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  3. 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
  4. Jessica Lee Pierson, 35, of Harrisonburg passed away Wednesday, August 29, 2018 from complications of Addison’s disease. Jess was born in Fredericksburg on June 27, 1983, to Janet Pierson and her late husband, Charles Parke Pierson. Jess attended James Monroe High School where she was a stellar athlete and honor scholar. After graduating from James Madison University, she spent two years on the mission field in Peru, sharing her love for the Lord. Residing in Harrisonburg, Jessica excelled at her job as a social worker for Rockingham County and nurtured her clients with compassion, respect, and gentleness. She was an active member of Covenant Presbyterian Church, continually embraced by her family of faith who journeyed with her since her days as a college student. Jess had a beautiful smile, and a sweet and simple demeanor that won the hearts of many, who even now are being inspired by her witness of faith. She was utterly devoted to and dearly loved by her close-knit family. Survivors include her mother, Jan Pierson and husband Frank Graebner; brothers Daniel Pierson (Anne) and Christopher Pierson (Elissa); and sister Emily Moore (Michael). Her signature gift of loving thoughtfulness, especially in her role as “Tia” to her beloved niece and nephews, Mary Claire, Lukas, Nicholas, and Parke, overflowed through her kindheartedness, unselfishness, and generosity, and will never be forgotten. Interment will be held at 10 a.m. on Saturday, September 1 at Oak Hill Cemetery. A service to celebrate her life will follow at 11 a.m. at Fredericksburg Baptist Church. In lieu of flowers, memorials may be made to Missions Ministry of Covenant Presbyterian Church, 32 Southgate Court, Harrisonburg, VA 22801 or Fredericksburg Baptist Church. From https://www.covenantfuneralservice.com/obituary?id=319105
  5. 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.
  6. 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. Earlier
  8. Still over weight  but doing ok.... Can't control my sweating nor my weight. Very tired in the morning. Good to see everyone! 

    1. MaryO

      MaryO

      Good to see you, too :)

      I still have some of my pre-op symptoms, too, but I'm still way better than before.

      Slowly but surely, I guess.

       

