I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery.  I fell and cracked the back of my head on the curved edge of a table in the dining area.  I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery, I got some morphine.

Read more at https://cushings.invisionzone.com/topic/56890-day-28-cushing%E2%80%99s-awareness-challenge-2022/

Blood tests and an MRI finally confirmed the doctor’s suspicion: Yawn had a tumor in her pituitary gland — a pea-size organ at the base of the brain — that was causing the gland to release too much adrenocorticotropic hormone. That, in turn, flooded her body with cortisol, a steroid hormone that’s normally released in response to stress or danger. The resulting condition is called Cushing disease.

Read more at https://cushings.invisionzone.com/topic/56889-media-attention-cushings-on-today/

The most common cause of Cushing syndrome (CS) is exposure to exogenous glucocorticoids. There is an increasing incidence of adulterated over-the-counter (OTC) supplements containing steroids.

Read more at https://cushings.invisionzone.com/topic/57624-exogenous-cushing-syndrome-and-hip-fracture-due-to-over-the-counter-supplement-artri-king/

Patients with neuroendocrine tumors before ectopic Cushing syndrome development were more likely metastatic and had worse survival

Read more at https://cushings.invisionzone.com/topic/56894-management-of-adrenocorticotropic-hormone-secreting-neuroendocrine-tumors-and-the-role-of-bilateral-adrenalectomy-in-ectopic-cushing-syndrome/

The higher IGF-1 index was independently associated with lower prevalence of low bone mass in young CD patients, and IGF-1 might play an important role in the pathogenesis of CD-caused low bone mass.

Read more at https://cushings.invisionzone.com/topic/57619-association-of-igf-1-level-with-low-bone-mass-in-young-patients-with-cushing%E2%80%99s-disease/

Ectopic Cushing’s syndrome due to metastatic neuroendocrine small-cell carcinoma is a rare condition with a poor prognosis. The options for treatment are few and not necessarily curative. There needs to be increased awareness of this serious and rare complication. Managing the condition can be a challenge and requires a multidisciplinary team approach to improve outcomes.

Read more at https://cushings.invisionzone.com/topic/57577-recurrent-neuroendocrine-tumor-of-the-cervix-presenting-with-ectopic-cushing%E2%80%99s-syndrome/

Cushing’s disease is a progressive pituitary disorder in which there is an excess of cortisol in the body. While the disease can be treated surgically, this option is not possible for all patients. This is one of the approved medications that assist in controlling cortisol levels in people with Cushing’s disease.

Recorlev was approved by the FDA in December 2021 to treat those Cushing’s patients for whom surgery is not a choice or has failed to lower cortisol levels.

Read more at https://cushings.invisionzone.com/topic/56549-meds-recorlev/

…particular, Helton has made contact with Dr. Karen Thames from Chicago. She has been diagnosed with Cushing’s and is working on a documentary called…

Read more at http://cushingsbios.com/2015/04/29/surviving-cushings-area-woman-hit-by-rare-disease/

Clinical trial analyses focus on the human body’s homeostatic response to potent HSD-1 inhibition by SPI-62.

Results highlight that urinary free cortisol is distinct from intracellular cortisol that causes symptoms in patients with Cushing’s syndrome or autonomous cortisol secretion.

Read more at https://cushings.invisionzone.com/topic/56920-sparrow-pharmaceuticals-presents-new-clinical-trial-data-analyses-on-hsd-1-inhibitor-spi-62-at-the-24th-european-congress-of-endocrinology/

Only 4.8% of patients with adrenal insufficiency who use medical identification jewelry clearly indicate on their emblem the need for urgent parenteral hydrocortisone in the event of an adrenal crisis, potentially jeopardizing the ability to receive proper assistance in an emergency, according to a cross-sectional analysis published in Clinical Endocrinology.

“Although the use of medical identification jewelry is recommended for patients with adrenal insufficiency to assist in the prevention and treatment of an adrenal crisis, the results of this study indicate that this advice is taken up by only a modest proportion of patients,” R. Louise Rushworth, MBBS, PhD, FAFPHM, an adjunct professor and medical epidemiologist at the School of Medicine, Sydney, and the University of Notre Dame Australia, told Endocrine Today. “Patients with secondary adrenal insufficiency have a lower uptake than those with primary adrenal insufficiency despite their risk of an adrenal crisis approaching that people with primary adrenal insufficiency.”

Read more at https://cushieblog.com/2019/04/28/medical-id-jewelry-often-lacks-clear-instructions-for-adrenal-insufficiency/

In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…”

I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.

Read more at https://cushings.invisionzone.com/topic/56891-day-29-cushing%E2%80%99s-awareness-challenge-2022/

 I was amazed to make it through the entire weekend with no Adrafinil – sadly, there’s nowhere to get it anymore.  I carried extra cortisol, just in case.  And slept all the way home on the train.

