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  1. How stressed are you? Your earwax could hold the answer. A new method of collecting and analyzing earwax for levels of the stress hormone cortisol may be a simple and cheap way to track the mental health of people with depression and anxiety. Cortisol is a crucial hormone that spikes when a person is stressed and declines when they're relaxed. In the short-term, the hormone is responsible for the "fight or flight" response, so it's important for survival. But cortisol is often consistently elevated in people with depression and anxiety, and persistent high levels of cortisol can have
    3 points
  2. Context Late-night salivary cortisol (LNSC) measured by enzyme immunoassay (EIA-F) is a first-line screening test for Cushing’s syndrome (CS) with a reported sensitivity and specificity of >90%. However, liquid chromatography-tandem mass spectrometry, validated to measure salivary cortisol (LCMS-F) and cortisone (LCMS-E), has been proposed to be superior diagnostically. Objective, Setting, and Main Outcome Measures Prospectively evaluate the diagnostic performance of EIA-F, LCMS-F, and LCMS-E in 1453 consecutive late-night saliva samples from 705 patients
    2 points
  3. Presented by Georgios A. Zenonos, MD Assistant Professor of Neurological Surgery Associate Director, Center for Skull Base Surgery University of Pittsburgh Medical Center 200 Lothrop Street, Pittsburgh PA, 15217 Presbyterian Hospital, Suite B400 Register Now! After registering you will receive a confirmation email containing information about joining the Webinar. Date: Wednesday July 1, 2020 Time: 3:00 PM Pacific Daylight Time, 6:00 PM Eastern Daylight Time
    2 points
  4. Unfortunately a 4:30 pm cortisol test can't be used to diagnose or exclude Cushing's. The only useful blood measurement for cortisol would be a midnight one. You really need to do a 24 hour urinary cortisol test.
    2 points
  5. Welcome, Ellie. I can't image how hard it would be to get a diagnosis (or not!) during these COVID times. Unfortunately, results from blood tests aren't going to be the answer - just a part of an answer. You need to get UFCs (urine free cortisol) Do you need to get a referral to an endo? They are the best to diagnose Cushing's - if you get one who is familar with testing. That's the important part. Not all endos "believe in Cushing's" which is incredible to me. Unfortunately, there's no real way of speeding a Cushing's diagnosis along. And, I don't think you'd want to
    2 points
  6. Dr. Friedman will discuss topics including: Who should get an adrenalectomy? How do you optimally replace adrenal hormones? What laboratory tests are needed to monitor replacement? When and how do you stress dose? What about subcut cortisol versus cortisol pumps? Patient Melissa will lead a Q and A Sunday • May 17 • 6 PM PST Click here on start your meeting or https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=mb896b9ec88bc4e1163cf4194c55b248f OR Join by phone: (855) 797-9485 Meeting Number (Access Code): 80
    2 points
  7. Hello Mary!! Thank you for replying!! It was a surprise for me having a relapse... I never knew or even heard it could happen... but last year I began to feel sooooo bad... and as I’ve had so many difficulties with the doctors I consulted the first time (I visited 40 doctors in ten years ... and only 3 of them understood my symptoms)... I decided to go to the laboratory by myself and asked them to perform the tests I thought I might have needed. And so I saw the cortisol beginning to increase ... but this January I presented a tachyarrhytmia sincope and although cardiologists i
    2 points
  8. Hello Mary & dear Cushies!! I’ve just discovered this article two months ago and I was very pleased to speak directly to Dr. Gerardo Burton. He and his team developed a drug (21OH-6OP) which is a SPECIFIC antagonist for cortisol receptors, unlikely mifepristone which inhibits cortisol AND progesterone with so many undesired adverse effects. Unfortunately the pharmaceutical company didn’t choose this drug to start the clinical trials and so it is resting in Dr. Burton’s lab.... since 2007. The great humanity in Dr. Burton drop tears into my eyes when he told me that he w
    2 points
  9. Thank you so much, Mayela - I'll definitely check this out. We need all the help we can get and I'm glad that Dr. Burton is trying to help Cushing's patients. 13 years is a long time to withhold a potentially helpful drug. I'm so sorry you're having a relapse Are you planning another pituitary surgery, BLA or something else?
