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/

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 may sometimes make you feel that your life is out of your control. But there are some general things you can do to help take back control.

https://cushings-help.com/2024/11/05/tips-for-living-with-cushings/

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/

Posterior pituitary tumors (PPTs) are extremely rare, with fewer than 400 cases reported to date. In 2022, the WHO classified four types of tumors originating from the posterior pituitary

Read more at https://cushings.invisionzone.com/topic/57780-oncocytic-pituicytoma-in-a-patient-with-cushings-disease/

We report the case of a patient with double functional pituitary adenomas causing acromegaly and subclinical Cushing's disease. A 45-year-old woman was referred to our Department for suspected acromegaly. Her past medical history included diabetes mellitus treated with oral antidiabetic drugs and hypertension.

https://cushings.invisionzone.com/topic/57847-double-synchronous-functional-pituitary-adenomas-causing-acromegaly-and-subclinical-cushing-disease/

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.

Read more at https://cushingsbios.com/2021/06/30/in-memory-kassey-whiterock-june-30-2016/

The annual Pituitary Patient Education Day is a free event that features presentations from Johns Hopkins pituitary experts.

https://cushings.invisionzone.com/topic/57826-johns-hopkins-pituitary-patient-education-day/

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/

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/

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/

Some pain is normal after any surgery. Different people have different levels of sensitivity to pain. In general, you should experience a little less pain every day. Pain is usually worse in the evening when you are trying to go to sleep. Do not be afraid to take the pain medicine prescribed for you, particularly before you go to sleep, but you can stop taking it if you are comfortable. Most pain medications cause constipation and they can also cause drowsiness. Do not drive or operate power tools after you take narcotic pain medications. If you have only mild discomfort, try taking extra-strength Tylenol® as directed.

https://cushings-help.com/2024/10/30/adrenalectomy-and-bla/

The diagnosis of Cushing's Syndrome is often difficult due to the insidious onset of hypercortisolism, in absence of relevant early signs of the disease, as well as the rarity of the disease in childhood. For these reasons, the time to diagnosis has been reported as a mean of 33 months (95% CI 29–38) and not dissimilar to adult population.

https://cushings.invisionzone.com/topic/57762-cushing-syndrome-in-paediatric-population/

Cushing’s disease may sometimes make you feel that your life is out of your control. But there are some general things you can do to help take back control.

https://cushings-help.com/2024/11/05/tips-for-living-with-cushings/

Three young female patients with a history of generalized body pain were diagnosed with fibromyalgia. They visited several specialities which related patients' symptoms to their previous diagnosis of fibromyalgia and were treated symptomatically. These patients developed a multitude of clinical features including fractures, hypertension, abnormal weight gain, proximal myopathic pain and bruising. They were seen by rheumatologists whose assessment was that their clinical features were not entirely due to fibromyalgia and suspected that patients have a possible underlying endocrine cause. Patients were referred to an endocrinologist for further tests with suspicion of Cushing’s syndrome. Laboratory tests and imaging confirmed a diagnosis of Cushing’s syndrome. Two of them had adrenal adenoma and one had iatrogenic corticosteroid use. These cases emphasize the need for thorough clinical evaluation for patients who are thought to have fibromyalgia. Fibromyalgia is a diagnosis of exclusion.

Read more at https://cushings.invisionzone.com/topic/57756-cushing%E2%80%99s-syndrome-masquerading-as-fibromyalgia-a-case-series/

Posterior pituitary tumors (PPTs) are extremely rare, with fewer than 400 cases reported to date. In 2022, the WHO classified four types of tumors originating from the posterior pituitary

Read more at https://cushings.invisionzone.com/topic/57780-oncocytic-pituicytoma-in-a-patient-with-cushings-disease/

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/

We report a case of a 16-year-old female with recurrent Cushing’s disease secondary to a pituitary microadenoma, confirmed by elevated urinary free cortisol and magnetic resonance imaging (MRI). It was initially treated with transsphenoidal resection in 2019; disease recurrence was confirmed and again treated in 2024.

https://cushings.invisionzone.com/topic/57848-reconstructive-liposuction-for-residual-lipodystrophy-after-remission-of-cushing%E2%80%99s-disease/

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/

Add your location and diagnosis to our Cushing's World Map.
Helpful Doctor locations are being added to this map, as well

See the Map at https://drive.google.com/open?id=1NLdGqTJyaJOvxegUnUR_slLRcYyMsVbJ&usp=sharing

Relacorilant was deemed well tolerated in the trial. The most common adverse events were nausea, edema, back and extremity pain and fatigue, all of which were mild or moderate in nature and are consistent with symptoms people experience after surgery or the start of therapy to treat hypercortisolism.