  9. Recovery of the hypothalamus-pituitary-adrenal (HPA) axis can occur as late as 12 months after transsphenoidal adenomectomy (TSA), according to study results published in The Journal of Clinical Endocrinology & Metabolism. These findings emphasize the need to periodically assess these patients to avoid unnecessary hydrocortisone replacement. The primary treatment for most pituitary lesions is TSA. After pituitary surgery, the recovery of pituitary hormone deficits may be delayed; limited data are available regarding the postsurgical recovery of hormonal axes or predictors of recovery. The goal of this study was to assess HPA axis dysfunction and predictive markers of recovery following TSA, as well as time to recovery, to identify subgroups of patients who may be more likely to recover. This single-center observational retrospective study enrolled 109 patients in the United Kingdom (71 men; mean age, 56 years; range, 17 to 82 years) who underwent TSA between February 2015 and September 2018 and had ≥1 reevaluation of the HPA axis with the short Synacthen (cosyntropin) test. The primary outcome was recovery of HPA axis function 6 weeks, 3 months, 6 months, and 9 to 12 months after TSA. In 23 patients (21.1%), there was no evidence of pituitary hormone deficit before TSA. In 44 patients (40.4%), there was 1 hormone deficiency and in 25 patients (22.9%), preoperative evaluation showed >1 hormone deficiency. Of the 23 patients with abnormal HPA function before surgery, 8 patients (34.8%) had recovered 6 weeks after the surgery. Patients who recovered were younger (mean age, 50±14 vs 70±9 years; P =.008) compared with patients who did not respond. Of the 15 remaining patients, 2 (13.3%) recovered at 3 months and 3 (20%) recovered at 9 to 12 months. With regard to HPA function in the entire cohort 6 weeks after surgery, 32 patients (29.4%) did not pass the short Synacthen test. Of this group, 5 patients (15.6%) recovered at 3 months, 4 (12.5%) at 6 months, and 2 (6.2%) recovered 9 to 12 months after the surgery. Predictors of future adrenal recovery at 6 weeks included having preoperative 30-minute cortisol >430 nmol/L (P <.001) and a day 8 postoperative cortisol >160 nmol/L (P =.001). With these cutoffs, 80% of patients with preoperative 30-minute cortisol >430 nmol/L (odds ratio [OR], 7.556; 95% CI, 2.847-20.055) and 80% of patients with day 8 postoperative cortisol >160 nmol/L (OR, 9.00; 95% CI, 2.455-32.989) passed the short Synacthen test at 6 weeks postsurgery. In addition, a 6-week baseline short Synacthen test cortisol level above or below 180 nmol/L (P <.001) predicted adrenal recovery at that time point. None of the patients with all 3 variables below the aforementioned cutoffs recovered HPA axis within 1 year. On the other hand, 91.8% of patients with all 3 variables above those cutoffs had normal adrenal function at 6 weeks (OR, 12.200; 95% CI, 5.268-28.255). In addition to the retrospective design, the study had other limitations, including the potential for selection bias, a heterogeneous patient cohort, and no data beyond 12 months after the surgery. “[T]hese data offer the opportunity for patients who may have been given life-long replacement, to safely come off therapy and therefore avoid unnecessary glucocorticoid exposure,” wrote the researchers. Reference Pofi R, Gunatilake S, Macgregor V, et al. Recovery of the hypothalamo-pituitary-adrenal axis following transsphenoidal adenomectomy for non-ACTH secreting macroadenomas [published online June 21, 2019]. J Clin Endocrinol Metab. doi:10.1210/jc.2019-00406 From https://www.endocrinologyadvisor.com/home/topics/adrenal/recovery-of-hpa-axis-can-occur-late-after-transsphenoidal-adenomectomy/
