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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
    This is such great news, Donna - the endo sounds fantastic. Can you please share his info with others so that they might have a faster diagnosis, too? Hopefully, surgery will be soon and on to remission!
  5. 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?
  6. 1 point
    In patients with Cushing’s disease, removing the pituitary tumor via an endoscopic transsphenoidal surgery (TSS) leads to better remission rates than microscopic TSS, according to new research. But regardless of surgical approach, plasma cortisol levels one day after surgery are predictive of remission, researchers found. The study, “Management of Cushing’s disease: Changing trend from microscopic to endoscopic surgery,” was published in the journal World Neurosurgery. Because it improves visualization and accessibility, endoscopic TSS has been gaining popularity over microscopic TSS to remove pituitary tumors in Cushing’s disease patients. Yet, although this surgery has been associated with high remission rates, whether it outperforms microscopic surgery and determining the factors affecting long-term outcomes may further ease disease recurrence after TSS. A team with the All India Institute of Medical Sciences addressed this topic in 104 patients who underwent surgery from January 2009 to June 2017. Among these patients, 47 underwent microscopic surgery and 55 endoscopic surgery. At presentation, their ages ranged from 9 to 55 (mean age of 28). Also, patients had been experiencing Cushing’s symptoms over a mean duration of 24 months. Eighty-seven patients showed weight gain. Hypertension (high blood pressure) and diabetes mellitus were among the most common co-morbidities, found in 76 and 33 patients, respectively. Nineteen patients had osteoporosis and 12 osteopenia, which refers to lower-than-normal bone mineral density. As assessed with magnetic resonance imaging, 68 patients had a microadenoma (a tumor diameter smaller than one centimeter) and 27 had a macroadenoma (a tumor one centimeter or larger). Only two patients had an invasive pituitary adenoma. Two patients with larger tumors were operated on transcranially (through the skull). The surgery resulted in total tumor removal in 90 cases (86.5%). A blood loss greater than 100 milliliter was more common with endoscopic than with microscopic TSS. Ten patients developed transient diabetes inspidus, two experienced seizures after surgery, and six of nine patients with macroadenoma and visual deterioration experienced vision improvements after TSS. The incidence of intraoperative leak of cerebrospinal fluid — the liquid surrounding the brain and spinal cord — was 23.2%, while that of post-operative leak was 7.7% and was more common in microadenoma than macroadenoma surgery (9.8% vs. 5.0%). Seventeen patients were lost to follow-up and two died due to metabolic complications and infections. The average follow-up was shorter for endoscopic than with microscopic surgery (18 months vs. 35 months). Among the remaining 85 cases, 65 (76.5%) experienced remission, as defined by a morning cortisol level under 5.0 μg/dL, restored circadian rhythm (the body’s internal clock, typically impaired in Cushing’s patients), and suppression of serum cortisol to below 2 μg/dl after overnight dexamethasone suppression test. The remission rate was 54.5% in pediatric patients and was higher with endoscopic than with microscopic TSS (88.2% vs. 56.6%). Also, patients with microadenoma showed a trend toward more frequent remission than those with macroadenoma (73.2% vs. 64.3%). Ten of the remaining 20 patients experienced disease recurrence up to 28 months after surgery. Sixteen cases revealed signs of hypopituitarism, or pituitary insufficiency, which were managed with replacement therapy. A subsequent analysis found that morning cortisol level on day one after surgery was the only significant predictor of remission. Specifically, a one-unit increase in cortisol lowered the likelihood of remission by 7%. A cortisol level lower than 10.7 μgm/dl was calculated as predicting remission. Overall, the study showed that “postoperative plasma cortisol level is a strong independent predictor of remission,” the researchers wrote, and that “remission provided by endoscopy is significantly better than microscopic approach.” From https://cushingsdiseasenews.com/2019/09/24/cortisol-levels-predict-remission-cushings-patients-undergoing-transsphenoidal-surgery/
  7. 1 point
    Abstract OBJECTIVE: To report our management of bilateral adrenalectomy with autologous adrenal gland transplantation for persistent Cushing's disease, and to discuss the feasibility of autologous adrenal transplantation for the treatment of refractory Cushing's disease. MATERIAL AND METHODS: A retrospective analysis was performed in 4 patients (3 females, aged 14-36 years) who underwent autologous adrenal transplantation for persistent Cushing's disease after endonasal transsphenoidal resection of a pituitary tumor. The procedure was performed by implanting a vascularized adrenal graft into the left iliac fossa with direct and indirect anastomoses. Postoperative follow-up was performed in 1, 1.5, 8, and 10 years, and an over 8-year long-term follow-up was reached in 2 out of the 4 cases. Hormone replacement dosage was guided by clinical symptoms and endocrine results including serum cortisol (F), 24 h urine-free cortisol, and adrenocorticotrophic hormone levels. RESULTS: All 4 patients with symptomatic Cushing's disease experienced resolution of symptoms after autotransplantation without Nelson Syndrome. Functional autografts were confirmed through clinical evaluation and endocrine results. One year after transplantation, adrenal function and hormone replacement dosage remained stable without adrenal hyperplasia. After long-term follow-up, dosages of hormone replacement were reduced in all patients. CONCLUSIONS: In this series of 4 patients, we demonstrate the long-term efficacy of bilateral adrenalectomy with autologous adrenal transplantation and propose this procedure as a viable treatment option for refractory Cushing's disease. © 2019 S. Karger AG, Basel. KEYWORDS: Cortisol; Adrenalectomy; Autologous adrenal gland transplantation ; Cushing’s disease; Nelson syndrome PubMed http://www.ncbi.nlm.nih.gov/pubmed/31434089 TAGS: cortisol, adrenalectomy, Autologous adrenal gland transplantation , Cushing's disease, Nelson syndrome
  8. 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
  9. 1 point
  10. 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.