    2 points
  10. Cushing syndrome, a rare endocrine disorder caused by abnormally excessive amounts of the hormone cortisol, has a new pharmaceutical treatment to treat cortisol overproduction. Osilodrostat (Isturisa) is the first FDA approved drug who either can’t undergo pituitary gland surgery or have undergone the surgery but still have the disease. The oral tablet functions by blocking the enzyme responsible for cortisol synthesis, 11-beta-hydroxylase. “Until now, patients in need of medications…have had few approved options, either with limited efficacy or with too many adverse effects. With this d
    2 points
  11. The U.S. Food and Drug Administration today approved Isturisa (osilodrostat) oral tablets for adults with Cushing's disease who either cannot undergo pituitary gland surgery or have undergone the surgery but still have the disease. Cushing's disease is a rare disease in which the adrenal glands make too much of the cortisol hormone. Isturisa is the first FDA-approved drug to directly address this cortisol overproduction by blocking the enzyme known as 11-beta-hydroxylase and preventing cortisol synthesis. "The FDA supports the development of safe and effective treatments for rare diseases
    2 points
  12. MENLO PARK, Calif., Aug. 28, 2019 (GLOBE NEWSWIRE) -- Corcept Therapeutics Incorporated (NASDAQ: CORT) announced today that the United States Patent and Trademark Office has issued a Notice of Allowance for a patent covering the administration of Korlym® with food. The patent will expire in November 2032. “This patent covers an important finding of our research – that for optimal effect, Korlym must be taken with food,” said Joseph K. Belanoff, MD, Corcept’s Chief Executive Officer. “Korlym’s label instructs doctors that ‘Korlym must always be taken with a meal.’” Upon issuance, Cor
    2 points
  13. It sure sounds like you're on the right track!
    2 points
  14. 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.
    2 points
  15. 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 b
    2 points
  16. 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!
    2 points
  17. 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?
    2 points
  18. A retrospective cohort study was performed to compare mortality risk and causes of death in adrenal insufficiency with an individually-matched reference population. Researchers examined 6,821 patients with adrenal insufficiency (primary, 2052; secondary, 3948) and 6,7564 individually-matched controls (primary, 20366; secondary, 39134). It was shown that in adrenal insufficiency, mortality was elevated, particularly primary, even with individual matching, and was found early in the disease course. The data demonstrated that cardiovascular disease was the major cause but mortalit
    1 point
  19. Update November 22, 2020 I have not updated my patients on the COVID-19 pandemic since March. Since the last update and as of today’s date, 12.2 million Americans have been infected with COVID-19 and 256,000 Americans have died. Several of Dr. Friedman’s patients have been infected with COVID-19. Many businesses have closed and there have been major economic loses. The response to the pandemic has unfortunately been politicized and I say unfortunately because the virus doesn’t distinguish based on victim’s political party. Please see Dr. Friedman’s Letter in the Los Angeles Jewish Journa
    1 point
  20. We have an opportunity for you to take part in a Cushing's Disease study(IPS_4636) for Patients. Our project number for this study is IPS_4636. Project Details: Web- Camera Interview There is a homework component Interview is 75-minutes long 125 Reward + 100 homework Things to Note: Patient study only, Caregivers please pass the link along Unique links, please do not pass along for 2nd use One Participant per household Want to share this opportunity? Let us know and we can provide a new link Preliminary questions are Mobile Friendl
    1 point
  21. Michael P Catalino 1 2, David M Meredith 3 4, Umberto De Girolami 3 4, Sherwin Tavakol 1 5, Le Min 6, Edward R Laws 1 4 Affiliations expand PMID: 32886921 DOI: 10.3171/2020.5.JNS201514 Abstract Objective: This study was done to compare corticotroph hyperplasia and histopathologically proven adenomas in patients with Cushing disease by analyzing diagnostic features, surgical management, and clinical outcomes. Methods: Patients with suspected pituitary Cushing disease were included in a retrospective cohort study and were excluded if results of patho
    1 point
