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  1. 1 point
    HI EVERYONE I AM NEW HERE. BUT I AM NOT NEW TO CUSHING,S. BEEN SICK FOR MANY MANY YEASRS. I CAN NOT GET HELP HERE WHER I LIVE IN SMALL TOWN NOVA SCOTIA CANADA. THANKS FOR BEING HERE FOR ME.
  2. 1 point
    MEKT1 Could Be a Potential New Therapy for Treating Cushing’s Disease PPAR-γ agonists — agents that activate PPAR-γ — include the medications rosiglitazone and pioglitazone, both of which are used to treat type 2 diabetes. Some studies have shown that rosiglitazone and pioglitazone have an effect on Pomc suppression, which would lead to lower levels of ACTH and help treat patients with Cushing’s disease. However, the benefits of PPAR-γ agonists in the treatment of Cushing’s disease are still controversial. Read more at https://cushieblog.com/2018/08/02/mekt1-could-be-a-potential-new-therapy-for-treating-cushings-disease/
  3. 1 point
    Danielle had suddenly gained more than 20kg, found herself losing hair, constantly breaking bones and struggling to sleep. Making matters worse, the young mother became severely depressed and noticed an unusual-looking ‘hump’ on her back. Read more at https://cushingsbios.com/2018/07/28/danielle-g-pituitary-bio/
  4. 1 point
    New Testimonial From Melanie C I remember my first guest post in 2007, was overjoyed to find I wasn't the only medical anomaly lol! Congratulations to Cushing's Help for coming of age! ? Posted at https://cushieblogger.com/testimonial/melanie-c/
  5. 1 point
    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.
  6. 1 point
    Yes, it is. No one patient has all the symptoms of Cushing's, unfortunately. I think it would be so much easier to diagnose if the doctor could just verify that we had all of the symptoms like they can with a cold. Best of luck!
  7. 1 point
    Only 8 days until the Cushing’s Awareness Challenge 2018 begins. At night, when I’m supposed to be sleeping, ideas for posts keep swarming through my head. Sometimes, they form into fully-written posts. Then, when I wake up, the posts are gone. I plan to follow the suggestions to some extent and have a few ideas of my own. Over the years, I’ve posted lots on several blogs but I don’t know if I can get 30 days of Cushing’s stuff together...again! This is the eighth year of the Cushing's Awareness Challenge. The list of bloggers is on the right side and is constantly updated as new URLs come in. If you want to join us, it's not too late. Directions and suggestions for posts can be found here: https://cushieblogger.com/2018/03/11/time-to-sign-up-for-the-cushings-awareness-challenge-2018/ If you have ideas for what you’d like to read about (Cushing’s related, of course), please feel free to put it in the comments area.
  8. 1 point
    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 one of these on your blog, please post about it here so I can add it to the list of Cushie Bloggers. Happy Blogging!
  9. 1 point
    I plan to do the Cushing's Awareness Challenge again. Last year's info is here: https://cushieblogger.com/2017/03/08/time-to-sign-up-for-the-cushings-awareness-challenge-2017/ The original page is getting very slow loading, so I've moved my own posts to this newer blog. As always, anyone who wants to join me can share their blog URL with me and I'll add it to the links on the right side, so whenever a new post comes up, it will show up automatically. If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc. If you have photos, and you give me permission, I'll add them to the Pinterest page for Cushing's Help. The Cushing’s Awareness Challenge is almost upon us again! Do you blog? Want to get started? Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Eighth Annual Cushing’s Awareness Blogging Challenge. All you have to do is blog about something Cushing’s related for the 30 days of April. There will also be a logo for your blog to show you’ve participated. Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Cushing's Help Facebook Groups, on the message boards or an email and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/) The more people who participate, the more the word will get out about Cushing’s. Suggested topics – or add your own! In what ways have Cushing’s made you a better person? What have you learned about the medical community since you have become sick? If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients? What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that. I have Cushing’s Disease….(personal synopsis) How I found out I have Cushing’s What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.) My challenges with Cushing’s Overcoming challenges with Cushing’s (could include any challenges) If I could speak to an endocrinologist organization, I would tell them…. What would I tell others trying to be diagnosed? What would I tell families of those who are sick with Cushing’s? Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured. What will happen if I’m not cured? I write about my health because… 10 Things I Couldn’t Live Without. My Dream Day. What I learned the hard way Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer) Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual! 5 Challenges & 5 Small Victories. The First Time I… Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more. How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially? Why do you think Cushing’s may not be as rare as doctors believe? What is your theory about what causes Cushing’s? How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals? What new goals did Cushing’s bring to you? How do you cope? What do you do to improve your quality of life as you fight Cushing’s? How Cushing’s affects children and their families Your thoughts…?
