We present a 9-year-old boy who presented at age 4 with cyclical Cushing syndrome and was eventually diagnosed with a novel, previously unreported, unpublished variant in PRKAR1A associated with Carney complex. He was treated with unilateral left adrenalectomy. At 1-year follow-up, he continues to be in remission of his symptoms of Cushing syndrome.

https://cushings.invisionzone.com/topic/57870-unilateral-adrenalectomy-for-pediatric-cyclical-cushing-syndrome-with-novel-prkar1a-variant-associated-carney-complex/

Learning points

• Patients with CD do not always present with classical clinical features and may present with symptoms and biochemical findings that would otherwise suggest ectopic ACTH production.

• While most patients with CD typically lose weight after biochemical remission, some patients gain weight after the normalization of cortisol levels.

• This case highlights the need to entertain a broad differential in patients presenting with hypokalemia and weight loss and the need to exclude hypercortisolemia.

https://cushings.invisionzone.com/topic/57760-atypical-presentation-of-cushing%E2%80%99s-disease-with-weight-loss-and-hypokalemia/

A clinical-stage biopharmaceutical company focused on rare endocrine diseases, announced that the first patient has been successfully dosed in its ongoing Phase 2 clinical trial evaluating ST-002 for the treatment of Cushing's Syndrome.

https://cushings.invisionzone.com/topic/57846-sterotherapeutics-announces-first-patient-dosed-in-phase-2-clinical-trial-evaluating-st-002-for-cushings-syndrome/

After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving...

https://cushingsbios.com/2026/05/04/dee-dee-pituitary-bio/

Ocular hypertension was more common in people with Cushing’s illness. The usage of steroids in the body is a major contributor to high intraocular pressure (IOP). Topical or systemic glucocorticoid use may increase the prevalence.

Read more at https://cushings.invisionzone.com/topic/57588-cushing%E2%80%99s-disease-patients-are-more-likely-to-have-ocular-hypertension/

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/

Jason is from England.  Pituitary tumour found in 2020(posterior lobe),now test after test and 2nd MRI still shows microadenoma. He also had two traumatic brain injuries.

Read more at https://cushingsbios.com/2022/10/27/jason-t-pituitary-bio/

Complications of Cushing's syndrome include Hypertension, DM, infection, Bone fracture, mood swings, memory loss. If left untreated then life expectancy would be around 5 years.

Read more at https://cushings.invisionzone.com/topic/57677-what-is-the-life-expectancy-of-someone-with-cushings-syndrome/

Graphic Era Hospital has achieved a remarkable mileston by successfully treating two complex cases of the rare hormonal disorder Cushing’s Disease in Dehradun. The hospital’s experts used advanced technology and surgical skills to give the patients a new lease on life, marking this significant achievement.

https://cushings.invisionzone.com/topic/57868-graphic-era-hospital%E2%80%99s-milestone-treatment-of-two-complex-cases/

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 present a case of a middle-aged woman who presented with chest pain and shortness of breath. Laboratory tests revealed persistent hypokalaemia, hyperglycaemia, and metabolic alkalosis despite treatment. Imaging identified a mass near the right hilum suggestive of lung malignancy. Endocrine evaluation showed markedly elevated cortisol and adrenocorticotropic hormone levels, consistent with paraneoplastic Cushing syndrome caused by ectopic hormone production.

https://cushings.invisionzone.com/topic/57869-paraneoplastic-cushing-syndrome-unmasking-small-cell-lung-cancer-a-rare-presentation/

Endogenous Cushing’s syndrome (CS) is a rare endocrine condition caused by excess cortisol production with an annual incidence of 0.2–5 cases per million people

Read more at https://cushings.invisionzone.com/topic/57751-a-challenging-case-of-severe-cushing%E2%80%99s-syndrome-in-the-course-of-metastatic-thymic-neuroendocrine-carcinoma-with-a-synchronous-adrenal-tumor/

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/

We present a 9-year-old boy who presented at age 4 with cyclical Cushing syndrome and was eventually diagnosed with a novel, previously unreported, unpublished variant in PRKAR1A associated with Carney complex. He was treated with unilateral left adrenalectomy. At 1-year follow-up, he continues to be in remission of his symptoms of Cushing syndrome.

https://cushings.invisionzone.com/topic/57870-unilateral-adrenalectomy-for-pediatric-cyclical-cushing-syndrome-with-novel-prkar1a-variant-associated-carney-complex/