  11. 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
  12. 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.
  13. 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
  14. 1 point
    Increased cortisol secretion may follow a cyclic pattern in patients with adrenal incidentalomas, a phenomenon that may lead to misdiagnosis, a study reports. Since cyclic subclinical hypercortisolism may increase the risk for heart problems, researchers recommend extended follow-up with repeated tests to measure cortisol levels in these patients. The study, “Cyclic Subclinical Hypercortisolism: A Previously Unidentified Hypersecretory Form of Adrenal Incidentalomas,” was published in the Journal of Endocrine Society. Adrenal incidentalomas (AI) are asymptomatic masses in the adrenal glands discovered on an imaging test ordered for a problem unrelated to adrenal disease. While most of these benign tumors are considered non-functioning, meaning they do not produce steroid hormones like cortisol, up to 30% do produce and secrete steroids. Subclinical Cushing’s syndrome is an asymptomatic condition characterized by mild cortisol excess without the specific signs of Cushing’s syndrome. The long-term exposure to excess cortisol may lead to cardiovascular problems in these patients. While non-functioning adenomas have been linked with metabolic problems, guidelines say that if excess cortisol is ruled out after the first evaluation, patients no longer need additional follow-up. However, cortisol secretion can be cyclic in Cushing’s syndrome, meaning that clinicians might not detect excess amounts of cortisol at first and misdiagnose patients. In an attempt to determine whether cyclic cortisol production is also seen in patients with subclinical Cushing’s syndrome and whether these patients have a higher risk for metabolic complications, researchers in Brazil reviewed the medical records of 251 patients with AI — 186 women, median 60 years old — followed from 2006 to 2017 in a single reference center. Cortisol levels were measured after a dexamethasone suppression test (DST). Dexamethasone is used to stop the adrenal glands from producing cortisol. In healthy patients, this treatment is expected to reduce cortisol levels, but in patients whose tumors also produce cortisol, the levels often remain elevated. Patients were diagnosed with cyclic subclinical Cushing’s syndrome if they had at least two normal and two abnormal DST tests. From the 251 patients, only 44 performed the test at least three times and were included in the analysis. The results showed that 20.4% of patients had a negative DST test and were considered non-functioning adenomas. An additional 20.4% had elevated cortisol levels in all DST tests and received a diagnosis of sustained subclinical Cushing’s syndrome. The remaining 59.2% had discordant results in their tests, with 18.3% having at least two positive and two negative test results, matching the criteria for cyclic cortisol production, and 40.9% having only one discordant test, being diagnosed as possibly cyclic subclinical Cushing’s syndrome. Interestingly, 20 of the 44 patients had a normal cortisol response at their first evaluation. However, 11 of these patients failed to maintain normal responses in subsequent tests, with four receiving a diagnosis of cyclic subclinical Cushing’s syndrome and seven as possibly cyclic subclinical Cushing’s. Overall, the findings suggest that patients with adrenal incidentalomas should receive extended follow-up with repeated DST tests, helping identify those with cyclic cortisol secretion. “Lack of recognition of this phenomenon makes follow-up of patients with AI misleading because even cyclic SCH may result in potential cardiovascular risk,” the study concluded. From https://cushingsdiseasenews.com/2019/04/11/cyclic-cortisol-production-may-lead-to-misdiagnosis-in-cushings-study-finds/
  15. 1 point
    Written by Kathleen Doheny With Oskar Ragnarsson, MD, PHD, and Tamara Wexler, MD, PhD Adults with Cushing's syndrome, also called hypercortisolism, have a three-fold higher risk of dying from heart disease compared to the general population,1 according to findings reported by a Swiss research team. Although the researchers found that the risk drops when patients are under care, receiving treatment, and are in remission, the risks don't disappear completely. For some perspective, heart disease is common in the United States, affecting, one in four adults, regardless of health status.2 "Patients with Cushing's disease have excess mortality [risk]," says Oskar Ragnarsson, MD, PhD, associate professor and a senior consultant in internal medicine and endocrinology at Sahlgrenska University Hospital in Gothenburg, Sweden. He is the author of the study, which appears in the Journal of Clinical Endocrinology & Metabolism. Having Cushing's Requires Vigilance Beyond Disease Symptoms Still, the news is not all bleak, he says. Simple awareness of the increased risks can help individuals reduce their risk, just as following your doctor’s treatment plan so remain in remission, Dr. Ragnarsson tells