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Showing content with the highest reputation since 08/26/2018 in all areas

  1. 1 point
    If you search the boards and read previous posts you'll find that almost everyone here has dealt with varying lab levels. It's one of the reasons Cushing's is so difficult to diagnose.
  2. 1 point
    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/
  3. 1 point
    I never had a hump and I definitely had Cushing's Disease. Get some tests and a good doctor.
  4. 1 point
    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/
  5. 1 point
    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.
  6. 1 point
    My family Doctor said she doesn’t see a hump on my back. Is it just me that sees it?
  7. 1 point
    If the Endo does not want to order midnight saliva Cortisol tests go elsewhere.
  8. 1 point
    It's not nearly as rare as some doctors think. Honestly, most of us have bad experiences with at least one endo so that's a possibility but fingers crossed you get one that's willing to listen and will let you do some testing; push for testing. Do your research, read as much as you can before the appointment - bring pictures of your physical changes if you have them and write down your symptoms. I never saw Dr. F for diagnosis but his website and the boards were the best thing ever for me. His site has lots of good articles so I would read everything there http://www.goodhormonehealth.com/cushings-patients/ and read old postings from these boards.
  9. 1 point
    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?"
  10. 1 point
    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
  11. 1 point
    Yes it was all due to my symptoms and how I looked. The surgery only worked for about a month and then all symptoms came back. The surgeon never saw an adenoma but lab kept saying tissue was abnormal so he took my whole right side and sent for pathology and it came back as corticotroph adenoma so next step is seeing another surgeon on September 5 to discuss bilateral adrenalectomy. My DHEAS is always high also.
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