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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. WASHINGTON--Endogenous Cushing's syndrome, a rare hormonal disorder, is associated with a threefold increase in death, primarily due to cardiovascular disease and infection, according to a study whose results will be presented at ENDO 2021, the Endocrine Society's annual meeting. The research, according to the study authors, is the largest systematic review and meta-analysis to date of studies of endogenous (meaning "inside your body") Cushing's syndrome. Whereas Cushing's syndrome most often results from external factors--taking cortisol-like medications such as prednisone--the endoge
    2 points
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. It sure sounds like you're on the right track!
    2 points
  15. 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
  16. 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
  17. 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
  18. 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
  19. Excess mortality among people with endogenous Cushing syndrome (CS) has declined in the past 20 years yet remains three times higher than in the general population, new research finds. Among more than 90,000 individuals with endogenous CS, the overall proportion of mortality ― defined as the ratio of the number of deaths from CS divided by the total number of CS patients ― was 0.05, and the standardized mortality rate was an "unacceptable" three times that of the general population, Padiporn Limumpornpetch, MD, reported on March 20 at ENDO 2021: The Endocrine Society Annual Meeting.
    1 point
  20. Adrenal insufficiency increases the risk for severe outcomes, including death, 23-fold for children who contract COVID-19, according to a data analysis presented at the ENDO annual meeting. “Adrenal insufficiency in pediatrics does increase risk of complications with COVID-19 infections,” Manish Gope Raisingani, MD, assistant professor in the department of pediatrics in the division of pediatric endocrinology at Arkansas Children's Hospital, University of Arkansas for Medical Sciences, told Healio. “The relative risk of complications is over 20 for sepsis, intubation and mortality, which
    1 point
  21. John P H Wilding 1 Affiliations expand PMID: 32061161 DOI: 10.1530/EJE-20-0099 Abstract Endocrine disorders such as Cushing's syndrome and hypothyroidism may cause weight gain and exacerbate metabolic dysfunction in obesity. Other forms of endocrine dysfunction, particularly gonadal dysfunction (predominantly testosterone deficiency in men and polycystic ovarian syndrome in women), and abnormalities of the hypothalamic-pituitary-adrenal axis, the growth hormone-IGF-1 system and vitamin D deficiency are common in obe
    1 point
  22. From board member @sharm - Please Join Us to Celebrate 20 Years-Pituitary Patient Support Group. Saturday April 10, 2021: 9:00am-11:00am (PST) (Scroll below for Zoom meeting links) We invite you to join the conversation with our experts: Pejman Cohan, neuro-endocrinologist & Daniel Kelly, neurosurgery. Email me or leave your questions in the chat below. We will answer as many questions as time allows. We can't wait to see you on Zoom! Thank you, Sharmyn McGraw, patient advocate, community outreach. pituitarybuddy@hotmail.com Meeting ID: 849
    1 point
  23. Register Now! 2nd annual WAPO eSummit March 19 & 20, 2021 World Alliance of Pituitary Organizations represents the voice of 37 patient advocacies around the globe. This event is also translated into Español, there’s something for everyone! The World Alliance of Pituitary Organizations (‘WAPO’) represents the voice of 37 patient advocacies around the globe. We seek to empower and improve the Quality of Life of Pituitary Patients, by sharing knowledge and inform you about treatment choices. By registering to the WAPO eSummit 2021, you will have a unique oppor
    1 point
  24. Yes, that is common.
    1 point
  25. Presented by Nelson M. Oyesiku, MD, PhD, FACS Professor of Neurosurgery and Medicine Vice-Chairman, Neurosurgery Residency Program Director Emory University School of Medicine Register Now! After registering you will receive a confirmation email containing information about joining the Webinar. Date: Sunday, May 10, 2020 Time: 11:00 AM Pacific Daylight Time to 12:15 PM Pacific Daylight Time/ 2:00 PM - 3:15 PM Eastern Daylight Time
    1 point
  26. I had a lot of unexplained bruising. Around New Year's Day, I started bleeding by my ankle. My doctor wasn't available so my husband used a magic marker to draw a circle around the area of the bleed, then made more circles as it spread out. The size of the area with the rings are what alerted my GP to send me to the hematologist for more testing. Previously, I had told him, my gynecologist, a (new during Cushing's) foot doctor, a neurologist that I was sure I had Cushing's - all said it was too rare. I couldn't have it.