  22. Adults with adrenal insufficiency who are adequately treated and trained display the same incidence of COVID-19-suggestive symptoms and disease severity as controls, according to a presenter. “Adrenal insufficiency is supposed to be associated with an increased risk for infections and complications,” Giulia Carosi, a doctoral student in the department of experimental medicine at Sapienza University of Rome, said during a presentation at the virtual European Congress of Endocrinology Annual Meeting. “Our aim was to evaluate the incidence of COVID symptoms and related complications in this
    1 point
  23. The first ever prospective study to test the safety and efficacy of metyrapone in patients with Cushing’s Syndrome in a real-life setting has shown successful results. HRA Pharma Rare Diseases SAS, of Paris, has presented data from PROMPT, the first ever prospective study designed to confirm metyrapone efficacy and good tolerance in patients with endogenous Cushing’s Syndrome, with results confirming that metyrapone controlled 80% of the patients at week 12 with either normalisation or at least 50% decrease of urinary free cortisol. These initial results are being published to coincide wit
    1 point
  24. Abstract Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the viral strain that has caused the coronavirus disease 2019 (COVID-19) pandemic, has presented healthcare systems around the world with an unprecedented challenge. In locations with significant rates of viral transmission, social distancing measures and enforced ‘lockdowns’ are the new ‘norm’ as governments try to prevent healthcare services from being overwhelmed. However, with these measures have come important challenges for the delivery of existing services for other diseases and conditions. The clinica
    1 point
  25. Presented by Georgios A. Zenonos, MD Assistant Professor of Neurological Surgery Associate Director, Center for Skull Base Surgery University of Pittsburgh Medical Center 200 Lothrop Street, Pittsburgh PA, 15217 Presbyterian Hospital, Suite B400 No Registration is Required. It will be webcast by Microsoft Teams. Click here to attend. Date: Friday, July 17, 2020 Time: 10:00 AM Pacific Daylight Time, 1:00 PM Eastern Daylight Time
    1 point
  26. Thank you so much for sharing your dad's story, Andy. What a sad, difficult one it is. I know when Dr. Cushing was originally testing people for Cushing's disease, he found some of his early patients in the circus (bearded woman, etc) and other patients have been in mental wards before their diagnosis. This disease, especially untreated, can really cause havoc in all aspects of a person's life. I hope you and your family have been able to find some peace since the original article.
    1 point
  27. First published:03 May 2020 Read the entire article at https://doi.org/10.1002/alr.22540 Potential conflict of interest: None disclosed. Presented at the 65th Annual Meeting of the American Rhinologic Society, on September 14, 2019, in New Orleans, LA. Abstract Background Endoscopic transsphenoidal surgery (ETS) for the resection of pituitary adenoma has become more common throughout the past decade. Although most patients have a short postoperative hospitalization, others require a more prol
    1 point
  28. Approximately 20% of a cohort of adults with Cushing’s syndrome experienced at least one thrombotic event after undergoing pituitary or adrenal surgery, with the highest risk observed for those undergoing bilateral adrenalectomy, according to findings from a retrospective analysis published in the Journal of the Endocrine Society. “We have previously showed in a recent meta-analysis that Cushing’s syndrome is associated with significantly increased venous thromboembolic events odds vs. the general population, though the risk is lower than in patients undergoing major orthopedic surgery,”
    1 point
  29. 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 microscopi
    1 point
  30. For patients with persistent or recurring Cushing’s disease, monthly pasireotide therapy was safe and effective, leading to normal urinary free cortisol levels in 47% of patients after 2 years, according to findings published in Clinical Endocrinology. Maria Fleseriu “The management of Cushing’s syndrome, and particularly Cushing’s disease, remains challenging,” Maria Fleseriu, MD, FACE, professor of neurological surgery and professor of medicine in the division of endocrinology, diabetes and clinical nutrition in the School of Medicine at Oregon Health & Science University a
    1 point
  31. 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, a
    1 point
  32. this is terrifying to read. is this accurate and current?
