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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
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  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.
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  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?
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  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
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  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
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  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.
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  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. Update November 22, 2020 I have not updated my patients on the COVID-19 pandemic since March. Since the last update and as of today’s date, 12.2 million Americans have been infected with COVID-19 and 256,000 Americans have died. Several of Dr. Friedman’s patients have been infected with COVID-19. Many businesses have closed and there have been major economic loses. The response to the pandemic has unfortunately been politicized and I say unfortunately because the virus doesn’t distinguish based on victim’s political party. Please see Dr. Friedman’s Letter in the Los Angeles Jewish Journa
    1 point
  19. This is a remarkable paper and has big implications for testing and the diagnostic algorithm, especially given who the authors are. The blunt takeaway is do not use salivary cortisol for adrenal Cushing's because it doesn't work. They recommend dex test instead but we know that test has problems too--yes, even in adrenal cases. It's not clear to me if this is generalizable to all mild Cushing's, nor does it appear like cyclical or episodic Cushing's was considered. The other thing is that the technically "better" assay (LCMS) has worse sensitivity than the older, cheaper one (EIA). This is the
    1 point
  20. Osilodrostat treatment was found to be associated with a rapid and sustained reduction in mean concentration of urinary free cortisol (UFC) and improved clinical symptoms in patients with Cushing’s disease, according to the results of a prospective, multicenter, open-label, phase 3 study published in the Lancet Diabetes Endocrinology. Osilodrostat is an oral inhibitor of 11-β hydroxylase cytochrome P450. Adults aged 18 to 75 years of age with diagnosed persistent or recurrent Cushing’s disease were recruited between 2014 and 2017 at 66 hospitals in 19 countries. Cushing’s disease was defi
    1 point
  21. 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
  22. 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
  23. 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
  24. 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
  25. Thank you so much for sharing your dad's story, Andy. What a sad, difficult one it is. I know when Dr. Cushing was originally testing people for Cushing's disease, he found some of his early patients in the circus (bearded woman, etc) and other patients have been in mental wards before their diagnosis. This disease, especially untreated, can really cause havoc in all aspects of a person's life. I hope you and your family have been able to find some peace since the original article.
    1 point
  26. 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
  27. 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
  28. 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
  29. Removal of pituitary adenomas by inserting surgical instruments through the nose (transsphenoidal resection) remains the best treatment option for pediatric patients, despite its inherent technical difficulties, a new study shows. The study, “Transsphenoidal surgery for pituitary adenomas in pediatric patients: a multicentric retrospective study,” was published in the journal Child’s Nervous System. Pituitary adenomas are rare, benign tumors that slowly grow in the pituitary gland. The incidence of such tumors in the pediatric population is reported to be between 1% and 10% of all ch
    1 point
  30. Presented by Irina Bancos, MD Assistant Professor of Medicine Endocrinology Department Mayo Clinic, Rochester, MN Space is limited. Reserve your webinar seat. After registering you will receive a confirmation email containing information about joining the webinar. Contact us at webinar@pituitary.org if you have any questions. Date: Tuesday, May 28, 2019 Time: 10:00 AM - 11:00 AM Pacific Daylight Time, 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description Learning Objectives: To distinguish between primary and secondary adrenal insufficienc
    1 point
  31. I am currently looking into what seems to be a limited study. Can i ask if any Cushies have been tested for Alpha 1 antitrypsin deficiency and then where diagnosed with Cushing's. Or Were treated for Cushing's, now in remission but experiencing lung issues or found to have liver issues..... have since been tested for A1AD and found to be deficient? I am looking for any studies, papers, personal stories in this area. Any info would be gratefully accepted.