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    **REGISTER NOW!** Saturday, Sept 14, 2019 7:30am – 4:00pm Please join the Pituitary Network Association and The Ohio State University for a Pituitary Patient Symposium featuring a series of pituitary and hormonal patient education sessions presented by some of the top physicians of pituitary and hormonal medicine. The symposium faculty will share the most up-to-date information and be available to answer your most pressing questions. Keynote Speaker: Maria Fleseriu, MD FACE **We are offering a limited number of registration only scholarships. Register today to claim your scholarship!** 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, Sept. 14, 2019 Patient and Family Track Gabbe Conference Room – James L045 7:30 AM Registration and Breakfast 8:00 AM Welcoming Remarks and Introductions: The OSU Skull Base and Pituitary Team 8:05 AM Trans-sphenoidal Approach: What to Expect? Post-Operative Complications Richard Carrau, MD Professor Department of Otolaryngology OSUCCC - James 8:30 AM Radiation Therapy? Difference Between Modalities and Possible Risks Dukagjin M Blakaj, MD, PhD OSUCCC - James 9:00 AM What Are The Challenges Our Patients Face, and How Can We Help? Kami Perdue, PA-C OSUCCC - James 9:30 AM Round Table Q & A 9:45 AM Mid-Morning Break and Visit Vendors 10:00 AM Acromegaly: Why it Takes That Long to Diagnose? What are the Options? Lawrence Kirschner, MD, PhD Professor Division of Endocrinology, Diabetes, and Metabolism OSUCCC - James 10:30 AM Growth Hormone Deficiency: Beyond Growth Rohan Henry, MD Pediatric Endocrinologist Nationwide Children's Hospital 11:00 AM Hypopituitarism: Pitfalls and Recommendations Maria Fleseriu, MD, FACE Oregon Health and Science University - Keynote Speaker 11:30 AM Round Table Q & A 11:45 AM Lunch Break and Patient's Journey 12:45 PM Pituitary Trivia Luma Ghalib, MD Assistant Professor - Clinical Division of Endocrinology, Diabetes, and Metabolism OSUCCC - James Brian Lee, RN OSUCCC - James 1:15 PM Surgical Approach: What to Expect Daniel Prevedello, MD Professor and Chair, Department of Neurological Surgery OSUCCC - James 1:45 PM Visual Complications of Pituitary/Sellar Lesion? Predictors of Outcome Abbe Craven, MD Assistant Professor - Clinical Department of Ophthalmology OSUCCC - James 2:15 PM Round Table Q & A 2:30 PM Mid-Afternoon Break and Visit Vendors 2:45 PM Recovering from Trans-sphenoidal Surgery, Challenges for the Patient and their Families Traci Douglass, RN OSUCCC - James 3:15 PM Pituitary Network Association: Cushing's Disease: Psychological Research and Clinical Implications Jessica Diller Kovler, AM, MA, PhD PNA Board Member 3:45 PM Closing Remarks 4: 00 PM Adjourn
  11. 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
  12. 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
  13. I was diagnosed with Cushing's Disease 2014 and had the tumor in the pituitary gland removed 3015 but at the same time they notice that I had a tumor on my adrenal gland and I had been in remission for about a year-and-a-half or maybe two years and now my cushions came back and I'm thinking could this be why my cushions is back because of that MY blood test and urine test came out negative but my saliva came out positive for cushions my doctor is treating my symptoms with Ketoconazole 200mg twice a day and im feeling the withdrawal symptoms and i feel very ill
  14. Cases of adrenocorticotropic hormone (ACTH)-independent Cushing’s syndrome are often caused by unilateral tumors in the adrenal glands, but Indian researchers have now reported a rare case where the condition was caused by tumors in both adrenal glands. Fewer than 40 cases of bilateral tumors have been reported so far, but an accurate diagnosis is critical for adequate and prompt treatment. Sampling the veins draining the adrenal glands may be a good way to diagnose the condition, researchers said. The study, “Bilateral adrenocortical adenomas causing adrenocorticotropic hormone-independent Cushing’s syndrome: A case report and review of the literature,” was published in the World Journal of Clinical Cases. Cushing’s syndrome, a condition characterized by excess cortisol in circulation, can be divided into two main forms, depending on ACTH status. Some patients have tumors that increase the amount of ACTH in the body, and this hormone will act on the adrenal glands to produce cortisol in excess. Others have tumors in the adrenal glands, which produce excess cortisol by themselves, without requiring ACTH activation. This