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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. Mayela, I'm so sorry you went through COVID but glad you're on the other side of it now. And a relapse doesn't sound like any fun Thanks for the update on The GRACE trial, though. Please keep us updated on your recovery from COVID and your relapse.
    2 points
  3. Osilodrostat therapy was found to be effective in improving blood pressure parameters, health-related quality of life, depression, and other signs and symptoms in patients with Cushing disease, regardless of the degree of cortisol control, according to study results presented at the 30th Annual Scientific and Clinical Congress of the American Association of Clinical Endocrinologists (ENVISION 2021). Investigators of the LINC 3 study (ClinicalTrials.gov Identifier: NCT02180217), a phase 3, multicenter study with a double-blind, randomized withdrawal period, sought to assess the effects of
    2 points
  4. HRA Pharma Rare Diseases, an affiliate of privately-held French healthcare company HRA Pharma, has revealed data from the six-month extension of PROMPT, the first ever prospective study designed to evaluate metyrapone long-term efficacy and tolerability in endogenous Cushing’s syndrome. After confirming good efficacy and safety of metyrapone in the first phase of the study that ran for 12 weeks, the results of the six-month extension showed that metyrapone successfully maintains low urinary free cortisol (UFC) levels with good tolerability. The data will be presented at the European
    2 points
  5. 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
  6. 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
  7. 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
  8. 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
  9. Hello Mary & dear Cushing’s, I hope you are all doing well during this pandemic... I must tell you I got sick with COVID-19 since January 2021 and I’m still recovering with pneumonia... and I won’t lie if I say it has been the WORST disease I’ve ever had... even worse than my first PANHYPERPITUITARISM with Cushing’s Disease and now with my Cushing’s syndrome relapse... but thanks God I’m alive and recovering. I’m writing here because I found out that the GRACE trial of Relacorilant is delayed due to COVID-19 pandemic and that they are still enrolling participants... so I will le
    1 point
  10. Thank you very much Mary Hugs, MAYELA
    1 point
  11. Eleni Papakokkinou, Marta Piasecka, Hanne Krage Carlsen, Dimitrios Chantzichristos, Daniel S. Olsson, Per Dahlqvist, Maria Petersson, Katarina Berinder, Sophie Bensing, Charlotte Höybye, Britt Edén Engström, Pia Burman, Cecilia Follin, David Petranek, Eva Marie Erfurth, Jeanette Wahlberg, Bertil Ekman, Anna-Karin Åkerman, Erik Schwarcz, Gudmundur Johannsson, Henrik Falhammar & Oskar Ragnarsson Abstract Purpose
    1 point
  12. Wow, Letisia - your numbers are very high. I'd definitely ask the endo about your numbers and the possibility of Cushing's. If s/he blows you off please try to find another one. You said you were taking progesterone. That can cause your cortisol numbers to go up but you need to talk to your doctor so s/he is aware of your concerns. What are your symptoms? Your doctor needs to hear about those, too. If you have "before" pictures, those can be really useful, especially if you've gained a lot of weight, gotten a buffalo hump, grown facial hair, etc. Best of luck to you and ple
    1 point
  13. This article was originally published here Endocrinol Diabetes Metab Case Rep. 2021 May 1;2021:EDM210038. doi: 10.1530/EDM-21-0038. Online ahead of print. ABSTRACT SUMMARY: In this case report, we describe the management of a patient who was admitted with an ectopic ACTH syndrome during the COVID pandemic with new-onset type 2 diabetes, neutrophilia and unexplained hypokalaemia. These three findings when combined should alert physicians to the potential presence of Cushing’s syndrome (CS). On admission, a quick diagnosis of CS was made based on clinical and biochemical
    1 point
  14. Abstract Background Subclinical Cushing’s disease (SCD) is defined by corticotroph adenoma-induced mild hypercortisolism without typical physical features of Cushing’s disease. Infection is an important complication associated with mortality in Cushing’s disease, while no reports on infection in SCD are available. To make clinicians aware of the risk of infection in SCD, we report a case of SCD with disseminated herpes zoster (DHZ) with the mortal outcome. Case presentation An 83-year-old Japanese woman was diagnosed with SCD, treated with
    1 point
  15. The FDA accepted for review a new drug application for the steroidogenesis inhibitor levoketoconazole for the treatment of endogenous Cushing’s syndrome, according to an industry press release. “We are pleased with the FDA’s acceptance for filing of the Recorlev new drug application,” John H. Johnson, CEO of Strongbridge Biopharma, said in the release. “We believe this decision reflects the comprehensive clinical evidence that went into the NDA submission, including the positive and statistically significant efficacy and safety results from the multinational phase 3 SONICS and LOGICS stud
    1 point
  16. This month marks a little over one year since the first surge of COVID-19 across the United States. April is also Adrenal Insufficiency Awareness month, a good time to review the data on how COVID-19 infection can impact the adrenal glands. The adrenal glands make hormones to help regulate blood pressure and the ability to respond to stress. The hormones include steroids such as glucocorticoid (cortisol), mineralocorticoid (aldosterone), and forms of adrenaline known as catecholamines (norepinephrine, epinephrine, and dopamine). The activity of the adrenal gland is controlled throug
    1 point
  17. Donkey, I am so sorry to read all that you've been through. Getting a Cushing's diagnosis is the worst, especially when doctors don't believe us. You didn't know what kind of doctor you have that doubts you have Cushing's but it sounds like you need another. Your best choice would be an endocrinologist who has had other Cushing's patients. Even though you aren't obese with striae...not every person has every symptom. The only way to diagnose Cushing's is with testing, not by a list of symptoms. Best of luck to you. I hope you keep us posted on your progress!
