long will a patient be in the hospital? • What are the risks of pituitary surgery and how can they be minimized? Sunday • August 4 • 6 PM PDT Click here to start your meeting. or https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=ma1d8d5ef99605e305980e2f7cdfdb7bd OR Join by phone: (855) 797-9485 Meeting Number (Access Code): 807 028 597 Your phone/computer will be muted on entry. Slides will be available on the day of the talk at slides There will be plenty of time for questions using the chat button. Meeting Password: hormones For more information, email us at mail@goodhormonehealth.com
  8. 1 point
    I am cured (for now)!
  9. 1 point
    hi mary, i got a date for the IPPS procedure at the mayo clinic with Dr. Irina Bancos for July 2! I feel like Im halfway there to getting better...Im choosing to believe! Lili
  10. 1 point
    Keynote Speaker: Maria Fleseriu, MD FACE Registration Cost: Individual $40 Save $20 and register for 2: $60 Please email carol@pituitary.org to register! *This registration is for the Patient Symposium only. The Ohio State University is offering a CME Course separate from our Symposium. For information on the CME course go to ccme.osu.edu OSU Pituitary Symposium Agenda Saturday, July 13, 2019 Patients and Family’s Track Gabbe Conference Room – James L045 8:00 AM Registration and Breakfast 8:20 AM Welcoming Remarks and Introductions: The OSU Skull Base and Pituitary Team Lawrence Kirschner, MD, PhD OSUCCC - James 8:30 AM Hypopituitarism: Pitfalls and Recommendations Maria Fleseriu, MD, FACE Oregon Health and Science University 9:00 AM Trans-sphenoidal Approach: What to Expect? Post-Operative Complications Richard Carrau, MD OSUCCC - James 9:30 AM Acromegaly: Why it Takes That Long to Diagnose? What are the Options? Lawrence Kirschner, MD, PhD OSUCCC - James 10:00 AM Round Table Q & A 10:15 AM Mid-Morning Break 10:30 AM Growth Hormone Deficiency: Journey to Adulthood Robert Hoffman Nationwide Children's Hospital 11:00 AM Radiation Therapy? Difference Between Modalities and Possible Risks Dukagjin M Blakaj, MD, PhD OSUCCC - James 11:30 AM Round Table Q & A 11:45 AM Lunch Break and Patient's Journey 12:45 AM Surgical Approach: What to Expect Daniel Prevedello, MD Douglas Hardesty, MD OSUCCC - James 1:15 PM Visual Complications of Pituitary/Sellar Lesion? Predictors of Outcome Abbe Craven, MD OSUCCC - James 1:45 PM Round Table Q & A 2:00 PM Pituitary Trivia Luma Ghalib, MD Brian Lee OSUCCC - James 2:30 PM Pituitary Dysfunction: Effect on Mental Health and Family William Malarkey, MD OSUCCC - James 3:00 PM Recovering from Trans-sphenoidal Surgery, Challenges for the Patient and their Families Traci Douglass, RN OSUCCC - James 3:30 PM Pituitary Network Association: Cushing's Disease: Psychological Research and Clinical Implications Jessica Diller Kovler, AM, MA, PhD PNA Board Member 4:00 PM Closing Remarks 4: 15 PM Adjourn
  11. 1 point
    I am currently looking into what seems to be a limited study. Can i ask if any Cushies have been tested for Alpha 1 antitrypsin deficiency and then where diagnosed with Cushing's. Or Were treated for Cushing's, now in remission but experiencing lung issues or found to have liver issues..... have since been tested for A1AD and found to be deficient? I am looking for any studies, papers, personal stories in this area. Any info would be gratefully accepted.
  12. 1 point
    Dr. Theodore Friedman hosts Jay Khorsandi, DDS and Barbara Burggraaff, MD from Snore Experts for an important webinar on insomnia Topics to be discussed include: • What are the causes of insomnia? • How do hormone imbalances lead to insomnia? • What lifestyle changes can you do to help with insomnia? • What supplements are helpful for insomnia? • What medicines are helpful for insomnia? Sunday • June 2nd • 6 PM PST Click here on start your meeting.or https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m2f7d9547a80ec47e43869517ef006f34 OR Join by phone: (855) 797-9485 Meeting Number (Access Code): 807 924 444 Meeting Password: hormones Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button. For more information, email us at mail@goodhormonehealth.com
  13. 1 point
    I'm so sorry to read this, Donna I'll never understand how a doctor can't "believe in" a disease. Boggles my mind. I sure hope Dr. F can help you - he's helped so many others over the years. Please keep us posted.
  14. 1 point
    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 the results of further studies and to add this therapy to the landscape of Cushing's," Fleseriu said here during a presentation of the findings at AACE 2019, the annual meeting of the American Association of Clinical Endocrinologists. "We have a newer medication and still we cannot make a dent in the outcomes of Cushing's, especially for patient-reported outcomes." Free testosterone levels significantly decreased in women taking levoketoconazole (a ketoconazole stereoisomer and potent steroidogenesis inhibitor), from an average of 0.32 ng/dL down to 0.12 ng/dL (0.011 to 0.004 nmol/L, P<0.0001). Men had a non-significant increase: 5.1 ng/dL up to 5.8 ng/dL (0.177 to 0.202 nmol/L). There were no significant changes from baseline to the end of maintenance for other secondary endpoints in the analysis: moon facies, facial plethora, striae, bruising, supraclavicular fat, irregular menstruation, and dysmenorrhea. However, significant improvements after 6 months of therapy were seen in patient-reported quality of life compared with baseline (mean 10.6 change on the Cushing QOL questionnaire) as well as a significant reduction in depressive symptoms (mean -4.3 change on the Beck Depression Inventory II). The open-label, multicenter SONICS (Study of Levoketoconazole in Cushing's Syndrome) trial included 94 adult men and women with a confirmed diagnosis of Cushing's syndrome and elevated 24-hour mean urinary free cortisol (mUFC) levels at least 1.5 times the upper limit of normal. In the dose-titration phase of the study (weeks 2 to 21), patients were titrated up to a max dose of 600 mg levoketoconazole twice daily until mUFC normalization. A 6-month maintenance phase followed with no dose increases, but decreases were allowed if adverse events emerged. An additional 6-month extended evaluation phase followed thereafter. The study met it's previously reported primary endpoint, with 30% of patients achieving normalized mUFC levels after 6 months of maintenance therapy without a dose increase (95% CI 21%-40%, P=0.0154). Levoketoconazole was well tolerated, with only 12.8% of patients discontinuing treatment due to adverse events. The most commonly reported adverse events were nausea (31.9%), headache (27.7%), peripheral edema (19.1%), hypertension (17%), and fatigue (16%), some of which were expected due to steroid withdrawal, Fleseriu said. Serious adverse events were reported in 14 patients, including prolonged QTc interval in two patients, elevated liver function in one patient, and adrenal insufficiency in another, events similar to those seen with ketoconazole (Nizoral) therapy. Fleseriu explained that drug-drug interaction is a problem in Cushing's, as all of the available medications prolong QT interval. She noted that in SONICS, QT prolongation with levoketoconazole was observed in few patients. It's still a "concern," said Fleseriu, especially for patients on other drugs that prolong QT. Although not yet approved, levoketoconazole has received orphan drug designation from the FDA and the European Medicines Agency for endogenous Cushing's syndrome. The tentative brand name is Recorlev. The study was supported by Strongbridge Biopharma. Fleseriu reported relationships with Strongbridge, Millendo Therapeutics, and Novartis. Co-authors also disclosed relevant relationships with industry. Primary Source American Association of Clinical Endocrinologists Source Reference: Fleseriu M, et al "Levoketoconazole in the treatment of endogenous Cushing's syndrome: Improvements in clinical signs and symptoms, patient-reported outcomes, and associated biochemical markers in the phase 3 SONICS study" AACE 2019; Poster 369. From https://www.medpagetoday.com/meetingcoverage/aace/79465
  15. 1 point
