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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!! 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. 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
  13. 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 -
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  14. 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
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  15. 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
  16. 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
  17. Carma, I removed the links from your post. I suggest you try spamming elsewhere.
    1 point
  18. Thanks for being a member of Rare Patient Voice, LLC. We have an opportunity for you to take part in a Cushing Syndrome interview (NEON_4470) for Patients. Our project number for this study is NEON_4470. Project Details: Telephone interview Interview is 60-minutes long One Hundred Dollar Reward Looking for Patients diagnosed with Endogenous Cushing Syndrome Things to Note: Patient study only, Caregivers please pass the link along Unique links, please do not pass along for 2nd use Want to share this opportunity? Let us know and we can provide
    1 point
  19. Study Authors: Tsung-Chieh Yao, Ya-Wen Huang, et al.; Beth I. Wallace, Akbar K. Waljee Target Audience and Goal Statement: Primary care physicians, rheumatologists, pulmonologists, dermatologists, gastroenterologists, cardiologists The goal of this study was to examine the associations between oral corticosteroid bursts and severe adverse events among adults in Taiwan. Question Addressed: What were the associations between steroid bursts and severe adverse events, specifically gastrointestinal (GI) bleeding, sepsis, and heart failure? Study Synopsis and Perspective:
    1 point
  20. 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
  21. 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
  22. I think we always knew Cushing's and pregnancy were related... Abstract Cushing’s syndrome (CS) during pregnancy is very rare with a few cases reported in the literature. Of great interest, some cases of CS during pregnancy spontaneously resolve after delivery. Most studies suggest that aberrant luteinizing hormone (LH)/human chorionic gonadotropin (hCG) receptor (LHCGR) seems to play a critical role in the pathogenesis of CS during pregnancy. However, not all women during pregnancy are observed cortisol hypersecretion. Moreover, some cases of adrenal tumors or macr
    1 point
  23. Family's Despair over Rare Disease Exclusive By Benjamin Parkes THE family of a Chippenham man who died of a rare hormonal disorder have told of the despair his illness caused before it was diagnosed. An inquest held in Flax Bourton on Tuesday ruled that John Goacher, 51, of Stonelea Close, died of natural causes on May 18 last year, after having surgery at Frenchay Hospital in Bristol. The operation was intended to ease the symptoms of Cushing's Disease, which included obesity, a rounded face, increased fat around the neck and thinning arms and legs. Cushing's is a disorder that
    1 point
  24. 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
  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 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
    1 point
  26. Braun LT, Fazel J, Zopp S Journal of Bone and Mineral Research | May 22, 2020 This study was attempted to assess 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. Researchers ascertained five bone turnover markers at the time of diagnosis, 1 and 2 years postoperatively. Via chemiluminescent immunoassays, they assessed bone turnover markers osteocalcin, intact procollagen‐IN‐propeptide, alkaline bo
    1 point
  27. Those are all definitely symptoms of Cushing's...and excess cortisol. I think I had every one of them while I was being diagnosed. Have you taken steroids, especially often? They can cause these symptoms. Definitely mention these symptoms to your doctor. Please keep us posted.
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  28. 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
  29. Presented by Jamie J. Van Gompel, M.D., B.S., Professor in Neurosurgery and Otolaryngology specializing in endoscopic/open skull base focusing on Pituitary tumors as well as Epilepsy at the Mayo Clinic in Rochester, Minnesota, USA and Garret W. Choby, M.D., a fellowship-trained rhinologist and endoscopic skull base surgeon practicing at the Mayo Clinic. Objectives: - Understand the additional considerations that are key to performing endonasal surgery during the COVID pandemic - Identify the practice changes that are allowing pituitary surgery to proceed
    1 point
  30. Has anyone suggested Cyclic Cushing's to you? That's where tests cycle normal/abnormal but no one knows how long a person's cycle could be. That's even harder to diagnose due to the constant fluctuations and some endos don't believe in it, although I don't understand how a doctor can't believe in a disease. Here are the bios of some Cushies with Cyclic Cushing's: https://cushingsbios.com/category/cyclic/
    1 point
  31. I asked some other Cushies I know and got this answer so far:
    1 point
  32. Endocrinologists have underlined the importance that physicians consider "a stress dose" of glucocorticoids in the event of severe COVID-19 infection in endocrine, and other, patients on long-term steroids. People taking corticosteroids on a routine basis for a variety of underlying inflammatory conditions, such as asthma, allergies, and arthritis, are at elevated risk of being infected with, and adversely affected by, COVID-19. This also applies to a rarer group of patients with adrenal insufficiency and uncontrolled Cushing syndrome, as well as secondary adrenal insu