is known as ACTH-independent Cushing’s syndrome. Among the latter, the disease is mostly caused by unilateral tumors — in one adrenal gland only — with cases of bilateral tumors being extremely rare in this population. Now, researchers reported the case of a 31-year-old Indian woman who developed ACTH-independent Cushing’s syndrome because of tumors in both adrenal glands. The patient complained of weight gain, red face, moon face, bruising, and menstrual irregularity for the past two years. She recently had been diagnosed with high blood pressure and had started treatment the month prior to the presentation. A physical examination confirmed obesity in her torso, moon face, buffalo hump, thin skin, excessive hair growth, acne, swollen legs and feet, and skin striae on her abdomen, arms, and legs. Laboratory examinations showed that the woman had an impaired tolerance to glucose, excess insulin, and elevated cortisol in both the blood and urine. Consistent with features of Cushing’s syndrome, cortisol levels had no circadian rhythm and were non-responsive to a dexamethasone test, which in normal circumstances lowers cortisol production. Because ACTH levels were within normal levels, researchers suspected an adrenal tumor, which led them to conduct imaging scans. An abdominal computed tomography (CT) scan showed adrenal adenomas in both adrenal glands (right: 3.1 cm × 2.0 cm × 1.9 cm; left: 2.2 cm × 1.9 cm × 2.1 cm). A magnetic resonance imaging (MRI) scan showed that the pituitary gland (which normally produces ACTH) was normal. To determine whether both adrenal tumors were producing cortisol, researchers sampled the adrenal veins and compared their cortisol levels to those of peripheral veins. They found that the left adrenal gland was producing higher amounts of cortisol, thought the right adrenal gland was also producing cortisol in excess. “Our case indicates that adrenal vein [blood] sampling might be useful for obtaining differential diagnoses” in cases of Cushing’s syndrome, researchers stated. Also, they may help design a surgical plan that makes much more sense.” The tumors were surgically removed — first the left, and three months later the right — which alleviated many of her symptoms. She also started prednisolone treatment, which helped resolve many disease symptoms. “Bilateral cortisol-secreting tumors are a rare cause of Cushing’s syndrome,” researchers said. So when patients present bilateral adrenal lesions, “it is crucial to make a definitive diagnosis before operation since various treatments are prescribed for different causes,” they said. The team recommends that in such cases the two tumors should not be removed at the same time, as this approach may cause adrenal insufficiency and the need for glucocorticoid replacement therapy. From https://cushingsdiseasenews.com/2019/06/27/rare-case-of-cs-due-to-bilateral-tumors-in-the-adrenal-glands/
  15. Are adrenal incidentalomas, which are found by chance on imaging, really harmless? In this paper, the authors looked at 32 studies, including 4121 patients with benign non-functioning adrenal tumours (NFATs) or adenomas that cause mild autonomous cortisol excess (MACE). Only 2.5% of the tumours grew to a clinically significant extent over a mean follow-up period of 50 months, and no one developed adrenal cancer. Of those patients with NFAT or MACE, 99.9% didn’t develop clinically significant hormone (cortisol) excess. This was a group (especially those with MACE) with a high prevalence of hypertension, diabetes, and obesity. This could be because adrenal adenomas promote cardiometabolic problems, or vice versa, or maybe this group with multimorbidities is more likely be investigated. Adrenal incidentalomas are already found in around 1 in 20 abdominal CT scans, and this rate is likely to increase as imaging improves. So it’s good news that this study supports existing recommendations, which say that follow-up imaging in the 90% of incidentalomas that are smaller than 4 cm diameter is unnecessary. From https://blogs.bmj.com/bmj/2019/07/03/ann-robinsons-journal-review-3-july-2019/
  16. I am cured (for now)!

