Lower health-related quality of life observed in patients with Addison’s disease, Cushing’s syndrome

Posted on April 23, 2026 by MaryO

Patients with hypothalamic-pituitary-adrenal axis dysregulations report health-related quality of life that is far lower than that of the general population, according to findings of a prospective study.

“In most centers, both patients with adrenal deficiency and patients with Cushing’s syndrome are managed by the same team,” Charlotte DeBucy, of the Center for Rare Adrenal Diseases at Cochin Hospital in Paris, and colleagues wrote. “Despite the usual perception that both types of diseases alter quality of life, few studies have similarly investigated the impact of cortisol dysregulations on [health-related quality of life]. Such studies are important, however, to identify meaningful differences that would be important to consider to improve management and outcome.”

De Bucy and colleagues analyzed data from 343 patients with Addison’s disease or Cushing’s syndrome followed in routine practice at a single center in France between September 2007 and April 2014 (78% women; mean age, 48 years; mean length of time since diagnosis, 7.8 years; 61% married). All participants completed the short-form health survey (SF-36), a survey of health-related quality-of-life measures and the 12-item general health questionnaire (GHQ-12), a measure of psychological well-being or distress. Questionnaires were completed at baseline and at 6, 12, 24 and 36 months. Patients with Cushing’s syndrome were also assessed for cortisol status at baseline and at follow-up evaluations.

Within the cohort, 206 had Cushing’s syndrome of pituitary origin, 91 had Cushing’s syndrome of adrenal origin and 46 patients had Addison’s disease; 16% were included in the study before any treatment was initiated.

Researchers found that mean standard deviation scores for psychological and physical dimensions of the SF-36 were “well below” those of the general population, but diagnosis, cortisol status and time since treatment initiation all influenced individual scores. Cushing’s syndrome of pituitary origin was associated with worse health-related quality of life, especially for physical functioning, social functioning and mental health. In Cushing’s syndrome, health-related quality of life was generally worse during periods of hypercortisolism, but scores for these patients were lower than those of patients with Addison’s disease even during periods of hypocortisolism or eucortisolism, according to the researchers.

“The differences were particularly large for physical functioning and role-physical subscales,” the researchers wrote.

They also found that mental health scores for patients with Cushing’s syndrome decreased during periods of hypocortisolism, whereas other adrenal conditions were associated with higher mental health scores.

More than half of patients, regardless of diagnosis and cortisol status, had psychological distress requiring attention, according to the GHQ-12 survey.

“Our findings are important for clinical practice,” the researchers wrote. “The consequences of cortisol dysregulation on [health-related quality of life] should be considered in the management of adrenal insufficiency and even more (in) Cushing’s syndrome patients, and these consequences can be long term, affecting apparently cured patients. Early information on these consequences might be helpful for patients who often perceive a poor quality of life as the result of inadequate disease control or treatment. Even if this possibility exists, knowing that adrenal diseases have long-lasting effects on [health-related quality of life] may be helpful for patients to cope with them.” – by Regina Schaffer

Disclosure: L’association Surrénales supported this study. The researchers report no relevant financial disclosures.

From http://www.healio.com/endocrinology/adrenal/news/in-the-journals/%7B842655ce-e710-4476-a3c2-2909b06434ed%7D/lower-health-related-quality-of-life-observed-in-patients-with-addisons-disease-cushings-syndrome

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Urinary free cortisol analyses: Enhancing their clinical performance in Cushing’s syndrome management by means of LC-MS/MS

Posted on April 10, 2026 by MaryO

Highlights

  • An LC-MS/MS method was developed for UFC, cortisone and dexamethasone monitoring.
  • Direct injection was found to be suitable, even in cases of hypocortisolism.
  • Cortisone and cortisol/cortisone ratio complementary role in UFC tests was proved.
  • Dexamethasone monitoring in urine allowed to exclude invalid samples.
  • Population-based LC-MS/MS reference ranges were established.