Read more at https://cushings.invisionzone.com/topic/57728-investigational-cushing%E2%80%99s-syndrome-medication-reduces-bp-glucose-in-open-label-trial/

Abstract

This case report describes a 42-year-old female with a rare pheochromocytoma presenting without classic Cushingoid features but with uncontrolled hypertension, type 2 diabetes, and recurrent headaches. Despite the absence of typical signs, biochemical analysis revealed elevated cortisol and ACTH levels, and imaging showed a 6 cm adrenal mass. The patient was stabilized preoperatively with alpha-blockers and metyrapone before undergoing a successful laparoscopic adrenalectomy. Histopathology confirmed pheochromocytoma with aggressive features. Postoperatively, her blood pressure and symptoms improved, and her cortisol levels normalized. This case underscores the diagnostic challenges of ACTH-secreting pheochromocytomas without classic hypercortisolism signs and emphasizes the need for thorough endocrine and imaging assessments. Surgical resection remains the definitive treatment, with long-term follow-up essential to monitor for recurrence. This case contributes to the limited literature on the coexistence of pheochromocytoma and ectopic ACTH secretion.

https://cushings.invisionzone.com/topic/57818-ectopic-acth-secreting-pheochromocytoma-without-typical-signs-of-cushing-syndrome/

“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/

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/

As a rare endocrine disorder, Cushing’s Syndrome (Cushing’s) is characterized by numerous symptoms and a non-specific presentation, leading to a delay to diagnosis for patients with this disease. To date, research examining the lived experiences of patients with Cushing’s in healthcare is absent in the literature. This preliminary inquiry into the healthcare experiences of women with Cushing’s aimed to examine the utility of this line of inquiry to support the patient centered care of individuals with Cushing’s.

https://cushings.invisionzone.com/topic/57759-%E2%80%9Cthe-healthcare-system-did-fail-me-repeatedly%E2%80%9D-a-qualitative-study-on-experiences-of-healthcare-among-canadian-women-with-cushing%E2%80%99s-syndrome/

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

Cushing’s disease may sometimes make you feel that your life is out of your control. But there are some general things you can do to help take back control.

https://cushings-help.com/2024/11/05/tips-for-living-with-cushings/

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/

Cushing’s syndrome (CS) is associated with severe cardiovascular (CV) morbidity and mortality. Cardiac magnetic resonance (CMR) is the non-invasive gold standard for assessing cardiac structure and function; however, few CMR studies explore cardiac remodeling in patients exposed to chronic glucocorticoid (GC) excess. We aimed to describe the CMR features directly attributable to previous GC exposure in patients with cured or treated endogenous CS.

Read more at https://cushings.invisionzone.com/topic/57734-cardiac-magnetic-resonance-reveals-biventricular-impairment-in-cushing%E2%80%99s-syndrome/

Endogenous Cushing's syndrome (CS) has been linked with an increased risk of cancer. We aimed to evaluate the association between cancer risk and disease remission post-surgery in adrenal CS and Cushing's disease (CD).

https://cushings.invisionzone.com/topic/57786-impact-of-remission-status-in-endogenous-cushings-syndrome-on-cancer-incidence/

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/

The Phase III GRADIENT trial for relacorilant has missed its primary endpoint of improving SBP for Cushing's syndrome patients.

https://cushings.invisionzone.com/topic/57763-corcept%E2%80%99s-relacorilant-gradient-trial-misses-primary-endpoint/

Posterior pituitary tumors (PPTs) are extremely rare, with fewer than 400 cases reported to date. In 2022, the WHO classified four types of tumors originating from the posterior pituitary

Read more at https://cushings.invisionzone.com/topic/57780-oncocytic-pituicytoma-in-a-patient-with-cushings-disease/

Diagnosing Cushing's disease involves a series of tests to confirm excessive cortisol production and determine its source.

https://cushings.invisionzone.com/topic/57787-how-is-cushings-disease-diagnosed/

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/

Interview with Judy, the mother of two Cushing’s patients, and her daughter, Jess, a high school student with Cushing’s. Robin (staticnrg) hosted.