    Corcept Therapeutics is recruiting participants for its Phase 3 clinical trial evaluating relacorilant as a potential treatment for Cushing’s syndrome-related side effects such as high blood pressure and impaired glucose tolerance. Also, findings from the study “A Randomized-Withdrawal, Placebo-Controlled, Phase 3 Study to Assess the Efficacy and Safety of Selective Glucocorticoid Receptor Antagonist, Relacorilant, in Patients with Cushing Syndrome (GRACE Study),” were presented at the 2019 Annual Meeting of the Endocrine Society (ENDO), in New Orleans, Louisiana. In endogenous Cushing’s syndrome there is an “internal” culprit — usually a benign tumor — that makes the body produce too much of the hormone cortisol. The excessive amount of circulating cortisol can lead to serious problems, such as type 2 diabetes and high blood pressure. Relacorilant is designed to prevent the effects of excess cortisol by blocking one of its receptors, the glucocorticoid receptor. Results from a Phase 2 trial (NCT02804750) suggest that relacorilant may manage the effects of prolonged cortisol excess in Cushing’s patients faster and without the known side effects of approved medications like Korlym (mifepristone). Also, the treatment improved glucose tolerance and improved blood pressure in patients, suggesting it could be used to treat those with endogenous Cushing’s syndrome and concurrent type 2 diabetes mellitus, impaired glucose tolerance, and/or uncontrolled high blood pressure (hypertension). Corcept has now designed the GRACE Phase 3 trial (NCT03697109), a multicenter, double-blind, placebo-controlled, randomized-withdrawal study, to evaluate relacorilant’s safety and effectiveness in these patients. GRACE will be conducted in two stages. First, all patients will be given oral relacorilant each day for 22 weeks, at doses rising from 100 mg to a maximum of 400 mg. Those who complete that stage and show improvements in pre-specified parameters of glucose tolerance or hypertension will move into the second, randomized phase of the trial. Here, they will be randomly assigned to placebo or relacorilant at the same dose they received at the end of the first stage. This new round of treatment will last 12 weeks. Treatment-related adverse events (side effects) also will be assessed for up to 48 weeks (about 11 months) as a main outcome. Additional primary goals include changes in glucose tolerance and blood pressure between the end of the first and second stages of the study. Secondary objectives include identifying the proportion of patients achieving a response in glucose tolerance and high blood pressure criteria and the proportion of those who worsened at the end of the first stage, and the changes in quality of life throughout the study. Researchers plan to enroll 130 people in these U.S. cities: Indianapolis, Indiana; Metairie, Louisiana; Jackson, Mississippi; Albany, New York; Jamaica, New York; Wilmington, North Carolina; Miami, Florida; Summerville, South Carolina; El Paso, Texas; Oklahoma City, Oklahoma, and; Aurora, Colorado. More detailed information is available here. “We look forward to presenting new findings concerning cortisol modulation in patients with hypercortisolism,” Joseph K. Belanoff, MD, Corcept’s CEO, said in a press release.
  16. 1 point
    Dr. Theodore Friedman will be joined by Shira Miller, MD hosting a webinar on New and Traditional Treatments for Male Hypogonadism Spouses welcome Topics to be discussed include: How to Diagnose Male Hypogonadism? Testosterone Replacement HCG and Clomid Treatment Supplements for Male Hypogonadism Diets for Male Hypogonadism Sunday • February 10, 2019 • 6 PM PST Click here to join the meeting or https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m4969cba4e8f0960a9053f2d03a5e56db OR Join by phone: (855) 797-9485 Slides will be available before the webinar at slides Meeting Number (Access Code): 800 925 805, Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button. Meeting Password: hormones For more information, email us at mail@goodhormonehealth.com
  17. 1 point
    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
  18. 1 point
    A 42-year-old woman who presented to hospital with acute vision loss in her right eye was diagnosed with a benign tumour in her adrenal gland. Writing in BMJ Case Reports, clinicians described how the patient presented with a visual acuity of 6/36 in her right eye and 6/6 in her left eye. Investigations revealed an exudative retinal detachment in her right eye as well as a pigment epithelial detachment. The patient had multifocal central serous retinopathy in both eyes. The woman, who had hypertension and diabetes, was diagnosed with Cushing syndrome and a right adrenal adenoma was also discovered. During a treatment period that spanned several years, the patient received an adrenalectomy followed by a maintenance dose of steroids. The patient subsequently developed central serous retinopathy again which the clinicians believe might be related to steroid use. The authors advised “careful deliberation” in prescribing a maintenance dose of steroids following removal of the adrenal glands because of the potential link to retinopathy. From https://www.aop.org.uk/ot/science-and-vision/research/2018/12/17/vision-loss-the-first-sign-of-adrenal-tumour-in-42-year-old-patient
  19. 1 point
    I Went to my Endo appt yesterday (prepared) I had a list of all of my symptoms and a few photos of me to show the dramatic changes that my body has gone through over a short period of time. Without my prompting, He is sure that I have Cushings. Now, to prove it. I Walked away with a long list of labs to do, including...blood, urine, and saliva. Although I already knew in my heart that this is what I had, it was still very hard to hear. I know this is not gonna be an easy road to travel and I would be lying if I said I wasn’t scared. (I’m terrified) I had a hysterectomy 4 years ago and ended up with sepsis, e-coli, c-diff, just to name a few. It nearly ended my life. I’ll keep you guys updated when I know more. Thanks to everyone that has helped me along the way and to those that will continue to do so.
  20. 1 point
    Presented by Mario Zuccarello, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery and Jonathan A. Forbes, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery 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: December 3, 2018 Time: 3:00PM - 4:00PM Pacific Standard Time 6:00PM - 7:00PM Eastern Standard Time Learning Objectives: To understand the role of surgery in the treatment of pituitary tumors To understand the advantages and disadvantages of different surgical approaches in the treatment of pituitary tumors To understand the risks and benefits associated with different surgical strategies Presenter Bios: Mario Zuccarello, MD Neurosurgeon Mario Zuccarello, MD, is currently a Professor of Neurosurgery in the Department of Neurosurgery at the University of Cincinnati. He was the Frank H. Mayfield Chair for Neurological Surgery and Chairman of the Department of Neurosurgery from 2009-2017. Dr. Zuccarello is also a member of the University of Cincinnati Gardner Neuroscience Institute and the Greater Cincinnati/Northern Kentucky Stroke Team. Dr. Zuccarello is dedicated to clinical research in neurovascular disease and the development of new neurosurgical techniques for the treatment of stroke, cerebral hemorrhage, vasospasm, carotid artery disease, and moyamoya disease. While Cincinnati has become widely known for its leadership in stroke research, treatment, and the development of clot-busting drugs, Dr. Zuccarello has led a quiet revolution in the prevention and treatment of brain hemorrhages, which rank among the most hazardous conditions of the brain. Dr. Zuccarello graduated summa cum laude from the Gymnasium in Catania, Italy, in 1970. He received his medical degree from the University of Padova, Italy, in 1976, and completed his residency in neurosurgery from Padova, with summa cum laude honors, in 1980. He subsequently performed research fellowships at the University of Iowa and the University of Virginia Medical Center, Charlottesville, and a clinical fellowship at the University of Cincinnati. He was inducted into Alpha Omega Alpha, the national medical honor society in 2001 and has been named to the Best Doctors in America since 2005. In 2013, he received recognition by members of the Vasospasm consortium for his dedication and outstanding accomplishments in the field of experimental and clinical research on subarachnoid hemorrhage. Jonathan A. Forbes, MD Neurosurgeon Dr. Forbes is a fellowship-trained neurosurgeon with expertise and interest in open and minimally-invasive approaches for treatment of pathology of the cranial base. He has a long and distinguished history of academic recognition, commitment to excellence, and service to our country. As an undergraduate at Grove City College, he was a recipient of the Trustee Scholarship and was named Sportsman of the Year after his senior season of varsity football. Following the events of 9/11, he enrolled in the Health Professions Scholarship Program with the United States Air Force. In medical school at the University of Pittsburgh, he was a recipient of the David Glasser Honors’ Award for academic performance. During neurosurgical residency at Vanderbilt University, he received numerous national accolades—including the AANS Synthes Craniofacial Award for Research in Neurotrauma as well as the AANS Top Gun Award. His score on the American Board of Neurological Surgery (ABNS) written board examination during his fourth year of residency was recognized in the top 3% nationwide. After completing his chief year of neurosurgical residency at Vanderbilt in 2013, Dr. Forbes went on to fulfill a 4-year commitment with the U.S. Air Force that included a 6-month deployment to Bagram Air Force Base in Afghanistan. Humanitarian care he provided at the Craig Joint Theater Hospital in Bagram has been featured in numerous neurosurgical journals—including Journal of Neurosurgery, World Neurosurgery and Neurosurgical Focus—and recognized on a national level by the USAF as part of the “Through Airmen’s Eyes” series. After honorable discharge from the military, he completed a minimally-invasive skull base fellowship at Weill Cornell Medical Center in New York City under the guidance of Dr. Theodore Schwartz prior to joining the UC Department of Neurosurgery. To date, Dr. Forbes has contributed to over 40 peer-reviewed publications.