Read more at https://cushieblogger.com/2018/04/29/day-29-cushings-awareness-challenge-2018/

Laparoscopic adrenalectomy is the standard treatment for adrenal tumors caused by Cushing's syndrome. However, few pregnant women have undergone adrenalectomy because of the risk of general anesthesia and surgery.

Read more at https://cushings.invisionzone.com/topic/57639-cushings-syndrome-in-pregnancy-in-which-laparoscopic-adrenalectomy-was-safely-performed-by-a-retroperitoneal-approach/

While many patients with Cushing syndrome have a delayed diagnosis, this case highlights the critical need to increase awareness of the signs and symptoms of hypercortisolism and to improve the understanding of appropriate screening tests among nonendocrine providers.

Read more at https://cushings.invisionzone.com/topic/57707-delayed-diagnosis-of-ectopic-cushing-syndrome/

The most common cause of Cushing syndrome (CS) is exposure to exogenous glucocorticoids. There is an increasing incidence of adulterated over-the-counter (OTC) supplements containing steroids.

Read more at https://cushings.invisionzone.com/topic/57624-exogenous-cushing-syndrome-and-hip-fracture-due-to-over-the-counter-supplement-artri-king/

Patients with neuroendocrine tumors before ectopic Cushing syndrome development were more likely metastatic and had worse survival

Read more at https://cushings.invisionzone.com/topic/56894-management-of-adrenocorticotropic-hormone-secreting-neuroendocrine-tumors-and-the-role-of-bilateral-adrenalectomy-in-ectopic-cushing-syndrome/

The higher IGF-1 index was independently associated with lower prevalence of low bone mass in young CD patients, and IGF-1 might play an important role in the pathogenesis of CD-caused low bone mass.

Read more at https://cushings.invisionzone.com/topic/57619-association-of-igf-1-level-with-low-bone-mass-in-young-patients-with-cushing%E2%80%99s-disease/

Ectopic Cushing’s syndrome due to metastatic neuroendocrine small-cell carcinoma is a rare condition with a poor prognosis. The options for treatment are few and not necessarily curative. There needs to be increased awareness of this serious and rare complication. Managing the condition can be a challenge and requires a multidisciplinary team approach to improve outcomes.

Read more at https://cushings.invisionzone.com/topic/57577-recurrent-neuroendocrine-tumor-of-the-cervix-presenting-with-ectopic-cushing%E2%80%99s-syndrome/

Like most everything else in my life, having had Cushing's (pituitary) made this surgery more difficult.  My surgeon had to plan with my endocrinologist how much cortisol I'd need during the operation, then I had to stay overnight to get me successfully weaned off the cortisone again.

Read more at https://cushings.invisionzone.com/topic/57682-what-was-the-most-memorable-thing-that-happened-to-you-last-year/

Katie’s short bio: Symptoms started in 2002 at age 22, or before. Jan. 2008 – 2 mm. area of differential enhancement on right pituitary and 11 mm. pineal cyst identified by MRI Jan. 2008 – DX – hypothalamic amenorrhea Mar. 2008 – DX – pituitary adenoma, hypogonadism – female.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/07/24/interview-with-katie-kvb927

Seliciclib (R-roscovitine) has been shown in preclinical studies to inhibit neoplastic corticotroph proliferation and the production of adrenocorticotropic hormone (ACTH) in the pituitary gland. Therefore, for a study, researchers sought to investigate the effectiveness of seliciclib as a pituitary-targeting treatment for patients with Cushing’s disease (CD).

Read more at https://cushings.invisionzone.com/topic/57604-seliciclib-for-the-treatment-of-cushing%E2%80%99s-disease-targeting-pituitary/

Cushing’s syndrome (CS) secondary to ectopic adrenocorticotrophic hormone (ACTH)-producing prostate cancer is rare with less than 50 cases reported. The diagnosis can be challenging due to atypical and variable clinical presentations of this uncommon source of ectopic ACTH secretion.

Read more at https://cushings.invisionzone.com/topic/56892-challenging-case-of-ectopic-acth-secretion-from-prostate-adenocarcinoma/

The Add Your Bio form has been updated so that it no longer requires Flash. Your information will help others.

I would like to add that if anyone would like to do something for the Cushing's Awareness Challenge but you don't have (or want to have) a blog, why not consider adding your bio to the website this month?

More info at https://cushingsbios.com/2018/08/28/we-have-a-new-bio-form/

Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…

Read more at https://cushings.invisionzone.com/topic/56893-day-30-cushing%E2%80%99s-awareness-challenge-2022/

When I suggested cushings to my GP early this year, after stumbling upon info online, and linking the purple stretch marks, high blood pressure, weight gain, brain fog etc... I was told by the GP that cushings was EXTREMELY rare, and most often 'only diagnosed in children'. I fell apart and I felt defeated after genuinely thinking there might have been light at the end of the tunnel. But I insisted that I have some kind of test for peace of mind...