  17. A young woman struggling with ill health after developing a tumour died from an overdose after “illicit insulin” was brought into the Norfolk and Norwich University Hospital last year, an inquest heard. Jenni Moore passed away at the intensive therapy unit on January 25, more than two weeks after sustaining brain damage while an inpatient at the hospital. The 26-year-old from Halesworth had been admitted in December with complications from two unsuccessful operations to remove a tumour of the pituitary gland. A Type 2 diabetic since 2002, Miss Moore suffered from emotionally unstable personality disorder and an abusive relationship, before a diagnosis of Cushing’s disease as a result of the tumour. Consultant physician at NNUH Dr Franscesca Swords said Miss Moore had been exhibiting “alarming symptoms”. “Cushing’s can cause Type 2 diabetes and needs much higher levels of insulin for it to work,” she told Norfolk Coroner’s Court. “She was having incredibly low sugars, which is consistent with too much insulin. We had been reducing her dose steadily. “We were giving her a fraction of the insulin she had been taking but her blood sugar was still low. Eventually the realisation came to ward staff there was something else at play here.” Staff then began to discover insulin pens hidden in her room. During an investigation Norfolk Police interviewed Miss Moore’s partner Derek Soanes, who admitted he had brought her insulin pens at her request. No further action was taken. Sarah Kennard, a lead health officer with Norfolk and Suffolk NHS Foundation Trust, said in a statement that during a risk assessment in March 2014 Miss Moore said she “thought she was insulin resistant” as a result of her Cushing’s. Assistant coroner for Norfolk Nicholas Holroyd recorded a narrative verdict. “Jenni suffered significant and unhappy health conditions for a number of years,” he said. “Cushing’s exacerbates the diabetic condition to make the patient yet more vulnerable to sugar or hypoglycemia so higher doses of insulin are needed to correct the situation, which made her resistant in a sense. “There has been evidence insulin was being brought to her in the hospital she should not have had. I do not believe she intended to take her own life. Nothing had occurred to drive her to an extreme act.” After the inquest Miss Moore’s brother Joe said: “I loved my sister and so did the rest of my family, and we miss her every day.” From http://www.edp24.co.uk/news/diabetic_died_after_overdose_from_illicit_insulin_brought_into_norfolk_and_norwich_university_hospital_1_4614300
  18. Patients with Cushing’s disease may develop post-traumatic stress symptoms, which are generally resolved once they undergo surgery to remove the tumor, but can persist in some cases, a study shows. The study, “Posttraumatic stress symptoms (PTSS) in patients with Cushing’s disease before and after surgery: A prospective study,” was published in the Journal of Clinical Neuroscience. Cushing’s disease is an endocrine disorder characterized by excess secretion of the adrenocorticotropic hormone (ACTH) by a pituitary adenoma (tumor of the pituitary gland). This leads to high levels of cortisol, a condition known as hypercortisolism. Chronic hypercortisolism is associated with symptoms such as central obesity, buffalo hump, body bruising, muscle weakness, high blood pressure, high blood sugar, and weak bones. Additionally, patients can develop psychiatric disorders including depression, anxiety, and cognitive dysfunction, all of which contribute considerably to a lower health-related quality of life. Depression and anxiety rates are particularly high in Cushing’s disease patients, with 54% of them experiencing major depression and 79% having anxiety. Due to the significant impact of psychological factors in these patients, they may be susceptible to post-traumatic stress symptoms (PTSS). But more information on this phenomenon in these patients is still needed. To address this lack of data, a group of Chinese researchers conducted a prospective study to investigate the occurrence, correlated factors, and prognosis of PTSS in patients with Cushing’s disease. A total of 49 patients newly diagnosed with Cushing’s disease who underwent transsphenoidal removal of the tumor as their first-line treatment were asked to participate in this study. Another group of 49 age- and sex-matched healthy individuals were included as controls. PTSS was measured using the Impact of Event Scale-Revised (IES-R), depression/anxiety were measured using the Hospital Anxiety and Depression scale (HADS), and quality of life was measured using the 36-item short-form (SF-36). These parameters were measured before surgery, and then at six and 12 months after the procedure. Before surgery, 15 patients (30.6%) had PTSS. These patients also had higher cortisol levels, worse levels of depression/anxiety, and worse quality of life scores than those without PTSS. While most of the patients recovered after the operation, there were five (33.3%) for whom PTSS persisted for more than a year. Additionally, one patient who had a recurrence of Cushing’s disease developed PTSS between six and 12 months after the first surgery. PTSS severity showed consistent improvement after surgery, which was correlated with better depression/anxiety scores and psychological aspects of the SF-36. However, Cushing’s disease patients in remission still performed worse than healthy individuals concerning their physical and mental health. Therefore, “patients with [Cushing’s disease] can develop PTSS, and they may persist for over a year even after successful surgery. Combined psychological intervention is advised for these patients,” the researchers concluded. From https://cushingsdiseasenews.com/2019/06/25/cushings-patients-often-have-post-traumatic-stress-symptoms
