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  4. I think I knew this already but it's still hard to read in print Functional remission did not occur in most patients with Cushing syndrome who were considered to be in biochemical and clinical remission, according to a study published in Endocrine. This was evidenced by their quality of life, which remained impaired in all domains. The term “functional remission” is a psychiatric concept that is defined as an “association of clinical remission and a recovery of social, professional, and personal levels of functioning.” In this observational study, investigators sought to determine the specific weight of psychological (anxiety and mood, coping, self-esteem) determinants of quality of life in patients with Cushing syndrome who were considered to be in clinical remission. The cohort included 63 patients with hypercortisolism currently in remission who completed self-administered questionnaires that included quality of life (WHOQoL-BREF and Cushing QoL), depression, anxiety, self-esteem, body image, and coping scales. At a median of 3 years since remission, participants had a significantly lower quality of life and body satisfaction score compared with the general population and patients with chronic diseases. Of the cohort, 39 patients (61.9%) reported having low or very low self-esteem, while 16 (25.4%) had high or very high self-esteem. Depression and anxiety were seen in nearly half of the patients and they were more depressed than the general population. In addition, 42.9% of patients still needed working arrangements, while 19% had a disability or cessation of work. Investigators wrote, “This impaired quality of life is strongly correlated to neurocognitive damage, and especially depression, a condition that is frequently confounded with the poor general condition owing to the decreased levels of cortisol. A psychiatric consultation should thus be systematically advised, and [selective serotonin reuptake inhibitor] therapy should be discussed.” Reference Vermalle M, Alessandrini M, Graillon T, et al. Lack of functional remission in Cushing's Syndrome [published online July 17, 2018]. Endocrine. doi:10.1007/s12020-018-1664-7 From https://www.endocrinologyadvisor.com/general-endocrinology/functional-remission-quality-of-life-cushings-syndrome/article/788501/
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  6. Shaw

    So many symptoms could it be?

    I never had a hump but still had Cushing's. Unfortunately your symptoms (and most Cushing's symptoms) can also be caused by other medical conditions so it's important to test everything and if you're concerned about Cushing's I would do some cortisol testing if you haven't already. Have you done any 24 hour urinary free cortisol tests? or had your ACTH checked?
  7. Guest

    So many symptoms could it be?

    Ok I’m gonna try and make this quick a few months back I started just not feeling well I started to feel extremely tired all the time my periods started getting more and more irregular I developed horrible anxiety and depression to the point where I was having crying outbursts and did not wanna leave the house then before I new it I started having trouble with my legs they are weak they just hurt all the time!! Now my eye vision is terrible everything is blurry and I’m getting headaches I have also gained 30 pounds in just a few months for no apparent reason I eat healthy!!! Do not have that hump on my back so maybe it’s not Cushings syndome? Iv had all kinds of tests done and still no answers the only answer I got was I was starting menopause I was told this by my ob after blood work but I feel like it’s definitely something else going on I’m just so frustrated and tired of being sick!!! I’m looking for any insight thank you!!
  8. MaryO

    Lab work

    Unfortunately, this is one of the reasons it's so hard to diagnose Cushing's - far too many normal results and endos stop testing.
  9. Kenzi

    Lab work

    Thank you Mary! This helps my anxiety over results.
  10. MaryO

    Lab work

    I asked some of the other Cushies I know. One said: "I was dx with dex suppression test. Normal levels in AM, normal 24 hr urine."
  11. MaryO

    Lab work

    Absolutely! I had to do weeks and weeks of UFCs before I was finally diagnosed. Best of luck to you, Kenz. I hope you join the boards so you can get access to all the info and here.
  12. Guest

    Lab work

    I got my lab work done. I have all the symptoms of cushing’s Disease, from the buffalo hump and obesity to the easy bruising and the muscle weakness. My cortisol levels came back normal, and I haven’t gotten the results of my ACTH yet. Has anyone had normal cortisol levels come back and still had cushing’s Disease?
  13. Steve, Ectopic Bio

    Steve was undiagnosed for 12 years.  After a pituitary surgery, he turned out to have ectopic Cushing's in his right lung.