  21. 1 point
    Pituitary Tumors Affect Patients’ Ability to Work, Reduce Quality of Life Pituitary tumor conditions, such as Cushing’s disease, have a substantial effect on patients’ work capabilities and health-related quality of life, researchers from The Netherlands reported. The study, “Work disability and its determinants in patients with pituitary tumor-related disease,” was published in the journal Pituitary. Pituitary tumors, like those that cause Cushing’s disease, have significant effects on a patient’s physical, mental, and social health, all of which influence their work status and health-related quality of life. However, the effects of the disease on work status is relatively under-investigated, investigators report. Here, researchers evaluated the work disability among patients who were treated for pituitary tumors in an attempt to understand the impact of disease diagnosis and treatment on their social participation and ability to maintain a paying job. In their study, researchers examined 241 patients (61% women) with a median age of 53 years. The majority (27%) had non-functioning pituitary tumors, which do not produce excess hormones, but patients with acromegaly, Cushing’s disease, prolactinomas, and Rathke’s cleft cyst also were included. Participants were asked to complete questionnaires to evaluate their health-related quality of life and disease-specific impact on their work capabilities. Each participant completed a set of five questionnaires. Participants also reported their hormonal status and demographic data, including gender, age, education, and marital status. Specific information, such as disease diagnosis, treatment, and tumor type was obtained from their medical records. Work status and productivity were assessed using two surveys, the Short-Form-Health and Labour Questionnaire (SF-HLQ) and the work role functioning questionnaire 2.0 (WRFQ). SF-HLQ was used to obtain information on the participants’ employment and their work attendance. Employment was either paid or unpaid. (Participation in household chores was considered not having a paid job.) WRFQ is a 27-question survey that determines work disability regarding being able to meet the productivity, physical, emotional, social, and flexible demands. A higher score indicates low self-perceived work disability. Disease-specific mood problems, social and sexual functioning issues, negative perceptions due to illness, physical and cognitive difficulties, were assessed using a 26-item survey called Leiden Bother and Needs for Support Questionnaire for pituitary patients(LBNQ-Pituitary). Overall, 28% of patients did not have a paid job, but the rates increased to 47% among those with Cushing’s disease. Low education, hormonal deficits, and being single were identified as the most common determinants of not having a paid job among this population. Further analysis revealed that more patients with Cushing’s disease and acromegaly had undergone radiotherapy. They also had more hormonal deficits than others with different tumor types. Overall, patients with a paid job reported working a median of 36 hours in one week and 41% of those patients missed work an average of 27 days during the previous year. Health-related problems during work also were reported by 39% with a paid job. Finally, health-related quality of life was determined using two questionnaires: SF-36 and EQ-5D. The physical, mental, and emotional well being was measured with SF-36, while ED-5D measured the health outcome based on the impact of pain, mobility, self-care, usual activities, discomfort, and anxiety or depression. In both SF-36 and EQ-5D, a higher score indicates a better health status. Statistical analysis revealed that the quality of life was significantly higher in patients with a job. Overall, patients with a paid job reported better health status and higher quality of life than those without a paid job. Although 40% of the patients reported being bothered by health-related problems in the past year, only 12% sought the help of an occupational physician, the researchers reported. “Work disability among patients with a pituitary tumor is substantial,” investigators said. “The determinants and difficulties at work found in this study could potentially be used for further research, and we advise healthcare professionals to take these results into consideration in the clinical guidance of patients,” they concluded. From https://cushingsdiseasenews.com/
  22. 1 point
    The U.S. Food and Drug Administration has approved the clinical use of a magnetic resonance imaging (MRI) scanner — the ultra-high-field 7T Terra MRI — with unprecedented resolution that allows for more reliable images of the brain. The approach recently allowed the precise localization of a small tumor in the pituitary gland, which standard MRI had failed to spot, in a patient with Cushing’s disease. So far, only one scanner of this kind exists in the U.S.. It was installed in February 2017 at the Mark and Mary Stevens Neuroimaging and Informatics Institute (INI) of the Keck School of Medicine, University of Southern California (USC). The new scanner has an increased magnetic field strength of 7 Tesla, which is more than four times that of conventional MRI. This property greatly improves the instrument’s signal-to-noise ratio, dramatically increasing the spatial resolution and contrast of its images so that scientists can visualize the human living brain in high-definition and with unprecedented detail. The 7T Terra is ideal for high-resolution neuroimaging, exploration of neurodegenerative diseases such as Alzheimer’s and Parkinson’s, and diagnosis and treatment of other brain diseases, a USC news story by Zara Greenbaum states. Earlier this year, a report described the case of women with Cushing’s disease with a pituitary adenoma (slow-growing, benign tumor in the pituitary gland) that was possible to localize only with the new 7T MRI. Based on laboratory analysis that revealed high levels of adrenocorticotropic hormone(ACTH) and cortisol, the doctors suspected a pituitary adenoma and recommended the patient for surgery. However, they ignored the precise location of the tumor, which failed to be detected by standard MRI scanners (1T and 3T). Two hours before surgery, the woman underwent a 7T MRI scan which finally identified with high precision the location of the adenoma, a very small tumor of 8 mm on the right side of the pituitary gland. “The 7T may save patients an invasive procedure. It also makes it easier for neurosurgeons to selectively remove a tumor without damaging surrounding areas,” said Gabriel Zada, MD, associate professor of neurological surgery at the Keck School. Since its arrival, the device has supported exploratory research into both healthy and diseased brains. Now the scanner’s advanced imaging technology can be used to help with diagnosis, treatment and monitoring of patients with neurological diseases, including Cushing’s disease. “This device, which has already made its mark as a powerful tool to advance research in the neurosciences, is now accessible to clinical populations in addition to researchers,” said Arthur W. Toga, PhD, provost professor and chair at the Keck School and director of the USC Stevens INI. “Clinicians across the university and beyond can now leverage all the benefits of increased spatial resolution to serve patients in need,” he said. Adapted from https://cushingsdiseasenews.com/2018/11/06/fda-oks-high-resolution-mri-better-spotting-pituitary-tumor-cushings/
  23. 1 point