  19. The oral chemotherapy temozolomide might be an effective treatment for Cushing’s disease caused by aggressive tumors in the pituitary gland that continue to grow after surgery and taking other medications, a case report suggests. The study, “Successful reduction of ACTH secretion in a case of intractable Cushing’s disease with pituitary Crooke’s cell adenoma by combined modality therapy including temozolomide,” was published in the journal J-Stage. Cushing’s disease is often caused by a tumor in the pituitary gland that secretes high levels of adrenocorticotropic hormone (ACTH), leading to high levels of cortisol and other symptoms. Macroadenomas are aggressive, fast-growing tumors that reach sizes larger than 10 millimeters. Crooke’s cell adenoma is a type of macroadenoma that does not respond to conventional therapies, but has deficient mechanisms of DNA repair. That is why chemotherapeutic agents that damage the DNA, such as temozolomide, might be potential treatments. Researchers in Japan reported the case of a 56-year-old woman with Cushing’s disease caused by a Crooke’s cell adenoma in the pituitary gland who responded positively to temozolomide. The patient was diagnosed with Cushing’s disease at age 39 when she went to the hospital complaining of continuous weight gain. She also had excessive production of urine and a loss of vision in the right eye. The lab tests showed high levels of cortisol and ACTH, and the MRI detected a tumor of 4.5 centimeters in the pituitary gland. The doctors removed a part of the tumor surgically, which initially reduced the levels of ACTH and cortisol. However, the hormone levels and the size of the residual tumor started to increase gradually after the surgery, despite treatment with several medications. By the time the patient was 56 years old, she went to the hospital complaining of general fatigue, leg edema (swelling from fluid), high blood pressure, and central obesity (belly fat). Further examination showed a 5.7 cm tumor, identified as a Crooke’s cell macroadenoma. The patient underwent a second surgery to remove as much tumor as possible, but the levels of ACTH remained high. She took temozolomide for nine months, which normalized the levels of ACTH and cortisol. After the treatment, the patient no longer had high blood pressure or leg edema. The tumor shrunk considerably in the year following temozolomide treatment. The patient started radiation therapy to control tumor growth. The levels of cortisol and ACHT remained normal, and the tumor did not grow in the seven years following temozolomide treatment. “These clinical findings suggest that [temozolomide] treatment to patients with Crooke’s cell adenoma accompanied with elevated ACTH may be a good indication to induce lowering ACTH levels and tumor shrinkage,” researchers wrote. Other cases of Cushing’s disease caused by aggressive macroadenomas showed positive results, such as reduction of tumor size and decrease in plasma ACTH, after temozolomide treatment. However, more studies are needed to establish the ideal course of chemotherapy to treat these tumors, the researchers noted. From https://cushingsdiseasenews.com/2019/06/18/temozolomide-effective-cushings-disease-aggressive-tumors-case-report/
  20. Removal of pituitary adenomas by inserting surgical instruments through the nose (transsphenoidal resection) remains the best treatment option for pediatric patients, despite its inherent technical difficulties, a new study shows. The study, “Transsphenoidal surgery for pituitary adenomas in pediatric patients: a multicentric retrospective study,” was published in the journal Child’s Nervous System. Pituitary adenomas are rare, benign tumors that slowly grow in the pituitary gland. The incidence of such tumors in the pediatric population is reported to be between 1% and 10% of all childhood brain tumors and between 3% and 6% of all surgically treated adenomas. Characteristics of patients that develop these pituitary adenomas vary significantly in different studies with regards to their age, gender, size of adenoma, hormonal activity, and recurrence rates. As the pituitary gland is responsible for hormonal balance, alterations in hormone function due to a pituitary adenoma can significantly affect the quality of life of a child. In most cases, pituitary adenomas can be removed surgically. A common removal method is with a transsphenoidal resection, the goal of which is to completely remove the growing mass and cause the least harm to the surrounding structures. In this study, the researchers report the surgical treatment of pediatric pituitary adenomas at three institutions. They collected data from 27 children who were operated for pituitary adenoma using one of two types of transsphenoidal surgeries — endoscopic endonasal transsphenoidal surgery (EETS) and transsphenoidal microsurgery (TMS) — at the University Cerrahpasa Medical Faculty in Istanbul, Turkey, at San Matteo Hospital in Pavia, and at the University of Insubria-Varese in Varese, Italy. The study included 11 males (40.7%) and 16 females (59.3%), with a mean age of 15.3 (ranging between 4 and 18). Medical records indicated that 32 surgical procedures were performed in the 27 patients, as six children required a second operation. Among the patients, 13 had Cushing’s disease, while the rest had growth-hormone-secreting adenomas, prolactinomas, or non-functional adenomas. The researchers found that most patients underwent remission following their surgery. Among the 27 patients, 22 patients (81.4%) underwent remission while five patients (18.5%) did not. Four patients underwent remission after a second operation. Based on these findings, the team believes that the transsphenoidal surgical approach adequately removes pituitary tumors and restores normal hormonal balance in the majority of pediatric patients with pituitary adenomas. “Satisfactory results are reported with both EETS and TMS in the literature,” they wrote. “Despite the technical difficulties in pediatric age, transsphenoidal resection of adenoma is still the mainstay treatment that provides cure in pediatric patients.” From https://cushingsdiseasenews.com/2019/05/30/transsphenoidal-surgery-effective-remove-pituitaty-adenomas-children-study/
  21. Mary,