  10. 1 point
    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.
  11. 1 point
    Rare Disease Day Each and every day since 1987, I tell anyone who will listen about Cushing’s... Read more at https://cushieblogger.com/2018/02/28/rare-disease-day/
  12. 1 point
    Benefits of Medication Before Surgery for Cushing’s Syndrome Still Unclear https://t.co/NPBQ9HJP20
  13. 1 point
    Usually, you have to do a LOT of 24-hour UFCs to get diagnosed. One just doesn't get it. When I was being diagnosed, I did several weeks of daily UFCS. Are you seeing a good endocrinologist who is knowledgeable about Cushing's? Please keep us posted.
  14. 1 point
    I still have my gallbladder. The HPA axis is the hypothalamic–pituitary–adrenal axis. It can get a little complicated so you might just want to google it for a better understanding but basically the organs that make that up the HPA axis (hypothalamu, pituitary gland and adrenal glands) interact and provide feedback which regulate a lot of body processes such as immunity, mood, energy, emotions and most importantly stress response. For example, when someone gets stressed the hypothalmus produces corticotropin-releasing hormone (CRH) which then signals the pituitary gland to produce adrenocorticotropic hormone (ACTH) which then signals the adrenal glands to produce cortisol. Alcohol can trigger the HPA axis and over time, disrupt it which can cause higher cortisol levels. Most of the research out there is based on continuous consumption of alcohol over an extended period of time so you shouldn't t see high cortisol numbers (like Cushing's high) in someone drinking responsibly and abstaining from drinking during testing.
  15. 1 point
    I just wanted to say hello. You are in such good hands at the NIH. I too, had surgery there and they saved my life. I hope things are going well for you.
  16. 1 point
    Laura, Shaw is absolutely correct. Usually, to diagnose Cushing's, you need many tests, some at specific times of the day and some ALL day. If you can, get to an endocrinologist who is very familiar with Cushing's and Cushing's testing. Best of luck to you and please keep us posted.
  17. 1 point
    Random cortisol is kind of a useless test to test for Cushing's and yes you can have a normal random cortisol result and still have Cushing's.
  18. 1 point
    If you join these boards - it's free - and post a bit, you'll be able to do searches and get lots more features that you have as a guest. Best of luck to you!
  19. 1 point
    Well, I'd say it shouldn't be too long now before there is acknowledgement and cure, but after watching Dr. Drew and the segment on Acromegaly the other night, and the way he completely and so conspicuously avoided ANY mention of ACTH producing tumors, I don't know that there will be in our lifetime. He mentioned prolactinomas and said they were the most common, blah blah blah, talked ALLLLL around it. It couldn't have been unintentional. This is coming from high places. I guess the drug companies have more power than even we know them to.