Transsphenoidal surgery is the primary treatment for patients with Cushing disease (CD). This study assessed the surgical and endocrinologic outcomes of patients with CD following endoscopic pituitary surgery using strict biochemical criteria to guide surveillance in patients not achieving early remission.

https://cushings.invisionzone.com/topic/57943-disease-remission-and-surgical-outcomes-of-endoscopic-transsphenoidal-surgery-for-cushing-disease-a-single-center-experience/

After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving...

https://cushingsbios.com/2026/05/04/dee-dee-pituitary-bio/

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 trial will assess the drug's efficacy, tolerability, and safety in individuals with Cushing's.

https://cushings.invisionzone.com/topic/57785-sterotherapeutics-begins-phase-ii-trial-for-st-002-targeting-cushing%E2%80%99s-syndrome/

Cushing’s disease (CD) is characterized by hypercortisolism due to excessive adrenocorticotropic hormone (ACTH) secretion from a pituitary adenoma. Though more common in adults, pediatric cases constitute approximately 5% of those seen in adults. Early diagnosis and treatment are critical due to the severe impacts on growth and development in children. Endoscopic transsphenoidal surgery (ETSS) is the preferred first-line treatment for both children and adults.

https://cushings.invisionzone.com/topic/57801-clinical-and-surgical-outcomes-of-pediatric-cushing%E2%80%99s-disease-following-endoscopic-transsphenoidal-surgery/

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/

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/

Joanne was known on the boards as raggettyjoanne.

Mario VandDermeij announced the passing of his loving wife of 23 years.  Joanne Swain VanDermeij at the age of 56.  

After 2 years and 3 months of fighting the system, Joanne was finally diagnosed March the 14th, 2011, with full blown adrenal Cushing's.

http://cushings.invisionzone.com/profile/10929-raggettyjoanne/

Bettye passed away due to complications of Cushing’s disease.  Once she was finally diagnosed, a decision was made against surgery and Bettye was put on the cortisol-lowering medication Korlym.  Though she had initially gained weight from Cushing’s disease, as many patients do, she rapidly lost weight and was admitted into hospice care soon after.

Read more at https://cushingsbios.com/2021/09/28/in-memory-of-bettye-jean-douglas-september-28-2016/

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/

Our scoping review identified several cases of de novo conditions emerging following the remission of Cushing syndrome. They occurred mostly in women and within the year following remission.

Read more at https://cushings.invisionzone.com/topic/57726-emergence-of-de-novo-conditions-following-remission-of-cushing-syndrome-a-case-report-and-scoping-review/

Graphic Era Hospital has achieved a remarkable mileston by successfully treating two complex cases of the rare hormonal disorder Cushing’s Disease in Dehradun. The hospital’s experts used advanced technology and surgical skills to give the patients a new lease on life, marking this significant achievement.

https://cushings.invisionzone.com/topic/57868-graphic-era-hospital%E2%80%99s-milestone-treatment-of-two-complex-cases/

As the clinical presentation of Cushing’s disease changes over time, waiting for the typical Cushing’s clinic can delay diagnosis. It is important that clinicians take this into account when they suspect CD.

https://cushings.invisionzone.com/topic/57886-changing-face-of-cushing%E2%80%99s-disease-over-three-decades-in-pituitary-center/

HSD-1 inhibition with clofutriben is a completely novel approach to the treatment of endogenous Cushing’s syndrome that may overcome many of the serious problems with current therapies, including major safety, tolerability, and complexity issues such as the risk of adrenal insufficiency and adrenal crisis.

Read more at https://cushings.invisionzone.com/topic/57761-sparrow-pharmaceuticals-announces-completion-of-phase-2-trial-and-fda-orphan-drug-designation-of-clofutriben-for-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/

Cushing’s disease (CD) is associated with phenotypic traits and comorbidities that may persist after the normalization of cortisol levels. Medical therapy is usually given in recurrent or persistent CD after transsphenoidal surgery. We aimed to investigate the impact of long-term normalization of daily cortisol secretion on clinical picture and cardiometabolic comorbidities, comparing surgical remission to medical treatment.

https://cushings.invisionzone.com/topic/57817-cardiometabolic-complications-after-cushing%E2%80%99s-disease-remission/

I certainly know this to be true   I'm an 18 year survivor of yet another disease that I shouldn't have gotten:  kidney cancer.

https://cushings.invisionzone.com/topic/57758-cancer-risk-elevated-for-adults-after-cushing%E2%80%99s-syndrome-diagnosis/