    If you’ve got your finger on the pulse of health trends, it’s likely you’ve been hearing the current buzzwords “cortisol creates belly fat” and “cortisol causes muscle wasting and fat storage.” These are the type of catch phrases that gain momentum every few years. And although some of the fads and trends showing up seasonally in fitness are myths, this caution about chronically elevated cortisol is true. Cortisol is also deeply connected with the dangers of chronic inflammation, which I described in another article, “Inflammation Creates Diseases.” Like many hormones, cortisol has an effect on a wide variety of functions in the body. Although it’s getting particularly demonized lately, cortisol serves some very important and positive functions in the body. It’s an essential component of the flight or flight response, so it gives us energy, focus, strength, motivation and courage. But, like with sugar or caffeine, it comes with a crash that feels like an emotional, psychological and physical drain. Cortisol is important for survival, but we didn’t evolve to have high levels of it all the time. According to hormone.org, cortisol isn’t only a stress hormone: “Because most bodily cells have cortisol receptors, it affects many different functions in the body. Cortisol can help control blood sugar levels, regulate metabolism, help reduce inflammation and assist with memory formulation. It has a controlling effect on salt and water balance and helps control blood pressure. In women, cortisol also supports the developing fetus during pregnancy. All of these functions make cortisol a crucial hormone to protect overall health and well-being.” (hormone.org/hormones-and-health/hormones/cortisol) There are many symptoms of chronically elevated cortisol levels. With that said, the way a spike of cortisol gives you a jolt of energy is by raising blood sugar. It does this by way of gluconeogenesis. This literally means “creating new sugar,” and it happens by way of breaking protein down into amino acids that are then turned into sugar by the liver. What is a large source of protein in the body? Yep, muscles. This is what is meant by “cortisol causes muscle loss.” This in turn contributes to muscle weakness. Whereas normal levels of cortisol help to regulate blood sugar levels by breaking down only a little muscle (which can be replaced with exercise), excessive levels cause muscle wasting. Why does cortisol cause fat gain? Remember those cortisol receptors most cells have? Fat cells have four times as many, so they are particularly responsive to cortisol. Okay, remember all that glucose the cortisol surge dumped into your blood for energy? Well, that also came with an insulin response to get your blood sugar levels back down, and insulin causes energy storage. And where do you store the energy? Yep, in those hypersensitive fat cells that cortisol just turned on. And what happens when you have too much insulin over time? Yep, diabetes. Also, another reason stress can cause emotional and/or binge eating is because cortisol also fires up your sense of purpose, as well as your appetite. So now stress has made you feel motivated…to eat. Emotionally and psychologically, chronically high cortisol can exacerbate depression, anxiety, irritability and lack of emotional control. Cortisol triggers a release of tryptophan oxygenase. This enzyme breaks down tryptophan. Tryptophan is required for creating serotonin. Serotonin gives us the ability to feel happiness, and it also affects appetite, sleep and sexual desire. Since extended exposure to high levels of cortisol inhibits the production of serotonin, all the symptoms of low serotonin become problematic (decreased appetite, insomnia, impotence, etc.). In short, prolonged stress causes depression. Cortisol also plays a role in the circulatory system. It manipulates blood pressure by acting as a diuretic. Excess cortisol causes an electrolyte imbalance, whereby sodium is retained, but potassium is excreted. Let me take you back to your high school biology days: Muscles fire because of the sodium potassium pump. The sodium potassium pump also effects the firing of nerves, including those impulses that cause your heart to beat and your kidneys to take in water for filtration. That sodium potassium pump is important throughout the entire body, across many of its biological functions. Because cortisol increases the concentration of sodium in your body, it has a direct impact on your blood pressure. Remember why excess salt can cause high blood pressure? Because it contains sodium. For all these reasons and more, chronically elevated cortisol also causes muscle weakness (ironic, since short bursts of it temporarily increase strength). Cortisol has other effects on minerals. According to the Hindawi Journal of Sports Medicine, “Cortisol triggers bone mineral resorption (removal) in order to free amino acids for use as an energy source through gluconeogenesis. Cortisol indirectly acts on bone by blocking calcium absorption, which decreases bone cell growth.” As you can see, excess cortisol causes osteoporosis. It also exacerbates other bone mineral density diseases, which means cortisol can leave you literally brittle with stress. Practically anything can become a stressor in the right conditions, and fight or flight is our only biological response to stress. Some triggers of stress include conflict, worry, alcohol and drug consumption, processed foods, excess exercise (especially prolonged and repeated sessions of low-level steady-state cardio training), sleep deprivation, thirst and hunger. As much as possible, protect yourself from stress with rest, relaxation, meditation, play time and healthy foods full of antioxidants, which reduce inflammation and thus the risks for practically all diseases. Jack Kirven completed the MFA in Dance at UCLA, and earned certification as a personal trainer through NASM. His wellness philosophy is founded upon integrated lifestyles as opposed to isolated workouts. Visit him at jackkirven.com and INTEGRE8Twellness.com. Adapted from https://goqnotes.com/61597/stress-cortisol-and-weight-gain/
  24. 1 point
    Presented by Kevin C.J. Yuen, MD Director, Barrow Pituitary Center Director, Barrow Neuroendocrinology Clinic Barrow Neurological Institute Phoenix, Arizona After registering you will receive a confirmation email containing information about joining the Webinar. Date: November 1, 2018 Time: 10:00 AM - 11:00 AM Pacific Daylight Time Learning Objectives: To discuss the anatomy of the pituitary gland To discuss the physiology of pituitary hormone secretion To discuss what can go wrong and how to treat pituitary disorders Presenter Bio: Kevin C.J. Yuen, MD, is a neuroendocrinologist and Medical Director of the Pituitary Program at Barrow Neurological Institute, specializing in the management of hypothalamic-pituitary disorders. He is double board-certified in Endocrinology and Internal Medicine by the American Board of Internal Medicine, and General Medical Council in the UK. Dr. Yuen’s expertise includes clinical and research interest in the management of pituitary and adrenal disorders, particularly adults with growth hormone deficiency, acromegaly, hypogonadism, Cushing’s disease and adrenal insufficiency. He also has a particular interest in neuroendocrine disorders in young adult cancer survivors and adults with traumatic brain injury. His research is devoted to new diagnostics and treatments of pituitary disorders. Dr. Yuen received his medical degree from University of Sheffield, UK. He completed his residency in Internal Medicine at University of Southampton, UK, clinical and research fellowship in Endocrinology at University of Cambridge, UK, and clinical and research instructor at Oregon Health and Science University, Portland, OR. Dr. Yuen is active in national and international collaborative studies, and has published extensively in numerous peer-reviewed medical journals, authored several book chapters, and is a frequent guest speaker on various topics related to pituitary disorders.