EndocrineWeb. In addition, patients who received growth hormone replacement appear to have better overall outcomes.1 Cushing’s syndrome occurs when your body is exposed to high levels of the hormone cortisol over a long period of time. This can be caused either by taking corticosteroid medicine orally, or if your body just makes too much cortisol. Common symptoms of this condition include: having a fatty hump between the shoulders, a rounded face, and stretch marks with pink or purple coloring on the skin. Complications, if Cushing’s disease goes untreated, may include bone loss (leading to increased risk of fractures and osteoporosis), high blood pressure, type 2 diabetes, and other problems. Usual treatment includes medication and surgery that are aimed to normalize cortisol levels.3 Increased Risks Are Cause for Concern in Cushing’s Disease The researchers analyzed data from 502 men and women, all of whom were diagnosed with Cushing's disease between 1987 and 2013 as indicated in a Swedish health database.1 The average age of these patients at diagnosis was 43 years, and, 83% of these individuals were in remission. During a median follow up of 13 years—half followed for longer, half followed for less time—the researchers noted 133 deaths, more than the 54 that had been anticipated in this patient population. From this data,1 Dr. Ragnarsson and his team calculated that people with Cushing's disease were about 2.5 times more likely to die than the general population. The most common reason, with more than a 3-fold increased risk, was attributed to events associated with cardiovascular disease, encompassing both heart disease and stroke. This group also appeared to have a higher risk of death from infectious and respiratory diseases, and conditions related to gastrointestinal problems. Fortunately, just being in disease remission helps to reduce the risk of all-cause mortality,1 the researchers' report, with both men and women whose Cushing’s disease is well-managed having a two-fold lower risk of death during the follow-up period.1 Those in remission who were receiving growth hormone had an even lower risk of death than those on other forms of treatment. In addition, the researchers looked at the 55 patients with Cushing’s disease who were in remission and also had diabetes, finding that their risks remained the same. In other words, despite a strong relationship between diabetes and increased heart disease, the risks of death were not increased in this group of patients.1 In considering the impact that treatments may have, the researchers found: 3 in 4 of these patients (75%) had undergone pituitary surgery 28% had undergone radiotherapy 1 in 4 (24%) had had both adrenal glands removed Those who had their adrenal glands removal experienced a 2.7-fold higher risk of death, while those who were treated with radiotherapy or had pituitary surgery did not have an increased risk associated with cardiovascular events. When glucocorticoid therapy was added, it did not affect results, according to Dr. Ragnarsson and his research team. Bottom line? "Even though patients in remission have a better prognosis than patients not in remission, they still have more than a 2-fold increased mortality [risk]," he says. The study, he says, is the first to uncover a high rate of death from suicide in Cushing's patients. It has been reported before, but the numbers found in this study were higher than in others. The findings, he says, emphasize the importance of treating Cushing's with a goal of remission. Ongoing surveillance and management are crucial, he says. "Also, evaluation and active treatment of cardiovascular risk factors and mental health is of utmost importance," Dr. Ragnarsson tells EndocrineWeb. Remission Reduces But Doesn't Eliminate Serious Risks The study findings underscore the message that ''the priority for patients is to achieve biochemical remission," says Tamara L. Wexler, MD, PhD, director of the NYU Langone Medical Center Pituitary Center, in reviewing the findings for EndocrineWeb. "One question raised by the study findings is whether patients listed as being in remission were truly in (consistent) remission," Dr. Wexler says. "One or more of several testing methods may have been used, and the data were based on medical record reviews so we can’t be certain about the status of these patients’ remission. In addition, we don’t know how much excess cortisol patients were exposed over time, which may change their risks.'' I have another concern about the findings, she says. While the method of analysis used in the study suggests that the length of time from diagnosis to remission is not associated with increased death risk, ''it may be that the total exposure to excess cortisol—the amplitude as well as duration—is related to morbidity [illness] and mortality [death] risk.'' And, she adds, any negative effects experienced by patients with Cushing’s disease may be reduced further as remission status continues. In addition, Dr. Wexler considers the authors' comments that sustained high cortisol levels may impact the cardiovascular