She got Cushing’s Syndrome from abundant steroid injections due to a severe back injury and it has rendered her “comatose”.   She has no energy, she sleeps all the time, and I miss her and am lonely when she is in this state, which is all the time.

https://cushingsbios.com/2025/11/28/trish-steroid-induced-bio/

Please add your bio. 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/2024/10/28/we-have-a-new-bio-form/

We present a 9-year-old boy who presented at age 4 with cyclical Cushing syndrome and was eventually diagnosed with a novel, previously unreported, unpublished variant in PRKAR1A associated with Carney complex. He was treated with unilateral left adrenalectomy. At 1-year follow-up, he continues to be in remission of his symptoms of Cushing syndrome.

https://cushings.invisionzone.com/topic/57870-unilateral-adrenalectomy-for-pediatric-cyclical-cushing-syndrome-with-novel-prkar1a-variant-associated-carney-complex/

Crinetics Pharmaceuticals is conducting a study titled ‘A Phase 1b/2a Open-label Multiple-ascending Dose Exploratory Study of CRN04894 in ACTH-dependent Cushing’s Syndrome.’ This study aims to evaluate the safety, tolerability, and pharmacokinetics of CRN04894, an ACTH receptor antagonist, in treating Cushing’s Syndrome, a condition characterized by excessive cortisol production. The study’s significance lies in its potential to offer a new treatment avenue for patients with Cushing’s disease or Ectopic ACTH Syndrome.

https://cushings.invisionzone.com/topic/57905-crinetics-pharma%E2%80%99s-promising-study-on-crn04894-for-cushing%E2%80%99s-syndrome-a-potential-game-changer/

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/

After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving...

https://cushingsbios.com/2026/05/04/dee-dee-pituitary-bio/

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/

Cushing disease (CD) is the most common form of adrenocorticotropin (ACTH)-dependent Cushing syndrome (CS), whereas unilateral adrenal adenoma is the most common cause of ACTH-independent CS. However, the occurrence of different subtypes of CS in a single individual is very rare.

https://cushings.invisionzone.com/topic/57836-a-second-look-at-cushing-disease-hypercortisolism-recurrence-from-another-gland/

By Dr. Lewis Blevins: This book is perhaps something a little different than most would expect. Firstly, it's a single-author book on Cushing's syndrome. It is not, like most textbooks, a compendium of edited submissions from multiple authors where there are often divergent opinions from one chapter to the next. Instead, it's a treatise reflecting my education and experience. It is not referenced but instead each chapter is followed by suggested readings. It represents my thoughts, understanding and a personal reflection on a career of evaluating a multitude of patients suspected of having the disorder and treating those confirmed to have hypercortisolism due to one cause or another. It reflects my perspectives of the art and science of the field.

More info at https://cushings.invisionzone.com/topic/57752-cushings-a-comprehensive-guide-to-understanding-a-devastating-condition/

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/

Graphic Era Hospital has achieved a remarkable mileston by successfully treating two complex cases of the rare hormonal disorder Cushing’s Disease in Dehradun. The hospital’s experts used advanced technology and surgical skills to give the patients a new lease on life, marking this significant achievement.

https://cushings.invisionzone.com/topic/57868-graphic-era-hospital%E2%80%99s-milestone-treatment-of-two-complex-cases/

A 48-year-old male with a history of hypertension presented to his primary care physician with complaints of bilateral leg swelling, occasional shortness of breath, dizziness, and a general feeling of malaise persisting for 10 days. The patient reported increased water intake and urinary frequency without dysuria. The patient was diagnosed with hypertension eight months ago. He experienced progressive muscle weakness over two months, hindering his ability to perform daily activities, including using the bathroom. 

Read more at https://cushings.invisionzone.com/topic/57740-unveiling-the-uncommon-cushing%E2%80%99s-syndrome-cs-masquerading-as-severe-hypokalemia/

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/

Our study demonstrate a significant improvement in serum lipid levels after treatment of Cushings Syndrome. Since the cardiovascular complications of hypercortisolism depend on several factors, further studies are needed to determine whether this directly translates into an adequate reduction in the risk of major cardiovascular events.

https://cushings.invisionzone.com/topic/57931-the-effect-of-hypercortisolism-treatment-on-dyslipidemia-in-cushing-syndrome/

Cushing's has appeared several times in the media.  Jayne Kerns encouraged Zastrow to check out a Cushing's Web site, which Zastrow did. Every symptom listed matched her condition. Her doctor ran some tests, and the results confirmed Zastrow had Cushing's, a hormonal disorder often brought  on by a tumor.

https://cushingsbios.com/2025/11/29/laura-in-the-media/

Today  is the birthday, or anniversary, of the boards starting September 30, 2000 

(The rest of the site started earlier that year on July 21, 2000)

As of today, we have 73,024 members who have made countless posts.