  25. 1 point
    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 subclinical patients did not require treatment with hydrocortisone, a glucocorticoid taken to compensate for low levels of cortisol in the body, after surgery. The study, “Alterations in hypothalamic-pituitary-adrenal function immediately after resection of adrenal adenomas in patients with Cushing’s syndrome and others with incidentalomas and subclinical hypercortisolism,” was published in Endocrine. The HPA axis is the body’s central stress response system. The hypothalamus releases corticotropin-releasing hormone (CRH) that acts on the pituitary gland to release adrenocorticotropic hormone (ACTH), leading the adrenal gland to produce cortisol. As the body’s defense mechanism to avoid excessive cortisol secretion, high cortisol levels alert the hypothalamus to stop producing CRH and the pituitary gland to stop making ACTH. Therefore, in diseases associated with chronically elevated cortisol levels, such as Cushing’s syndrome and adrenal incidentalomas, there’s suppression of the HPA axis. After an adrenalectomy, which is the surgical removal of one or both adrenal glands, patients often have low cortisol levels (hypocortisolism) and require glucocorticoid replacement therapy. “Most studies addressing the peri-operative management of patients with adrenal hypercortisolism have reported that irrespective of how mild the hypercortisolism was, such patients were given glucocorticoids before, during and after adrenalectomy,” the researchers wrote. Evidence also shows that, after surgery, glucocorticoid therapy is administered for months before attempting to test for recovery of HPA function. For the past 30 years, researchers at the University Hospitals Cleveland Medical Center have withheld glucocorticoid therapy in the postoperative management of patients with ACTH-secreting pituitary adenomas until there’s proof of hypocortisolism. “The approach offered us the opportunity to examine peri-operative hormonal alterations and demonstrate their importance in predicting need for replacement therapy, as well as future recurrences,” they said. In this prospective observational study, the investigators extended their approach to patients with subclinical hypercortisolism. “The primary goal of the study was to examine rapid alteration in HPA function in patients with presumably suppressed axis and appreciate the modulating impact of surgical stress in that setting,” they wrote. Collected data was used to decide whether to start glucocorticoid therapy. The analysis included 14 patients with Cushing’s syndrome and 19 individuals with subclinical hypercortisolism and an adrenal incidentaloma. All participants had undergone surgical removal of a cortisol-secreting adrenal tumor. “None of the patients received exogenous glucocorticoids during the year preceding their evaluation nor were they taking medications or had other illnesses that could influence HPA function or serum cortisol measurements,” the researchers noted. Glucocorticoid therapy was not administered before or during surgery. To evaluate HPA function, the clinical team took blood samples before and at one, two, four, six, and eight hours after the adrenalectomy to determine levels of plasma ACTH, serum cortisol, and dehydroepiandrosterone sulfate (DHEA-S) — a hormone produced by the adrenal glands. Pre-surgery assessment of both groups showed that patients with an incidentaloma plus subclinical hypercortisolism had larger adrenal masses, higher ACTH, and DHEA-S levels, but less serum cortisol after adrenal function suppression testing with dexamethasone. Dexamethasone is a man-made version of cortisol that, in a normal setting, makes the body produce less cortisol. But in patients with a suppressed HPA axis, cortisol levels remain high. After the adrenalectomy, the ACTH concentrations in both groups of patients increased. This was found to be negatively correlated with pre-operative dexamethasone-suppressed cortisol levels. Investigators reported that “serum DHEA-S levels in patients with Cushing’s syndrome declined further after adrenalectomy and were undetectable by the 8th postoperative hour,” while incidentaloma patients’ DHEA-S concentrations remained unchanged for the eight-hour postoperative period. Eight hours after surgery, all Cushing’s syndrome patients had serum cortisol levels of less than 2 ug/dL, indicating suppressed HPA function. As a result, all of these patients required glucocorticoid therapy for several months to make up for HPA axis suppression. “The decline in serum cortisol levels was slower and less steep [in the incidentaloma group] when compared to that observed in patients with Cushing’s syndrome. At the 6th–8th postoperative hours only 5/19 patients [26%] with subclinical hypercortisolism had serum cortisol levels at ≤3ug/dL and these 5 were started on hydrocortisone therapy,” the researchers wrote. Replacement therapy in the subclinical hypercortisolism group was continued for up to four weeks. Results suggest that patients with an incidentaloma plus subclinical hypercortisolism did not have an entirely suppressed HPA axis, as they were able to recover its function much faster than the CS group after surgical stress. From https://cushingsdiseasenews.com/2018/10/11/most-subclinical-cushings-patients-dont-need-glucocorticoids-post-surgery-study/?utm_source=Cushing%27s+Disease+News&utm_campaign=a881a1593b-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_ad0d802c5b-a881a1593b-72451321
  26. 1 point
    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 cortisol. Small cell cancer is more common in older men, those in their 60s or 70s. Sources of ectopic ACTH synthesis arising in the pelvis are rare; nonetheless, ACTH overproduction has been linked to tumors in the gonads and genitourinary organs, including the prostate. Still, evidence suggests there are less than 30 published cases reporting ectopic CS caused by prostate cancer. Researchers from the Southern Adelaide Local Health Network and the Royal Adelaide Hospital in Australia described the case of an 84-year-old man who complained of fatigue, back pain, and lack of appetite. Blood tests revealed mildly elevated prostate-specific antigen (PSA) and creatinine levels, which could indicate the presence of prostate cancer and impaired kidney function, respectively. The patient had a history of locally invasive prostate cancer even though he didn’t experience any symptoms of this disease. Ultrasound examination showed an enlarged prostate plus obstructed ureters — the tubes that carry urine from the kidney to the bladder. To remove the obstruction, doctors inserted a thin tube into both ureters and restored urine flow. After the procedure, the man had low levels of calcium, a depressed mood, and back pain, all of which compromised his recovery. Imaging of his back showed no obvious reason for his complaints, and he was discharged. Eight days later, the patient went to the emergency room of a large public hospital because of back pain radiating to his left buttock. The man also had mild proximal weakness on both sides. He was thinner, and had low levels of calcium, high blood pressure and serum bicarbonate levels, plus elevated blood sugar. In addition, his depression was much worse. A psychiatrist prescribed him an antidepressant called mirtazapine, and regular follow-up showed that his mood did improve with therapy. A computed tomography (CT) scan revealed a 10.5 cm tumor on the prostate and metastasis on the lungs and liver. Further testing showed high serum cortisol and ACTH levels, consistent with a diagnosis of Cushing’s syndrome. But researchers could not identify the ACTH source, and three weeks later, the patient died of a generalized bacterial infection, despite treatment with broad-spectrum antibiotics. An autopsy revealed that the cancer had spread to the pelvic sidewalls and to one of the adrenal glands. Tissue analysis revealed that the patient had two types of cancer: acinar adenocarcinoma and small cell neuroendocrine carcinoma — which could explain the excess ACTH. Cause of death was bronchopneumonia, a severe inflammation of the lungs, triggered by an invasive fungal infection. Investigators believe there are things to be learned from this case, saying, “Neither the visceral metastases nor aggressive growth of the pelvic mass noted on imaging were typical of prostatic adenocarcinoma. [Plus], an incomplete diagnosis at death was the precipitant for a post-mortem examination. The autopsy findings were beneficial to the patient’s family and treating team. The case was discussed at a regular teaching meeting at a large tertiary hospital and, thus, was beneficial to a wide medical audience.” Although a rare cause of ectopic ACTH synthesis, small cell prostate cancer should be considered in men presenting with Cushing’s syndrome, especially in those with a “mystery” source of ACTH overproduction. “This case highlights the importance of multidisciplinary evaluation of clinical cases both [before and after death], and is a fine example of how autopsy findings can be used to benefit a wide audience,” the researchers concluded. https://cushingsdiseasenews.com/2018/10/16/rare-prostate-cancer-prostate-associated-cushings-syndrome-case-report/
  27. 1 point
    These are pictures of me taken 3 years apart. 45lb weight gain.
  28. 1 point
    Thanks to all that have responded to my post. I have an endocrinologist appt. on October 23rd. I pray that he has the wisdom to help me.