Abstract

24 h urinary free cortisol (UFC) analysis constitutes one of the three first level recommended tests in Cushing’s syndrome (CS) diagnostic confirmation work up. However, it occasionally leads to inaccurate results due to the use of immunoassays (IAs) or the concomitant administration of exogenous glucocorticoids, among others.
This study aimed to develop a rapid and accurate LC-MS/MS method which may ultimately replace the use of IAs, and also provide relevant clinical information through the simultaneous monitoring of UFC, cortisone, and dexamethasone.
An LC-MS/MS method based on direct injection approach was developed and fully characterized for the quantitation of the target analytes. A population-based reference range was established, and the potential supporting role of cortisone and cortisol/cortisone ratio was comprehensively assessed in patients under CS follow-up or clinical suspicion for hypercortisolism. The presence of dexamethasone was also assessed in order to exclude invalid samples from evaluation.
Significant differences were observed for cortisone and cortisol/cortisone ratio between the control group and patients with hyper−/hypocortisolism, and an ideal level of biochemical agreement was observed with UFC LC-MS/MS values when the combination of both biomarkers was considered. Dexamethasone was detected in up to 7.7% of the studied population.
The herein presented LC-MS/MS approach not only offers the possibility of discontinuing the use of IAs, but also provides additional biomarkers which are significantly relevant in CS management, thus enhancing the overall clinical performance of UFC analyses.

Introduction

Cushing’s syndrome (CS) is characterized by a state of hypercortisolism that can be detected and monitored by means of clinical laboratory tests, such as 24 h urinary freecortisol (UFC). UFC measurement constitutes one of the three first level recommended tests, along with overnight 1 mg dexamethasone suppression and late night salivary cortisol tests [1], [2].
UFC levels are in general highly variable, and at least two 24 h urine collections are necessary for screening/monitoring of CS [1], [2]. In addition to this, 24 h urine samples are often further required due to unexpected or biochemically inconsistent results. This makes the process even more tedious for the patient, and ultimately causes delays in CS diagnosis and management.
Such discordant results may derive from an undeclared use of exogenous glucocorticoids or analytical limitations, among other reasons. The latter occurs especially when UFC analyses are performed by immunoassays (IAs), due to their limited specificity.
Therefore, improvements in UFC tests concerning the analytical methodology, and the inclusion of complementary biomarkers that reinforce their clinical interpretation in the light of unexpected/inconsistent results, appear necessary.
Besides, the simultaneous monitoring of exogenous glucocorticoids in UFC analyses, which is not often considered in clinical practice, should be included.
Liquid chromatography-tandem mass spectrometry (LC-MS/MS) has been suggested as the most suitable alternative for UFC quantification [3], [4], [5], [6], [7], since it overcomes IAs analytical limitations. Besides, it also allows for the simultaneous monitoring of different analytes.
In the context of CS management, the simultaneous LC-MS/MS determination of UFC and cortisone, as well as the use of cortisol/cortisone ratio have been previously suggested [8], [9], [10], [11], [12], [13], [14], [15], [16], [17], [18], [19]. With regard to the monitoring of exogenous glucocorticoids, at our center (Hospital Universitario Son Espases, Palma, Spain), it would be of particular importance in the case of dexamethasone. This is because the UFC determination is often followed by an overnight 1 mg dexamethasone suppression test, and its intake may occur by mistake prior or during urine collection.
Despite their advantages, LC-MS/MS methods usually require time-consuming sample preparations, e.g. liquid-liquid extraction (LLE) protocols [20], thus not allowing to completely avoid using IAs in most clinical laboratories. In Spain, to the best of our knowledge, all hospitals in the public healthcare system still use IAs for UFC analysis. Mass spectrometry is only available at tertiary-care centers or academic hospitals, where is still used in combination with IAs to cope with the large volume of samples received on a daily basis. In this case, the use of complementary biomarkers in LC-MS/MS UFC analyses would be of particular interest, as discordant results may occur between methods due to IA analytical limitations.
For all these reasons, in the herein presented study, a novel, rapid and accurate LC-MS/MS method based on direct injection approach for the quantitation of UFC, cortisone, and dexamethasone was developed. Given the lack of standardization in reference ranges, appropriate population-based LC-MS/MS reference values were established.
Most research only focuses on the ability of cortisone and cortisol/cortisone ratio to discriminate ectopic ACTH production from other subtypes of CS [3], [4], [5], [6], [7], [8], [9], [10], [11], [12], [13], [14], [15], [16], [17], [18], [19]. For this reason, this study assessed their suitability as complementary biomarkers, and therefore their ability to reinforce the clinical interpretation of UFC analyses.
To the best of our knowledge, they have not been previously assessed in the context of hypocortisolism. This would be of substantial importance in the follow-up of CS since adrenal insufficiency secondary to adrenalectomy/pituitary surgery or pharmacological treatment (e.g. ketoconazole, metyrapone) may occur. Therefore, such scenario was further considered.

