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Found 18 results

  1. Guest

    Developing Cushings?

    Hello! I have been on hydrocortisone for almost two years from LOW-functioning adrenal glands. At first, the medication helped me (my blood pressure was so low, I was dizzy, sickly, couldn't bathe, needed help to the restroom, couldn't eat, heart racing, trouble breathing, and more). It helped me get out of bed again....temporarily. It helped a little with the shortness of breath. It helped me with my racing heart and blood pressure. I was on it about 8 months and then I started developing my symptoms all over again. I'm pretty much bedridden. I know I need to get off the steroids because docs have been saying that pretty much ever since I was put on it. They were so worried about me being on it and now I can understand why. I feel WORSE. Do you know if Cushings can come from taking steroid medication long term? I am developing a buffalo hump and I am feeling so ill every day. I want to wean from the meds, as I feel they are making me worse, but any weaning has resulted in worsened symptoms (that have already worsened). I am 26 year old female. I was a half-marathon runner/athlete at age 22, then a year later after my cousin's death, my health rapidly declined. Stress got to me and I became sicker and sicker, leading to weakened adrenals and the need for hydrocortisone. I just want to FEEL 26. I don't think I HAVE cushing's because my blood pressure is still low or low normal when checking. I have definitely gained weight (70 pounds since the steroids) and have a round face. Any thoughts? Thank you very much.
  2. MaryO

    In Memory: Melinda Smith

    Sadly, we lost another Cushing’s patient on Friday, May 9, 2014. Melinda was a member of the Cushing’s Help message boards since Jun 24, 2007. She was only 25 and left behind a young son and many loving family members. Read more at https://cushingsbios.com/2015/05/09/in-memory-of-melinda-smith-1988-2014/
  3. MaryO

    In Memory: Gregory J. Bart Jr.

    He died of a presumed heart attack. September 19, 2015 he said 'I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I'll have to consult my doc and see if this may also be an issue.' More information at https://cushingsbios.com/2016/05/08/in-memory-gregory-j-bart-jr-may-7-2016/
  4. In Memory: Kathryn McBride ‘Bridie’ Miller Murdered May 1, 2007 'My name is Caroline and I dont post often but have met a few of you guys and read the board regularly, it has definitely been a godsend to cushies everywhere. The reason I am writing tonight is I have just received devastating information about a dear friend of mine, and a woman some of you may have met during testing. Her name is Kathryn Miller and she is a patient of Dr. Ludlam, that is how she and I met. She was diagnosed with cushings late last fall and had surgery in December and was doing pretty well afterwards...' Read more at https://cushingsbios.com/2015/05/01/in-memory-kathryn-mcbride-bridie-miller/
  5. 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…?
  6. Sign Up and Enjoy Patient Benefits To join our database and to receive a $5 gift card if you qualify, please complete the form below. Currently, we are looking for patients and caregivers with many different rare conditions. Please fill out the sign-up form below and we’ll let you know if you qualify. If you are the caregiver of more than one patient, or are both a patient and caregiver, please fill out a separate entry for each and you will receive multiple gift cards. Please be aware that each entry is checked individually. Please include your correct personal phone number as we will call you to verify your information. It may take up to four weeks before you receive your gift card if you qualify. Read more about how we use your information. At this time we are accepting patients and caregivers across all diseases and conditions. However, that does not guarantee we will have surveys for you. If there are not any companies that have treatments available, or there are no companies developing treatments, then there would be no sponsors for surveys. But we are always looking for sponsors for all disease categories! Only one caregiver per household, please! That is because our survey sponsors won’t allow more than one response from caregivers in the same household. If you have more than one caregiver, you can decide which of you can do each survey. Please be aware that the rewards you earn from participating in market research, like all income you receive, is considered taxable by the IRS. We are required to submit form 1099 for each patient or caregiver whom we pay $600 or more in a year. We are proud to say that we’ve rewarded patients with over $2.1 million for participating in surveys in the past four years! Register here!
  7. NotSoCushie