Read more at https://cushings.invisionzone.com/topic/56921-how-do-we-cope-with-uncertainty-during-testing/

The most common cause of Cushing syndrome (CS) is exposure to exogenous glucocorticoids. There is an increasing incidence of adulterated over-the-counter (OTC) supplements containing steroids.

Read more at https://cushings.invisionzone.com/topic/57624-exogenous-cushing-syndrome-and-hip-fracture-due-to-over-the-counter-supplement-artri-king/

Since I just had Mohs surgery for squamous cell carcinoma, I immediately went to amazon to search for nicotinamide.

Read more at https://maryomedical.com/2021/05/30/testing-vitamin-b3/

Patients with neuroendocrine tumors before ectopic Cushing syndrome development were more likely metastatic and had worse survival

Read more at https://cushings.invisionzone.com/topic/56894-management-of-adrenocorticotropic-hormone-secreting-neuroendocrine-tumors-and-the-role-of-bilateral-adrenalectomy-in-ectopic-cushing-syndrome/

The higher IGF-1 index was independently associated with lower prevalence of low bone mass in young CD patients, and IGF-1 might play an important role in the pathogenesis of CD-caused low bone mass.

Read more at https://cushings.invisionzone.com/topic/57619-association-of-igf-1-level-with-low-bone-mass-in-young-patients-with-cushing%E2%80%99s-disease/

Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…

To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year.

Read more at https://cushieblogger.com/2020/04/30/day-30-cushings-awareness-challenge-2020/

hello,i found your story while researching gip induced cushings. your story was very touching to me. i am sorry you had to endure all this. it is so completely frusterating when the doctors dont understand .i was recently diagnosed with subclinical cushings but now have more tests confirming high cortisol. i have bilateral tumors causing mine. although recently my symptoms have increased. i am barely able to eat anything without stomach pain and upset. my list of foods that i can eat is becoming increasing small. your story and symptoms of the pain and stomach swelling is the same. sadly also my 13 year old daughter is starting to develop food insensitivities and food intolerances...

Read more at https://cushingsbios.com/2013/06/23/magdalena-food-dependent-cushings-bio/

Ectopic Cushing’s syndrome due to metastatic neuroendocrine small-cell carcinoma is a rare condition with a poor prognosis. The options for treatment are few and not necessarily curative. There needs to be increased awareness of this serious and rare complication. Managing the condition can be a challenge and requires a multidisciplinary team approach to improve outcomes.

Read more at https://cushings.invisionzone.com/topic/57577-recurrent-neuroendocrine-tumor-of-the-cervix-presenting-with-ectopic-cushing%E2%80%99s-syndrome/

There are several home cortisol tests available to purchase over the counter or online. These allow a person to take a sample of blood, urine, or saliva before sending it off for analysis.

After taking a home cortisol test, people can usually receive their results within 2–5 days online or via a telephone call with a healthcare professional.

However, there are currently no studies investigating the reliability of these home cortisol tests. Therefore, people should follow up on their test results with a healthcare professional.

Read more at https://cushings.invisionzone.com/topic/55639-home-cortisol-tests-3-of-the-best/

Assessment of late-night salivary cortisol (LNSC) levels is a poor diagnostic tool for detecting Cushing’s disease in obese patients, a new study from Germany shows.

The test demonstrated a particularly poor sensitivity in obese people, meaning it will often suggest a patient has Cushing’s disease when that is not the case — called a false-positive...

Read more at https://cushieblog.com/2018/03/30/late-night-salivary-cortisol-a-poor-approach-for-detecting-cushings-in-obese-patients/

Herein, national data of the clinical experience on paediatric CD have been presented. Our findings highlight that presenting complaints may be subtle in children, the sensitivities of the diagnostic tests are very variable and require a careful interpretation, and MRI fails to detect adenoma in approximately one-third of cases. Finally, clinicians should be aware of the recurrence of the disease during the follow-up after surgery.

Read more at https://cushings.invisionzone.com/topic/57658-clinical-features-diagnosis-and-treatment-outcomes-of-cushings-disease-in-children-a-multicenter-study/

Part 1. Robin and MaryO discussed the role of blogs in helping to spread the word about Cushing’s. They also discussed popular doctor blogs and other topics of interest to Cushing’s Patients.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/08/21/tentative-interview-with-joselle

Part 2.  Robin and MaryO discuss the role of blogs in helping to spread the word about Cushing’s. They also discuss popular doctor blogs and other topics of interest to Cushing’s Patients, friends and family.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/09/25/robin-staticnrg-and-mary-oconnor-maryo-discuss-spreading-the-word-about-cushings-part-2

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/2022/05/01/in-memory-of-kathryn-mcbride-bridie-miller-may-1-2007-2/

“In general, cortisol levels tend to peak in the late morning and gradually decline throughout the day,” he explains. “When a stressful event occurs, the increased cortisol will work alongside our ‘fight or flight’ mechanisms to either upregulate or downregulate bodily functions. [Affected systems include] the central nervous system, cardiovascular system, gastrointestinal system, or immune system.”