    1 point
  33. Along with all of you, NADF is monitoring this outbreak by paying close attention to CDC and FDA updates. We have also asked our Medical Advisor to help answer your important questions as they come up. We asked Medical Director Paul Margulies, MD, FACE, FACP to help us with this question: Question: Does Adrenal Insufficiency cause us to have a weakened immune system and therefore make us more susceptible? Response: Individuals with adrenal insufficiency on replacement doses of glucocorticoids do not have a suppressed immune system. The autoimmune mechanism that causes Addison’s
    1 point
  34. The Barrow Pituitary Center is dedicated to educating patients, caregivers, and loved ones by providing information which is current and non-biased. Experts at this conference will address management of the emotional and physical elements of living with pituitary disorders. We hope attendees will leave empowered to make better informed decisions about their healthcare and achieve their goals for a long and fruitful life. Saturday, March 14, 2020 8:00 a.m. to 4:00 p.m. $30 per person To register call 1 (877) 728-5414 or visit us at https://www.barrowneuro.org/outreach/pituitary-cen
    1 point
  35. 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
    1 point
  36. Published: 13 January 2020 Shigemitsu Yasuda, Yusuke Hikima, Yusuke Kabeya, Shinichiro Iida, Yoichi Oikawa, Masashi Isshiki, Ikuo Inoue, Akira Shimada & Mitsuhiko Noda BMC Endocrine Disorders volume 20, Article number: 9 (2020) Abstract Background Primary aldosteronism (PA) plus subclinical Cushing’s syndrome (SCS), PASCS, has occasionally been reported. We aimed to clinical
    1 point
  37. 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
  38. Sethi A, et al. Clin Endocrinol. 2019;doi:10.1111/CEN.14146. January 5, 2020 Obesity is common at diagnosis of pituitary adenoma in childhood and may persist despite successful treatment, according to findings published in Clinical Endocrinology. “The importance of childhood and adolescent obesity on noncommunicable disease in adult life is well recognized, and in this new cohort of patients, we report that obesity is common at presentation of pituitary adenoma in childhood and that successful treatment is not necessarily associated with weight loss,” Aashish Sethi, MD, MBBS, a p
    1 point
  39. A diagnostic technique called bilateral inferior petrosal sinus sampling (BIPSS), which measures the levels of the adrenocorticotropic hormone (ACTH) produced by the pituitary gland, should only be used to diagnose cyclic Cushing’s syndrome patients during periods of cortisol excess, a case report shows. When it is used during a spontaneous remission period of cycling Cushing’s syndrome, this kind of sampling can lead to false results, the researchers found. The study, “A pitfall of bilateral inferior petrosal sinus sampling in cyclic Cushing’s syndrome,” was published in BMC Endocri
    1 point
  40. until
    Wed, Jan 8, 2020, from 4:00 PM - 5:00 PM EST Presented by Paul Gardner, MD Associate Professor of Neurological Surgery Neurosurgical Director, Center for Cranial Base Surgery Executive Vice Chairman for Surgical Services University Pittsburgh Medical Center (UPMC) Learning Objectives: Upon completion of this webinar, participants should be able to: Recognize the role for surgery in treating recurrent adenomas Understand the risk and role of radiosurgery for treatment of recurrent Identify treatment indications for recurrent adenomas. Presenter Bio Paul A. Gardner, MD, is an Asso
    1 point
  41. Wed, Jan 8, 2020, from 4:00 PM - 5:00 PM EST Presented by Paul Gardner, MD Associate Professor of Neurological Surgery Neurosurgical Director, Center for Cranial Base Surgery Executive Vice Chairman for Surgical Services University Pittsburgh Medical Center (UPMC) Learning Objectives: Upon completion of this webinar, participants should be able to: Recognize the role for surgery in treating recurrent adenomas Understand the risk and role of radiosurgery for treatment of recurrent Identify treatment indications for recurrent adenomas. Presenter Bio Paul A. Gardner, MD, is an Asso
    1 point
  42. 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
  43. I have Kaiser in VA. After 2 high 24 hour cortisol tests, my endocrinologist referred me to NIH. I am not sure that Kaiser has the expertise in house to effectively diagnose and treat Cushings. That said, my Kaiser accupuncturist is the one who tested my DHEA, which was nonexistent and referred me to the endocrinologist. Maybe he could contact my endocrinologist at Kaiser and see what he says - Dr T Lee in Falls Church, VA. NIH treatment is free except for the transportation.
    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. 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
  46. How sad. He never got to know life after Cushings, either.
    1 point
  47. 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
  48. Boy Oh Boy this one scares the H- E DOUBLE TOOTHPICKS out of me, it hits so close to MY home! Lisa I think I will wear the Xtra gear this week!
    1 point
  49. Man oh man . . . . . when will they ever get it. It is so sad and scary to read of such a tragedy. And to read his symptoms . . . . . boy does that hit home. Thanks for posting Robin. Amy
    1 point
  50. 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

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