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How To Tell if You Have “Cortisol Face” And What to Do About It

Posted on April 9, 2026 by MaryO

If you have been anywhere near wellness content lately, you have encountered cortisol face or “moon face”.

Posts claim that stress is literally reshaping people’s faces. The coverage tends to split into two camps: content that oversells the trend or content that dismisses it entirely. The more useful truth sits in the middle.

Cortisol face is not a medical term, but the facial feature it describes is real.

Endocrinologists at Ohio State University’s Wexner Medical Center clarify that what it points to has been documented in medicine as moon facies, caused by fat accumulation and soft tissue swelling. Moon facies is the clinical term. Cortisol face is the social media translation. They describe the same phenomenon but carry very different implications for how concerned you should be.

When the body produces too much cortisol it can cause Cushing’s syndrome, a hormonal disorder whose symptoms include weight gain, inflammation and facial rounding, per the Cleveland Clinic. That is what people online are calling cortisol face or moon face. Cushing’s syndrome affects about 40 to 70 people per million according to the NIH, and its symptoms extend well beyond a round face to include skin that bruises easily, a puffy neck and a worsening upper-back hump.

Can Everyday Stress Change Your Face?

UCI Health endocrinologist Dr. Mehboob Hussain says everyday life stressors are unlikely to be the cause of facial puffiness. More common culprits include a high-salt diet, eczema, allergies and sleep position.

That said, chronically elevated cortisol from sustained stress, poor sleep or overexercising does produce real effects. It increases sodium retention, causes the body to hold water in soft tissues including the face, and shifts fat distribution toward the face and midsection. A

board-certified endocrinologist at Trinity Health confirms that inappropriately elevated cortisol over a long period can cause more rounding and weight gain in the face and abdomen. There is a wide gap between that and a hectic week at work.

What to Watch For

University of Colorado endocrinologists recommend looking for multiple symptoms together. Signs worth bringing to a doctor include persistent facial rounding developing over weeks or months alongside weight gain in the abdomen, thin arms and legs, purple stretch marks, increased acne or facial hair in women, easy bruising or muscle weakness.

Texas A&M’s Dr. Maria Olenick offers a practical rule: true moon face does not just appear or disappear from one day to the next. Temporary morning puffiness, swelling after a salty meal or a rounder face with no other symptoms are probably not cause for concern. One additional flag: long-term corticosteroid medications like prednisone are the most common non-tumor cause of clinical moon face, so mention any facial changes to your doctor if you are on these.

What Actually Lowers Cortisol

Sleep is the most evidence-supported starting point. Chronic sleep issues are directly associated with higher cortisol levels per Healthline.

A meta-analysis of 58 randomized controlled trials found mindfulness and relaxation interventions were the most effective approaches for measurably reducing cortisol.

Moderate exercise helps, but high-intensity overtraining can raise cortisol further, worth knowing if punishing workouts are already part of a stressed routine.

OSF HealthCare notes that magnesium-rich foods including leafy greens, avocados and dark chocolate support cortisol balance, while refined sugars can spike blood sugar and trigger further release. Walking in natural settings has measurably reduced salivary cortisol in peer-reviewed research.

Alcohol and caffeine both raise cortisol and are worth pulling back when symptoms are present. When to See a Doctor If facial changes are persistent, cluster with other symptoms or have not responded to lifestyle changes over several weeks, get evaluated.

UCI Health notes that blood, urine and saliva cortisol tests are available, and a primary care provider can handle initial testing before referring to an endocrinologist if needed.

The biology behind cortisol face is real. A rough week probably is not causing it. But if changes persist and stack up alongside other symptoms, it is worth taking seriously.

This article was created by content specialists using various tools, including AI.

Read more at: https://www.miamiherald.com/living/article315266634.html#storylink=cpy

 

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Day 6, Cushing’s Awareness Challenge

Posted on April 6, 2026 by MaryO

In March of 1987, after the endo finally  confirmed that I had Cushing’s, I was sent to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.

When I left this hospital after a week, we didn’t know any more than we had before.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection.

My husband asked my endo if it were his wife, if he would recommend this surgery.  The endo responded that he was divorcing his wife – he didn’t care what happened to her.  Oh, my!