Read more at https://cushings.invisionzone.com/topic/57552-basics-what-causes-abnormal-cortisol-levels/

The most common cause of Cushing syndrome (CS) is exposure to exogenous glucocorticoids. There is an increasing incidence of adulterated over-the-counter (OTC) supplements containing steroids.

Read more at https://cushings.invisionzone.com/topic/57624-exogenous-cushing-syndrome-and-hip-fracture-due-to-over-the-counter-supplement-artri-king/

Patients with neuroendocrine tumors before ectopic Cushing syndrome development were more likely metastatic and had worse survival

Read more at https://cushings.invisionzone.com/topic/56894-management-of-adrenocorticotropic-hormone-secreting-neuroendocrine-tumors-and-the-role-of-bilateral-adrenalectomy-in-ectopic-cushing-syndrome/

The higher IGF-1 index was independently associated with lower prevalence of low bone mass in young CD patients, and IGF-1 might play an important role in the pathogenesis of CD-caused low bone mass.

Read more at https://cushings.invisionzone.com/topic/57619-association-of-igf-1-level-with-low-bone-mass-in-young-patients-with-cushing%E2%80%99s-disease/

Ectopic Cushing’s syndrome due to metastatic neuroendocrine small-cell carcinoma is a rare condition with a poor prognosis. The options for treatment are few and not necessarily curative. There needs to be increased awareness of this serious and rare complication. Managing the condition can be a challenge and requires a multidisciplinary team approach to improve outcomes.

Read more at https://cushings.invisionzone.com/topic/57577-recurrent-neuroendocrine-tumor-of-the-cervix-presenting-with-ectopic-cushing%E2%80%99s-syndrome/

While American actress Amy Schumer is spreading the word about Cushing’s in general, I think that in some ways she is hurting things for everyone else.  CBS News reports that “she says she now feels ‘reborn’ after her diagnosis, and while some forms of Cushing can be fatal, she has a type that ‘will just work itself out.’”

How many others will try to get diagnosed and only be told not to worry, that it “will just work itself out”?

Read more at https://cushings.invisionzone.com/topic/56733-day-1-cushings-awareness-challenge-2022/?do=findComment&comment=478703

Key takeaways:

• Cushing’s syndrome symptoms moderately impact quality of life for adults with the condition.
• Weight gain, muscle fatigue and menstrual changes decline in severity from diagnosis to follow-up.

Read more at https://cushings.invisionzone.com/topic/57630-adults-with-cushing%E2%80%99s-syndrome-report-high-burden-of-illness-despite-ongoing-treatment/

We report a case of a recently diagnosed adrenocorticotropic hormone (ACTH)-dependent Cushing's syndrome in a 30-years-old female who presented initially with a three-month history of progressive weight gain, generalized weakness, acne, menstrual irregularity, and severe hypokalemia, and then developed a gastric ulcer perforation only one month after her ACTH-dependent Cushing's syndrome diagnosis and was managed through emergent surgery.

Read more at https://cushings.invisionzone.com/topic/57659-adrenocorticotropic-hormone-dependent-cushings-syndrome-complicated-with-gastric-ulcer-perforation-in-a-30-year-old-saudi-female/

Surgery beyond the age of 75, mainly relying on an endoscopic endonasal transsellar approach, is effective and safe, provided that patients are managed in tertiary centers.

Read more at https://cushings.invisionzone.com/topic/57640-pituitary-surgery-outcome-in-patients-75%C2%A0years-and-older/

Has your doctor ever tried to dissuade you from using an alternative treatment?

Read more at https://cushings.invisionzone.com/topic/57567-what-do-you-think-alternative-treatments/

.The EPIC Foundation would like to recognize Mary Kelly O’Connor as a pioneer in the Cushing’s community as an advocate and life changer! Mary Kelly O’Connor is Person of the Month for May, 2018!...

Mary O wants to support, educate, and share! She has been able to provide support to an entire community of people on her own and with very little funding. She puts her heart and soul into this work because she cares deeply about this community! Mary O has been able to turn her adversity into an opportunity to walk in her purpose to change lives!

Mary Kelly O’Connor is definitely someone you should know! The EPIC Foundation proudly works in alliance with Mary Kelly O’Connor the founder of Cushing’s Help, a foundation dedicated to giving Cushing’s patients valuable information, a space to share their stories, and a place to connect with one another. To learn more information about Mary O and her work, you can go to her website at http://cushings-help.com/ Together, We are EPIC!