    alcohol

    Hi Cushies: Without alcohol, I felt like I was walking around in a brain fog dream state. Did anyone with Cushings disease notice that when they drank alcohol they could drink a much larger amount than ever before without getting a buzz or being drunk?
  8. A friend of mine, who is a nurse, randomly asked if I had ever been diagnosed with Cushing's Syndrome. I told him no, I'd never heard of it before, and started looking into it. I probably shouldn't have, because now I am paranoid. Some of my symptoms match, but I don't have the main symptoms. I'm fairly thin, with pale skin which bruises and tears easily. I have been diagnosed with depression and anxiety which lead to panic attacks, and the medications I take don't seem to work for me. I have a naturally round face, or so I think, that is almost always red with acne on my cheeks and neck. I don't think I'm gaining weight, or have a hump between my shoulders. I'm afraid to think I have something so severe just because I want to feel better from this crippling depression that has taken 4 years of my life from me. Do I sound like a Cushie?
  9. FerolV

    It came Back

    I am a very late entry. Shortly after my 5th anniversary post surgery 2005, in the 6th year, I knew something was "different". That old sense of dread returned. At the 6th anniversary checkup, I popped a "high" on urine cortisol. But it was a one time thing, not repeated in a "sequential lab". Over the next two years, my blood sugar went haywire, not controlled by higher and higher doses of metformin. My weight began creeping up from 150# to just over 180# when the blood labs confirmed in the 8th year, "the monster" was back, with a new head. I was referred to UVA, Dr. Mary V. and her teammate surgeon, Dr. O. They also brought in the GKS EXPERT at UVA, a pleasant "young man", In 2013, October I had debulking of the tumor and 7 weeks later in December the GKS. We put on some fine music and I took a nap. Here I am in the 4th year since second round of surgery, and all labs are excellent. Getting OLD isn't so much fun, but endocrine is OK.
  10. 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…?
  11. It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease. Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school. I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007. I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later. I’d always suffered from migraines, but only around my menstrual periods. I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life. In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible. I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl. But I started seeing a doctor to pinpoint the cause of the migraine headaches. I had a CT scan which came back negative for any problems. I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped. I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill. I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women. Those lifestyle changes helped a little, but I was still having them. Read more at My Journey | Living with Cushing's Disease. Rachel will be our guest in an interview on BlogTalk Radio Wednesday, June 3 at 6:00 PM eastern. The Call-In number for questions or comments is (657) 383-0416. The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. While you're waiting, there are currently 84 other past interviews to listen to!
  12. Hello all, I'm Michelle mother of 3 beautiful children, I work part-time, 33yrs young, non-smoker, non-drinker, overall health is good for the most part.....Where do I even begin. I just recently received the diagnosis of cyclic Cushing's. I'm not really sure how long I have actually had Cushing's because I have had a diagnosis of PCOS since I was 17 yrs. old ( I'm now the ripe young age of 33). However looking back through labs with my endocrinologist who I see every 6 months, my ACTH levels have been elevated for a bit over 1 yr. It was not until recently January of 2015- things were going terribly wrong. Starting in January I started to feel genuinely unwell, on a regular basis. I cant really explain all my symptoms there were so many different sensations and feelings that were seemingly different daily. However the red flag was I was having blood pressure spikes from really high, to very low back to back. I never had any blood pressure issues so this was a concern that led me to see a cardiologist. Upon tons of testing the cardio MD felt that something was telling my otherwise very healthy heart to do this and I should see a endocrinologist. (thank goodness for him) I contacted my endo and let him know.... the testing began. I did every test: the midnightcortisol saliva test, dex suppression, 24 hr urine test, CRH stimulation testing. And I did them more than once. Each time it was a different response either, inconclusive, normal high, or high. I was then referred to the head of the Cleveland clinics pituitary department Dr. Kennedy. He said he is having a hard time believing when he looks at me that its Cushing's. However all my labs say it is. I will say I do fit the mold of PCOS to a tee- which symptoms of that do coincide with Cushing's but he still said we have to be sure its Cushing's. To add to the mix I did have a normal MRI as well. Dr. Kennedy started me on a 2 week midnight cortisol saliva test- Upon completion we noted levels of cortisol all over the place, some Normal, normal on high range, high, and really high. He confirmed with all the other tests this is Cushing's. Now we are trying to figure out what is next.... and where is this damn little tumor