    Read more at https://cushingsbios.com/2018/08/05/steve-ectopic-bio/

  14. Night Cortisol Levels for Diagnosing Cushing’s Syndrome Less Accurate in Clinical Practice

    In healthy individuals, the levels of cortisol — a steroid hormone secreted by the adrenal glands — go through changes over a 24-hour period, with the lowest levels normally detected at night.

    But this circadian rhythm is disrupted in certain diseases such as Cushing’s syndrome, where night cortisol levels can be used as a diagnostic tool.

    Among the tests that can be used to detect these levels are late-night serum cortisol (LNSeC) and late-night salivary cortisol (LNSaC) tests. Since it uses saliva samples, LNSaC is more practical and does not require hospitalization, so it is often recommended for the diagnosis of Cushing’s syndrome.

    Read more at https://cushieblog.com/2018/08/05/night-cortisol-levels-for-diagnosing-cushings-syndrome-less-accurate-in-clinical-practice/

  15. Hi Sharon, I had all of that except for the nausea. The itching I had mostly at night and it woke me up. The flushing red face and chest and arms were the colour of lobster and then my face was the colour of red wine.
  16. 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/

  17. 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/

  18. 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/

  19.  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/

  20. 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/

  21. Cushings Help is almost 18!

    safe_image.php?d=AQAGvdTxDOKXN-rH&url=htIt'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/