Read more at https://cushieblogger.com/2018/05/01/mary-kelly-oconnor-person-of-the-month-may-2018/

May 2, 2002

From the Message Boards: ” I loved her, she was a great friend. She died of adrenal cortical carcinoma.”

Read more at https://cushingsbios.com/2022/05/02/in-memory-of-patti-may-2-2002-3/

In patients diagnosed with the disease yet who had inconclusive MRI results, PET/MRI was positive in 100% of cases, noted lead author Ilanah Pruis, a doctoral student at Erasmus University Medical Center in Rotterdam, Netherlands.

“This multimodal imaging technique provides a welcome improvement for diagnosis, planning of surgery, and clinical outcome in patients with Cushing disease,” the authors wrote.

Read more at https://cushings.invisionzone.com/topic/57709-petmri-may-improve-diagnosis-of-cushing-disease/

Patients with Cushing’s disease (CD) experienced transient central adrenal insufficiency (CAI) after successful surgery. However, the reported recovery time of hypothalamic-pituitary-adrenal (HPA) axis varied and the risk factors which could affect recovery time of HPA axis had not been extensively studied. This study aimed to analyze the duration of CAI and explore the risk factors affecting HPA axis recovery in post-operative CD patients with biochemical remission.

Read more at https://cushings.invisionzone.com/topic/57581-preop-tt3-predicts-hpa-axis-recovery-after-cushing-surgery/

Cushing's syndrome is a rare cause of myocardial infarction and heart failure. Herein, we report a female patient who presented acute myocardial infarction and heart failure with reduced ejection fraction. The patient was found to have hypercortisolism secondary to adrenocortical adenoma and responded well to therapy. This case underlines the effects of hypercortisolism on the cardiovascular system. The clinical presentation of this patient is unique because non-atherosclerotic myocardial infarction is rarely reported in Cushing's syndrome patients.

Read more at https://cushings.invisionzone.com/topic/57660-cushings-syndrome-presenting-as-non-atherosclerotic-myocardial-infarction-and-heart-failure/

The most common cause of Cushing syndrome (CS) is exposure to exogenous glucocorticoids. There is an increasing incidence of adulterated over-the-counter (OTC) supplements containing steroids.

Read more at https://cushings.invisionzone.com/topic/57624-exogenous-cushing-syndrome-and-hip-fracture-due-to-over-the-counter-supplement-artri-king/

Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”

Read more at https://cushieblogger.com/2021/04/04/cushings-myths-and-facts-cushings-is-rare-no-one-has-cushings-3/

Patients with neuroendocrine tumors before ectopic Cushing syndrome development were more likely metastatic and had worse survival

Read more at https://cushings.invisionzone.com/topic/56894-management-of-adrenocorticotropic-hormone-secreting-neuroendocrine-tumors-and-the-role-of-bilateral-adrenalectomy-in-ectopic-cushing-syndrome/

The higher IGF-1 index was independently associated with lower prevalence of low bone mass in young CD patients, and IGF-1 might play an important role in the pathogenesis of CD-caused low bone mass.

Read more at https://cushings.invisionzone.com/topic/57619-association-of-igf-1-level-with-low-bone-mass-in-young-patients-with-cushing%E2%80%99s-disease/

Even though this was from two years ago, I don't think that there have been any significant changes in the many symptoms of Cushing's. 

Today's News Item proclaimed loftily  

Quote

In patients diagnosed with the disease yet who had inconclusive MRI results, PET/MRI was positive in 100% of cases, noted lead author Ilanah Pruis, a doctoral student at Erasmus University Medical Center in Rotterdam, Netherlands.

“This multimodal imaging technique provides a welcome improvement for diagnosis, planning of surgery, and clinical outcome in patients with Cushing disease,” the authors wrote.

But will enough doctors actually allow patients to get that far or will they still blow them off?

From https://cushings.invisionzone.com/topic/56737-day-2-cushing%E2%80%99s-awareness-challenge-2022/?do=findComment&comment=478717

Ectopic Cushing’s syndrome due to metastatic neuroendocrine small-cell carcinoma is a rare condition with a poor prognosis. The options for treatment are few and not necessarily curative. There needs to be increased awareness of this serious and rare complication. Managing the condition can be a challenge and requires a multidisciplinary team approach to improve outcomes.

Read more at https://cushings.invisionzone.com/topic/57577-recurrent-neuroendocrine-tumor-of-the-cervix-presenting-with-ectopic-cushing%E2%80%99s-syndrome/

Endocrinologic evaluation revealed grossly elevated 24-hour urinary free cortisol and elevated serum cortisol levels consistent with severe Cushing’s syndrome, and she was started on high-dose ketoconazole.

