Chief Cushie ~MaryO~ Posted September 21, 2012 Chief Cushie Report Share Posted September 21, 2012 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 1 Link to comment Share on other sites More sharing options...
Over 2000 Posts betseebee Posted September 26, 2012 Over 2000 Posts Report Share Posted September 26, 2012 Looking forward to it Mary. Thanks so much for arranging it. 1 Link to comment Share on other sites More sharing options...
Chief Cushie ~MaryO~ Posted September 27, 2012 Author Chief Cushie Report Share Posted September 27, 2012 Thanks so much, Betseebee. We still need questions from folks in advance. 1 Link to comment Share on other sites More sharing options...
Over 2000 Posts aautomo884 Posted September 29, 2012 Over 2000 Posts Report Share Posted September 29, 2012 I lost copious amounts of hair while on Korlym, is this a known side effect? 1 Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club smcsk8 Posted September 29, 2012 Member of the 1000 Post Club Report Share Posted September 29, 2012 Are there any long term reproductive implications due to use of Korlym? 1 Link to comment Share on other sites More sharing options...
MCF Posted September 30, 2012 Report Share Posted September 30, 2012 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. 1 Link to comment Share on other sites More sharing options...
Heather76 Posted October 1, 2012 Report Share Posted October 1, 2012 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 1 Link to comment Share on other sites More sharing options...
Over 2000 Posts betseebee Posted October 1, 2012 Over 2000 Posts Report Share Posted October 1, 2012 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? 1 Link to comment Share on other sites More sharing options...
zhen Posted October 1, 2012 Report Share Posted October 1, 2012 Are there any long term reproductive implications due to use of Korlym? I can't imagine that anyone with Cushing's would want to chance passing this gene along. 1 Link to comment Share on other sites More sharing options...
Chief Cushie ~MaryO~ Posted October 1, 2012 Author Chief Cushie Report Share Posted October 1, 2012 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 1 Link to comment Share on other sites More sharing options...
Over 2000 Posts missaf Posted October 2, 2012 Over 2000 Posts Report Share Posted October 2, 2012 I can't imagine that anyone with Cushing's would want to chance passing this gene along. 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... 1 Link to comment Share on other sites More sharing options...
Member of the 1000 Post Club sal Posted October 7, 2012 Member of the 1000 Post Club Report Share Posted October 7, 2012 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. 1 Link to comment Share on other sites More sharing options...
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