Find the message boards here: http://cushings.invisionzone.com/

We present a 9-year-old boy who presented at age 4 with cyclical Cushing syndrome and was eventually diagnosed with a novel, previously unreported, unpublished variant in PRKAR1A associated with Carney complex. He was treated with unilateral left adrenalectomy. At 1-year follow-up, he continues to be in remission of his symptoms of Cushing syndrome.

https://cushings.invisionzone.com/topic/57870-unilateral-adrenalectomy-for-pediatric-cyclical-cushing-syndrome-with-novel-prkar1a-variant-associated-carney-complex/

After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving...

https://cushingsbios.com/2026/05/04/dee-dee-pituitary-bio/

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/

Today  is the birthday, or anniversary, of the boards starting September 30, 2000 (The rest of the site started earlier that year on July 21, 2000)

As of today, we have 73,357 members who have made countless posts.

Find the Message Boards at https://cushings.invisionzone.com/

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/

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/

Paraneoplastic Cushing syndrome (PCS) is a rare manifestation of ectopic adrenocorticotropic hormone (ACTH) production, mostly associated with bronchial carcinoid and small cell lung cancer (SCLC).

https://cushings.invisionzone.com/topic/57932-a-second-look-at-refractory-edema-delayed-diagnosis-of-paraneoplastic-cushing%E2%80%99s-syndrome-in-small-cell-lung-cancer/

Cushing's Disease can be treated, but only with the right doctor and diagnosis. 

We explore the barriers that make some patients endure years of symptoms before finding relief.

https://cushings.invisionzone.com/topic/57933-morning-medical-update-cushings-disease/

Scientists now tell us there is something in our waters that we least expected.

That “something” is a class of chemicals called endocrine disruptors, and Dr. Vicki Blazer, a fisheries biologist at the United States Geological Survey, thinks the chemicals are responsible for the high concentrations of intersex fish found in the Potomac, and other rivers in the mid-Atlantic.

https://cushieblog.com/2025/12/30/environmental-issues-and-cushings/

Graphic Era Hospital has achieved a remarkable mileston by successfully treating two complex cases of the rare hormonal disorder Cushing’s Disease in Dehradun. The hospital’s experts used advanced technology and surgical skills to give the patients a new lease on life, marking this significant achievement.

https://cushings.invisionzone.com/topic/57868-graphic-era-hospital%E2%80%99s-milestone-treatment-of-two-complex-cases/

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/

In the past year alone I’ve seen 5 doctors who couldn’t tell me the time. They made me feel like I was crazy. Even when I got double vision in my right eye and had to wear an eye patch for 3 months. No one could figure out why.  I still have vision disturbances but after two med packs of steriods the double vision went away.

https://cushingsbios.com/2025/09/30/shannon-pituitary-bio/

A 29-year-old Japanese pregnant woman, G5P3A1, conceived spontaneously and was referred to our hospital because of uncontrolled hypertension at 24 weeks of gestation. On admission, she presented with physical findings characteristic of Cushing's syndrome (CS), such as moon face, buffalo hump, and reddish-purple striae. Laboratory examination revealed hyperglycemia and hypercortisolism with suppressed adrenocorticotropic hormone levels. Imaging studies revealed a right adrenocortical adenoma, and the patient was clinically diagnosed with adrenal CS. 

https://cushings.invisionzone.com/topic/57924-adrenal-cushing%E2%80%99s-syndrome-in-pregnancy-complicated-by-fetal-growth-restriction-following-retroperitoneoscopic-adrenalectomy/

Comment from LinkedIn:

Congratulations Mary! You have helped more lives than you will ever know including mine. I am forever grateful for finding your website 18 years ago when I was finally diagnosed with Cushings Disease after a 2-year search for answers. Thank you ?

Read more at LinkedIn

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/

I’ve been gaining weight for about 3 1/2 yrs since having my thyroid removed due to a 25 yr old nodule that was calcified. My thyroid levels have always been good, before and after removal. There were A typical cells in the nodule, that’s why they advised removing the thyroid.