    1 point
  18. 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
  19. Updates on Treating Hypothyroidism Dr. Theodore Friedman will be giving a webinar on Updates on Treating Hypothyroidism. Topics to be discussed include: New articles showing patients prefer desiccated thyroid New thyroid hormone preparations Update on desiccated thyroid recalls New article on why TSH is less important than thyroid hormone measurements What is the difference between desiccated thyroid and synthetic thyroid hormones? Is rT3 important? Sunday • April 25• 6 PM PDT Via Zoom Click here to join the meeting or https://us02web.zoo
    1 point
  20. A large study of mortality in Cushing’s syndrome calculated a threefold higher mortality rate for these patients, with cerebrovascular and atherosclerotic vascular diseases and infection accounting for 50% of deaths, researchers reported. “[We have seen] improvement in outcome since 2000, but mortality is still unacceptably high,” Padiporn Limumpornpetch, MD, an endocrinologist at Prince of Songkla University in Thailand and PhD student at the University of Leeds, U.K., told Healio during the ENDO annual meeting. “The mortality outcome has shown an unacceptable standardized mortality rate
    1 point
  21. Patients with adrenal insufficiency may have higher rates of cardiovascular events due to the presence of cardiovascular comorbidities, shows a study published in The Journal of Clinical Endocrinology and Metabolism. Led by Kanchana Ngaosuwan, MD, PhD, of Imperial College London, UK, the authors of this population-based matched cohort study also found that cerebrovascular events were independently increased in patients with secondary adrenal insufficiency, particularly in those treated with irradiation therapy. Cardiovascular mortality, specifically from ischemic heart disease, was higher
    1 point
  22. Rosario Pivonello,a,b Rosario Ferrigno,a Andrea M Isidori,c Beverly M K Biller,d Ashley B Grossman,e,f and Annamaria Colaoa,b Over the past few months, COVID-19, the pandemic disease caused by severe acute respiratory syndrome coronavirus 2, has been associated with a high rate of infection and lethality, especially in patients with comorbidities such as obesity, hypertension, diabetes, and immunodeficiency syndromes.1 These cardiometabolic and immune impairments are common comorbidities of Cushing's syndrome, a condition characterised by excessive exposure to endogenous glucocort
    1 point
  23. https://doi.org/10.1002/jbmr.4033 ABSTRACT Endogenous Cushing's syndrome (CS) is a rare cause of secondary osteoporosis. The long‐term consequences for bone metabolism after successful surgical treatment remain largely unknown. We assessed bone mineral density and fracture rates in 89 patients with confirmed Cushing's syndrome at the time of diagnosis and 2 years after successful tumor resection. We determined five bone turnover markers at the time of diagnosis, 1 and 2 years postoperatively. The bone turnover markers osteocalcin, intact procollagen‐IN‐propeptide
    1 point
  24. It's because desmopressin stimulates ACTH release in corticotrophs (normal cells) and in corticotrophinomas, i.e., tumor cells in the case of Cushing's disease. This effect has been shown to be higher in CD than in non-CD patients. However, I think the ability of the DDAVP test to discriminate between CD and non-CD is questionable, although I'm not too familiar with that area of the literature. What does your MRI say?
    1 point
  25. The cancer medicine bexarotene may hold promise for treating Cushing’s disease, a study suggests. The study, “Targeting the TR4 nuclear receptor with antagonist bexarotene can suppress the proopiomelanocortin signalling in AtT‐20 cells,” was published in the Journal of Cellular and Molecular Medicine. Cushing’s disease is caused by a tumor on the pituitary gland, leading this gland to produce too much adrenocorticotropic hormone (ACTH). Excess ACTH causes the adrenal glands to release too much of the stress hormone cortisol; abnormally high cortisol levels are primarily responsible f
    1 point
  26. Abstract Cushing's syndrome is a rare entity in children. Adrenal tumour is the common cause of this syndrome in young children, whereas, iatrogenic causes are more common among older children. We report a 4 year old male child diagnosed with Cushing syndrome due to a right adrenal adenoma; the child presented with obesity and increase distribution of body hair. After thorough investigation and control of hypertension and dyselectrolytemia, right adrenalectomy was performed. The patient had good clinical recovery with weight loss and biochemical resolution of Cushing's syndrome.
