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MaryO

~Chief Cushie~
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MaryO last won the day on September 3

MaryO had the most liked content!

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About MaryO

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    Website Founder
  • Birthday September 22

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    https://cushingsbios.com
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  • Gender
    Female
  • Location
    Northern Virginia
  • Interests
    My family, computers, music, reading, ice cream, handbells, the Internet, Chinese Food, chocolate, watching ice skating competitions, napping, piano duets, Kindle, iPad...in no particular order.

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  1. Minimally invasive diagnostic methods and transnasal surgery may lead to remission in nearly all children with Cushing’s disease, while avoiding more aggressive approaches such as radiation or removal of the adrenal glands, a study shows. The study, “A personal series of 100 children operated for Cushing’s disease (CD): optimizing minimally invasive diagnosis and transnasal surgery to achieve nearly 100% remission including reoperations,” was published in the Journal of Pediatric Endocrinology and Metabolism. Normally, the pituitary produces adrenocorticotropic hormone (ACTH), which stimulates the adrenal glands to produce cortisol. When a patient has a pituitary tumor, that indirectly leads to high levels of cortisol, leading to development of Cushing’s disease (CD). In transnasal surgery (TNS), a surgeon goes through the nose using an endoscope to remove a pituitary tumor. The approach is the first-choice treatment for children with Cushing’s disease due to ACTH-secreting adenomas — or tumors — in the pituitary gland. Micro-adenomas, defined as less than 4 mm, are more common in children and need surgical expertise for removal. It is necessary to determine the exact location of the tumor before conducting the surgery. Additionally, many surgeons perform radiotherapy or bilateral adrenalectomy (removal of both adrenal glands) after the surgery. However, these options are not ideal as they can be detrimental to children who need to re-establish normal growth and development patterns. Dieter K. Lüdecke, a surgeon from Germany’s University of Hamburg, has been able to achieve nearly 100% remission while minimizing the need for pituitary radiation or bilateral adrenalectomy. In this study, researchers looked at how these high remission rates can be achieved while minimizing radiotherapy or bilateral adrenalectomy. Researchers analyzed 100 patients with pediatric CD who had been referred to Lüdecke for surgery from 1980-2009. Data was published in two separate series — series 1, which covers patients from 1980-1995, and series 2, which covers 1996-2009. All the surgeries employed direct TNS. Diagnostic methods for CD have improved significantly over the past 30 years. Advanced endocrine diagnostic investigations, such as testing for levels of salivary cortisol in the late evening and cortisol-releasing hormone tests, have made a diagnosis of CD less invasive. This is particularly important for excluding children with obesity alone from children with obesity and CD. Methods to determine the precise location of micro-adenomas have also improved. The initial methodology to localize tumors was known as inferior petrosal sinus sampling (IPSS), an invasive procedure in which ACTH levels are sampled from the veins that drain the pituitary gland. In series 1, IPSS was performed in 24% of patients, among which 46% were found to have the wrong tumor location. Therefore, IPSS was deemed invasive, risky, and unreliable for this purpose. All adenomas were removed with extensive pituitary exploration. Two patients in series 1 underwent early repeat surgery; all were successful. Lüdecke introduced intraoperative cavernous sinus sampling (CSS), an improved way to predict location of adenomas. This was found to be very helpful in highly select cases and could also be done preoperatively for very small adenomas. In series 2, CSS was used in only 15% of patients thanks to improved MRI and endocrinology tests. All patients who underwent CSS had correct localization of their tumors, indicating its superiority over IPSS. In series 2, three patients underwent repeat TNS, which was successful. In these recurrences, TNS minimized the need for irradiation. The side effects of TNS were minimal. Recurrence rate in series 1 was 16% and 11% in series 2. While Lüdecke’s patients achieved a remission rate of 98%, other studies show cure rates of 45-69%. Only 4% of patients in these two series received radiation therapy. “Minimally invasive unilateral, microsurgical TNS is important functionally for both the nose and pituitary,” the researchers concluded. “Including early re-operations, a 98% remission rate could be achieved and the high risk of pituitary function loss with radiotherapy could be avoided.” From https://cushingsdiseasenews.com/2018/09/04/minimally-invasive-methods-yield-high-remission-in-cushings-disease-children/
  2. Today we remember Janice who died on this date in 2001.
     
    Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn't just stop posting.
     
  3. MaryO

    Please help!!

    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/
  4. MaryO

    Please help!!

