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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 Christina P I found it [Cushing's Help] 11 years ago quite by accident and it not only changed my life but saved my life! Thank you, Mary Kelly O'Connor! Read more at https://cushieblogger.com/testimonial/christina-p-5/
  5. 1 point
    Cushings Help is almost 18! It's unbelievable but the idea for Cushing's Help and Support arrived 18 years ago tonight. Read more at https://cushieblogger.com/2018/07/20/were-almost-18/
  6. 1 point
    In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about 'getting rid of extra belly fat' by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.Read more at http://www.cushings-info.com/index.php?title=Adrenal_Insufficiency
  7. 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/
  8. 1 point
    In Europe, nearly 20 percent of patients with Cushing’s syndrome receive some sort of medication for the disease before undergoing surgery, a new study shows. Six months after surgery, these patients had remission and mortality rates similar to those who received surgery as a first-line treatment, despite having worse disease manifestations when the study began. However, preoperative medication may limit doctors’ ability to determine the immediate success of surgery, researchers said. Read more at https://cushieblog.com/2018/02/26/benefits-of-medication-before-surgery-for-cushings-syndrome-still-unclear/
  9. 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.
  10. 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.
  11. 1 point
    Hi, Sorry I'm late responding. I have only recently returned to the boards. I have a couple of things to say about fat pads over the collar bones. First is to make sure they are fat pads. You say they are tender, to make sure its not swollen glands, hunch your shoulders up to your ears and feel inside your collarbone for any hard lumps. If this test shows no hard lumps then it most likely is fat pads. One of the most common reasons for fat pads over the collar bones is stress. Cortisol is our stress hormone. So it certainly wont hurt to have cortisol levels checked. 24 hr Urine, with Midnight saliva test followed by an early morning Blood cortisol and ACTH test should give a good picture of if it is cushing or something else. Just know that one test in the normal range does not rule out cushings, just as one abnormal result doesnt confirm cushings. It takes a range of tests over several months to get a diagnosis. Because the treatment is pretty serious, your medical team will want to make sure what they are doing is right for you. I know it can be frustrating lol it was for me. But I have learnt that my Medical team does have my best interests at heart, even if they did consider that I was somehow making myself sick !! I proved them wrong For me.... If you think there is something not right, go with your gut and get it checked out. You know your body and every body is different :). So one scenario is not going to be exactly alike Good luck
  12. 1 point
    The dried urine isn't really going to be helpful for looking into Cushing's. You'd be better off doing a 24 hour urinary cortisol if your doctor will order one.
  13. 1 point
    You said you did a urine test; was that a 24 hour urine test? What can happen with Cushing's is you have high cortisol levels at night but very low ones during the morning/day and if you do a 24 hour urine sometimes these almost cancel each other out and your result is a completely normal urine test.
  14. 1 point
    Shaw is correct. Most of the info on this board is available to members only to protect their privacy. We hope you join us so you can read everything and share with us. In the meantime, there's information about IPSS on our Wiki at http://www.cushings-info.com/index.php?title=Diagnostic_Testing#Petrosal_Sinus_Sampling Best of luck to you!
  15. 1 point
    Top right hand corner there's a box that says "Search..." You can select where you want to go search (All Content, Topics, Members etc). I believe you have to register/create an account. before the search function is visible.
  16. 1 point
    I plan to do the Cushing's Awareness Challenge again. Last year's info is here: http://cushie-blogger.blogspot.com/2016/03/fifth-annual-cushings-awareness.html That page is getting very slow loading, so I've moved my own posts to a new blog at https://cushieblogger.com 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 here on Facebook at Cushings Help Organization, Inc 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 Sixth 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 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…?
  17. 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
  18. 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.
  19. 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...
  20. 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
  21. 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?
  22. 1 point
    I have several symptoms of Cushings: weight gain around middle, puffy face, extreme fatigue/no energy, feel weak going upstairs, buffalo hump, insomnia, numbness in feet, headache... Do not have: Striae, skin that bruises easily, slow healing cuts, acne, more body hair, absent menstrual periods Other Symptoms: Lymph glands in neck burning/throbbing from time to time, still reoccurring knee pain (Lymes?) Recently diagnosed/treated for Lymes disease Creatinine 1833 (Range 700-1800) Positive Thyroid Antibody test (not extremely high though 76 (Range 0-34) TSH 2.5 in April now 1.650 (Range 0.340-4.820) Free T4 0.74 (range 0.59-1.40) Low Vit D. Treated white cell count normal I took the 24 hour Free urine Cortisol test and it was only 2.5 points above the normal range 52.5 (range 4.0-50.0). I have another appt. with Endo but should I just cancel it as she said unless my Thyroid levels were out of range she would not treat me? I feel so horrible...mainly from the extreme weight gain and fatigue. I don't know what I should do next? Could this be Cushings? Hashimotos (but not affecting my thyroid levels yet), still Lymes disease? Appreciate your insight and Medical Expertise
  23. 1 point
    It would be very useful to discuss the experiences of patients on Korlym recently who are diagnosed with Cushing's, or with recurrence, cyclical or episodic and on Korlym. Specifically, how is the performance of Korlym and the severe adrenal insufficiency being monitored and adjustments made, if at all, in those who gain benefits and mitigate severe adverse reactions with patient initiated dosing experimentation leading to dosing regimens of every 2-3 days and at less than recommended doses? This has allowed folks to remain on the drug, have far fewer complications and gain improved glucose and weight control. As normally rx'ed these folks would have to discontinue the drug. These patients get benefits with less Korlym and with less frequency due to its effects and very long half life. Is any organized monitoring of these post trial, more cyclical cases being undertaken? The company seems to wave off or dismiss these reports yet they are critical to understanding how fully the drug may be used by so many who it otherwise makes too ill. Studying this group may also provide further insights into unpredictable, episodic and cyclical disease, as well.
  24. 1 point
    Are there any long term reproductive implications due to use of Korlym?
  25. 1 point
    Thanks so much, Betseebee. We still need questions from folks in advance.
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