I chose NIH – closest and free. After I was interviewed by the doctors there, I got a letter that I had been accepted into the clinical trial.

The night before I was admitted, I signed my will.  I was sure I was going to die there.  If not during testing, as a result of surgery.

The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Several were from Greece.

My first roommate was a nurse.  She spent the entire first night screaming in pain.  I was very glad when they moved me to a new room!

Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with – either a cure or dying. While I was at NIH, I was gaining about a pound a day!

During the time I was home the weekend  before surgery, a college classmate of mine (I didn’t know her) DID die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until reading the alumnae magazine a couple months later!  She was the same class, same major, same home-town, same disease…

We have a Scottish doctor named James Lind to thank for the clinical trial.  He  conducted the first ever clinical trial in 1747 and developed the theory that citrus fruits cured scurvy.  Lind  compared the effects of various different acidic substances, ranging from vinegar to cider, on groups of afflicted sailors, and found that the group who were given oranges and lemons had largely recovered from scurvy after 6 days.

I’d like to think that I advanced the knowledge of Cushing’s at least a little bit by being a guinea  pig in 1987-1989.

From the NIH: http://endocrine.niddk.nih.gov/pubs/cushings/cushings.aspx

Hope through Research

Several components of the National Institutes of Health (NIH) conduct and support research on Cushing’s syndrome and other disorders of the endocrine system, including the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute of Child Health and Human Development (NICHD), the National Institute of Neurological Disorders and Stroke, the National Cancer Institute, and the National Center for Research Resources.

NIH-supported scientists are conducting intensive research into the normal and abnormal function of the major endocrine glands and the many hormones of the endocrine system. Researchers continue to study the effects of excess cortisol, including its effect on brain structure and function. To refine the diagnostic process, studies are under way to assess the accuracy of existing screening tests and the effectiveness of new imaging techniques to evaluate patients with ectopic ACTH syndrome. Researchers are also investigating jugular vein sampling as a less invasive alternative to petrosal sinus sampling. Research into treatment options includes study of a new drug to treat the symptoms of Cushing’s syndrome caused by ectopic ACTH secretion.

Studies are under way to understand the causes of benign endocrine tumor formation, such as those that cause most cases of Cushing’s syndrome. In a few pituitary adenomas, specific gene defects have been identified and may provide important clues to understanding tumor formation. Endocrine factors may also play a role. Increasing evidence suggests that tumor formation is a multistep process. Understanding the basis of Cushing’s syndrome will yield new approaches to therapy.

The NIH supports research related to Cushing’s syndrome at medical centers throughout the United States. Scientists are also treating patients with Cushing’s syndrome at the NIH Clinical Center in Bethesda, MD. Physicians who are interested in referring an adult patient may contact Lynnette Nieman, M.D., at NICHD, 10 Center Drive, Room 1-3140, Bethesda, MD 20892-1109, or by phone at 301-496-8935. Physicians interested in referring a child or adolescent may contact Constantine Stratakis, M.D., D.Sc., at NICHD, 10 Center Drive, Room 1-3330, Bethesda, MD 20892-1103, or by phone at 301-402-1998.

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Day 2, Cushing’s Awareness Challenge

Posted on April 2, 2026 by MaryO

The Seven Dwarves of Cushing's

So, these are only seven of the many, many symptoms of Cushing’s.  I had those above – and I often felt like I looked like one of those little bearded dwarves.

Cushing’s affects every part of the body.  It’s not like when I had kidney cancer and only the kidney was affected.

Here are some of the many areas affected.

  • Progressive obesity and skin changes
  • Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
  • Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
  • Thinning, fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Acne

Women with Cushing’s syndrome may experience:

  • Thicker or more visible body and facial hair (hirsutism)
  • Irregular or absent menstrual periods

Men with Cushing’s syndrome may experience:

  • Decreased libido
  • Decreased fertility
  • Erectile dysfunction

Other signs and symptoms include:

  • Fatigue
  • Muscle weakness
  • Depression, anxiety and irritability
  • Loss of emotional control
  • Cognitive difficulties
  • New or worsened high blood pressure
  • Glucose intolerance that may lead to diabetes
  • Headache
  • Bone loss, leading to fractures over time
  • Hyperlipidemia (elevated lipids – cholesterol – in the blood stream)
  • Recurrent opportunistic or bacterial infections
Think you have Cushing’s?  Get to a doctor and don’t give up!

MaryO
         MaryO

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