    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 2nd opinion. It might save your life Sheryl: Get them to check your cortisol level.
  5. MaryO

    Podcast Interview Info

    Cushing's Podcast Interview Information Scheduled Interviews If you want to be interviewed, please choose "yes" on this form A time will be arranged for your interview. On that day, please call the guest call-in number about 5-10 minutes before the interview is scheduled. You can chat informally with the MaryO before the chat begins. You will hear the BlogTalk lady say "BlogTalkRadio" and there will be some Cushing's theme music followed by your introduction and welcome. The first question will be asked. Talk normally, just like you're on the phone chatting with friends. Archived audio is available through BlogTalkRadio or through iTunes Podcasts This player will play either the last recorded show or, if the show is currently occurring, you can hear the live show. Subscribe to the CushingsHelp podcasts on iTunes Think of our podcast as a radio show on Cushing's. The show consists of many "episodes". You can listen on your computer, or your iPods, completely free of charge. To listen, you will need to "subscribe" to the podcast feed using a "podcatcher" application such as iTunes. After you subscribe, each time you launch iTunes, it will automatically check if new episodes are available and if yes, it will download the most recent episode to your computer for you to hear. Then you can sync your iPod with iTunes to get the show onto your iPod for listening on the go. For help in subscribing to podcasts with iTunes, you can use this tutorial from Apple or if you're iTunes savvy, you can subscribe now! To be interviewed, please be sure to include your name, email address and check the box that says "Would you like to be considered for a phone interview?"
  6. MaryO

    Lab work

    Jen, you were very lucky getting a doctor to test on symptoms alone. Most will only look at lab work Best of luck with your next appointment for a BLA. Ask him/her about the possibility of Nelson's, which can occur sometimes if you still have a pituitary tumor after your BLA.
  7. We have a new form to add your own bio! Try it out here: https://cushingsbios.com/2018/08/28/we-have-a-new-bio-form/ Thank you for submitting your bio - sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed. If you are planning to check the button that reads "Would you like to be considered for an interview? (Yes or No)" please be sure to read the Interview Page for information on how these interviews work. Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing's patients and has already been asked and answered on the Message Boards. Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link. Please post any questions for which you need answers on the message boards. HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
  8. MaryO