  29. 1 point
    Cushing’s syndrome patients with tumors on both adrenal glands — which sit on top of the kidneys — could undergo adrenal venous sampling, a procedure where blood samples are taken from both adrenal glands to determine which tumors to remove, researchers suggest. Their study, “Outcomes of Adrenal Venous Sampling in Patients with Bilateral Adrenal Masses and ACTH-Independent Cushing’s Syndrome,” was published in the World Journal of Surgery. The work was a collaboration between SUNY Upstate Medical University in Syracuse and the University of Pittsburgh. Cushing’s syndrome, a condition characterized by excess cortisol, can be divided into two main subtypes. In some patients, the disease is dependent on tumors secreting the adrenocorticotropic hormone (ACTH), which stimulates the release of cortisol from the adrenal glands. In others, adrenal tumors are solely responsible for excess cortisol and do not require ACTH for functioning. ACTH-independent Cushing’s syndrome (AICS), the latter subtype, constitutes about 10% to 15% of endogenous — an overproduction of cortisol within the body — Cushing’s syndrome cases, with cortisol-secreting adenomas in just one gland (unilateral) being the most common cause. Compared to unilateral adenomas, adrenal tumors in both glands (bilateral) in patients with AICS are difficult to diagnose. Disease management in these rare cases depends on the challenging determination of the lesion’s exact location and of the functional status of the benign tumors (if they are actively secreting cortisol). Surgical removal of both adrenal glands, also known as bilateral adrenalectomy, “ensures cure of AICS, but leads to permanent corticosteroid dependence and a lifelong risk of adrenal crisis,” investigators explained. Therefore, screening for the presence of unilateral or bilateral adenomas is essential to avoid unnecessary surgery. “Adrenal venous sampling (AVS) has been reported in a single institutional series … to aid in successful localization of cortisol-secreting adrenal adenomas in patients with bilateral adrenal masses and AICS,” researchers wrote. Researchers retrospectively assessed the usefulness of AVS in guiding management of patients with bilateral adrenal masses plus AICS. Nine women (age 51-73) with bilateral adrenal masses and AICS were included in the study. All subjects had undergone AVS at the University of Pittsburgh Medical Center from 2008 to 2016. None of the patients had apparent symptoms of Cushing’s syndrome. “Samples were obtained for testing of epinephrine [also called adrenaline] and cortisol from both [adrenal veins] and the external iliac vein. Multiple samples were obtained to ensure adequate sampling,” they wrote. Adrenal glands produce cortisol and epinephrine, among other hormones, which are critical for maintaining good health. In AICS, there’s an overproduction of both hormones that’s independent on the release of ACTH, which is produced by the brain’s pituitary gland. Successful adrenal venous sampling was achieved in eight women. “One patient with unsuccessful catheterization had [other additional diseases] and passed away from unrelated reasons,” researchers reported. AVS results indicated that all patients had bilateral cortisol-secreting adenomas. “Surgical management was strongly influenced by adrenal mass size. However, AVS may have influenced surgical decision-making in some cases, particularly when minimal difference in size was noted in adrenal mass sizes,” they reported. Six women underwent adrenalectomy: three had the gland with larger size mass removed (unilateral type of surgery); two had both glands removed; and one had the right gland removed followed by the left one, five months later, due to continuous hormonal overproduction without experiencing symptoms of Cushing’s syndrome. Evidence suggests that removal of the larger adrenal mass in patients with bilateral cortisol-secreting adenomas improves Cushing’s syndrome presentation. In theory, unilateral adrenalectomy reduces cortisol production through the removal of the oversecreting mass. Because of this, unilateral adrenalectomy of the larger adrenal mass was chosen in half of this study’s surgical cases, instead of bilateral adrenalectomy. Tissue analysis revealed multiple-lump masses, also known as macronodular adrenal hyperplasia (MAH), in all six surgical cases. In addition, computed tomography (CT) scan findings were predictive of bilateral MAH, with scans showing evidence of one or multiple nodules on one or both adrenal glands. “To the best of our knowledge, this is the second study to evaluate the utility of AVS in guiding management of patients with bilateral adrenal masses and AICS,” investigators said. The first study was by Young and included 10 patients with a more severe presentation of Cushing’s syndrome and other individual characteristics, which contributed to the differences in results, compared to the current study. In Young’s study, half the subjects had unilateral adrenal masses. Patients with bilateral cortisol-secreting masses frequently have a milder form of Cushing’s syndrome, which corroborates researchers’ findings. Despite suggesting that adrenal venous sampling is useful in excluding a unilateral adenoma as the cause of AICS, this study’s sample size is small. “More data are needed before AVS can be advocated as essential for management of patients with bilateral adrenal masses and AICS,” researchers concluded. From https://cushingsdiseasenews.com/2018/10/02/adrenal-venous-sampling-helps-surgical-decisions-type-cushings-syndrome/?utm_source=Cushing%27s+Disease+News&utm_campaign=a990429aad-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_ad0d802c5b-a990429aad-72451321
  30. 1 point
    It's not nearly as rare as some doctors think. Honestly, most of us have bad experiences with at least one endo so that's a possibility but fingers crossed you get one that's willing to listen and will let you do some testing; push for testing. Do your research, read as much as you can before the appointment - bring pictures of your physical changes if you have them and write down your symptoms. I never saw Dr. F for diagnosis but his website and the boards were the best thing ever for me. His site has lots of good articles so I would read everything there http://www.goodhormonehealth.com/cushings-patients/ and read old postings from these boards.
  31. 1 point
    Jen, why did they test you at all since you had normal labs? Did they go by symptoms alone or something else? Congratulations on having surgery!
  32. 1 point
    Yes!! I had normal labs the whole time until day of surgery! They only did surgery because my IPSS showed high ACTH. So you may want to have that test done.
  33. 1 point
    Thank you Mary! This helps my anxiety over results.
  34. 1 point
    Hi Sharon, I had all of that except for the nausea. The itching I had mostly at night and it woke me up. The flushing red face and chest and arms were the colour of lobster and then my face was the colour of red wine.
  35. 1 point
    New Testimonial From Christina P I found it [Cushing's Help] 11 years ago quite by accident and it not only changed my life but saved my life! Thank you, Mary Kelly O'Connor! Read more at https://cushieblogger.com/testimonial/christina-p-5/
  36. 1 point
  37. 1 point
    A noninvasive 7 Tesla MRI scanner at University of Southern California is the first 7T scanner to be used on a patient with Cushing's disease in the U.S., according to a USC news release. When a brain tumor was found to be "MRI-negative" in a 28-year-old female patient, physicians at the USC's Pituitary Center were unsatisfied with the results. After deciding to use the Neuroimaging and Informatics Institute's (INI) new ultrahigh field 7 Tesla MRI scanner to localize the tumor, the patient was officially diagnosed with Cushing's disease and researchers were finally able to see the tumor that would've otherwise appeared hidden in a standard MRI. Cushing's disease is caused by a pituitary microadenoma, or very small tumor, which results in chronically elevated cortisol. Symptoms include weight gain, skin bruising and hair loss and if left untreated, the condition can be fatal. Because of this case, USC researchers believe the 7T scanner will be able to replace the standard, and invasive, method of clinical diagnosis, according to the news release. “It’s clear that this is the beginning of a new frontier for ultrahigh field MR technologies,” said Arthur Toga, PhD, director of the INI, in a prepared statement. “The enhanced image quality opens many doors for neuroscientists in both research and clinical settings.” From http://www.healthimaging.com/topics/neuroimaging/uscs-7-tesla-mri-scanner-first-identify-cushings-disease-us-patient
  38. 1 point
    First – write mostly about Cushing’s Then add one of these images to your blog: White Background: Transparent images, same directions: If your blog wants a URL instead of the image, that URL is http://www.cushings-help.com/blog/cushblogsmall.png If your blog wants you to upload an image from your desktop, right-click on one of the above images above and choose "save-as". Remember where you saved it to! In all cases, the URL for the site is http://www.cushings-help.com If you put one of these on your blog, please post about it here so I can add it to the list of Cushie Bloggers. Happy Blogging!
  39. 1 point
    I plan to do the Cushing's Awareness Challenge again. Last year's info is here: https://cushieblogger.com/2017/03/08/time-to-sign-up-for-the-cushings-awareness-challenge-2017/ The original page is getting very slow loading, so I've moved my own posts to this newer blog. As always, anyone who wants to join me can share their blog URL with me and I'll add it to the links on the right side, so whenever a new post comes up, it will show up automatically. If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc. If you have photos, and you give me permission, I'll add them to the Pinterest page for Cushing's Help. The Cushing’s Awareness Challenge is almost upon us again! Do you blog? Want to get started? Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Eighth Annual Cushing’s Awareness Blogging Challenge. All you have to do is blog about something Cushing’s related for the 30 days of April. There will also be a logo for your blog to show you’ve participated. Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Cushing's Help Facebook Groups, on the message boards or an email and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/) The more people who participate, the more the word will get out about Cushing’s. Suggested topics – or add your own! In what ways have Cushing’s made you a better person? What have you learned about the medical community since you have become sick? If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients? What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that. I have Cushing’s Disease….(personal synopsis) How I found out I have Cushing’s What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.) My challenges with Cushing’s Overcoming challenges with Cushing’s (could include any challenges) If I could speak to an endocrinologist organization, I would tell them…. What would I tell others trying to be diagnosed? What would I tell families of those who are sick with Cushing’s? Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured. What will happen if I’m not cured? I write about my health because… 10 Things I Couldn’t Live Without. My Dream Day. What I learned the hard way Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer) Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual! 5 Challenges & 5 Small Victories. The First Time I… Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more. How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially? Why do you think Cushing’s may not be as rare as doctors believe? What is your theory about what causes Cushing’s? How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals? What new goals did Cushing’s bring to you? How do you cope? What do you do to improve your quality of life as you fight Cushing’s? How Cushing’s affects children and their families Your thoughts…?