  20. 1 point
    October 1, 2012 at 6:30 PM eastern, Dr. Amir Hamrahian will answer our questions about Cushing's, pituitary or adrenal issues and Korlym (mifepristone) in BlogTalkRadio at http://www.blogtalkr...s-our-questions You may listen live at the link above. The episode will be added to the Cushing's Help podcast after the show is over. Listen to the podcasts by searching for Cushings in the iTunes podcast area or click here: http://itunes.apple....ats/id350591438 Dr. Hamrahian has had patients on Korlym for about 4 years. Please submit your questions below or email them to CushingsHelp@gmail.com before Sunday, September 30. From Dr. Hamrahian's bio at http://my.clevelandc...x?doctorid=3676 Amir Hamrahian, M.D. (216) 444-6568 http://my.clevelandc...5&DoctorID=3676 Appointed: 2000 Request an Appointment Research & Publications † ( † Disclaimer: This search is powered by PubMed, a service of the U.S. National Library of Medicine. PubMed is a third-party website with no affiliation with Cleveland Clinic.) Biographical Sketch Amir H. Hamrahian, MD, is a Staff member in the Department of Endocrinology, Diabetes and Metabolism at Cleveland Clinic's main campus, having accepted that appointment in 2005. Prior to that appointment, he was also a clinical associate there for nearly five years. His clinical interests include pituitary and adrenal disorders. Dr. Hamrahian received his medical degree from Hacettepe University in Ankara, Turkey, and upon graduation was a general practitioner in the provinces of Hamadan and Tehran, Iran. He completed an internal medicine residency at the University of North Dakota, Fargo, and an endocrinology fellowship at Case Western Reserve University and University Hospitals, Cleveland. In 2003, he received the Teacher of the Year award from Cleveland Clinic's Department of Endocrinology, Diabetes and Metabolism. Dr. Hamrahian speaks three languages -- English, Turkish and Farsi -- and is board-certified in internal medicine as well as endocrinology, diabetes and metabolism. He is a member of the Endocrine Society, Pituitary Society and the American Association of Clinical Endocrinologists. Education & Fellowships Fellowship - University Hospitals of Cleveland Endocrinology Cleveland, OH USA 2000 Residency - University of North Dakota Hospital Internal Medicine Fargo, ND USA 1997 Medical School - Hacettepe University School of Medicine Ankara Turkey 1991 Certifications Internal Medicine Internal Medicine- Endocrinology, Diabetes & Metabolism Specialty Interests Cushing syndrome, acromegaly, pheochromocytoma, prolactinoma, primary aldosteronism, pituitary disorders, adrenal tumor, adrenocortical carcinoma, MEN syndromes, adrenal disorders Awards & Honors Best Doctors in America, 2007-2008 Memberships Pituitary Society Endocrine Society American Association of Clinical Endocrinologists American Medical Association Treatment & Services Radioactive Iodine Treatment Thyroid Aspiration Thyroid Ultrasound Specialty in Diseases and Conditions Acromegaly Addison’s Disease Adrenal disorders Adrenal insufficiency Adrenal Insufficiency and Addison’s Disease Adrenal Tumors Adrenocortical Carcinoma Adrenoleukodystrophy (ALD) Amenorrhea Androgen Deficiency (Low Testosterone) Androgen Excess Calcium Disorders Carcinoid Syndrome Conn's Syndrome Cushing's Syndrome Empty sella Erectile Dysfunction Familial Multiple Endocrine Neoplasia Fasting hypoglycemia Flushing Syndromes Galactorrhea Goiter Growth hormone deficiency Growth hormone excess Gynecomastia Hirsutism Hyperaldosteronism Hyperandrogenism Hyperprolactinemia Hypertension - High Blood Pressure Hyperthyroidism Hypocalcemia Hypoglycemia Hypogonadism Hypoparathyroidism Hypophysitis Hypopituitarism Hypothyroidism Mastocytosis Menopause, Male Menstrual Disorders Paget's Disease Panhypopituitarism Parathyroid Cancer Parathyroid Disease and Calcium Disorders Pheochromocytoma Pituitary Cysts Pituitary Disorders Pituitary stalk lesions Pituitary Tumors Premenstrual Syndrome (PMS) Primary Hyperaldosteronism Primary Hyperparathyroidism Prolactin Excess States Prolactinoma Thyroid and pregnancy Thyroid Cancer Thyroid Disease Thyroid Nodule
  21. 1 point
    I wish there was a more candid discussion about this. Far too many women are wondering about the risks of passing Cushing's along in some form to their children. Some have chosen to adopt, others to not have any more children period (because of the fatigue of the disease), and other still choose to pursue live births. I personally can't wait to have my tubes tied and move on without worry. My son is already trending towards symptoms and I wouldn't wish this on my worst enemy, let alone a child...
  22. 1 point
    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
  23. 1 point
    I can't imagine that anyone with Cushing's would want to chance passing this gene along.
  24. 1 point
    O.k. well this question is a little past the deadline but I hear that not all patients can take Korlym. Which type of patient should not take it?
  25. 1 point
    Are there any long term reproductive implications due to use of Korlym?
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