Read more at https://cushieblogger.com/2022/04/11/archived-interview-with-judy-mom-to-two-cushings-patients-and-her-daughter-jess-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/

Endogenous Cushing’s Syndrome (CS) is associated with an increased cardiovascular (CV) and metabolic risk profile, yet the specific impact of hypercortisolism on myocardial function remains inadequately understood.

https://cushings.invisionzone.com/topic/57805-myocardial-work-impairment-in-patients-with-cushing%E2%80%99s-syndrome/

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/

A 45-year-old female developed clinical and biochemical recurrent Cushings’ Disease 2.5 years after transsphenoidal hypophysectomy for 2cm pituitary macroadenoma.

Read more at https://cushingsbios.com/2024/07/02/anonymous-woman-recurrent-cushings/

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/

Cushing’s disease may sometimes make you feel that your life is out of your control. But there are some general things you can do to help take back control.

https://cushings-help.com/2024/11/05/tips-for-living-with-cushings/

Did't we all do this?

A young woman saved her own life after successfully self-diagnosing cancer/Cushing's that doctors had missed because she researched her own worrying symptoms on TikTok.

https://cushings.invisionzone.com/topic/57819-tiktok-saved-my-life-student-discovers-life-threatening-tumour-after-self-diagnosing-rare-condition/

Posterior pituitary tumors (PPTs) are extremely rare, with fewer than 400 cases reported to date. In 2022, the WHO classified four types of tumors originating from the posterior pituitary

Read more at https://cushings.invisionzone.com/topic/57780-oncocytic-pituicytoma-in-a-patient-with-cushings-disease/

Cushing’s Disease is common in dogs but rare and hard to diagnose in people. That’s why University of Georgia researchers are leveraging canine treatments to find new solutions to battle the condition in humans. This collaboration between veterinary medicine and human health care is just one example of how UGA uses a Precision One Health approach to find and tailor new medical treatments for people and animals.

https://cushings.invisionzone.com/topic/57820-connecting-canine-and-human-health-to-fight-cushing%E2%80%99s-disease/

(1915)  Russian-Jewish neuroscientist Joseph Ransohoff was born. He is known pioneering the use of medical imaging in the diagnosis and treatment of brain tumors.
https://cushings.invisionzone.com/events/event/1540-medical-history/

More at 

Researchers from endocrinology and nuclear medicine departments have introduced a new PET scan molecule that enhances the detection of adenoma/small tumour causing Cushing’s syndrome. This development promises to improve surgical interventions and patient outcomes.

https://cushings.invisionzone.com/topic/57806-ivory-tower-new-pet-scan-molecule-offers-breakthrough-in-detecting-cushing%E2%80%99s-syndrome/

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/

Adrenal insufficiency is a condition where the adrenal glands don't produce enough of certain hormones, primarily cortisol and sometimes aldosterone. This disorder can be categorized into primary (Addison's disease) and secondary forms.

https://cushings.invisionzone.com/topic/57788-adrenal-insufficiency/

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/

Cushing’s disease may sometimes make you feel that your life is out of your control. But there are some general things you can do to help take back control.

https://cushings-help.com/2024/11/05/tips-for-living-with-cushings/

Cases of hepatotoxicity with fatal outcome or requiring liver transplantation have been reported with oral ketoconazole. Some patients had no obvious risk factors for liver disease. Recorlev is associated with serious hepatotoxicity. Evaluate liver enzymes prior to and during treatment.

Read more at https://cushings.invisionzone.com/topic/57735-xeris-presents-new-post-hoc-analysis-on-effects-of-levoketoconazole-recorlev%C2%AE-in-cushing%E2%80%99s-syndrome-patients-at-endo-2024/

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/

Posterior pituitary tumors (PPTs) are extremely rare, with fewer than 400 cases reported to date. In 2022, the WHO classified four types of tumors originating from the posterior pituitary

Read more at https://cushings.invisionzone.com/topic/57780-oncocytic-pituicytoma-in-a-patient-with-cushings-disease/

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/

The annual Pituitary Patient Education Day is a free event that features presentations from Johns Hopkins pituitary experts.

https://cushings.invisionzone.com/topic/57826-johns-hopkins-pituitary-patient-education-day/

Dr. Friedman is an expert in pituitary, thyroid and adrenal issues as well as several other endocrine conditions, while most endocrinologists specialize in diabetes or just thyroid disease.  He has seen and diagnosed more patients with Cushing’s disease, growth hormone deficiency or adrenal insufficiency in a month than most Endocrinologists see in a lifetime.