  40. 1 point
    My doctors say it can take a lot of testing before a diagnosis. Midnight saliva cortisols mostly. Beware...not all labs support this and it may take some effort to get it accomplished.
  41. 1 point
    Rare Disease Day Each and every day since 1987, I tell anyone who will listen about Cushing’s... Read more at https://cushieblogger.com/2018/02/28/rare-disease-day/
  42. 1 point
    Sign Up and Enjoy Patient Benefits To join our database and to receive a $5 gift card if you qualify, please complete the form below. Currently, we are looking for patients and caregivers with many different rare conditions. Please fill out the sign-up form below and we’ll let you know if you qualify. If you are the caregiver of more than one patient, or are both a patient and caregiver, please fill out a separate entry for each and you will receive multiple gift cards. Please be aware that each entry is checked individually. Please include your correct personal phone number as we will call you to verify your information. It may take up to four weeks before you receive your gift card if you qualify. Read more about how we use your information. At this time we are accepting patients and caregivers across all diseases and conditions. However, that does not guarantee we will have surveys for you. If there are not any companies that have treatments available, or there are no companies developing treatments, then there would be no sponsors for surveys. But we are always looking for sponsors for all disease categories! Only one caregiver per household, please! That is because our survey sponsors won’t allow more than one response from caregivers in the same household. If you have more than one caregiver, you can decide which of you can do each survey. Please be aware that the rewards you earn from participating in market research, like all income you receive, is considered taxable by the IRS. We are required to submit form 1099 for each patient or caregiver whom we pay $600 or more in a year. We are proud to say that we’ve rewarded patients with over $2.1 million for participating in surveys in the past four years! Register here!
  43. 1 point
    Usually, you have to do a LOT of 24-hour UFCs to get diagnosed. One just doesn't get it. When I was being diagnosed, I did several weeks of daily UFCS. Are you seeing a good endocrinologist who is knowledgeable about Cushing's? Please keep us posted.
  44. 1 point
    The US Food and Drug Administration (FDA) has approved an orally available ghrelin agonist, macimorelin (Macrilen, Aeterna Zentaris), to be used in the diagnosis of patients with adult growth-hormone deficiency (AGHD). Macimorelin stimulates the secretion of growth hormone from the pituitary gland into the circulatory system. Stimulated growth-hormone levels are measured in four blood samples over 90 minutes after oral administration of the agent for the assessment of growth-hormone deficiency. Prior to the approval of macimorelin, the historical gold standard for evaluation of adult growth-hormone deficiency was the insulin tolerance test (ITT), an intravenous test requiring many blood draws over several hours. The ITT procedure is inconvenient for patients and medical practitioners and is contraindicated in some patients, such as those with coronary heart disease or seizure disorder, because it requires the patient to experience hypoglycemia to obtain an accurate result. Adult growth-hormone deficiency is a rare disorder characterized by the inadequate secretion of growth hormone from the pituitary gland. It can be hereditary; acquired as a result of trauma, infection, radiation therapy, or brain tumor growth; or can even emerge without a diagnosable cause. Currently, it is treated with once-daily injections of subcutaneous growth hormone. "Clinical studies have demonstrated that growth-hormone stimulation testing for adult growth-hormone deficiency with oral…macimorelin is reliable, well-tolerated, reproducible, and safe and a much simpler test to conduct than currently available options," said Kevin Yuen, MD, clinical investigator and neuroendocrinologist, Barrow Neurological Institute, and medical director of the Barrow Neuroendocrinology Clinic, Phoenix, Arizona, in a press release issued by Aeterna Zentaris. "The availability of…macimorelin will greatly relieve the burden of endocrinologists in reliably and accurately diagnosing adult growth-hormone deficiency," he added. Aeterna Zentaris estimates that approximately 60,000 tests for suspected adult growth-hormone deficiency are conducted each year across the United States, Canada, and Europe. "In the absence of an FDA-approved diagnostic test for adult growth-hormone deficiency, Macrilen fills an important gap and addresses a medical need for a convenient test that will better serve patients and health providers," said Michael V Ward, chief executive officer, Aeterna Zentaris. Macrilen is expected to be launched in the United States during the first quarter of 2018. It is also awaiting approval in the European Union. Follow Lisa Nainggolan on Twitter: @lisanainggolan1. For more diabetes and endocrinology news, follow us on Twitter and on Facebook. From https://www.medscape.com/viewarticle/890457
  45. 1 point
    Hi, Jamie - I've read that Adderall can increase cortisol levels but I think that the adrenal hyperplasia is an issue apart from the cortisol increase. Will NIH be doing surgery on your adrenal glands?
  46. 1 point
    Hi, Amy - I had most of the same symptoms as you but I was always "chunky". I thought I was pregnant when I noticed my first symptom - loss of my periods. Even though I was faithfully working out most days at my gym and was on track with my foods with Weight Watchers, I gained weight. And tired/exhaustion/fatigue was with me daily. It took about 5 years for a diagnosis. My whole bio is here (although it needs an update): https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/ Why not join these boards so you can read everything we've written about the symptoms you're experiencing now? Best of luck to you!
  47. 1 point
    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 is heterogenous and varies by sex, age, and disease severity. Common signs and symptoms include central adiposity, roundness of the face or extra fat around the neck, thin skin, impaired short-term memory and concentration, irritability, hirsutism in women, fatigue, and menstrual irregularity.4 Because each of these features may be observed in a wide range of other conditions, it may be difficult to diagnose cases that are not severe. "It can be challenging to differentiate the milder forms from pseudo-Cushing's states," which are characterized by altered cortisol production and many of the same clinical features as Cushing's syndrome, according to Roberto Salvatori, MD, the medical director of the Johns Hopkins Pituitary Center, Baltimore, Maryland. These may include alcoholism, obesity, eating disorders, and depression. "Because Cushing's can cause depression, for example, it is sometimes difficult to determine which came first," he says. In these states, however, hypercortisolism is believed to be driven by increased secretion of hypothalamic corticotropin-releasing hormone, which is suppressed in Cushing's syndrome.5 Causes and Diagnosis If Cushing's syndrome is suspected on the basis of the patient's physical appearance, the diagnostic workup should include a thorough medical history, physical exam, and 1 or more of the following tests to establish hypercortisolism: the 24-hour urinary cortisol test, the low-dose dexamethasone suppression test, or the late-night salivary cortisol test. "We sometimes use 2 or 3 of these tests since 1 may not accurately reflect cortisol production in a particular patient," Dr Salvatori notes. The next step is to determine the source of the hypercortisolism, which may involve the high-dose dexamethasone suppression test, magnetic resonance imaging, or petrosal sinus sampling.2 Medication is the most common cause of Cushing's syndrome. These iatrogenic or exogenous cases typically result from corticosteroids administered for conditions such as asthma, allergies, and autoimmune disorders.6 More rarely, the disorder can be caused by the use of medroxyprogesterone. In these cases, corticosteroids should be reduced or discontinued under medical care, if possible. Endogenous Cushing's syndrome results from the presence of benign or malignant tumors on the adrenal or pituitary glands or elsewhere in the body. These tumors can interfere with the adrenal glands' production of cortisol that is usually prompted by the adrenocorticotropic hormone (ACTH) released by the pituitary gland.6 There are 3 different mechanisms by which the process can occur. Pituitary adenomas, which account for approximately 70% of endogenous cases of Cushing's syndrome, secrete ACTH and stimulate additional cortisol production. Because of the large proportion of cases this condition represents, it is specifically referred to as Cushing's