system in a way that is chronic and irreversible ''may be overly strong." She believes that the total cortisol exposure and the duration of remission may both play important roles in patients' ongoing health. She does agree, however, with the researchers' recommendation of the need to treat heart disease risk factors more aggressively in patients with a history of Cushing's disease. Equally important, is for patients to be warned that there is an increased concern about suicide, she says, urging anyone with Cushing’s disease to raise all of these concerns with your health practitioner. Overall, the study findings certainly suggest that it is important for you to know that if you have Cushing’s syndrome, you are at increased risk for not just heart disease but also mental health disorders and other ailments than the general population, she says, and that the best course of action is to work closely with your doctor to achieve remission and stick to your overall treatment plan. Steps to Take to Reduce Your Risks for Heart Disease and Depression Dr. Ragnarsson suggests those with Cushing's disease make adjustments as needed to achieve the following risk-reducing strategies: Be sure your food choices meet the parameters of a heart-healthy diet You are getting some kind of physical activity most every day You see your doctor at least once a year to have annual checks of your blood pressure, blood sugar, and other heart disease risk factors. For those of you receiving cortisone replacement therapy, you should be mindful of the need to have a boost in your medication dose with your doctors' supervision when you're are sick or experiencing increased health stresses. From https://www.endocrineweb.com/news/adrenal-disorders/61675-cushings-disease-stresses-your-heart-your-mental-health
  16. 1 point
    Journal of Clinical Endocrinology and Metabolism — Lee IT, et al. | February 07, 2019 Using immunohistochemistry, researchers determined whether adipose tissue (AT) inflammation in humans is associated with chronic endogenous glucocorticoid (GC) exposure due to Cushing’s disease (CD). Abdominal subcutaneous AT samples were evaluated for macrophage infiltration and mRNA expression of pro-inflammatory cytokines in 10 patients with active CD and 10 age, gender and BMI- matched healthy subjects. The presence of AT macrophages, a hallmark of AT inflammation, increases chronic exposure to GCs due to CD. AT inflammation can, therefore, be the source of systemic inflammation in these patients, which in turn can contribute to obesity, insulin resistance and cardiovascular disease. In patients with CD, PCR showed no differences in mRNA expression of any analyzed markers. Read the full article on Journal of Clinical Endocrinology and Metabolism
  17. 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
  18. 1 point
    Tumors located outside the pituitary gland that produce the adrenocorticotropic hormone (ACTH) may cause, on rare occasions, cyclic Cushing’s syndrome — when cortisol levels show substantial fluctuations over time. That finding, based on the case of a patient with ACTH-secreting lung cancer, is found in the study, “Cyclic Cushing’s syndrome caused by neuroendocrine tumor: a case report,” which was published in Endocrine Journal. Cushing’s syndrome is characterized by too much cortisol, either due to adrenal tumors that produce cortisol in excess, or because too much ACTH in circulation — resulting from ACTH-producing tumors — act on the adrenal glands to synthesize cortisol. Cyclic Cushing’s syndrome (CCS) is a rare type of Cushing’s in which cortisol production is not steadily increased. Instead, it cyclically fluctuates, from periods with excessive cortisol production interspersed with periods of normal levels. The fluctuations in cortisol levels over time pose difficulties for a definite diagnosis. Moreover, the precise mechanism underlying the periodic peaks of cortisol peaks are unknown. Investigators now reported the case of a 37-year-old man admitted to the hospital due to repeated attacks of dizziness, weakness, and high cortisol levels for two weeks. Repeated tests measuring the levels of cortisol in the blood and a 24-hour urine free cortisol (24 hUFC) assay confirmed a cyclic fluctuation of cortisol, with levels peaking three times and dropping twice (the standard rule for diagnosing CSC). Upon hospitalization, he further developed high blood pressure and weight gain. The patient underwent computed tomography (CT) scans, which revealed the presence of an ACTH-secreting tumor in the lungs, the likely cause of the patient’s Cushing’s symptoms. These type of tumors are called neuroendocrine tumors because they are able to release hormones into the blood in response to signals from the nervous system. Additional scans detected tumors in the adrenal and pituitary glands, but further analysis revealed they were non-functioning tumors, i.e., as their name indicates, they didn’t release excessive ACTH. The thyroid gland also was positive for a tumor. The patient underwent resection surgery to remove the tumor located in the lungs