  22. TOPICS TO BE DISCUSSED INCLUDE: HOW IMPORTANT IS THE TPO ANTIBODY IN THE DIAGNOSIS OF HYPOTHYROIDISM? WHAT DOES IT MEAN TO HAVE HASHIMOTO’S? WHICH THYROID MEDICINE IS THE BEST? WHAT IS THE DIFFERENCE BETWEEN DESICCATED THYROID AND SYNTHETIC THYROID HORMONES? WHAT ABOUT TAKING ONLY T3? IS RT3 IMPORTANT? IS DIET IMPORTANT IN PATIENTS WITH HYPOTHYROIDISM? SUNDAY • JULY 29TH • 6 PM PST Click here to join the meeting or https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m2b7d2348ee2683a5022761e3e5945087 OR Join by phone: (855) 797-9485 Meeting Number (Access Code): 287 970 949, Meeting Password: hormone Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button. For more information, email us at mail@goodhormonehealth.com.
  23. TOPICS TO BE DISCUSSED INCLUDE: HOW IMPORTANT IS THE TPO ANTIBODY IN THE DIAGNOSIS OF HYPOTHYROIDISM? WHAT DOES IT MEAN TO HAVE HASHIMOTO’S? WHICH THYROID MEDICINE IS THE BEST? WHAT IS THE DIFFERENCE BETWEEN DESICCATED THYROID AND SYNTHETIC THYROID HORMONES? WHAT ABOUT TAKING ONLY T3? IS RT3 IMPORTANT? IS DIET IMPORTANT IN PATIENTS WITH HYPOTHYROIDISM? SUNDAY • JULY 29TH • 6 PM PST Click here to join the meeting or https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m2b7d2348ee2683a5022761e3e5945087 OR Join by phone: (855) 797-9485 Meeting Number (Access Code): 287 970 949, Meeting Password: hormone Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button. For more information, email us at mail@goodhormonehealth.com.
  24. until
    Presented by Eliza Geer, MD Medical director, Multidisciplinary Pituitary & Skull Base Tumor Center Associate Attending, Endocrine Service Memorial Sloan Kettering Cancer Center After registering you will receive a confirmation email with details about joining the webinar. Contact us at webinar@pituitary.org with any questions or suggestions. Date: Wednesday, July 18, 2018 Time: 10:00 AM - 11:00 AM Pacific Daylight Time 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description: Learning Objectives: Review Cushing’s disease treatment guidelines Evaluate currently available medical therapies for Cushing’s disease Discuss new therapies in clinical trials Presenter Bio: Dr. Geer is an endocrinologist who specializes in caring for people with pituitary and neuroendocrine diseases. She is the Medical Director of Memorial Sloan Kettering’s Multidisciplinary Pituitary & Skull Base Tumor Center, located at Memorial Hospital in Manhattan. Their multidisciplinary pituitary team provides personalized surgical and medical treatment for people with pituitary and skull base tumors, including prolactinomas, growth-hormone secreting adenomas (acromegaly), and Cushing’s disease. Their overall goal is to improve and advance the care of people with these conditions. Dr. Geer’s research interests focus on achieving a better understanding of how and why pituitary tumors develop, and characterizing long-term outcomes in patients with Cushing’s disease. She has conducted a number of studies investigating body composition, adipose tissue regulation, and appetite in patients with Cushing’s disease, and she is involved in clinical trials investigating new medical therapies for patients with Cushing’s and acromegaly. Dr. Geer completed her internship and residency at the NewYork-Presbyterian Hospital/Columbia Medical Center. She was a fellow in endocrinology and metabolism at the Icahn School of Medicine/Mount Sinai Medical Center, after which she was a member of the faculty for ten years. She is currently an associate professor of medicine and an active member of the Endocrine Society, the Pituitary Society, the Pituitary Network Association and the American Association of Clinical Endocrinologists.
  25. Presented by Eliza Geer, MD Medical director, Multidisciplinary Pituitary & Skull Base Tumor Center Associate Attending, Endocrine Service Memorial Sloan Kettering Cancer Center After registering you will receive a confirmation email with details about joining the webinar. Contact us at webinar@pituitary.org with any questions or suggestions. Date: Wednesday, July 18, 2018 Time: 10:00 AM - 11:00 AM Pacific Daylight Time 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description: Learning Objectives: Review Cushing’s disease treatment guidelines Evaluate currently available medical therapies for Cushing’s disease Discuss new therapies in clinical trials Presenter Bio: Dr. Geer is an endocrinologist who specializes in caring for people with pituitary and neuroendocrine diseases. She is the Medical Director of Memorial Sloan Kettering’s Multidisciplinary Pituitary & Skull Base Tumor Center, located at Memorial Hospital in Manhattan. Their multidisciplinary pituitary team provides personalized surgical and medical treatment for people with pituitary and skull base tumors, including prolactinomas, growth-hormone secreting adenomas (acromegaly), and Cushing’s disease. Their overall goal is to improve and advance the care of people with these conditions. Dr. Geer’s research interests focus on achieving a better understanding of how and why pituitary tumors develop, and characterizing long-term outcomes in patients with Cushing’s disease. She has conducted a number of studies investigating body composition, adipose tissue regulation, and appetite in patients with Cushing’s disease, and she is involved in clinical trials investigating new medical therapies for patients with Cushing’s and acromegaly. Dr. Geer completed her internship and residency at the NewYork-Presbyterian Hospital/Columbia Medical Center. She was a fellow in endocrinology and metabolism at the Icahn School of Medicine/Mount Sinai Medical Center, after which she was a member of the faculty for ten years. She is currently an associate professor of medicine and an active member of the Endocrine Society, the Pituitary Society, the Pituitary Network Association and the American Association of Clinical Endocrinologists.
  26. Updated: Is Your Doctor Being Paid to Prescribe Korlym?

    Top Doctors and Hospitals Receiving Payments From Corcept, makers of Korlym

    Read more at http://cushings.invisionzone.com/topic/54309-is-your-doctor-being-paid-to-prescribe-korlym/

  27. Cushing's Syndrome Eludes Treatment Paradigm or Standard Approach to Care

    Results of two systematic reviews indicate that while surgery is the preferred treatment, many patients present with contraindications without an accepted management paradigm leaving clinicians to follow a patient-centric approach to care.

    Read more at https://cushieblog.com/2018/07/07/cushings-syndrome-eludes-treatment-paradigm-or-standard-approach-to-care/

  28. In Memoriam: Kassey Whiterock
     
    Kassey passed away on June 30, 2016. Her sister said she died in her sleep. She was in the hospital due to a crisis on June 21st.
     
    Kassey was only 20 years old.
     
  29. Measuring TSH Levels Could Improve Diagnosis for Cushing’s Syndrome

    Measuring the variation in thyroid stimulating hormone blood levels between midnight and morning may be better for diagnosing Cushing’s syndrome than current approaches, a study suggests. 

    Read more at https://cushieblog.com/2018/06/30/measuring-tsh-levels-could-improve-diagnosis-for-cushings-syndrome/

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