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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
    2 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
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  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
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  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
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  7. 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
  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. 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!
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  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. Susanne, this is not a blog. It is a message board about Cushing's Syndrome and Disease. I would suggest you do a google search for how to write blog posts.
    1 point
  19. Hypercortisolism Quickly Reversed With Oral Tx Oral osilodrostat (Isturisa) normalized cortisol levels in Cushing's disease patients who were ineligible for or not cured with pituitary surgery, according to the phase III LINC 3 trial. After 24 weeks of open-label treatment with twice-daily osilodrostat, 53% of patients (72 of 137; 95% CI 43.9-61.1) were able to maintain a complete response -- marked by mean 24-hour urinary free cortisol concentration of the upper limit of normal or below -- without any uptitration in dosage after the initial 12-week buildup phase, reported Rosario Pi
    1 point
  20. 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
  21. 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
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  23. Presented by Varun Kshettry, MD Director, Advanced Endoscopic & Microscopic Neurosurgery Cleveland Clinic Lerner College of Medicine Register Now After registering you will receive a confirmation email with details about joining the webinar. Date: Tuesday, February 18, 2020 Time: 10:00 AM - 11:00 AM Pacific Standard Time, 1:00 PM - 2:00 PM Eastern Standard Time Learning Objectives: Discuss patient expectations for pituitary surgery and recovery Discuss best practices to minimize risk of complications What questions to ask your medical providers
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  24. I would be very interested to learn the current status of any Disability Claim for Agent Orange with Cushing. My 47 year old daughter had surgery in 2008 for unilateral adrenal Cushings in Orlando, FL. Frank
    1 point
  25. 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
  26. LOS ANGELES — More than a century has passed since the neurosurgeon and pathologist Harvey Cushing first discovered the disease that would eventually bear his name, but only recently have several key discoveries offered patients with the condition real hope for a cure, according to a speaker here. There are several challenges clinicians confront in the diagnosis and treatment of Cushing’s disease, Shlomo Melmed, MB, ChB, FRCP, MACP, dean, executive vice president and professor of medicine at Cedars-Sinai Medical Center in Los Angeles, said during a plenary presentation. Patients who prese
    1 point
  27. I just did a search of these boards and there are 3 other topics on antitrypsin...
    1 point
  28. NEW ORLEANS — The investigational drug osilodrostat (Novartis) continues to show promise for treating Cushing's disease, now with new phase 3 trial data. The data from the phase 3, multicenter, double-blind randomized withdrawal study (LINC-3) of osilodrostat in 137 patients with Cushing's disease were presented here at ENDO 2019: The Endocrine Society Annual Meeting by Beverly M.K. Biller, MD, of the Neuroendocrine & Pituitary Tumor Center at Massachusetts General Hospital, Boston. "Osilodrostat was effective and shows promise for the treatment of patients with Cushing's disease
    1 point
  29. Patna: Improper functioning of the Pituitary gland usually results in excess or under production of hormones that leads to a formation of mass called tumor, which can be benign or malignant. Such tumors in this gland can create numerous serious medical conditions by interfering with the normal functioning of the endocrine system and pituitary gland. “Though the occurrence of tumor is more likely after the age of 30 years, it still can impact at an early age. The survival rates of tumor due to its complicated location also depend on other factors like the patient’s age, type and siz
    1 point
  30. TOKYO and LONDON, Feb. 20, 2019 /PRNewswire/ -- Sosei Group Corporation ("the Company"; TSE: 4565), announces that the first healthy subject has been dosed with a novel small molecule HTL0030310 in a Phase I clinical study, marking the start of a new in-house clinical program targeting endocrine disorders, including Cushing's disease. HTL0030310 is a potent and selective agonist of the SSTR5 (somatostatin 5) receptor and the sixth molecule designed by the Company using its GPCR Structure-Based Drug Design (SBDD) platform to enter clinical development. HTL0030310 has been designed to
    1 point
  31. 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 exposur
    1 point
  32. 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
  33. For those who can not make it to Washington, DC next week, we're pleased to announce a livestream will be available for the Rare Disease Congressional Caucus briefing. Rare Disease Legislative Advocates with honorary co-hosts Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a lunch briefing: The Diagnostic Odyssey Tuesday, December 4, 2018, from 12:00 p.m. until 1:00 p.m. 121 Cannon House Office Building Complimentary lunch includ
    1 point
  34. My then teen had this and also had stretch marks and trouble breathing. We had some testing done and he did have low testosterone. They would not help him. He had the same weight gain the. He is now almost 275 lbs and now he wont test for cushings. Maybe get some labwork and see whats going on. I am in remission of cushings.