and nearby lymph nodes. After the surgery, the levels of cortisol in the blood and urine returned to normal, confirming the tumor as the source of the CSC. The patient also received surgery to remove his thyroid tumor. An analysis of the patient’s genomic DNA revealed a novel mutation in the PDE11A gene, which is linked to a rare form of ACTH-independent Cushing’s syndrome called primary pigmented nodular adrenocortical disease (PPNAD) type 2. Whether the patient developed PPNAD, however, and the contribution of a potential PPNAD diagnosis to the CCS, requires further investigation. “To explore pathogenicity of the genetic mutation, we will still plan for a follow-up visit to this patient,” researchers wrote. From https://cushingsdiseasenews.com/2019/01/24/patient-develops-cyclic-cushings-syndrome-due-to-lung-neuroendocrine-tumor/
  19. 1 point
    Thank you Shaw. The endo walked in the room, introduced himself, took a good look at me and my pictures and asked me if I had ever heard of Cushings? He told me that I was in good hands and that he would set me up with a great neurosurgeon. The tears just rolled down my face. I just want my life back! I promise never to take life for granted again.
  20. 1 point
    I don't think so - this is the first I have heard of a Rife Machine so I looked it up and found this info: Anyone else? Have you heard of this for Cushing's? Frantbri, are you going to try it? If so, please keep us posted! It would be great if something like this worked.
  21. 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.
  22. 1 point
    These are pictures of me taken 3 years apart. 45lb weight gain.
  23. 1 point
    I never had a hump and I definitely had Cushing's Disease. Get some tests and a good doctor.
  24. 1 point
    If the Endo does not want to order midnight saliva Cortisol tests go elsewhere.
  25. 1 point
    Cushing's Podcast Interview Information Scheduled Interviews If you want to be interviewed, please choose "yes" on this form A time will be arranged for your interview. On that day, please call the guest call-in number about 5-10 minutes before the interview is scheduled. You can chat informally with the MaryO before the chat begins. You will hear the BlogTalk lady say "BlogTalkRadio" and there will be some Cushing's theme music followed by your introduction and welcome. The first question will be asked. Talk normally, just like you're on the phone chatting with friends. Archived audio is available through BlogTalkRadio or through iTunes Podcasts This player will play either the last recorded show or, if the show is currently occurring, you can hear the live show. Subscribe to the CushingsHelp podcasts on iTunes Think of our podcast as a radio show on Cushing's. The show consists of many "episodes". You can listen on your computer, or your iPods, completely free of charge. To listen, you will need to "subscribe" to the podcast feed using a "podcatcher" application such as iTunes. After you subscribe, each time you launch iTunes, it will automatically check if new episodes are available and if yes, it will download the most recent episode to your computer for you to hear. Then you can sync your iPod with iTunes to get the show onto your iPod for listening on the go. For help in subscribing to podcasts with iTunes, you can use this tutorial from Apple or if you're iTunes savvy, you can subscribe now! To be interviewed, please be sure to include your name, email address and check the box that says "Would you like to be considered for a phone interview?"
  26. 1 point
    We have a new form to add your own bio! Try it out here: https://cushingsbios.com/2018/08/28/we-have-a-new-bio-form/ Thank you for submitting your bio - sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed. If you are planning to check the button that reads "Would you like to be considered for an interview? (Yes or No)" please be sure to read the Interview Page for information on how these interviews work. Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing's patients and has already been asked and answered on the Message Boards. Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link. Please post any questions for which you need answers on the message boards. HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
  27. 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!
  28. 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.
  29. 1 point
  30. 1 point
    Sharon, I'm not sure of the answer to this question, but I have occasional itching. Mine started in perimenopause and it was helped by first taking estrogen pills, then weaning off them and onto soy shakes. When I became menopausal, the itching seemed to have stopped but it's returned in recent years. Only occasionally, but about every month I get intense random itching. Benadryl helps. Because of the seemingly cyclical pattern to the itching, I asked my endo about it and he said I should get my liver tested. (I didn't. I just put up with the itching when it happens). So I don't know the answer to this question but know that you're not alone! Best of luck to you.
