Day 3: Cushing’s Awareness Challenge

Posted on April 3, 2026 by MaryO

me-tired

Sleep.  Naps.  Fatigue, Exhaustion.  I still have them all.  I wrote on my bio in 1987 after my pituitary surgery “I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.”

That seems to be changing back, at least on the weekends.  A recent weekend, both days, I took 7-hour naps each day and I still woke up tired. That’s awfully close to taking a whole day off to sleep again.

In 2006, I flew to Chicago, IL for a Cushing’s weekend in Rockford.  Someone else drove us to Lake Geneva, Wisconsin for the day.  Too much travel, too Cushie, whatever, I was too tired to stay awake.  I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead.  Amazing that I traveled that whole distance – and missed the main event 😦

This sleeping thing really impacts my life.  Between piano lessons, I take a nap.  I sleep as late as possible in the mornings and afternoons are pretty much taken up by naps.  I nod off at night during TV. One time I came home between church services and missed the third service because I fell asleep.

I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.

Since  mid-February, I have been doing physical therapy twice a week for 2 hours at a time for a knee injury (read more about that in Bees Knees).  I come home from that exhausted – and in more pain than I went.  I know it’s working and my knee is getting better, but it’s such a time and energy sapper.  Neither of which I can really spare.

Maybe now that I’m nearly 10  years out from my kidney cancer (May 9, 2006) I could theoretically go back on Growth Hormone again.  My surgeon says he “thinks” it’s ok.  I’m sort of afraid to ask my endo about it, though.  I want to feel better and get the benefits of the GH again but I don’t want any type of cancer again and I certainly can’t afford to lose another kidney.

I’ll probably just muddle through without it.  I always laugh when I see that commercial online for something called Serovital.  I saw it in Costco the other day and it mentions pituitary right on the package.  I wish I could take the people buying this, sit them down and tell them not to mess with their pituitary glands.  But I won’t.  I’ll take a nap instead because I’m feeling so old and weary today, and yesterday.

And tomorrow…

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Day 1: Cushing’s Awareness Challenge

Posted on April 1, 2026 by MaryO

April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

30-posts

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

April Fool's Day

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

Filed under: Cushing's, Diagnostic Testing, Rare Diseases, symptoms, Treatments | Tagged: , , , , , , , , , , , , , , , , , , , , , , | 2 Comments »

High cortisol: Symptoms and signs

Posted on January 8, 2026 by MaryO

When we become stressed out bodies release cortisol – the stress hormone – which helps us cope with challenges. Cortisol’s role is to convert protein into energy by releasing glycogen and counteract inflammation. When cortisol is released in the body temporarily, this is okay and won’t have long-lasting detrimental effects to health as it is a natural response to a stressor. But when cortisol levels remain high chronically it can eventually begin to tear your body down thus causing health complications. This is why numerous health experts recommend the reduction of stress as much as possible because in the long run it can harm our health.

High cortisol levels over the long term can destroy healthy muscle and bone, slow down healing, impair digestion, metabolism and mental function, and weaken the immune system. Additionally, adrenal fatigue has been linked to numerous other health conditions including fibromyalgia, hypothyroidism, chronic fatigue syndrome, arthritis, premature menopause, and many others. High cortisol levels are also associated with many unwanted symptoms which we will outline below.

High cortisol symptoms

If you’re concerned about your cortisol levels, the following signs and symptoms associated with high cortisol levels can alert you and prompt you to make the necessary changes in order to reduce cortisol levels.

  • Unexplained weight gain
  • Skin symptoms including acne, skin infections, lesions, thin-appearing skin, bruising, growing facial hair, and reddish purple streaks on skin
  • Muscle and bone symptoms like a deep pain in the bones, weak muscles, chronic backaches, increased risk of bone fractures
  • Gender specific changes such as women developing male-pattern hair growth, irregular menstrual cycles, low libido, infertility
  • Neurological symptoms such as depression, irritability, headaches, chronic fatigue, and anxiety
  • High blood pressure (hypertension)
  • Poor sleep or lack of sleep
  • Swelling of hands and feet

If you notice any of the above symptoms, you may want to have your cortisol levels checked to confirm diagnosis. Living with high cortisol levels over the long term can have detrimental effects on a person’s health. Treating high cortisol as soon as possible can lower the risk of long-term health problems.