at. he feels that it is most likely in the pituitary from my test results, but we still are not ruling out else where. He is thinking that the next step would be exploratory neurosurgery or the IPSS. I'm not sure what to think of all this, except I want to hope for the best like everyone- and just be cured!! On a side note during all of this I also had episodes of severe pain in my chest and nausea. I went to see a GI who did an upper endo scope. They found I had eosinpphilic esophagitis. I also have never had any GI problems until now; and they came on suddenly. Im also having pain in my pancreas area- not sure if any of the two are related at all to Cushing's. But once again I was fine until recently with all these issues at once it seems. wish me luck on further testing, treatment, and ultimately a CURE!! Michelle was our guest in an interview on BlogTalk Radio Wednesday, May 13, 2015. The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. There are currently 83 other past interviews for your listening pleasure! HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio
  13. I first became aware of Bill on November 6, but now that I know about him, I am pretty sure he officially arrived during the summer of 2012. Since then, I suffered from depression, acne, menstrual problems, 30lb weight gain (while training for a marathon), and high blood pressure. Best of all, Bill has taken up residence on the back of my neck and created a little colony on my belly too. I always been pretty healthy (except for hypothyroidism) but in the last year, I had seen several different doctors for all of the weird things that have been happening to me. A gynecologist and dermatologist both suggested my menstrual and acne problems were likely hormonal and happening because I was probably going through perimenopause (I was 40 at the time). A psychiatrist put me on Effexor for depression and a beta-blocker for anxiety (I jump a foot when the phone would ring or someone would knock on my office door). All of these treatments seemed completely reasonable to me and they helped. It never occurred to me or anyone else they could be related. And all potentially explained why I kept gaining weight, despite not changing my diet and exercise (5-6 days a week) regime. Who knew hitting your 40s was going to be this rough? I started to really slow down on my runs - 2 to 3 minutes per mile slower than before. Maybe it was the weight gain that was making running harder, maybe it was the unusually hot and humid summer. I kept waiting for my running to get back to normal. But it never did. Every day it was a struggle to run. It was something I used to love so much - it was my way of working through stress. Now, it just made me feel bad. When I went to my regular endocrinologist in July for my annual thyroid check-up, he discovered my TSH was "way off" - and a little light went on. That's why I felt so crappy this year! I recounted my symptoms to Endo 1 (whom I had been seeing for 7 years). He thought I must be "very sensitive" to changes in hormones to have such a large reaction to the drop in TSH but hey, you never know. My Synthroid does was adjusted and I kept waiting to feel better. But I just kept getting worse. At my follow-up appointment in October, Endo 1 (who was with a medical student) told me my hormone levels were perfect and my face fell. He said I looked like I wanted a different answer. I explained that I felt worse and was having very troubling symptoms now. I run the week before and two miles in developed an excruciating headache, blurry vision and unsteadiness that stopped me in my tracks. I had to sit down for 30 minutes before the symptoms subsided and I could walk back to my car. I haven't run since. He started standing up, with the medical student in tow, and told me "this is not an endocrine problem - you should talk to your PCP and go see a cardiologist." That was that. I found a great cardiologist that deals with athletes, Dr. B. I was supposed to run the Philly marathon in November and so I tried to get his nurse to squeeze me onto his schedule in early November so I could figure out if there was something wrong with my heart. I had a stress test at his lab which came out completely normal. However, my blood pressure was very high. He told me that my heart was fine but something was very wrong for my blood pressure to be so high. I had mentioned to him that I had high BP readings at the various doctor's offices I had visited over the year - but I was always told "you are young and healthy, your BP is just high because you are in seeing the doctor today" (which for the record is ridiculous - it is hard to stress me out and a visit to the doctor is certainly not enough to do it). After reviewing my records and giving me a physical exam, he came back and told me he suspected I had Cushing's. He started some lab work to try and test for it too - two 24 hour UFC's and a dexamethasone suppression test. I had never heard of Cushing's, but my symptoms fit to a T. And as I read about "buffalo humps" and reached up to feel my neck, I realized I had known about Bill for some time. The cardiologist was so wonderful. He told me. "This is an endocrine issue, not a cardiac issue. But I am going to keep seeing you until you are better and I am going to help you navigate through the system." I felt very happy and relieved when I left his office. There was something wrong and it had a name. Now, I would just have a couple of tests, see my endocrinologist and go back to my normal life. If only life were so easy....
  14. MaryO

    Welcome, Guests!