    1 point
  32. 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
  33. Tumors located outside the pituitary gland that produce the adrenocorticotropic hormone (ACTH) may cause, on rare occasions, cyclic Cushing’s syndrome — when cortisol levels show substantial fluctuations over time. That finding, based on the case of a patient with ACTH-secreting lung cancer, is found in the study, “Cyclic Cushing’s syndrome caused by neuroendocrine tumor: a case report,” which was published in Endocrine Journal. Cushing’s syndrome is characterized by too much cortisol, either due to adrenal tumors that produce cortisol in excess, or because too much ACTH in circulat
    1 point
  34. That's fantastic! Getting a doctor who will thoroughly test you is one of the hardest parts of the disease. Nobody wants to be sick of have Cushing's but with a lot of us it's gets to a stage where you just know in your gut what's going on and then you have to fight with doctors to get them to listen. I hope testing is quick and the proof comes back right away so you can get back to feeling like a human again.
    1 point
  35. Presented by Mario Zuccarello, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery and Jonathan A. Forbes, MD Neurosurgeon University of Cincinnati College of Medicine Department of Neurosurgery After registering you will receive a confirmation email containing information about joining the webinar. Contact us at webinar@pituitary.org if you have any questions. Date: December 3, 2018 Time: 3:00PM - 4:00PM Pacific Standard Time 6:00PM - 7:00PM Eastern Standard Time Learning Objectives: To unders
    1 point
  36. 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
  37. I never had a hump and I definitely had Cushing's Disease. Get some tests and a good doctor.
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  38. My family Doctor said she doesn’t see a hump on my back. Is it just me that sees it?
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  39. Hi Sharon, I had all of that except for the nausea. The itching I had mostly at night and it woke me up. The flushing red face and chest and arms were the colour of lobster and then my face was the colour of red wine.
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  40. Sharon, I'm not sure of the answer to this question, but I have occasional itching. Mine started in perimenopause and it was helped by first taking estrogen pills, then weaning off them and onto soy shakes. When I became menopausal, the itching seemed to have stopped but it's returned in recent years. Only occasionally, but about every month I get intense random itching. Benadryl helps. Because of the seemingly cyclical pattern to the itching, I asked my endo about it and he said I should get my liver tested. (I didn't. I just put up with the itching when it happens). So
    1 point
  41. 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
  42. A noninvasive 7 Tesla MRI scanner at University of Southern California is the first 7T scanner to be used on a patient with Cushing's disease in the U.S., according to a USC news release. When a brain tumor was found to be "MRI-negative" in a 28-year-old female patient, physicians at the USC's Pituitary Center were unsatisfied with the results. After deciding to use the Neuroimaging and Informatics Institute's (INI) new ultrahigh field 7 Tesla MRI scanner to localize the tumor, the patient was officially diagnosed with Cushing's disease and researchers were finally able to see the tumor
    1 point
  43. 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
  44. People with high cortisol levels have lower muscle mass and higher visceral fat deposits, putting them at a greater risk for cardiovascular disease, new research shows. High levels of cortisol can result from a variety of reasons, including Cushing’s disease and adrenal tumors. Most adrenal tumors are found to be non-functioning, meaning they do not produce excess hormones. However, up to 47 percent of patients have mild autonomous cortisol excess (MACE). The study, “Impact of hypercortisolism on skeletal muscle mass and adipose tissue mass in patients with adrenal adenomas,” was pub
    1 point
  45. Join Dr. Theodore Friedman for an informative webinar on the endocrine causes of hair loss in women. Dr. Friedman will discuss what hormones to measure if a woman is experiencing hair loss. He will discuss how to optimize hormone replacement to minimize or reverse hair loss. There will be plenty of time for questions and discussion. Sunday, July 16, 2017 at 5:00 pm Pacific Daylight Time, 8:00 pm Eastern Daylight Time Meeting number (access code): 808 128 401 Meeting password: hormones join the meeting at https://axisconciergemeetings.webex.com/mw3200/mywebex/default.do?serv
    1 point
  46. 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
  47. 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
  48. Thanks for sharing this story Robin. Kinda tugs on the ol' strings doesn't it.
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  49. 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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