    i am trying to do the bio.

    how do i amend it or update it...i am diagnosed and i did get tests back that it says i didn't.

    i'm having trouble doing this and also posting any pics.

    I want to get this all organized and i also don't see my drs name that i put in the bio.

    thanks,

    Lili

    1. MaryO

      MaryO

      I have your doctor's info for the Helpful Doctor's list but haven't had a chance to format it yet for the list.  Sorry :(

      You can amend or update your bio by using the same form - https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/ - and checking the box  "Is this an update to a past bio?"

      When you check yes, a box will pop up to enter the URL of your bio.  In your case, you'd enter https://cushingsbios.com/2019/05/19/lili-undiagnosed-bio/

  22. 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

    1. lilio

      lilio

      update: IPPS procedure changed to June 26, 2019

  23. 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
  24. Adrenocorticotropic hormone (ACTH)-independent Cushing's syndrome (CS) is mostly due to unilateral tumors, with bilateral tumors rarely reported. Its common causes include primary pigmented nodular adrenocortical disease, ACTH-independent macronodular adrenal hyperplasia, and bilateral adrenocortical adenomas (BAAs) or carcinomas. BAAs causing ACTH-independent CS are rare; up to now, fewer than 40 BAA cases have been reported. The accurate diagnosis and evaluation of BAAs are critical for determining optimal treatment options. Adrenal vein sampling (AVS) is a good way to diagnose ACTH-independent CS. A 31-year-old woman had a typical appearance of CS. The oral glucose tolerance test showed impaired glucose tolerance and obviously increased insulin and C-peptide levels. Her baseline serum cortisol and urine free cortisol were elevated and did not show either a circadian rhythm or suppression with dexamethasone administration. The peripheral 1-deamino-8-D-arginine-vasopressin (DDVAP) stimulation test showed a delay of the peak level, which was 1.05 times as high as the baseline level. Bilateral AVS results suggested the possibility of BAAs. Abdominal computed tomography showed bilateral adrenal adenomas with atrophic adrenal glands (right: 3.1 cm × 2.0 cm × 1.9 cm; left: 2.2 cm × 1.9 cm × 2.1 cm). Magnetic resonance imaging of the pituitary gland demonstrated normal findings. A left adenomectomy by retroperitoneoscopy was performed first, followed by resection of the right-side adrenal mass 3 mo later. Biopsy results of both adenomas showed cortical tumors. Evaluations of ACTH and cortisol showed a significant decrease after left adenomectomy but could still not be suppressed, and the circadian rhythm was absent. Following bilateral adenomectomy, this patient has been administered with prednisone until now, all of her symptoms were alleviated, and she had normal blood pressure without edema in either of her lower extremities. BAAs causing ACTH-independent CS are rare. AVS is of great significance for obtaining information on the functional state of BAAs before surgery. World journal of clinical cases. 2019 Apr 26 [Epub] Yu-Lin Gu, Wei-Jun Gu, Jing-Tao Dou, Zhao-Hui Lv, Jie Li, Sai-Chun Zhang, Guo-Qing Yang, Qing-Hua Guo, Jian-Ming Ba, Li Zang, Nan Jin, Jin Du, Yu Pei, Yi-Ming Mu Department of Endocrinology, Chinese People's Liberation Army General Hospital, Beijing 100853, China., Department of Endocrinology, Chinese People's Liberation Army General Hospital, Beijing 100853, China. guweijun301@163.com., Department of Pathology, Chinese People's Liberation Army General Hospital, Beijing 100853, China. PubMed http://www.ncbi.nlm.nih.gov/pubmed/31119141 From https://www.urotoday.com/recent-abstracts/urologic-oncology/adrenal-diseases/112782-bilateral-adrenocortical-adenomas-causing-adrenocorticotropic-hormone-independent-cushing-s-syndrome-a-case-report-and-review-of-the-literature.html
  25. Scientists have discovered a potential biological reason why women are more likely to develop adrenal disorders, including cancer. According to the researchers, the answer could lie in the increased turnover of hormone-producing cells found in the adrenal glands of females. The adrenal gland is a hormone producing organ that sits on top of the kidneys. The outer part, or cortex, is responsible for the production of several hormones, including the stress-related hormone cortisol and the blood pressure controlling aldosterone. Adrenal cancer is relatively rare but occurs approximately three times more in women than in men. The cellular basis for this difference has not been investigated in detail but uncovering it might lead to sex-specific treatments and has huge implications for many areas of research. Dr Andreas Schedl, from INSERM, France, who led the study said: To our surprise we found that adrenal cells in female mice show a much more rapid turnover compared to males, which we could trace back to a different behaviour of adrenal stem cells between the two sexes. Furthermore, we could show that the observed differences are due to hormones that are produced by testes that suppress cell division, thus slowing down renewal in the male adrenal." The scientists studied the adrenal cortex of male and female adult mice and found that female mice replace their entire set of hormone-producing cells within 3 months, while it takes male mice an entire 9 months. Using different techniques to label cells within the adrenal cortex, they established that females not only have a higher proliferation rate of cells, but also recruit stem cells from a different part of the adrenal gland. The research has wide reaching implications, as it demonstrates the basic mechanism underlying the increased turnover of cells within the adrenal gland, providing a possible explanation for the increased incidence of adrenal disorders in women. Dr Schedl explained: "It is early days and many more experiments will need to be performed before our research can directly benefit patients. However, we believe that our study teaches a number of important lessons that are of immediate relevance to scientists, pharmacologists and clinicians." This research might lead to sex-specific treatment options for diseases like adrenal cancer and, according to Dr Schedl, could have implications on a far wider field of disorders: "Importantly, while our study concentrated on the adrenals, we are convinced that similar differences may also be found in other organ systems." Dr Helen Rippon, Chief Executive of the charity Worldwide Cancer Research, whose supporters helped fund the study, said: "Sex differences are not necessarily the first thing that comes to mind when thinking about cancer research or treatments. But this study has shown that it is crucial to consider potential differences between male and female when trying to understand the basis of cancer biology. Most importantly, these findings could have implications for treatment options further down the line and highlight the importance of early-stage, discovery research. We are delighted to fund this kind of research, as we believe that these innovative approaches are ultimately going to lead to a world where no life is cut short by cancer." Worldwide Cancer Research, La Ligue Contre le Cancer and the ANR supported this research. The research was published in Cell Stem Cell. Source: Worldwide Cancer Research Journal reference: Grabek, A. et al. (2019) The Adult Adrenal Cortex Undergoes Rapid Tissue Renewal in a Sex-Specific Manner. Cell Stem Cell. doi.org/10.1016/j.stem.2019.04.012. From https://www.news-medical.net/news/20190522/Scientists-discover-biological-reason-why-women-are-more-likely-to-develop-adrenal-disorders.aspx
  26. In patients with a diagnosis of Cushing disease in whom magnetic resonance imaging (MRI) shows either no abnormalities or nonspecific abnormalities, surgery is preferable to medical treatment...There is a consensus that the first line of treatment for Cushing disease is transsphenoidal surgery to remove the pituitary adenoma causing the disease, with an 80% remission rate following the intervention. However, in the absence of clear evidence of a pituitary adenoma on imaging, there is some controversy regarding the best treatment.