    This is a return of Guest Forum. Non-members will get a feel for how supportive and informative these boards can be. The Guest Forum is public - visible to anyone. How it works: This area is moderated and all guest posts must be approved before they show up. Please be patient. Guests may ask questions by starting a new post but they may not respond unless they become members. Posts that are not Cushings-related will be deleted. HTML code, links and images will not work here. Popular topics may be moved to an appropriate members-only topic. Thanks!
  15. 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
  16. Guest

    Altered circadian rhythm?

    Hi all, I hope you can help me out with this. I've been gaining weight for the last 3 years, over 100 pounds, going from underweight who could not gain muscles to obese who can't lose fat. This weight was not gained steadily, but in bursts of usually 20 pounds in three week periods. Sometimes there is also weightloss, but the trend is weight gain. I have developed several wide striae in the belly, back, around the nipples, under the arms and in the buttocks, purple in the beginning but light color as of late. The bottom of my belly has more striae area than normal tissue. Memory is severely impaired. Body temperature is usually below 96F. My sleep patterns are now usually inverted, it's nearly impossible for me to keep myself awaken during the morning and nearly impossible to be asleep during dawn. Blood pressure is usually 16x10 without response to any medicine given to me, butin some crises it went to as high as 20x15. I also have a rapid heart rate (110 bpm usually), severe fatigue and short breath most of the time. Have been tested for Cushing's. Three UFCs scored 188, 311 and 358 (microgram per liter. Lab range is 28 to 213 - chemoluminescence - which I would like you to comment on). Basal fasting serum cortisol at 8:00 AM always low. Five tests scoring between 0.7 and 3.2 and one at 6.2 (lab range 4-22 mgL). Serum vitamin D scored 7, then 28 after 10000UI per day for two months and then 20 (lab range over 30 for normal and under 20 for deficiency) after spending a month in the tropics, taking sunbaths everyday. I also have low FSH, low LH and low GH. As the suspicions were high, I've had both adrenal and pituitary MRIs, both normal. I have recently been dignosed with IBS and duodenal mucosa atrophy, however treatments are not working well and are only aggravating my several food intolerances. Any ideas? Could it be any other thing? May it be that they have not seen something on the MRIs? Thanks in advance.
  17. Support Cushing's ...With A Click. From Corcept, the makers of Korlym: They say: "Corcept Therapeutics will donate $5 for every person who clicks to support people with Cushing's. Corcept has jump-started the effort to build awareness and support with a $15,000 contribution to provide support through the Cushing's Support and Research Foundation and Cushing's Help. With your support, we can aim even higher!* Take part...and spread the word. *Donations up to $30,000. Program ends April 20, 2012" Click here to make a difference!
  18. Do you blog? Want to get started? Since April 8 is Cushing's Awareness Day, several people got their heads together to create this blogging challenge. All you have to do is blog about something Cushing's related for the 30 days of April. Robin designed 3 versions of our "official logo" to put on your blogs. Please note that these are thumbnails - the actual image is larger than shown here. Click on the images to view actual size. If your blog wants you to upload an image from your desktop, right-click on the image 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 Small. If your blog asks you to enter the URL, use this: http://www.cushings-...ysBlogSmall.png Medium. If your blog asks you to enter the URL, use this: http://www.cushings-...DaysBlogMed.png or Large. If your blog asks you to enter the URL, use this: http://www.cushings-...ysBlogLarge.png Please let me know the URL to your blog 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? 8. 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) Health Madlib Poem. Go to : http://languageisavi...-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it? 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. Madlib Poem: Your Poem www.languageisavirus.com 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?
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