As I gain weight and have lumps of inflammation now over all of my body, all I have been told is to eat less and exercise more. Even though I have told my drs that I barely eat at all.

https://cushingsbios.com/2025/11/30/laura-f-undiagnosed-bio/

I was drawn to this blog post because the author mentioned that she had both Cushing’s and cancer, a kind of unusual combination.

1974 to Today: Seal it up
By Experience
I still haven’t heard what the consensus is on my aftercare: Cushing’s and Cancer. I don’t know what I will be expecting to feel like after surgery. My endocrinologist said that I should get sick after the surgery and need some kind of …
1974 to Today – http://1974totoday.blogspot.com/

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/

We present a 9-year-old boy who presented at age 4 with cyclical Cushing syndrome and was eventually diagnosed with a novel, previously unreported, unpublished variant in PRKAR1A associated with Carney complex. He was treated with unilateral left adrenalectomy. At 1-year follow-up, he continues to be in remission of his symptoms of Cushing syndrome.

https://cushings.invisionzone.com/topic/57870-unilateral-adrenalectomy-for-pediatric-cyclical-cushing-syndrome-with-novel-prkar1a-variant-associated-carney-complex/

Cushing syndrome (CS) and Mild Autonomous Cortisol Secretion syndrome (MACS) are states of endogenous hypercortisolemia, associated with multiple metabolic complications.

https://cushings.invisionzone.com/topic/57887-liver-impairment-and-medical-management-of-cushing-syndrome-and-macs-provisionally/

We describe a case of a 56-year-old woman with a history of recurrent pituitary adenoma, not well followed, and known comorbidities of coronary artery disease, hypertension, and type 2 diabetes mellitus. She arrived with severely high blood pressure and signs pointing to hypercortisolism. Further evaluation revealed left ventricular hypertrophy, reduced global longitudinal strain, and preserved left ventricular ejection fraction, consistent with heart failure with preserved ejection fraction (HFpEF). Workup for amyloidosis was negative.

This case highlights that chronic hypercortisolism may cause pathophysiological changes in the heart, leading to HFpEF, and may induce myocardial fibrosis and impaired myocardial mechanics, producing an echocardiographic pattern that can mimic infiltrative cardiomyopathy. Recognition of this overlap is crucial to avoid misdiagnosis and to ensure timely endocrine and cardiovascular management.

https://cushings.invisionzone.com/topic/57888-global-longitudinal-strain-reduction-with-apical-sparing-in-cushing-syndrome-related-heart-failure-with-preserved-ejection-fraction-hfpef/

“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/

After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving...

https://cushingsbios.com/2026/05/04/dee-dee-pituitary-bio/

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 Cushing syndrome and mild autonomous cortisol secretion experienced similar degrees of sleep impairment.

https://cushings.invisionzone.com/topic/57907-sleep-impairment-similar-in-cushing-syndrome-mild-autonomous-cortisol-secretion/

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/

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 (CD) is a clinical syndrome caused by excessive secretion of adrenocorticotropic hormone (ACTH) from a pituitary corticotroph adenoma, resulting in adrenal cortical hyperplasia and overproduction of cortisol. The T-box transcription factor (TPIT) is crucial for regulating ACTH secretion in pituitary corticotroph adenomas. This study aims to explore the ubiquitin-mediated degradation of TPIT and identify potential pharmaceutical agents for treating CD.

https://cushings.invisionzone.com/topic/57874-the-stub1-tpit-axis-regulates-the-secretion-of-adrenocorticotrophic-hormone-in-cushing-disease/

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/

Graphic Era Hospital has achieved a remarkable mileston by successfully treating two complex cases of the rare hormonal disorder Cushing’s Disease in Dehradun. The hospital’s experts used advanced technology and surgical skills to give the patients a new lease on life, marking this significant achievement.

https://cushings.invisionzone.com/topic/57868-graphic-era-hospital%E2%80%99s-milestone-treatment-of-two-complex-cases/

We report the case of a 29-year-old male who presented with new-onset diabetes mellitus, resistant hypertension and significant weight gain. Physical examination revealed features consistent with Cushing’s syndrome. 

https://cushings.invisionzone.com/topic/57889-a-silent-invader-asymptomatic-rhodococcus-infection-unmasked-in-a-patient-with-ectopic-acth-dependent-cushing%E2%80%99s-syndrome/

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/

Lenise passed away Wednesday, Oct. 2, 2002 at 23 years old, just after her surgery.