    1 point
  27. Sponsor: Cedars-Sinai Medical Center Information provided by (Responsible Party): Shlomo Melmed, MD, Cedars-Sinai Medical Center Brief Summary: This phase 2 multicenter, open-label clinical trial will evaluate safety and efficacy of 4 weeks of oral seliciclib in patients with newly diagnosed, persistent, or recurrent Cushing disease. Funding Source - FDA Office of Orphan Products Development (OOPD) Condition or disease Intervention/treatment Phase Cushing Disease Drug:
    1 point
  28. Lacroix A, et al. Pituitary. 2019;doi:10.1007/s11102-019-01021-2. January 7, 2020 Andre Lacroix Most adults with persistent or recurrent Cushing’s disease treated with the somatostatin analogue pasireotide experienced a measurable decrease in MRI-detectable pituitary tumor volume at 12 months, according to findings from a post hoc analysis of a randomized controlled trial. “Pasireotide injected twice daily during up to 12 months to control cortisol excess in patients with residual or persistent Cushing's disease was found to reduce the size of pituitary tumors in a high
    1 point
  29. Corcept Therapeutics is recruiting participants for its Phase 3 clinical trial evaluating relacorilant as a potential treatment for Cushing’s syndrome-related side effects such as high blood pressure and impaired glucose tolerance. Also, findings from the study “A Randomized-Withdrawal, Placebo-Controlled, Phase 3 Study to Assess the Efficacy and Safety of Selective Glucocorticoid Receptor Antagonist, Relacorilant, in Patients with Cushing Syndrome (GRACE Study),” were presented at the 2019 Annual Meeting of the Endocrine Society (ENDO), in New Orleans, Louisiana. In endogenous Cushi
    1 point
  30. The use of an insulin pump to deliver continuous pulsatile cortisol may be a viable treatment option in patients with severe adrenal insufficiency who are unresponsive to oral corticosteroids, according to study results presented at the 28th Annual Congress of the American Association of Clinical Endocrinologists, held April 24 to 28, 2019, in Los Angeles, California. According to the investigators, increasing oral steroid doses may be required to prevent adrenal crisis in patients with adrenal insufficiency. However, in light of the associated side effects of long-term use of steroids, a
    1 point
  31. I plan to do the Cushing's Awareness Challenge again. Last year's info is here: https://cushieblogger.com/2018/03/11/time-to-sign-up-for-the-cushings-awareness-challenge-2018/ The original page is getting very slow loading, so I've moved my own posts to this newer blog. As always, anyone who wants to join me can share their blog URL with me and I'll add it to the links on the right side, so whenever a new post comes up, it will show up automatically. If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cush
    1 point
  32. Presented by: James K. Liu, MD Professor of Neurosurgery Director of Skull Base and Pituitary Surgery Rutgers University, New Jersey Medical School RWJ Barnabas Health After registering you will receive a confirmation email with information about joining the webinar. Register here Date: January 9, 2019 Time: 3:00PM- 4:00 PM Pacific Standard Time, 6:00 PM - 7:00 PM Eastern Standard Time Learning Objectives: To understand the medical therapies for prolactinomas To understand the roles of surgery for prolactinomas To understand the rol
    1 point
  33. Childs Nerv Syst. 2018 Nov 28. doi: 10.1007/s00381-018-4013-5. [Epub ahead of print] Gazioglu N1, Canaz H2, Camlar M3, Tanrıöver N4, Kocer N5, Islak C5, Evliyaoglu O6, Ercan O6. Author information Abstract AIM: Pituitary adenomas are rare in childhood in contrast with adults. Adrenocorticotropic hormone (ACTH)-secreting adenomas account for Cushing's disease (CD) which is the most common form of ACTH-dependent Cushing's syndrome (CS). Treatment strategies are generally based on data of adult CD patients, although some difficulties and differenc
    1 point
  34. Pituitary Tumors Affect Patients’ Ability to Work, Reduce Quality of Life Pituitary tumor conditions, such as Cushing’s disease, have a substantial effect on patients’ work capabilities and health-related quality of life, researchers from The Netherlands reported. The study, “Work disability and its determinants in patients with pituitary tumor-related disease,” was published in the journal Pituitary. Pituitary tumors, like those that cause Cushing’s disease, have significant effects on a patient’s physical, mental, and social health, all of which influence their work status and
    1 point
  35. Kim, why won't your son test for Cushing's? I hope he will get some help, too. Congratulations on your own remission
    1 point
  36. Jess, I'm so sorry you're going through this Off the top of my head - and I'm not a doctor - this doesn't sound like Cushing's. I'm wondering if some of his issues could be side effects for the anti-anxiety meds he's on Teen years can be an issue but this sounds like more than normal. Can you go back to the doctor who prescribed the meds and see if there's something that won't make things worse? Unfortunately, your photo links don't include photos but email text. I can remove those links, if you wish. If you email those photos to cushingshelp@gmail.com I'd be happy to post