https://cushings.invisionzone.com/topic/57822-reasons-you-or-your-friend-or-family-member-should-see-dr-friedman/

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/

We present a case of a 34-year-old woman with a rapid onset of severe hypercortisolism in April 2016. After initial treatment with a steroid inhibitor (ketoconazole) and diagnostics including 68Ga DOTA-TATE PET/CT, it was shown to be caused by a small thymic NET.

https://cushings.invisionzone.com/topic/57807-thymic-neuroendocrine-tumor-with-metastasis-to-the-breast-causing-ectopic-cushing%E2%80%99s-syndrome/

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/

“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/

Cushing’s disease may sometimes make you feel that your life is out of your control. But there are some general things you can do to help take back control.

https://cushings-help.com/2024/11/05/tips-for-living-with-cushings/

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/

I'm also noticing physical symptoms such as new patches of hair on my back, hyperpigmentation of my knuckles, knee and elbow, high blood pressure, bruises that heal dark as well as the severe nervousness and anxiety. Given my tests and symptoms that are on a cycle, can this be cyclic cushing's?

https://cushings.invisionzone.com/topic/57738-can-i-be-cyclic/

High levels of the stress hormone cortisol can cause the face to gradually swell into a rounded shape and is often the result of prolonged use of corticosteroids, Cushing syndrome or other underlying medical issues.

https://cushings.invisionzone.com/topic/57757-%E2%80%98cortisol-face%E2%80%99-is-real-but-it%E2%80%99s-not-as-common-as-you-might-think/

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/

Posterior pituitary tumors (PPTs) are extremely rare, with fewer than 400 cases reported to date. In 2022, the WHO classified four types of tumors originating from the posterior pituitary

Read more at https://cushings.invisionzone.com/topic/57780-oncocytic-pituicytoma-in-a-patient-with-cushings-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/2025/04/04/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/

This study confirms the significant impact of prolonged high cortisol exposure on cognitive function and identifies key risk factors. The nomogram model offers robust performance, providing a valuable tool for managing Cushing's disease patients’ cognitive health and informing strategies for other cortisol-related disorders.

https://cushings.invisionzone.com/topic/57821-the-impact-of-prolonged-high-concentration-cortisol-exposure-on-cognitive-function-and-risk-factors-evidence-from-cushings-disease-patients/

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/

I have learned so much on this Cushing’s journey, much of it from all of you and this site. I wanted to share those learnings, in the event that it helps anyone else.

Obviously – my own opinions here!

My best wishes to everyone on their Cushing’s journey.

https://cushings-help.com/2024/11/04/tips-from-message-board-members/

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.

Isturisa was approved in 2020 to treat adults with Cushing’s disease for whom pituitary surgery is ineffective or not an option.

Read more at https://cushings.invisionzone.com/topic/56571-meds-isturisa/

 For a study, researchers sought to ascertain the prevalence of various forms of autonomous hormone secretion in individuals diagnosed with adrenal incidentaloma, including autonomous/possible autonomous cortisol secretion (ACS), primary aldosteronism (PA), pheochromocytoma (PHEO), and Cushing syndrome (CS).

Read more at https://cushings.invisionzone.com/topic/57641-investigating-the-frequency-of-active-adrenal-incidentalomas/

 For a study, researchers sought to ascertain the prevalence of various forms of autonomous hormone secretion in individuals diagnosed with adrenal incidentaloma, including autonomous/possible autonomous cortisol secretion (ACS), primary aldosteronism (PA), pheochromocytoma (PHEO), and Cushing syndrome (CS).

Read more at https://cushings.invisionzone.com/topic/57641-investigating-the-frequency-of-active-adrenal-incidentalomas/

We report a middle-aged woman with Cushing’s syndrome symptoms, such as hypertension and moon face, since her youth. A few years ago, she experienced pain and swelling in her ankle, which was diagnosed as atraumatic AVNT and treated with hindfoot fusion. Years later, she was diagnosed with Cushing’s disease caused by an adrenocorticotropic hormone (ACTH)-producing pituitary adenoma in laboratory tests and imaging, which was resected in 2020. 

Read more at https://cushings.invisionzone.com/topic/57711-talus-avascular-necrosis-as-a-rare-complication-of-cushing%E2%80%99s-disease/

A loving dad with ‘boundless energy and positivity’ died unexpectedly of a rare condition. Dave Whitfield was 59 when he died in December 2023.

His son Archie, 23, explained that his dad had been diagnosed with several brain tumours throughout his life but they had always been treatable by doctors. This changed in early 2023 however.