Read more at https://cushings.invisionzone.com/topic/57592-an-aggressive-case-of-adrenocortical-carcinoma-complicated-by-paraneoplastic-cushing%E2%80%99s-syndrome/

We present a patient with Cushing syndrome secondary to accidental intake of corticosteroid tablets—a 66-year-old woman with a history of well-controlled hypertension, who over the course of a few weeks developed full-blown Cushing syndrome with uncontrolled blood pressure, typical central fat accumulation, and easy bruising.

Read more at https://cushings.invisionzone.com/topic/57688-accidental-cushing-syndrome/

...Being constantly diagnosed as “healthy” caused me to be told, when I was finally diagnosed correctly, that I had maybe five years to live. Misdiagnosis can be a killer.… It is now my personal mission and obligation to help those suffering from any chronic illness that steals your joy, and bring awareness to Endocrine Disorders. From my journey through Cushing’s to Addison’s to recovery—from triathlete to barely being able to dress myself and finally to recovering into a stronger person I never knew I was.

Read more at https://amzn.to/2pWMhOh

Wow - a lot has happened since I first shared this post.  If you look at the timestamp, I'm writing this at 4:20 am and I've been awake for an hour, even though I'm exhausted.

I have been back on Growth Hormone although it doesn't seem to do me any good.

Read more at https://cushings.invisionzone.com/topic/56745-day-3-cushing%E2%80%99s-awareness-challenge-2022/?do=findComment&comment=478719

“Hypercortisolism with adrenal etiology affects many patients and is associated with serious cardiometabolic comorbidities, including hypertension and hyperglycemia, and increased risk of premature death,” said Bill Guyer, PharmD, Corcept’s Chief Development Officer. “GRADIENT is the first prospective placebo-controlled study to be conducted exclusively in these patients with Cushing’s syndrome. We expect data from GRADIENT in the fourth quarter of this year.”

Read more at https://cushings.invisionzone.com/topic/57710-corcept-completes-enrollment-in-phase-3-gradient-trial-of-relacorilant-in-patients-with-adrenal-cushing%E2%80%99s-syndrome/

The patient is a 46-year-old male who presented to our hospital with recurrent symptoms of pheochromocytoma. He reported that he experienced unexplained symptoms such as panic attacks, headache, sweating, nausea, vomiting, and a feeling of imminent death, which could be alleviated by rest. 

Read more at https://cushings.invisionzone.com/topic/57698-ectopic-adrenocorticotropic-hormone-secreting-pheochromocytoma-with-severe-metabolic-disturbances-a-case-report/

Evaluate whether age-related differences exist in clinical characteristics, diagnostic approach and management strategies in patients with Cushing’s syndrome included in the European Registry on Cushing’s Syndrome (ERCUSYN).

Read more at https://cushings.invisionzone.com/topic/57599-cushing%E2%80%99s-syndrome-in-the-elderly-data-from-the-european-registry-on-cushing%E2%80%99s-syndrome/

The most common cause of Cushing syndrome (CS) is exposure to exogenous glucocorticoids. There is an increasing incidence of adulterated over-the-counter (OTC) supplements containing steroids.

Read more at https://cushings.invisionzone.com/topic/57624-exogenous-cushing-syndrome-and-hip-fracture-due-to-over-the-counter-supplement-artri-king/

The higher IGF-1 index was independently associated with lower prevalence of low bone mass in young CD patients, and IGF-1 might play an important role in the pathogenesis of CD-caused low bone mass.

Read more at https://cushings.invisionzone.com/topic/57619-association-of-igf-1-level-with-low-bone-mass-in-young-patients-with-cushing%E2%80%99s-disease/

Dr. Karen Thames shared these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation

She has graciously given me permission to share them here and in the CushieWiki and on the Cushing’s Help message boards.

Read more at https://cushieblogger.com/2022/04/03/cushings-myths-and-facts-4/

Ectopic Cushing’s syndrome due to metastatic neuroendocrine small-cell carcinoma is a rare condition with a poor prognosis. The options for treatment are few and not necessarily curative. There needs to be increased awareness of this serious and rare complication. Managing the condition can be a challenge and requires a multidisciplinary team approach to improve outcomes.

Read more at https://cushings.invisionzone.com/topic/57577-recurrent-neuroendocrine-tumor-of-the-cervix-presenting-with-ectopic-cushing%E2%80%99s-syndrome/

Through the newly available dial-up internet, I joined forces with a small group of wonderful Cushing’s advocates. Cathy Gifford and Mary O’Connor, were my first Cushing’s friends, and are still dear friends twenty one years later. Together we got things moving. Mary, has built the largest Cushing’s support boards, and her admirable dedication continues to help and support patients from all over the world, Cushing’s Help and Support (cushings-help.com).