Causes of high cortisol

There are two main causes of high cortisol: Chronic stress and more rarely, Cushing’s disease. Cushing’s disease is caused by a hormone-secreting tumor on the adrenal gland which results in the release more cortisol than required.

Living with chronic stress also leads to high cortisol because the release of cortisol is a natural response from the body when it is stressed. The hypothalamic–pituitary-adrenal [HPA] axis is what regulates the timely release of cortisol during acute stress, but when stress becomes chronic the feedback from the HPA becomes damaged and so cortisol continues to be released.

Conditions that can contribute to chronic stress and high cortisol include:

  • Depression
  • Panic disorder
  • Generalized anxiety disorder
  • Post traumatic stress disorder (PTSD)
  • Anorexia nervosa
  • Bulimia nervosa
  • Alcoholism
  • Diabetes
  • Severe obesity
  • Metabolic syndrome
  • Polycystic ovary syndrome (PCOS)
  • Obstructive sleep apnea
  • Working in shifts
  • End-stage kidney disease
  • Chronic pain

Tips to lower high cortisol

Here are some tips that can help you lower your high cortisol levels and thus prevent long-term health problems associated with high cortisol. [MaryO’Note:  These will not work if you have active Cushing’s!    You must remove  the source of your Cushing’s first.]

  • Eat a well balanced meal with plenty of fruits and vegetables, avoid sugars, consume low glycemic index foods, avoid processed foods, eat a wide variety of health foods to ensure you receive all essential vitamins and nutrients
  • Exercise on a regular basis
  • Take time out of each day to relax – listen to music, meditate, pray, perform your favorite hobby, anything that promotes relaxation
  • Take up yoga or tai chi
  • Ensure you are getting adequate sleep
  • Drink tea
  • Watch funny videos or hang out with a funny friend
  • Go for a massage
  • Do something spiritual – attend a service
  • Chew gum
  • Limit caffeine intake
  • Stretch

By incorporating these helpful tips into your life you will find that your high cortisol symptoms begin to diminish and your overall health begins to improve.

From http://www.belmarrahealth.com/high-cortisol-symptoms-signs-look/

 

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Sleep Impairment Similar in Cushing Syndrome, Mild Autonomous Cortisol Secretion

Posted on November 5, 2025 by MaryO

Patients with mild autonomous cortisol secretion (MACS) have similar sleep disturbances as patients with Cushing syndrome, according to results of a study published in the Journal of Clinical Endocrinology & Metabolism.

In both Cushing syndrome and MACS, varying degrees of hypercortisolism can affect circadian cortisol secretion and sleep.

Patients diagnosed with MACS (n=194) or Cushing syndrome (n=154) at the Mayo Clinic in the United States between 2019 and 2025 and healthy control individuals (n=89) recruited between 2019 and 2023 were evaluated for sleep outcomes using the Pittsburgh Sleep Quality Index (PSQI).

The MACS, Cushing syndrome, and control cohorts, of whom 73%, 89%, and 67% were women and 92%, 89%, and 91% were White, respectively, had median ages of 60, 48, and 56 years and a median BMI of 32, 34, and 28 kg/m2, respectively.

For sleep outcomes, all PSQI outcomes were worse among patients with MACS than control individuals (all P <.001). Among patients, more with Cushing syndrome vs MACS had:

  • Bad sleep quality (75% vs 58%; P <.001);
  • Sleep duration of less than 5 hours (24% vs 15%; P =.031);
  • At least 3 days of dysfunction due to daytime sleepiness (70% vs 56%; P =.011); and,
  • Higher total PSQI scores (mean, 12 vs 11; P =.005).

All outcomes of the Short Form 36 (SF-36) were significantly worse among patients with MACS than control individuals (all P <.001) and worse among patients with Cushing syndrome than MACS (all P £.004), except for the emotional limitation score (P =.002).