Another brain tumour led to Dave being diagnosed with Cushing’s syndrome, a rare condition caused by excessive cortisol in the body. Often this overproduction is due to a benign tumour in the pituitary or adrenal glands.

Cortisol helps the body cope with stressful situations, as well as reducing swelling and fighting off infections. Cushing’s syndrome is also much more common in women than in men.

Because of this, Archie and the wider family were taken aback about what happened to Dave. Speaking to the ECHO, Archie said: “Dad had brain tumours come and go over the last 15, 20 years.

“He was always able to either get the tumour operated on or have radiotherapy to have them removed. However, a couple years ago, a tumour came back, causing Cushing's syndrome.

https://cushingsbios.com/2025/04/05/pituitary-we-thought-dad-would-be-alright-but-we-were-wrong/

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/

TSH stands for “thyroid stimulating hormone” and the test measures how much of this hormone is in your blood. TSH is produced by the pituitary gland in your brain. This gland tells your thyroid to make and release the thyroid hormones into your blood.

Read more at https://cushings.invisionzone.com/topic/56343-basics-testing-what-is-a-tsh-test/

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/

When Lydia first met with her OBGYN to address her weight gain and the overall feeling that something was wrong with her body, her concerns were quickly dismissed. “He told me ‘You’re almost 30 and you’ve had two kids, no wonder you feel the way that you do,’” said Lydia. “He blew me off and told me that I needed more diet and exercise. He didn’t order other tests.”

Read more at https://cushings.invisionzone.com/topic/57680-%E2%80%9Ci-don%E2%80%99t-feel-normal%E2%80%9D-%E2%80%93-the-diagnosis-of-a-pituitary-tumor-cushing%E2%80%99s-disease/

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/

Osilodrostat provided long-term control of cortisol secretion that was associated with sustained improvements in clinical signs and physical manifestations of hypercortisolism. Osilodrostat is an effective long-term treatment for patients with Cushing’s disease.

Read more at https://cushings.invisionzone.com/topic/57632-long-term-efficacy-and-safety-of-osilodrostat-in-patients-with-cushing%E2%80%99s-disease/

Cushing’s disease may sometimes make you feel that your life is out of your control. But there are some general things you can do to help take back control.

https://cushings-help.com/2024/11/05/tips-for-living-with-cushings/

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/

This extended evaluation (EE) of the SONICS study assessed effects of levoketoconazole for an additional 6 months following open-label, 6-month maintenance treatment in endogenous Cushing’s syndrome.

Read more at https://cushings.invisionzone.com/topic/57576-levoketoconazole-treatment-in-endogenous-cushing%E2%80%99s-syndrome/

Posterior pituitary tumors (PPTs) are extremely rare, with fewer than 400 cases reported to date. In 2022, the WHO classified four types of tumors originating from the posterior pituitary

Read more at https://cushings.invisionzone.com/topic/57780-oncocytic-pituicytoma-in-a-patient-with-cushings-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/

Social media dominates most people's lives these days. You see what everyone you know is up to, but the problem is, most people only post about the highlights of their lives.

You don't get to see the low points, the every day struggles. You don't see what keeps them up at night with worry...

Read more at https://cushieblogger.com/2025/04/05/from-a-past-blogging-challenge-cushings-awareness-challenge-danielle-day-5/

A 35-year-old woman is seen in the outpatient clinic for evaluation of an incidental pituitary macroadenoma. Her medical history is significant for hypertension, diabetes, hyperlipidemia, polycystic ovary syndrome, and obesity. She initially presented to the emergency department (ED) a week ago after an episode of right visual field changes that she described as waviness in her right eye and right hemibody sensory changes without motor deficits. While in the ED, she underwent a full workup for possible stroke, which was negative. Magnetic resonance imaging (MRI) of her brain without contrast revealed a 12-mm pituitary lesion; a repeat MRI with contrast was then ordered (Figure). No serum hormonal panel was available for review from ED records. 

Read more at https://cushings.invisionzone.com/topic/56643-workup-for-incidental-pituitary-adenoma/

The presentation of Cushing’s disease varies by age, with older adults having fewer hallmark features of the condition and more comorbidities, according to study findings published in The Journal of Clinical Endocrinology & Metabolism.

https://cushings.invisionzone.com/topic/57790-older-adults-with-cushing%E2%80%99s-disease-present-with-fewer-symptoms-than-younger-patients/