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Showing content with the highest reputation since 09/24/2017 in all areas

  1. 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/
  2. 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/
  3. 1 point
    Transsphenoidal Surgery Is Safe and Effective Treatment for Cushing’s Disease Surgical removal of tumors in the pituitary gland of the brain remains the gold standard for Cushing’s disease treatment. Transsphenoidal surgery (TSS) usually leads to good remission rates ranging from 68-95%, depending on the location and type of tumor, the neurosurgeon’s expertise, follow-up period, and the definition of remission. Today, TSS consists of surgery directed through the nose to get to the bottom of the skull, where the pituitary gland is located. The tumor is reached via the nasal cavity with no need for incisions on the face. https://cushieblog.com/2018/07/28/transsphenoidal-surgery-is-safe-and-effective-treatment-for-cushings-disease/
  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
    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/
  6. 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/
  7. 1 point
    Read all the blog posts here, on the right side. It would be great to share some (ALL?) on Twitter, Facebook, wherever to get the word out even further.
  8. 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!
  9. 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.
  10. 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!
  11. 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…?
  12. 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.
  13. 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
  14. 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/
  15. 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/
  16. 1 point
    Benefits of Medication Before Surgery for Cushing’s Syndrome Still Unclear https://t.co/NPBQ9HJP20
  17. 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!
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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!
  23. 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?
  24. 1 point
    Hi, Amy - I had most of the same symptoms as you but I was always "chunky". I thought I was pregnant when I noticed my first symptom - loss of my periods. Even though I was faithfully working out most days at my gym and was on track with my foods with Weight Watchers, I gained weight. And tired/exhaustion/fatigue was with me daily. It took about 5 years for a diagnosis. My whole bio is here (although it needs an update): https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/ Why not join these boards so you can read everything we've written about the symptoms you're experiencing now? Best of luck to you!
  25. 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
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