    1 point
  35. These are pictures of me taken 3 years apart. 45lb weight gain.
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  36. Thanks to all that have responded to my post. I have an endocrinologist appt. on October 23rd. I pray that he has the wisdom to help me.
    1 point
  37. 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
  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. Responses from Facebook: Shauna : Heard all that for 4 years before my doc sent me to endocrinologist who took great pleasure in calling my doc to advise and ask what surgeon she should sent me too. Robyn: I did all the research and my dr did the testing to shut me up. I was right, unfortunately, and do have Cushings. You have to advocate for yourself. Diana :You will need a variety of tests, if she says just one test, move on. She's wrong. Find a doctor who is willing to test and not tell you what you couldn't possiblly have. Maxine: I heard that same bs. Get a
    1 point
  40. My family Doctor said she doesn’t see a hump on my back. Is it just me that sees it?
    1 point
  41. Metyrapone treatments helped patients with Cushing syndrome reach normal, urinary-free cortisol levels in the short-term and also had long-term benefits, according to a study published in Endocrine. This observational, longitudinal study evaluated the effects of the 11β -hydroxylase inhibitor metyrapone on adult patients with Cushing syndrome. Urinary-free cortisol and late-night salivary cortisol levels were evaluated in 31 patients who were already treated with metyrapone to monitor cortisol normalization and rhythm. The average length of metyrapone treatment was 9 months, and 6 pa
    1 point
  42. Oh boy me too. I was paranoid for the first few years and anxious because I always thought Cushing's was coming back. Luckily I had family and a doctor who understood where I was coming from so I could test anytime I wanted to. It took a long time for me to remember things like women have PMS at times and that has nothing to do with Cushing's. I will say I only worried when I wasn't feeling great, when I feel good it never crosses my mind and these days I'm much better at not worrying or feeling anxiety about it.
    1 point
  43. First – write mostly about Cushing’s Then add one of these images to your blog: White Background: Transparent images, same directions: If your blog wants a URL instead of the image, that URL is http://www.cushings-help.com/blog/cushblogsmall.png If your blog wants you to upload an image from your desktop, right-click on one of the above images above and choose "save-as". Remember where you saved it to! In all cases, the URL for the site is http://www.cushings-help.com If you put on
    1 point
  44. 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
  45. 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 glucocoticoster
    1 point
  46. 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!
    1 point
  47. 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
  48. Hi Kathy, your son symptoms do sound like Cushing’s and with the three high 24-hour urines really point to the disease. From what I have read, there are people with Cushing’s that have never been able to get a positive high on a saliva test. Your son may be one of them. I am not sure how Kaiser Health care works. I would check into doing 4-6 midnight cortisol serums. http://jcem.endojournals.org/content/83/4/1163.long. He will have his blood drawn at the ER at the hospital. I was able to bypass the ER and the techs had me walk to there lab, so it was a painless process for me...others hav
    1 point
  49. 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
    1 point
  50. NOT that it would help this family, per se, but my advice would be to SUE SUE SUE SUE SUE -- if only to hold his former doctors responsible for their negligence. If we keep taking a passive approach, then there will NEVER be any accountability to properly test for this disease when the symptoms are right there in front of the noses of so many prior medical professionals! I am not suggesting anything I don't plan to do myself. If my own lawsuit will force this one single repro-endo practice to more aggresively test (or at least refer out) potential Cushing's patients, then it will save li
    1 point

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