    Read more at https://cushieblog.com/2019/05/25/transsphenoidal-surgery-recommended-for-cushing-disease-with-inconclusive-or-normal-mri/

  27. In patients with a diagnosis of Cushing disease in whom magnetic resonance imaging (MRI) shows either no abnormalities or nonspecific abnormalities, surgery is preferable to medical treatment, according to study results published in The Journal of Clinical Endocrinology & Metabolism. There is a consensus that the first line of treatment for Cushing disease is transsphenoidal surgery to remove the pituitary adenoma causing the disease, with an 80% remission rate following the intervention. However, in the absence of clear evidence of a pituitary adenoma on imaging, there is some controversy regarding the best treatment. The goal of this retrospective single-center study was to assess the outcomes of surgery in patients with Cushing disease with clear evidence of a pituitary adenoma on MRI compared with outcomes in patients with inconclusive or normal MRI. The cohort included 195 patients treated with transsphenoidal surgery between 1992 and 2018 (156 women; mean age at surgery, 41 years) classified into 4 MRI groups: 89 patients were found to have microadenoma, 18 had macroadenoma, 44 had nonspecific/inconclusive abnormalities on MRI results, and 44 had normal imaging results. The researchers reported that MRI performance in their neuroradiology department improved with time; the proportion of inconclusive or normal MRI results decreased from 60% in 1992 to 1996 to 27% in 2012 to 2018 (P =.037). In analyzing the influence of MRI findings on remission rates, the researchers found no significant difference among the 4 groups: remission rate was 85% for microadenomas, 94% for macroadenomas, 73% for inconclusive MRI, and 75% for negative MRI (P =.11). This finding indicates the overall percentage of patients in remission after transsphenoidal surgery is only slightly lower in those with normal or inconclusive MRI results compared with patients with clear evidence of microadenoma or macroadenoma. There was no difference in remission rate after a microscopic vs endoscopic surgical approach (P =.16). The researchers found that endoscopic-assisted surgery allowed a higher visualization rate than microscopic-assisted surgery. Although the neurosurgeon had a better visualization rate than MRI (100% vs 72%, respectively), there were some false-positive findings; thus, positive predictive value was similar (84% vs 78%, respectively). The study had several limitations including the retrospective design. In addition, in light of the long study duration, the researchers noted that changes in MRI technology and surgical procedures occurred over time. The researchers proposed that after exclusion of nonneoplastic hypercortisolism, patients with Cushing disease, an inconclusive or normal MRI, and a pituitary adrenocorticotropic hormone gradient at bilateral inferior petrosal sampling be directed to an expert neurosurgeon for transsphenoidal surgery rather than treated medically. Reference Cristante J, Lefournier V, Sturm N, et al. Why we should still treat by neurosurgery patients with Cushing’s disease and a normal or inconclusive pituitary MRI [published online May 14, 2019]. J Clin Endocrinol Metab. doi:10.1210/jc.2019-00333 From https://www.endocrinologyadvisor.com/home/topics/adrenal/transsphenoidal-surgery-recommended-for-cushing-disease-with-inconclusive-or-normal-mri/
  28. MaryO

    Please help!!

    It sure sounds like you're on the right track!
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