disease. It is more common in women than men (with a ratio of 3 to 4:1), although in pediatric patients, it occurs more frequently in boys vs girls.5 Adrenal tumors (adenomas, malignant tumors, or micronodular hyperplasia) produce cortisol in their own tissue in addition to the amount produced by the adrenal glands. These tumors, which cause approximately 15% of endogenous Cushing's syndrome cases, are more common in children vs adults and in women vs men. Benign or malignant tumors elsewhere in the body, most often the lungs, thyroid, thymus, and pancreas, secrete ACTH and trigger the excessive release of cortisol. An estimated 15% of endogenous cases are attributed to these types of tumors. Treatment Surgery is the first-line treatment for Cushing's syndrome. "We first want to try to figure out the cause of the disorder," Dr Salvatori says. "Ideally, treatment involves surgery to remove the tumor that is causing it." When surgery is unsuccessful, contraindicated, or delayed, other treatment options include radiation or medications that inhibit cortisol, modulate the release of ACTH, or inhibit steroidogenesis.5 Bilateral adrenalectomy may be indicated for patients who do not respond to medication or other surgery. If surgical resection of the tumor is successful, then "all of the comorbidities reverse, but if it is unsuccessful or must be delayed, you would treat each comorbidity" with the appropriate medication; for example, antihypertensives for high blood pressure and antidiabetic medications for diabetes, Dr Salvatori advises. In severe cases, prophylactic antibiotics may be indicated for the prevention of severe infections such as pneumonia. It is also important to inquire about and address psychiatric symptoms related to Cushing's syndrome, even in patients who are in remission. It has been proposed that the chronic hypercortisolism and dysfunction of the HPA axis may "lead to structural and functional changes in the central nervous system, developing brain atrophy, particularly in the hippocampus, which may determine the high prevalence of psychiatric disorders, such as affective and anxiety disorders or cognitive dysfunctions," according to a recently published paper on the topic.7 Patients should be screened with self-report questionnaires such as the Beck Depression Inventory and the Hospital Anxiety and Depression Scale, and management of psychiatric symptoms may include patient education, psychotropic medications, and referral to a mental health professional. Future Directions Several trials are currently planned or underway, including a phase 2 randomized, double-blind, placebo-controlled study of an oral medication called ATR-101 by Millendo Therapeutics, Inc. (ClinicalTrials.gov identifier: NCT03053271). In addition to the need for novel medical therapies, refined imaging techniques could improve surgical success rates in patients with Cushing's disease in particular, according to Dr Salvatori. "A significant portion of these patients have tumors too small to be detected by MRI, and the development of more sensitive MRI could improve detection and provide a surgical target" for neurosurgeons treating the patients, he says. Summary Milder cases of Cushing's syndrome present diagnostic challenges are a result overlapping features with various other conditions. Diagnosis may require careful observation as well as biochemical and imaging tests. RELATED ARTICLES New Research Highlights Possible Genetic Cause of Cushing's Disease Endocrine Society Releases Guidelines on Treatment of Cushing's Syndrome Pediatric Endocrine Society Provides Guidance for Growth Hormone Use in Pediatric Patients References Loriaux DL. Diagnosis and differential diagnosis of Cushing's syndrome. N Engl J Med. 2017;376:1451-1459. doi:10.1056/NEJMra1505550 American Association of Neurological Surgeons. Cushing's syndrome/disease. http://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Cushings-Disease. Accessed August 1, 2017. León-Justel A, Madrazo-Atutxa A, Alvarez-Rios AI, et al. A probabilistic model for cushing's syndrome screening in at-risk populations: a prospective multicenter study. J Clin Endocrinol Metab. 2016;101:3747-3754. doi:10.1210/jc.2016-1673 The Pituitary Society. Cushing's syndrome and disease–symptoms. https://pituitarysociety.org/patient-education/pituitary-disorders/cushings/symptoms-of-cushings-disease-and-cushings-syndrome. Accessed August 1, 2017. Sharma ST, Nieman LK, Feelders RA. Cushing's syndrome: epidemiology and developments in disease management. Clin Epidemiol. 2015;7:281-293. doi:10.2147/CLEP.S44336 National Institutes of Health: Eunice Kennedy Shriver National Institute of Child Health and Human Development. What causes Cushing's syndrome?https://www.nichd.nih.gov/health/topics/cushing/conditioninfo/pages/causes.aspx. Accessed August 1, 2017. Santos A, Resmini E, Pascual JC, Crespo I, Webb SM. Psychiatric symptoms in patients with Cushing's syndrome: prevalence, diagnosis and management. Drugs. 2017;77:829-842. doi:10.1007/s40265-017-0735-z From http://www.endocrinologyadvisor.com/adrenal/cushings-syndrome-diagnosis-treatment/article/682302/
  48. 1 point
    I can't imagine that anyone with Cushing's would want to chance passing this gene along.
  49. 1 point
    It would be very useful to discuss the experiences of patients on Korlym recently who are diagnosed with Cushing's, or with recurrence, cyclical or episodic and on Korlym. Specifically, how is the performance of Korlym and the severe adrenal insufficiency being monitored and adjustments made, if at all, in those who gain benefits and mitigate severe adverse reactions with patient initiated dosing experimentation leading to dosing regimens of every 2-3 days and at less than recommended doses? This has allowed folks to remain on the drug, have far fewer complications and gain improved glucose and weight control. As normally rx'ed these folks would have to discontinue the drug. These patients get benefits with less Korlym and with less frequency due to its effects and very long half life. Is any organized monitoring of these post trial, more cyclical cases being undertaken? The company seems to wave off or dismiss these reports yet they are critical to understanding how fully the drug may be used by so many who it otherwise makes too ill. Studying this group may also provide further insights into unpredictable, episodic and cyclical disease, as well.
  50. 1 point
    I am looking for information about doctors wh specialize in Cushing's syndrome in Portland, OR or somewhere around Oregon or Washington. I am 99.99% sure I have Cyclical Cushing's and have had it for the last 16 years. I currently have to endocrinologists at OHSU even though they are great physicians they they are hesitant on diagnosing me with it they want me to have Gastric Bypass, they keep saying Cyclical Cushing's is too rare for me to have. I have had 3 episodes/cycles since I was 16 ... I match pretty much every and I mean every symptom of Cushing's I even have had two high 24 hour Urine Cortisol's, but they did not feel that it is enough to give me the diagnosis. I took in before and after pictures to show the progression of this over the years, I am currently on 700 + units of insulin a day(and my sugar levels still stay between 350-400 daily), 2550mg a day of metfomin, I have developed hypertension, low potassium, an extremely distended stomach (which is really hard on top) my legs and arms are thin, my face is ver, very round and gets red, I have no periods, My muscles are killing me along with my joints and the hump on the back of my neck between my shoulders is huge and is killing me, My ribs are hurting, I have insomnia, panic attacks almost daily, large pink/purple stretch marks, severe edema, severe daytime fatigue, forgetfulness, losing some cognitive skills, a continuous sinus headache, The pain is becoming unbearable in my joints, acne, losing hair, lots of facial hair on cheeks and chin, I am urinating non-stop, my muscles are extremely weak and it is becoming dfficult to walk because my ankles, knees and hips hurt so bad. I am having a hard time walking especially when it's on an incline. I keep stumbling and losing balance(this is recent). Each episode is worse then the one prior... This is my 3rd bout with this and it is awful... I am only 32 y/o and my doctors won't listen... my Endo's at OHSU keep saying eat less and will not refer me to another endo in the office who specializes in this. I have been emailing them, but now they won't even reply, they keep telling me to excersize more, but I can't because it is so painful and I am so tired. Can someone please tell me of other doctors they have seen that heloped them get a final diagnosis? I did have dexamethsone, and ACTH don, but they were normal... I really want an MRI, ultrsound and CAT scan done. I have great insurance, but I feel like I am getting 3rd world care and being passed of as a crazy person. Thank you for any help!
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