Similarly, patients with Cushing syndrome had lower Cushing Quality of Life (CushingQoL) scores than patients with MACS for physical (mean, 23.4 vs 44.9; P <.001), psychosocial (mean, 29.8 vs 46.7; P <.001), and overall (mean, 28.2 vs 46.2; P <.001) scores, respectively.

In Cushing syndrome and MACS, the researchers observed significant correlations between PSQI total scores and SF36 mental (r range, -0.50 to -0.40; both P <.001) and physical (r range, -0.35 to -0.28; both P <.001) component scores and CushingQoL overall (r range, -0.56 to -0.43; both P <.001), physical (r range, -0.57 to -0.38; both P <.001), and psychosocial (r range, -0.49 to -0.38; both P <.001) scores. In only MACS, PSQI was correlated with clinical severity (r, 0.17; P =.020). Among control individuals, PSQI total scores were correlated with SF36 mental (r, -0.29; P =.008) and physical (r, -0.45; P <.001) component scores.

Worse sleep was associated with every 1-kg/m2 increase in BMI among control individuals (b, 0.21; P =.005), inversely related with every 1-year increase in age among patients with Cushing syndrome (b, -0.12; P <.001), and inversely related with every 1-year increase in age (b, -0.08; P =.009) and positively related with every 1-point increase in clinical severity (b, 0.14; P =.044) and with female gender (b, 2.35; P =.002) among patients with MACS.

The major limitation of this study was the lack of objectively measured sleep outcomes.

The study authors concluded, “[W]e found that patients with MACS and [Cushing syndrome] demonstrate similar sleep impairment. Younger age, female sex and higher clinical severity score were associated with worse sleep in patients with MACS, while younger age was the only factor associated with poor sleep in patients with [Cushing syndrome].”

Disclosure: Multiple study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.

https://www.endocrinologyadvisor.com/news/sleep-impairment-similar-in-cushing-syndrome-mild-autonomous-cortisol-secretion/

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Sleep Disturbances in Patients With Cushing Syndrome and Mild Autonomous Cortisol Secretion

Posted on October 16, 2025 by MaryO

The Journal of Clinical Endocrinology & Metabolism, dgaf553, https://doi.org/10.1210/clinem/dgaf553

Abstract

Context

The impact of active hypercortisolism on sleep is incompletely characterized. Studies report impaired sleep in patients with Cushing syndrome (CS). Patients with mild autonomous cortisol secretion (MACS) demonstrate mild nocturnal hypercortisolism that could impact sleep.

Objectives

To characterize sleep abnormalities in patients with CS and MACS using the Pittsburgh Sleep Quality Index (PSQI), identify factors associated with poor sleep, and compare sleep abnormalities in patients with MACS versus referent subjects.

Methods

We conducted a single-center cross-sectional study of adults with active CS and MACS. Clinical and biochemical severity scores for hypercortisolism were calculated. Parallelly, we enrolled referent subjects. Quality of life was assessed using 1) Short Form-36 in all participants, and 2) Cushing QoL in patients with active hypercortisolism. Sleep quality was assessed using PSQI.

Results

PSQI was assessed in 154 patients with CS (mean 12, SD ±4.5), 194 patients with MACS (mean 11, SD 4.6), and 89 referents (mean 5, SD ±3.4). Patients with MACS exhibited shorter sleep duration, longer sleep latency, more severe daytime dysfunction, lower sleep efficiency, and a higher sleep medication use compared to referent subjects (P = <0.001 for all). Age-, sex, and BMI adjusted analysis demonstrated no differences in PSQI or its subcomponents between patients with CS and MACS (P >0.05 for all). In a multivariable analysis of patients with MACS, younger age, female sex and higher clinical hypercortisolism severity score were associated with impaired sleep. In patients with CS, only younger age was associated with poor sleep.

Conclusions

Patients with MACS demonstrate sleep impairment that is similar to patients with CS. Younger women with higher clinical severity of MACS are more likely to have impaired sleep.

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