    1 point
  37. Bilateral adrenalectomy, in which the adrenal glands are removed, has a bigger negative impact on the quality of life of patients with Cushing’s disease than other treatment options, a recent study suggests. This may be due to the longer exposure to high levels of cortisol in these patients, which is known to greatly affect their quality of life, the authors hypothesize. The study, “Bilateral adrenalectomy in Cushing’s disease: Altered long-term quality of life compared to other treatment options,” was published in the journal Annales d’Endocrinologie. Cushing’s disease is cause
    1 point
  38. It's not nearly as rare as some doctors think. Honestly, most of us have bad experiences with at least one endo so that's a possibility but fingers crossed you get one that's willing to listen and will let you do some testing; push for testing. Do your research, read as much as you can before the appointment - bring pictures of your physical changes if you have them and write down your symptoms. I never saw Dr. F for diagnosis but his website and the boards were the best thing ever for me. His site has lots of good articles so I would read everything there http://www.goodhormonehealth.com/cush
    1 point
  39. 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
    1 point
  40. A plasma adrenocorticotropic hormone suppression test performed shortly after surgical adenomectomy may accurately predict both short- and long-term remission of Cushing’s disease, according to research published in Pituitary. “Cushing’s disease is caused by hypersecretion of adrenocorticotropic hormone (ACTH) by a pituitary adenoma, resulting in hypercortisolism,” Erik Uvelius, MD, of the department of clinical sciences, Skåne University Hospital, Lund University, Sweden, and colleagues wrote in the study background. “Surgical adenomectomy is the first line of treatment. Postoperative re
    1 point
  41. Steve, I might be in the same boat. My vision seems to come and go but I figured it was just me getting older. I'm post-op nearly 30 years.
    1 point
  42. Since you asked this as a guest question, I posted it on one of the Cushing's blogs, too. Someone answered:
    1 point
  43. Only 8 days until the Cushing’s Awareness Challenge 2018 begins. At night, when I’m supposed to be sleeping, ideas for posts keep swarming through my head. Sometimes, they form into fully-written posts. Then, when I wake up, the posts are gone. I plan to follow the suggestions to some extent and have a few ideas of my own. Over the years, I’ve posted lots on several blogs but I don’t know if I can get 30 days of Cushing’s stuff together...again! This is the eighth year of the Cushing's Awareness Challenge. The list of bloggers is on the right side and is constantly updated as ne
    1 point
  44. I plan to do the Cushing's Awareness Challenge again. Last year's info is here: https://cushieblogger.com/2017/03/08/time-to-sign-up-for-the-cushings-awareness-challenge-2017/ The original page is getting very slow loading, so I've moved my own posts to this newer blog. As always, anyone who wants to join me can share their blog URL with me and I'll add it to the links on the right side, so whenever a new post comes up, it will show up automatically. If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cush
    1 point
  45. Children with Cushing’s syndrome are at risk of developing new autoimmune and related disorders after being cured of the disease, a new study shows. The study, “Incidence of Autoimmune and Related Disorders After Resolution of Endogenous Cushing Syndrome in Children,” was published in Hormone and Metabolic Research. Patients with Cushing’s syndrome have excess levels of the hormone cortisol, a corticosteroid that inhibits the effects of the immune system. As a result, these patients are protected from autoimmune and related diseases. But it is not known if the risk rises after their
    1 point
  46. 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). Rese
    1 point
  47. 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 Hel
    1 point
  48. Hi Kathy- Salivary tests can be touchy. Did he take them at 11:00 pm? Did he follow the directions carefully? The reason why I'm asking is that my new endo had me do 3 salivary tests. Every one I had taken prior to that showed high cortisol. But for some reason, I really botched these. The first one I did right. The second one - I don't know what I was thinking - I brushed my teeth right before the test even though the directions said not to (I am very forgetful). The third test I opened the tube, and the cotton swab popped right out and went directly down the bathroom sink. So I did
    1 point
  49. How sad. He never got to know life after Cushings, either.
    1 point
  50. Thanks for posting this Robin. The poor unfortunate man and his family - it is dreadful. And so very descriptive - makes you wish you could have been there for him to help.
    1 point
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