    1 point
  27. From message board member @sharm - Sharmyn McGraw: Hi All, I hope you can join us on Zoom this Saturday, Nov. 14, 2020 starting at 9:00 a.m. (PST). For those that can't make it, I will record the meeting and post it later on our Facebook page. I look forward to seeing you! Contact @sharm if you have questions or email her here: pituitarybuddy@hotmail.com
    1 point
  28. 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
  29. Generally overweight people have weight everywhere and don't get a buffalo hump. Please don't give up! I know it's hard to get a diagnosis but definitely worthwhile.
    1 point
  30. Presented by Dr. Magge, Assistant Professor of Neurology at Weill Cornell Medical College and an Assistant Attending Neurologist at New York-Presbyterian Hospital. Dr. Ranakrishna, Chief of Neurological Surgery at NewYork-Presbyterian Brooklyn Methodist Hospital, Associate Professor of Neurological Surgery at Avina and Willis Murphy at Weill Cornell Medicine Click here to attend. Date: Tuesday, October 13, 2020 Time: 10:00 AM Eastern Daylight Time Learning objectives: - the basic characteristics of the different types of pituitary adenomas -
    1 point
  31. 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
  32. Presented by Ahmad Sedaghat, MD, PhD - Associate Professor and Director of the Division of Rhinology, Allergy and Anterior Skull Base Surgery in the Department of Otolaryngology - Head and Neck Surgery at the University of Cincinnati College of Medicine and UC Health. Norberto Andaluz, MD, MBA, FACS - Professor of Neurosurgery and Otolaryngology/Head and Neck Surgery - Director, Division of Skull Base Surgery University of Cincinnati College of Medicine and University of Cincinnati Gardner Neuroscience Institute - UC Health Click here to attend
    1 point
  33. 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
  34. Carma, I removed the links from your post. I suggest you try spamming elsewhere.
    1 point
  35. 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
  36. Hi Amanda, Based on what you posted, this is a slam dunk. If they don't diagnose you quickly you should go elsewhere. The lit recommends removing anything over 4 cm. You actually have convincing biochemical evidence with a rather high UFC and concurrent low ACTH (<10 pg/mL). I'm assuming you're using Quest for the UFC since he said it's not 2x high. Most people don't get to 2x on LC/MS-MS with mild/adrenal Cushing's. Let us know the dex results. The cutoff is 1.8 ug/dL.
    1 point
  37. 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
  38. Sorry, I'm the original poster before I joined :). Once I made an account I changed name.
    1 point
  39. I've managed to move up some appointments. As stated my Serum Cortisol test about 4:30pm didn't show anything abnormal. My ultrasound confirmed its not a Lipoma but didn't confirm it was anything at all to my knowledge. What test should I request at my 8am appointment this Fri? PM Saliva, 24 Urine, dexamethasone? I guess I'm already expecting this PA to be skeptical based on others experiences. Thanks!
    1 point
  40. Yes, that is common.
    1 point
  41. Hi everybody! I am Andy Goacher (John Goacher's eldest son) The article itself is particularly badly written if I'm honest, so I would like to share my own account.. Dad was a kind, gentle man, incredibly gifted, logical, technical. A senior reliability engineer working rocket and missile systems... "Basically our father is a rocket scientist" me and my brother would joke.. He had been gaining weight and suffering health problems for some time before he got really ill. He ballooned a bit in his final years, but facially and in the abdomen as well as a fatty hump between the
    1 point
  42. 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
    1 point
  43. Kathy, I would put your story on face book and tell all your friends to pass it along to their friends, and their friends, etc. Be sure to mention Kaiser. I'm sure someone will pick up on your dilemma. I went through a similar battle getting my condition diagnosed. Thank God my Endocrinologist was one of the best and insisted on an IPSS test after my MRI was negative. This led to pituitary surgery by a Neurosurgeon from the Cleveland Clinic. Best in the nation and true lifesavers in my book. You cannot give up. You (or your son) must take control of his health and insist, insist, insist, on g
    1 point
  44. 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
  45. 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
  46. 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
  47. Wow, What a heart wrenching story. I think we all must have a double dose of empathy when we read about the trials of another cushings patient. I agree that publishing the story will really help raise awareness. It also makes me even more resolved to fight and encourage others to fight diligently to get a diagnosis and treatment plan as soon as possible!!!! Time is not our friend with this disease! Gina
    1 point
  48. This must be so devastating for his family, but I'm glad they are bringing this disease to public view. It makes me more thankful that I saw a GP who was able to put all my symptoms together & immediately referred me. This is not always the case over here. Most GP's treat symptoms, they do not look for an underlying cause, that's the way it is over here, they are constantly under pressure to reduce the costs to the NHS, so any referral to a specialist has to be for a DAMNED GOOD REASON! For diagnosis they look for the lowest common denominator, this goes for all diseases, the simp
    1 point
  49. Robin--- What a heart-breaking experience for the family to have to endure---but how courageous of them to share it with others. One of the passages---"He used to say he felt like he was in a bubble where everything he did inside it seemed to be normal but to everyone outside the bubble he appeared to be losing his mind." really hit me like a ton of bricks---this is the best description of something that happened to me a couple of times... If and when I ever get a diagnosis, I'm sending a copy of this article to my "former" doctors, who did not and could not help me w
    1 point
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