    1 point
  33. 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 circulat
    1 point
  34. Presented by Mario Zuccarello, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery and Jonathan A. Forbes, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery After registering you will receive a confirmation email containing information about joining the webinar. Contact us at webinar@pituitary.org if you have any questions. Date: December 3, 2018 Time: 3:00PM - 4:00PM Pacific Standard Time 6:00PM - 7:00PM Eastern Standard Time Learning Objectives: To unders
    1 point
  35. Dr. Theodore Friedman’s next webinar will be on the Macrilen Stimulation Test for Growth Hormone Deficiency: Sunday, December 9, 2018, 6 PM PST Adult growth hormone deficiency occurs in patients with hypopituitarism and can occur in those with a pituitary tumor. A growth hormone stimulation test is needed to make the diagnosis of adult growth hormone deficiency. Dr. Theodore Friedman’s next webinar will be on the Macrilen Stimulation Test for Growth Hormone Deficiency: Sunday, December 9, 2018, 6-7 PM PST. He will discuss the new Macrilen stimulation test and compare it to th
    1 point
  36. If you’ve got your finger on the pulse of health trends, it’s likely you’ve been hearing the current buzzwords “cortisol creates belly fat” and “cortisol causes muscle wasting and fat storage.” These are the type of catch phrases that gain momentum every few years. And although some of the fads and trends showing up seasonally in fitness are myths, this caution about chronically elevated cortisol is true. Cortisol is also deeply connected with the dangers of chronic inflammation, which I described in another article, “Inflammation Creates Diseases.” Like many hormones, cortisol has an ef
    1 point
  37. These are pictures of me taken 3 years apart. 45lb weight gain.
    1 point
  38. I was also told that Cushing's was too "rare" and I couldn't possibly have it - way back in 1983. It took me until 1987 but I finally got diagnosed and had pituitary surgery. Best of luck to you. If this endo doesn't work out get another one! https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/
    1 point
  39. Yes!! I had normal labs the whole time until day of surgery! They only did surgery because my IPSS showed high ACTH. So you may want to have that test done.
    1 point
  40. Absolutely! I had to do weeks and weeks of UFCs before I was finally diagnosed. Best of luck to you, Kenz. I hope you join the boards so you can get access to all the info and here.
    1 point
  41. 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.
    1 point
  42. 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 a
    1 point
  43. Random cortisol is kind of a useless test to test for Cushing's and yes you can have a normal random cortisol result and still have Cushing's.
    1 point
  44. The US Food and Drug Administration (FDA) has approved an orally available ghrelin agonist, macimorelin (Macrilen, Aeterna Zentaris), to be used in the diagnosis of patients with adult growth-hormone deficiency (AGHD). Macimorelin stimulates the secretion of growth hormone from the pituitary gland into the circulatory system. Stimulated growth-hormone levels are measured in four blood samples over 90 minutes after oral administration of the agent for the assessment of growth-hormone deficiency. Prior to the approval of macimorelin, the historical gold standard for evaluation of adult
    1 point
  45. People with high cortisol levels have lower muscle mass and higher visceral fat deposits, putting them at a greater risk for cardiovascular disease, new research shows. High levels of cortisol can result from a variety of reasons, including Cushing’s disease and adrenal tumors. Most adrenal tumors are found to be non-functioning, meaning they do not produce excess hormones. However, up to 47 percent of patients have mild autonomous cortisol excess (MACE). The study, “Impact of hypercortisolism on skeletal muscle mass and adipose tissue mass in patients with adrenal adenomas,” was pub
    1 point
  46. Hi Kathy and welcome! You are in a good place for support, information and understanding. Please don't let your son stop looking for help just because his current doctors don't understand this disease. His feeling is right---cushing's kills. I've been on this board for 6 years now and have seen many wonderful people succomb to this disease, some because they didn't see the right doctors. There is a helpful doctors tab at the top of the page...maybe there is a good one on the island. Otherwise, we will be happy to suggest a doctor who understands cushings. His insurance may or may not
    1 point
  47. 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.
    1 point
  48. I have several symptoms of Cushings: weight gain around middle, puffy face, extreme fatigue/no energy, feel weak going upstairs, buffalo hump, insomnia, numbness in feet, headache... Do not have: Striae, skin that bruises easily, slow healing cuts, acne, more body hair, absent menstrual periods Other Symptoms: Lymph glands in neck burning/throbbing from time to time, still reoccurring knee pain (Lymes?) Recently diagnosed/treated for Lymes disease Creatinine 1833 (Range 700-1800) Positive Thyroid Antibody test (not extremely high though 76 (Range 0-34) TSH 2.5 in April now 1.65
    1 point
  49. Thanks so much, Betseebee. We still need questions from folks in advance.
    1 point
  50. Thanks for sharing this story... although it is so sad!! Especially when we know something could have helped this man so much sooner. Thanks for sharing!! I guess even though these stories are awful to read, they spread awareness... which is exactly what we need... Paige
    1 point
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