  31. 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.
  32. 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!
  33. 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.
  34. 1 point
    I just wanted to say hello. You are in such good hands at the NIH. I too, had surgery there and they saved my life. I hope things are going well for you.
  35. 1 point
    Ectopic Cushing’s syndrome can be challenging to diagnose, especially when it comes identifying the problem source. But appropriate hormone management protocols, used in combination with advanced imaging methods, may help physicians identify ectopic ACTH-producing tumors. The findings in a case report of a young man with ectopic Cushing’s syndrome were published in the International Journal of Surgery Case Reports, under the title “Case report: Ectopic Cushing’s syndrome in a young male with hidden lung carcinoid tumor.” Cushing’s syndrome is caused by high amounts of glucocoticosteroids in the blood. The most common cause is a malfunction of the glands that produce these hormones. In some cases, however, the disease may be caused by tumors elsewhere in the body that have the ability to produce adrenocorticotropic hormone (ACTH). In half of all Cushing’s patients, ectopic ACTH is produced by small lung cell carcinomas or lung carcinoids (a type of slow-growing lung cancer). But some tumors in the thymus and pancreas also have been found to produce ACTH. Researchers at Damascus University Hospital in Syria presented the case of a 26-year-old man who had ectopic Cushing’s syndrome due to lung carcinoids. The patient presented with increased appetite and rapid weight gain for more than a year. These were associated with headache, fatigue, proximal muscle weakness, and easy bruising. He had no family history of hormonal disorder. Based on the initial physical and symptom evaluation, the clinical team suspected Cushing’s syndrome. Blood analysis revealed high levels of cortisol and ACTH hormones, which supported the diagnosis. Administration of dexamethasone, a treatment used to inhibit the production of glucocoticosteroids by the pituitary gland, reduced cortisol levels within normal range, but not ACTH levels. This led to the diagnosis of ectopic Cushing’s syndrome. The next step was to identify the tumor causing the syndrome. The team conducted imaging studies of the brain, chest, and abdomen, but found no tumor. Because ectopic ACTH is commonly produced by lung cancers, the team then analyzed the patient’s lungs. Again, they failed to detect a tumor. The patient was discharged with prescription of 200 mg of Nizoral (ketoconazole) once-daily, calcium, and vitamin D. After three months of treatment, he remained stable, with no evidence of symptom improvement. At this point, the team decided to surgically remove both adrenal glands in an attempt to reduce the hormone levels. Treatment with prednisolone 5 mg and fludrocortisone 0.1 mg once daily was initiated, along with calcium and vitamin D. Eighteen months later, the patient’s condition worsened and he required hospitalization. Imaging tests targeting the neck, chest, and abdomen were conducted again. This time, physicians detected a 2 cm mass in the middle lobe of the right lung, which was removed surgically. Detailed analysis of the small tumor confirmed that it was the source of the excessive ACTH. “ACTH secreting tumors can be very hard to detect,” the researchers stated. “Initial failed localization is common in ectopic ACTH syndrome and it is usually due to carcinoid.” Cases where the ectopic ACTH production is caused by a carcinoid tumor can be challenging to diagnose because tumors are small and relatively slow-growing. Imaging data is often hard to analyze and the tumors can be confused with pulmonary vessels, the researchers explained. “In such cases we should first aim to lower blood cortisol medically or through bilateral adrenalectomy to avoid Cushing’s complications,” which should then “be followed up through imaging studies (CT, MRI, scintigraphy or PET) to detect the tumor and resect it, which is the definitive treatment of these patients,” the researchers concluded. From https://cushingsdiseasenews.com/2017/12/12/case-report-ectopic-acth-producing-lung-tumors-can-hard-detect/
  36. 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?
