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  1. 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.
  2. 1 point
    A long-time member of these boards, AutumnOMA , gave me permission to share info about these wonderful Cushing's Awareness Stickers she has made:
  3. 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!
  4. 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.
  5. 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…?
  6. 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.
  7. 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
  8. 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/
  9. 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/
  10. 1 point
    Benefits of Medication Before Surgery for Cushing’s Syndrome Still Unclear https://t.co/NPBQ9HJP20
  11. 1 point
    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!
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 1 point
    Hi, Jamie - I've read that Adderall can increase cortisol levels but I think that the adrenal hyperplasia is an issue apart from the cortisol increase. Will NIH be doing surgery on your adrenal glands?
  17. 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
  18. 1 point
    I have not been on these boards in a few years. My status is stable and now on daily Cortef replacement due to stressful divorce, hypothyroid, hypopituitary....God Bless Dr F. who keeps me living my best quality of life. I never thought every day would be a new science experiment....but.....at least I'm 18 years post adrenalectomy / coma and 10 years post thyroidectomy and still enjoying life and family! Thank you Mary for these boards which back in 2000 were the only source of support and education there was for a patient like me. I joined them in 2000 and again in 2004. I will always be grateful for the sense of normalcy and belonging I found on this web site. I work from home now and have a great life! To all of you just starting the journey......DONT GIVE UP....LIFE IS WORTH LIVING AND YOU MATTER...With the right Drs on your team and these boards you can live your best life. Educate yourself and be proactive. Be strong and please don't be afraid to ask questions or ask for help......Blessings Lynn in Oregon
  19. 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.
  20. 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.
  21. 1 point
    I'm very new to this site, but one of the first things I did was read through your story. It's inspiring to see how many people's lives you touched, and heartbreaking to read through what happened during your last few months. I hope you are at peace, and I wish you a very happy birthday!
  22. 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.
  23. 1 point
    Join Dr. Theodore Friedman for an informative webinar on the endocrine causes of hair loss in women. Dr. Friedman will discuss what hormones to measure if a woman is experiencing hair loss. He will discuss how to optimize hormone replacement to minimize or reverse hair loss. There will be plenty of time for questions and discussion. Sunday, July 16, 2017 at 5:00 pm Pacific Daylight Time, 8:00 pm Eastern Daylight Time Meeting number (access code): 808 128 401 Meeting password: hormones join the meeting at https://axisconciergemeetings.webex.com/mw3200/mywebex/default.do?service=1&siteurl=axisconciergemeetings&nomenu=true&main_url=%2Fmc3200%2Fe.do%3Fsiteurl%3Daxisconciergemeetings%26AT%3DMI%26EventID%3D583868522%26UID%3D525323682%26Host%3DQUhTSwAAAATsvwywYnPCZRJiUTGsRUg9tMlkIE6AsJc9tWA1l5iNUcNIjAcQoJY9laE7PvDwuGAtsMXGl3eKVxm6fW9vPYdH0%26FrameSet%3D2%26MTID%3Dmca26ade7aeaea7bc942181139bf25a21 Join by phone Audio connection: +1-855-797-9485 US Toll free +1-415-655-0002 US Toll Global call-in numbers Show toll-free dialing restrictions Access code: 808 128 401 You can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat” and the video conference will be posted on goodhormonehealth.com a few days after. You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions. Dr. Friedman has been our guest four times on BlogTalkRadio. Listen to one of his past interviews here: http://www.blogtalkradio.com/cushingshelp/2012/04/03/dr-theodore-friedman-returns-for-his-fourth-interview
  24. 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…?
  25. 1 point
    I am looking for information about doctors wh specialize in Cushing's syndrome in Portland, OR or somewhere around Oregon or Washington. I am 99.99% sure I have Cyclical Cushing's and have had it for the last 16 years. I currently have to endocrinologists at OHSU even though they are great physicians they they are hesitant on diagnosing me with it they want me to have Gastric Bypass, they keep saying Cyclical Cushing's is too rare for me to have. I have had 3 episodes/cycles since I was 16 ... I match pretty much every and I mean every symptom of Cushing's I even have had two high 24 hour Urine Cortisol's, but they did not feel that it is enough to give me the diagnosis. I took in before and after pictures to show the progression of this over the years, I am currently on 700 + units of insulin a day(and my sugar levels still stay between 350-400 daily), 2550mg a day of metfomin, I have developed hypertension, low potassium, an extremely distended stomach (which is really hard on top) my legs and arms are thin, my face is ver, very round and gets red, I have no periods, My muscles are killing me along with my joints and the hump on the back of my neck between my shoulders is huge and is killing me, My ribs are hurting, I have insomnia, panic attacks almost daily, large pink/purple stretch marks, severe edema, severe daytime fatigue, forgetfulness, losing some cognitive skills, a continuous sinus headache, The pain is becoming unbearable in my joints, acne, losing hair, lots of facial hair on cheeks and chin, I am urinating non-stop, my muscles are extremely weak and it is becoming dfficult to walk because my ankles, knees and hips hurt so bad. I am having a hard time walking especially when it's on an incline. I keep stumbling and losing balance(this is recent). Each episode is worse then the one prior... This is my 3rd bout with this and it is awful... I am only 32 y/o and my doctors won't listen... my Endo's at OHSU keep saying eat less and will not refer me to another endo in the office who specializes in this. I have been emailing them, but now they won't even reply, they keep telling me to excersize more, but I can't because it is so painful and I am so tired. Can someone please tell me of other doctors they have seen that heloped them get a final diagnosis? I did have dexamethsone, and ACTH don, but they were normal... I really want an MRI, ultrsound and CAT scan done. I have great insurance, but I feel like I am getting 3rd world care and being passed of as a crazy person. Thank you for any help!
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