Read more at https://cushieblogger.com/2022/04/03/kind-words-for-cushings-awareness-month/

Sharmyn McGraw searched for answers for seven years for whatever it was that was killing her; finally she diagnosed herself via the Internet with Cushing’s disease, caused by a pituitary brain tumor. 

See the video at https://cushieblogger.com/2019/04/03/video-cushings-disease-pituitary-gland/

One of my least favorite things about my life with chronic illness is having imaging appointments.  Whether it's my yearly brain MRI, or a chest X-ray, the whole process is uncomfortable, and sometimes even painful...

Read more at https://cushieblogger.com/2019/04/03/from-a-past-blogging-challenge-cushings-awareness-challenge-danielle-day-3/

After your physicians have determined that it is reasonably safe to discharge you from the hospital following transsphenoidal pituitary surgery there are a number of important situations that may arise. Most people feel well after discharge. However, you should be aware of these possible problems, just in case. The following general guidelines are provided to promote your health and safety.

Headache, facial, and sinus pain are not uncommon following pituitary surgery. As you may have noted, the pain and discomfort typically improve on a daily basis following surgery. If you should experience a worsening of your pain or discomfort, please contact your neurosurgeon immediately.

Read more at http://www.cushings-info.com/index.php?title=Pituitary_Post-Op

The most common cause of Cushing syndrome (CS) is exposure to exogenous glucocorticoids. There is an increasing incidence of adulterated over-the-counter (OTC) supplements containing steroids.

Read more at https://cushings.invisionzone.com/topic/57624-exogenous-cushing-syndrome-and-hip-fracture-due-to-over-the-counter-supplement-artri-king/

The higher IGF-1 index was independently associated with lower prevalence of low bone mass in young CD patients, and IGF-1 might play an important role in the pathogenesis of CD-caused low bone mass.

Read more at https://cushings.invisionzone.com/topic/57619-association-of-igf-1-level-with-low-bone-mass-in-young-patients-with-cushing%E2%80%99s-disease/

Ectopic Cushing’s syndrome due to metastatic neuroendocrine small-cell carcinoma is a rare condition with a poor prognosis. The options for treatment are few and not necessarily curative. There needs to be increased awareness of this serious and rare complication. Managing the condition can be a challenge and requires a multidisciplinary team approach to improve outcomes.

Read more at https://cushings.invisionzone.com/topic/57577-recurrent-neuroendocrine-tumor-of-the-cervix-presenting-with-ectopic-cushing%E2%80%99s-syndrome/

The FDA granted breakthrough therapy designation for an oral non-glucocorticoid medication for the treatment of congenital adrenal hyperplasia, according to an industry press release.

Crinecerfont (Neurocrine Biosciences) is a selective corticotropin-releasing factor type 1 receptor antagonist under development to lower excess adrenal androgens for people with congenital adrenal hyperplasia due to 21-hyroxylase deficiency.

Read more at https://cushings.invisionzone.com/topic/57679-fda-grants-breakthrough-therapy-designation-for-oral-congenital-adrenal-hyperplasia-drug/

Like most everything else in my life, having had Cushing's (pituitary) made this surgery more difficult.  My surgeon had to plan with my endocrinologist how much cortisol I'd need during the operation, then I had to stay overnight to get me successfully weaned off the cortisone again.

Read more at https://cushings.invisionzone.com/topic/57682-what-was-the-most-memorable-thing-that-happened-to-you-last-year/

Cortisol is a hormone which produced by the adrenal gland (cortex) to control blood sugar. The production of cortisol is triggered by the pituitary hormone ACTH. Cortisol is a glucocorticoid which stimulates an increase in blood glucose. Cortisol will also stimulate the release of amino acids from muscle tissue and fatty acids from adipose tissue. The amino acids are then converted in the liver to glucose (for use by the brain). The fatty acids can be used by skeletal muscles for energy (rather than glucose) thereby freeing up glucose for selective utilization by the brain. Cortisol levels are often measured to evaluate the function of the pituitary or adrenal glands. Some of the cortisol is metabolized by the liver to produce 17 hydroxycorticosteroids, which is then excreted in the urine.

Read more at https://cushings.invisionzone.com/topic/56255-what-is-cortisol/

“The pituitary is commonly referred to as the ‘master’ gland because it does so many important jobs in the body,” says Karen Frankwich, MD, a board-certified endocrinologist at Mission Hospital. “Not only does the pituitary make its own hormones, but it also triggers hormone production in other glands. The pituitary is aided in its job by the hypothalamus. This part of the brain is situated above the pituitary, and sends messages to the gland on when to release or stimulate production of necessary hormones.”