  37. 1 point
    Hi, Sorry I'm late responding. I have only recently returned to the boards. I have a couple of things to say about fat pads over the collar bones. First is to make sure they are fat pads. You say they are tender, to make sure its not swollen glands, hunch your shoulders up to your ears and feel inside your collarbone for any hard lumps. If this test shows no hard lumps then it most likely is fat pads. One of the most common reasons for fat pads over the collar bones is stress. Cortisol is our stress hormone. So it certainly wont hurt to have cortisol levels checked. 24 hr Urine, with Midnight saliva test followed by an early morning Blood cortisol and ACTH test should give a good picture of if it is cushing or something else. Just know that one test in the normal range does not rule out cushings, just as one abnormal result doesnt confirm cushings. It takes a range of tests over several months to get a diagnosis. Because the treatment is pretty serious, your medical team will want to make sure what they are doing is right for you. I know it can be frustrating lol it was for me. But I have learnt that my Medical team does have my best interests at heart, even if they did consider that I was somehow making myself sick !! I proved them wrong For me.... If you think there is something not right, go with your gut and get it checked out. You know your body and every body is different :). So one scenario is not going to be exactly alike Good luck
  38. 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/
  39. 1 point
    The dried urine isn't really going to be helpful for looking into Cushing's. You'd be better off doing a 24 hour urinary cortisol if your doctor will order one.
  40. 1 point
    You said you did a urine test; was that a 24 hour urine test? What can happen with Cushing's is you have high cortisol levels at night but very low ones during the morning/day and if you do a 24 hour urine sometimes these almost cancel each other out and your result is a completely normal urine test.
  41. 1 point
    Shaw is correct. Most of the info on this board is available to members only to protect their privacy. We hope you join us so you can read everything and share with us. In the meantime, there's information about IPSS on our Wiki at http://www.cushings-info.com/index.php?title=Diagnostic_Testing#Petrosal_Sinus_Sampling Best of luck to you!
  42. 1 point
    Researchers have determined mutations in the gene CABLES1 may lead to Cushing syndrome, a rare disorder in which the body overproduces the stress hormone cortisol. The National Institutes of Health study findings published in Endocrine-Related Cancer found four of the 181 children and adult patient examined had mutant forms of CABLES1 that do not respond to cortisol. The determination proved significant because normal functioning CABLES1 protein, expressed by the CABLES1 gene, slows the division and growth of pituitary cells that produce the hormone adrenocorticotropin (ACTH). Researchers at the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) joined scientists from other institutions in the United States, France and Canada, in the evaluation. “The mutations we identified impair the tumor suppressor function in the pituitary gland,” Constantine A. Stratakis, the study’s senior author and director of the NICHD Division of Intramural Research, said. “This discovery could lead to the development of treatment strategies that simulate the function of the CABLES1 protein and prevent recurrence of pituitary tumors in people with Cushing syndrome.” Cushing syndrome symptoms include obesity, muscle weakness, fatigue, high blood pressure, high blood sugar, depression and anxiety, officials said, adding excess cortisol found in the disorder can result from certain steroid medications or from tumors of the pituitary or adrenal glands. Researchers maintain that more studies are needed to fully understand how CABLES1 suppresses tumor formation in the pituitary gland. From https://lifesciencedaily.com/stories/21624-study-links-genetic-mutations-cushing-syndrome/
  43. 1 point
    I plan to do the Cushing's Awareness Challenge again. Last year's info is here: http://cushie-blogger.blogspot.com/2016/03/fifth-annual-cushings-awareness.html That page is getting very slow loading, so I've moved my own posts to a new blog at https://cushieblogger.com 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 here on Facebook at Cushings Help Organization, Inc 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 Sixth 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 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…?
  44. 1 point