Read more at https://cushingsbios.com/2021/10/02/in-memory-of-lenise-petersen-october-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/

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/

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/

We present a 9-year-old boy who presented at age 4 with cyclical Cushing syndrome and was eventually diagnosed with a novel, previously unreported, unpublished variant in PRKAR1A associated with Carney complex. He was treated with unilateral left adrenalectomy. At 1-year follow-up, he continues to be in remission of his symptoms of Cushing syndrome.

https://cushings.invisionzone.com/topic/57870-unilateral-adrenalectomy-for-pediatric-cyclical-cushing-syndrome-with-novel-prkar1a-variant-associated-carney-complex/

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/

After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving...

https://cushingsbios.com/2026/05/04/dee-dee-pituitary-bio/

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

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/

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/

Graphic Era Hospital has achieved a remarkable mileston by successfully treating two complex cases of the rare hormonal disorder Cushing’s Disease in Dehradun. The hospital’s experts used advanced technology and surgical skills to give the patients a new lease on life, marking this significant achievement.

https://cushings.invisionzone.com/topic/57868-graphic-era-hospital%E2%80%99s-milestone-treatment-of-two-complex-cases/

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/

I had very, very thick hair and it’s now extremely thin. I have a type of rash on my face which has got worse over the years. It seems like my legs and arms are much thinner than they used to be but my abdomen is getting larger, mainly my upper abdomen. I don’t have any stria but have similar marks on my legs especially around my knees. My skin marks easily. I also seem to have a small buffalo hump on my back. Seem to have brain fog but usually put that down to age. Feel tired all the time.

https://cushingsbios.com/2025/10/01/margaret-s-maggierose-possible-adrenal-bio/

Thursday, October 3, 2002

Alice died of lung cancer and Cushing’s.

Read more at https://cushingsbios.com/2025/10/03/in-memory-of-alice-baker-october-3-2002/

We present a 9-year-old boy who presented at age 4 with cyclical Cushing syndrome and was eventually diagnosed with a novel, previously unreported, unpublished variant in PRKAR1A associated with Carney complex. He was treated with unilateral left adrenalectomy. At 1-year follow-up, he continues to be in remission of his symptoms of Cushing syndrome.

https://cushings.invisionzone.com/topic/57870-unilateral-adrenalectomy-for-pediatric-cyclical-cushing-syndrome-with-novel-prkar1a-variant-associated-carney-complex/

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

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/

After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving...

https://cushingsbios.com/2026/05/04/dee-dee-pituitary-bio/

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/

I have recently been diagnosed with cushings syndrome and awaiting removal of gland and tumour.

https://cushingsbios.com/2025/11/07/janet-janetelizabeth-adrenal-bio/

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/

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/

Diabetic ketoacidosis is an exceptionally rare initial manifestation of ectopic adrenocorticotropic hormone (ACTH) syndrome. A 42-year-old woman with multiple cardiovascular risk factors was admitted to the emergency room with diabetic ketoacidosis. 

https://cushings.invisionzone.com/topic/57925-diabetic-ketoacidosis-as-the-first-manifestation-of-ectopic-cushing%E2%80%99s-syndrome/

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/

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/

Graphic Era Hospital has achieved a remarkable mileston by successfully treating two complex cases of the rare hormonal disorder Cushing’s Disease in Dehradun. The hospital’s experts used advanced technology and surgical skills to give the patients a new lease on life, marking this significant achievement.

https://cushings.invisionzone.com/topic/57868-graphic-era-hospital%E2%80%99s-milestone-treatment-of-two-complex-cases/

This case highlights the necessity of providers to be aware of potential complications of endocrinological disorders. The risk of thromboembolism is more commonly present in patients with Cushing syndrome, who have risk factors such as obesity, surgery and invasive diagnostic procedures.

https://cushings.invisionzone.com/topic/57876-hypercoagulability-in-cushing-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/

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/

We’re looking for caregivers to loved ones diagnosed with Cushing's Disease or patients diagnosed with Cushing's Disease to participate in a research study. 

 Who: Patients and caregivers of loved ones

 What: 30-minute Online Survey

 Compensation: $60.00

Sign up here: https://rarepatientvoice.com/CushingsHelp/

I have been diagnosed with Subclinical Cushings Disease.

Also, included in that diagnose is rare form of cushings; Amiah macnodular independent hyperplasia?

https://cushingsbios.com/2025/10/02/alma-diane-adrenal-bio/

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/