Read more at https://cushings.invisionzone.com/topic/56334-the-pituitary-gland-small-but-mighty/

Read more at https://cushings.invisionzone.com/topic/57594-complete-and-sustained-remission-of-hypercortisolism-with-pasireotide-treatment-of-an-adrenocorticotropic-hormone-acth-secreting-thoracic-neuroendocrine-tumour-an-n-of-1-trial/

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This review is illustrated by the case of a 75-year old woman with fulminant ectopic Cushing's Syndrome caused by a ACTH-secreting metastatic siNET. Severe hypokalemia, fluid retention and refractory hypertension were the presenting symptoms.

Read more at https://cushings.invisionzone.com/topic/57699-fulminant-ectopic-cushing%E2%80%99s-syndrome-caused-by-metastatic-small-intestine-neuroendocrine-tumour/

Bilateral adrenalectomy (BA) still plays an important role in the management of Cushing's disease (CD). Nelson’s syndrome (NS) is a severe complication of BA, but conflicting data on its prevalence and predicting factors have been reported. The aim of this study was to determine the prevalence of NS, and identify factors associated with its development.

Read more at https://cushings.invisionzone.com/topic/55708-prevalence-of-nelson%E2%80%99s-syndrome-after-bilateral-adrenalectomy-in-patients-with-cushing%E2%80%99s-disease/

Acute adrenal crisis is a life-threatening state caused by insufficient levels of cortisol, which is a hormone produced and released by the adrenal gland.

Read more at https://cushings.invisionzone.com/topic/56238-call-911-adrenal-crisis-addisonsadrenal-insufficiency/

Stress-related brain disorders can be associated with glucocorticoid disturbance and hippocampal alteration. However, it remains largely unknown how cortisol affects the structure and function of hippocampus. Cushing's disease (CD) provides a unique “hyperexpression model” to explore the effects of excessive cortisol on hippocampus as well as the relation between these effects and neuropsychological deficits.

Read more at https://cushings.invisionzone.com/topic/56924-altered-hippocampal-volume-and-functional-connectivity-in-patients-with-cushings-disease/

The following is a summary of “Diurnal Range and Intra-patient Variability of ACTH Is Restored With Remission in Cushing’s Disease,” published in the November 2023 issue of Endocrinology by Alvarez, et al.

Read more at https://cushings.invisionzone.com/topic/57670-restoration-of-intra-patient-variability-and-diurnal-range-of-acth-with-remission-in-cushing%E2%80%99s-disease/

Cushing’s disease (CD) is a serious endocrine disorder caused by an adrenocorticotropic hormone (ACTH)-secreting pituitary neuroendocrine tumor (PitNET) that stimulates the adrenal glands to overproduce cortisol. Chronic exposure to excess cortisol has detrimental effects on health, including increased stroke rates, diabetes, obesity, cognitive impairment, anxiety, depression, and death. The first-line treatment for CD is pituitary surgery. Current surgical remission rates reported in only 56% of patients depending on several criteria. The lack of specificity, poor tolerability, and low efficacy of the subsequent second-line medical therapies make CD a medical therapeutic challenge. One major limitation that hinders the development of specific medical therapies is the lack of relevant human model systems that recapitulate the cellular composition of PitNET microenvironment.

Read more at https://cushings.invisionzone.com/topic/57575-development-of-human-pituitary-neuroendocrine-tumor-organoids-to-facilitate-effective-targeted-treatments-of-cushing%E2%80%99s-disease/

The pituitary gland produces hormones. A tumor in this gland can cause it to produce too much of the hormone cortisol. Too much cortisol in the body causes Cushing disease. This disease causes many problems. Some of these problems might persist after the disease is cured.

Read more at https://cushings.invisionzone.com/topic/56742-long-term-follow-up-of-survivors-of-pediatric-cushing-disease/

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?...

Read more at https://cushieblogger.com/2019/04/04/from-a-past-blogging-challenge-cushings-awareness-challenge-danielle-day-4/

I sure had way more than one urine test, and lots of blood and more but that was a long time ago.  What are your thoughts on this?

Let us know at https://cushings.invisionzone.com/topic/57689-what-do-you-think-only-one-urine-test-for-cushings/

Cushing’s syndrome due to ectopic adrenocorticotropic hormone (ACTH) secretion (EAS) by a pheochromocytoma is a challenging condition. 

Read more at https://cushings.invisionzone.com/topic/57606-catastrophic-acth-secreting-pheochromocytoma/

The Cushing’s syndrome, a disease caused by the excessive production of cortisol by the pituitary gland due to a benign tumor of the gland, has seen a breakthrough in its treatment. Thanks to a new drug called osilodrostat, approved in 2020 by the Food and Drug Administration and subsequently by Aifa in Italy, patients unfit for surgery can benefit from a treatment that offers the same effects as a scalpel. Furthermore, this drug reduced symptoms in 80% of cases.

Read more at https://cushings.invisionzone.com/topic/57612-cushing%E2%80%99s-syndrome-a-new-drug-allows-you-to-avoid-surgery/