    October 1, 2012 at 6:30 PM eastern, Dr. Amir Hamrahian will answer our questions about Cushing's, pituitary or adrenal issues and Korlym (mifepristone) in BlogTalkRadio at http://www.blogtalkr...s-our-questions You may listen live at the link above. The episode will be added to the Cushing's Help podcast after the show is over. Listen to the podcasts by searching for Cushings in the iTunes podcast area or click here: http://itunes.apple....ats/id350591438 Dr. Hamrahian has had patients on Korlym for about 4 years. Please submit your questions below or email them to CushingsHelp@gmail.com before Sunday, September 30. From Dr. Hamrahian's bio at http://my.clevelandc...x?doctorid=3676 Amir Hamrahian, M.D. (216) 444-6568 http://my.clevelandc...5&DoctorID=3676 Appointed: 2000 Request an Appointment Research & Publications † ( † Disclaimer: This search is powered by PubMed, a service of the U.S. National Library of Medicine. PubMed is a third-party website with no affiliation with Cleveland Clinic.) Biographical Sketch Amir H. Hamrahian, MD, is a Staff member in the Department of Endocrinology, Diabetes and Metabolism at Cleveland Clinic's main campus, having accepted that appointment in 2005. Prior to that appointment, he was also a clinical associate there for nearly five years. His clinical interests include pituitary and adrenal disorders. Dr. Hamrahian received his medical degree from Hacettepe University in Ankara, Turkey, and upon graduation was a general practitioner in the provinces of Hamadan and Tehran, Iran. He completed an internal medicine residency at the University of North Dakota, Fargo, and an endocrinology fellowship at Case Western Reserve University and University Hospitals, Cleveland. In 2003, he received the Teacher of the Year award from Cleveland Clinic's Department of Endocrinology, Diabetes and Metabolism. Dr. Hamrahian speaks three languages -- English, Turkish and Farsi -- and is board-certified in internal medicine as well as endocrinology, diabetes and metabolism. He is a member of the Endocrine Society, Pituitary Society and the American Association of Clinical Endocrinologists. Education & Fellowships Fellowship - University Hospitals of Cleveland Endocrinology Cleveland, OH USA 2000 Residency - University of North Dakota Hospital Internal Medicine Fargo, ND USA 1997 Medical School - Hacettepe University School of Medicine Ankara Turkey 1991 Certifications Internal Medicine Internal Medicine- Endocrinology, Diabetes & Metabolism Specialty Interests Cushing syndrome, acromegaly, pheochromocytoma, prolactinoma, primary aldosteronism, pituitary disorders, adrenal tumor, adrenocortical carcinoma, MEN syndromes, adrenal disorders Awards & Honors Best Doctors in America, 2007-2008 Memberships Pituitary Society Endocrine Society American Association of Clinical Endocrinologists American Medical Association Treatment & Services Radioactive Iodine Treatment Thyroid Aspiration Thyroid Ultrasound Specialty in Diseases and Conditions Acromegaly Addison’s Disease Adrenal disorders Adrenal insufficiency Adrenal Insufficiency and Addison’s Disease Adrenal Tumors Adrenocortical Carcinoma Adrenoleukodystrophy (ALD) Amenorrhea Androgen Deficiency (Low Testosterone) Androgen Excess Calcium Disorders Carcinoid Syndrome Conn's Syndrome Cushing's Syndrome Empty sella Erectile Dysfunction Familial Multiple Endocrine Neoplasia Fasting hypoglycemia Flushing Syndromes Galactorrhea Goiter Growth hormone deficiency Growth hormone excess Gynecomastia Hirsutism Hyperaldosteronism Hyperandrogenism Hyperprolactinemia Hypertension - High Blood Pressure Hyperthyroidism Hypocalcemia Hypoglycemia Hypogonadism Hypoparathyroidism Hypophysitis Hypopituitarism Hypothyroidism Mastocytosis Menopause, Male Menstrual Disorders Paget's Disease Panhypopituitarism Parathyroid Cancer Parathyroid Disease and Calcium Disorders Pheochromocytoma Pituitary Cysts Pituitary Disorders Pituitary stalk lesions Pituitary Tumors Premenstrual Syndrome (PMS) Primary Hyperaldosteronism Primary Hyperparathyroidism Prolactin Excess States Prolactinoma Thyroid and pregnancy Thyroid Cancer Thyroid Disease Thyroid Nodule
  45. 1 point
    Well, I'd say it shouldn't be too long now before there is acknowledgement and cure, but after watching Dr. Drew and the segment on Acromegaly the other night, and the way he completely and so conspicuously avoided ANY mention of ACTH producing tumors, I don't know that there will be in our lifetime. He mentioned prolactinomas and said they were the most common, blah blah blah, talked ALLLLL around it. It couldn't have been unintentional. This is coming from high places. I guess the drug companies have more power than even we know them to.
  46. 1 point
    I wish there was a more candid discussion about this. Far too many women are wondering about the risks of passing Cushing's along in some form to their children. Some have chosen to adopt, others to not have any more children period (because of the fatigue of the disease), and other still choose to pursue live births. I personally can't wait to have my tubes tied and move on without worry. My son is already trending towards symptoms and I wouldn't wish this on my worst enemy, let alone a child...
  47. 1 point
    Thanks to Robin (staticnrg) for making a wonderful co-host, as always Listen to tonight's interview with Dr Hamrahian at http://www.blogtalkradio.com/cushingshelp/2012/10/01/dr-amir-hamrahian-answers-our-questions or soon on iTunes podcasts at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438 Dr. Hamrahian has agreed to return at some point in the future to answer more questions for us
  48. 1 point
    O.k. well this question is a little past the deadline but I hear that not all patients can take Korlym. Which type of patient should not take it?
  49. 1 point
    I lost copious amounts of hair while on Korlym, is this a known side effect?
  50. 1 point
    Looking forward to it Mary. Thanks so much for arranging it.
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