    Lab work

    Jen, why did they test you at all since you had normal labs? Did they go by symptoms alone or something else? Congratulations on having surgery!
  9. A plasma adrenocorticotropic hormone suppression test performed shortly after surgical adenomectomy may accurately predict both short- and long-term remission of Cushing’s disease, according to research published in Pituitary. “Cushing’s disease is caused by hypersecretion of adrenocorticotropic hormone (ACTH) by a pituitary adenoma, resulting in hypercortisolism,” Erik Uvelius, MD, of the department of clinical sciences, Skåne University Hospital, Lund University, Sweden, and colleagues wrote in the study background. “Surgical adenomectomy is the first line of treatment. Postoperative remission is reported in 43% to 95% of cases depending on factors such as adenoma size, finding of pituitary adenoma on preoperative MRI and surgeons’ experience. However, there is no consensus on what laboratory assays and biochemical thresholds should be used in determining or predicting remission over time.” In the study, the researchers retrospectively gathered data from medical records of 28 patients who presented with Cushing’s disease to Skåne University Hospital between November 1998 and December 2011, undergoing 45 transsphenoidal adenomectomies. On postoperative days 2 and 3, oral betamethasone was administered (1 mg at 8 a.m., 0.5 mg at 2 p.m., and 0.5 mg at 8 p.m.). Researchers assessed plasma cortisol and plasma ACTH before betamethasone administration and again at 24 and 48 hours, and measured 24-urinary free cortisol on postoperative day 3. At 3 months postoperatively and then annually, plasma concentrations of morning cortisol and ACTH along with urinary-free cortisol and/or a low-dose dexamethasone suppression test were evaluated at the endocrinologists’ discretion. The researchers defined remission as lessening of clinical signs and symptoms of hypercortisolism, as well as laboratory confirmation through the various tests. The researchers used Youden’s index to establish the cutoff with the highest sensitivity and specificity in predicting remission over the short term (3 months) and long term (5 years or more). Clinical accuracy of the different tests was illustrated through the area under curve. The study population consisted of mainly women (71%), with a median age of 49.5 years. No significant disparities were seen in age, sex or surgical technique between patients who underwent a primary procedure and those who underwent reoperation. Two of the patients were diagnosed with pituitary carcinoma and 11 had a macroadenoma. ACTH positivity was identified in all adenomas and pathologists confirmed two cases of ACTH-producing carcinomas. Of the 28 patients, 12 (43%) demonstrated long-term remission at last follow-up. Three patients were not deemed in remission after primary surgery but were not considered eligible for additional surgical intervention, whereas 13 patients underwent 17 reoperations to address remaining disease or recurrence. Four patients demonstrated long-term remission after a second or third procedure, equaling 16 patients (57%) achieving long-term remission, according to the researchers. The researchers found that both short- and long-term remission were most effectively predicted through plasma cortisol after 24 and 48 hours with betamethasone. A short-term remission cutoff of 107 nmol/L was predicted with a sensitivity of 0.85, specificity of 0.94 and a positive predictive value of 0.96 and AUC of 0.92 (95% CI, 0.85-1). A long-term remission cutoff of 49 nmol/L was predicted with a sensitivity of 0.94, specificity of 0.93, positive predictive value of 0.88 and AUC of 0.98 (95% CI, 0.95-1). This cutoff was close to the suppression cutoff for the diagnosis of Cushing’s disease, 50 nmol/L. The cutoff of 25 nmol/L showed that the use of such a strict suppression cutoff would cause a low level of true positives and a higher occurrence of false negatives, according to the researchers. “A 48 h 2 mg/day betamethasone suppression test day 2 and 3 after transsphenoidal surgery of Cushing’s disease could safely predict short- and long-term remission with high accuracy,” the researchers wrote. “Plasma cortisol after 24 hours of suppression showed the best accuracy in predicting 5 years’ remission. Until consensus on remission criteria, it is still the endocrinologists’ combined assessment that defines remission.” – by Jennifer Byrne Disclosures: The authors report no relevant financial disclosures. From https://www.healio.com/endocrinology/neuroendocrinology/news/in-the-journals/%7B0fdfb7b0-e418-4b53-b59d-1ffa3f7b8cd3%7D/acth-test-after-adenomectomy-may-accurately-predict-cushings-disease-remission
  10. I think I knew this already but it's still hard to read in print Functional remission did not occur in most patients with Cushing syndrome who were considered to be in biochemical and clinical remission, according to a study published in Endocrine. This was evidenced by their quality of life, which remained impaired in all domains. The term “functional remission” is a psychiatric concept that is defined as an “association of clinical remission and a recovery of social, professional, and personal levels of functioning.” In this observational study, investigators sought to determine the specific weight of psychological (anxiety and mood, coping, self-esteem) determinants of quality of life in patients with Cushing syndrome who were considered to be in clinical remission. The cohort included 63 patients with hypercortisolism currently in remission who completed self-administered questionnaires that included quality of life (WHOQoL-BREF and Cushing QoL), depression, anxiety, self-esteem, body image, and coping scales. At a median of 3 years since remission, participants had a significantly lower quality of life and body satisfaction score compared with the general population and patients with chronic diseases. Of the cohort, 39 patients (61.9%) reported having low or very low self-esteem, while 16 (25.4%) had high or very high self-esteem. Depression and anxiety were seen in nearly half of the patients and they were more depressed than the general population. In addition, 42.9% of patients still needed working arrangements, while 19% had a disability or cessation of work. Investigators wrote, “This impaired quality of life is strongly correlated to neurocognitive damage, and especially depression, a condition that is frequently confounded with the poor general condition owing to the decreased levels of cortisol. A psychiatric consultation should thus be systematically advised, and [selective serotonin reuptake inhibitor] therapy should be discussed.” Reference Vermalle M, Alessandrini M, Graillon T, et al. Lack of functional remission in Cushing's Syndrome [published online July 17, 2018]. Endocrine. doi:10.1007/s12020-018-1664-7 From https://www.endocrinologyadvisor.com/general-endocrinology/functional-remission-quality-of-life-cushings-syndrome/article/788501/
  11. MaryO

    Lab work

    Unfortunately, this is one of the reasons it's so hard to diagnose Cushing's - far too many normal results and endos stop testing.
  12. MaryO

    Lab work

    I asked some of the other Cushies I know. One said: "I was dx with dex suppression test. Normal levels in AM, normal 24 hr urine."
  13. MaryO

    Lab work

    Absolutely! I had to do weeks and weeks of UFCs before I was finally diagnosed. Best of luck to you, Kenz. I hope you join the boards so you can get access to all the info and here.
  14. Steve, Ectopic Bio

    Steve was undiagnosed for 12 years.  After a pituitary surgery, he turned out to have ectopic Cushing's in his right lung.

    Read more at https://cushingsbios.com/2018/08/05/steve-ectopic-bio/

  15. Night Cortisol Levels for Diagnosing Cushing’s Syndrome Less Accurate in Clinical Practice

    In healthy individuals, the levels of cortisol — a steroid hormone secreted by the adrenal glands — go through changes over a 24-hour period, with the lowest levels normally detected at night.

    But this circadian rhythm is disrupted in certain diseases such as Cushing’s syndrome, where night cortisol levels can be used as a diagnostic tool.

    Among the tests that can be used to detect these levels are late-night serum cortisol (LNSeC) and late-night salivary cortisol (LNSaC) tests. Since it uses saliva samples, LNSaC is more practical and does not require hospitalization, so it is often recommended for the diagnosis of Cushing’s syndrome.

    Read more at https://cushieblog.com/2018/08/05/night-cortisol-levels-for-diagnosing-cushings-syndrome-less-accurate-in-clinical-practice/

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