Is Cushing’s really that rare? Or is it simply undiagnosed?

Posted on December 18, 2025 by MaryO

Here are some thoughts from the Cushing’s Help message boards over the years.

  • Is this really such a rare disease, or more of a rare diagnosis? I mean, I remember when Thyroid issues were taboo and non-existant to regular docs, but now they all see to know something and are recognizing the issues…Seriously, if only 10-15 in every million have Cushings, how on earth did a well visited forum get created???
  • My personal opinion is a rare diagnosis….I see people with acne covered red moon faces, frontal obesity and a hump and just shake my head. If I can talk to them I will mention it but I am super sensitive about my weight and don’t want to insult anyone.
  • I believe it is both. The disease itself is rare, but more and more people are coming forward. I don’t think it is as rare as they think it is in research. It is also rare to find an educated physician for this disease. They are out there, but why aren’t there more? This makes for rare diagnosis. It is not like I can walk down the street and see tons of people with cushings symptoms, but now that I am aware of it I DO see some.
  • i believe until it is not so underdiagnosed we will never know if it is actually rare.
  • I don’t think it’s as rare as doctors think it is. I think the problem is they send people out based on individual symptoms versus looking at them all as a package. For example I got sent to: a psychiatrist for depression, a gastroenterologist for stomach stuff (diarrhea and constipation), an endocrinologist for the hormone/insulin issues, a neurologist for the headaches, an OB/GYN for the “missed periods” and an opthamologist for the vision issues. None of them talk to each other and none of them work together. How could they make a diagnosis of anything other than their specialty based on that? I think until docs take a team approach, it won’t be diagnosed more.
  • We all tend to think it is rarely diagnosed, more than it being a rare disease. Then, you get into the whole idea of, what causes it anyway?

    Who knows? Nobody knows for sure, but say it is from our environmental issues. Maybe it’s from chemicals we are exposed to, and this is how our bodies react. Then if it is environmental, you will start to see more and more people with it because more and more people are exposed to the same environmental issues. Maybe the same thing causes cancer in some people, and pituitary tumors in others. I’m not saying this is the case, I’m just throwing ideas out there. You didn’t hear of Chronic Fatigue and Fibromyalgia 30 yrs. ago either. Maybe in another 30 yrs., Cushing’s will be a disease that most people know about. That would mean more people getting diagnosed, and it would seem that Cushing’s would be on the rise, but awareness is probably the key.

  • What do YOU think?

Filed under: Cushing's, Rare Diseases | Tagged: , , , , , | 1 Comment »

Bone Material Strength Index Is Low in Patients With Cushing’s Syndrome Even After Long-term Remission

Posted on December 18, 2025 by MaryO

I sure know this to be true, even though my surgery was in 1987

Abstract

Objective

Hypercortisolism in endogenous Cushing’s syndrome (CS) results in decreased bone mineral density (BMD) and increased fracture risk. Although after remission BMD improves, the fracture rate remains elevated, suggesting that BMD may not adequately reflect fracture risk in this group. The aim was to evaluate bone material properties, another component of bone quality, using impact microindentation in patients with CS in remission.

Methods

Cross-sectional study in 60 CS patients and 60 age-, sex-, and BMD-matched controls at a tertiary referral center between 2019 and 2021. Bone material strength index (BMSi) was measured by impact microindentation using the OsteoProbe® device at the tibia. In addition, laboratory investigation, BMD, and vertebral fracture assessment were performed.

Results

By design, patients and controls were comparable for age (median age 56.5 years), sex (48 women), and BMD at the lumbar spine and femoral neck. They were also comparable regarding the number of fragility fractures (21 vs 27, P = .22). The median time of remission in patients was 6 years (range 1 to 41). Despite comparable BMD, BMSi was significantly lower in CS patients compared to controls (76.2 ± 6.7 vs 80.5 ± 4.9, P < .001). In CS patients, BMSi was negatively correlated with body mass index (r = −0.354, P = .01) but not related to the presence of fracture, physiological hydrocortisone replacement use, other pituitary insufficiencies, or time since remission.

Conclusion

Bone material properties remain altered in patients with endogenous CS, even after long-term remission. These abnormalities, known to be associated with fractures in other populations, may play a role in the persistent bone fragility of steroid excess.

Filed under: Cushing's, symptoms | Tagged: , , , | Leave a comment »

You Know You’re Chronically Ill When You…

Posted on December 17, 2025 by MaryO

…have a pajama collection.

…call the pharmacist and she recognizes your voice before you tell her what it is.

…are psyched to get a computer table tray for sitting in bed as a gift.

…find out that you can order a three month supply of meds online and you think it’s great.

…share and discuss journal articles with your doctor.

…have an inbox full of emails all from people with your disease or related to your disease.

…get updates from MedScape.

…set up your pills a month ahead of time in pill holders.

…have pill stashes in your car, purse, backpack, etc.

MaryO’Updates:

…have Dr F, Dr L and/or Dr IMMC on speed dial.

…bought a case of sharps containers on eBay.

…have a hospital bag always ready to go.

…have a “Got Hump” tattoo

…share pictures online of your stretch marks like they were badges of honor

…you know why there’s a zebra in my avatar

MaryOZebra

MaryO’Zebra

Added by Facebook friends:

…know approximately how much your urine output is in mL’s before you go because you’ve measured it so often before.

…When a specialists at a leading university hospital tells you “you are too complicated”.

…when multiple specialists at multiple leading hospitals tell you your case is complicated! (had to add to that!)

…when you only know the day of the week by your pill container!!

…when you get to park in the handicap spots and you’re only 25 years old!!

…you know to tell the person who’s drawing your blood to ice and centrofuge your vile for the ACTH test!!

…you can’t make plans beyond the next hour because you don’t know how sick you’ll feel!!

…when the most excitement you’ve had in a month is your drs appt! And you’re looking forward to your next appt so you can get out of the house!!

…When the people who work in the lab great you like Norm on Cheers when you arrive.

…When you know which vein is the “sweet vein.”

Feel free to add your own! 🙂

Filed under: Cushing's, General Health, Rare Diseases | Tagged: , , , , | 1 Comment »

Medic Alert Bracelets

Posted on December 16, 2025 by MaryO

Since the last topic was about Adrenal Insufficiency, it seemed that a great next topic would be about Medic Alert Bracelets.

Many doctors insist that everyone who has had pituitary or adrenal surgery have a bracelet – and some will even tell patients what they should say on them.

While I was still a patient at the NIH (National Institutes of Health) after my pituitary surgery, I was given my first bracelet along with my kit in care of adrenal crisis.  I had to learn to give myself a shot before I could go home.

Now, my endo checks mine at every visit to be sure I’m wearing my bracelet and reads it to be sure it’s still legible and checks to see what the text says.

He feels that the bracelets – and he insists that they LOOK like medic alert bracelets, not disguised as jewelry – are life savers.

I’m not so sure – I read stories on the message boards that people have gone into AI (adrenal insufficiency and no one has ever looked at their bracelet.  That was certainly the case for young Sam.  Her mom had instructions everywhere, none were heeded and the situation rapidly turned disastrous.

…We have dealt with Addison’s for 7 years; but I have handled everything. Apparently the vials of solu-cortef with step-by-step instructions hanging on the bulletin board in the kitchen, medicine cabinet and in every vehicle somehow missed his attention…  (read the whole story at survive the journey: Stars Go Blue)

A Paramedic wrote on the message boards:

I’d like to add a couple things from the perspective of a Paramedic…

A lot of us are not taught about adrenal insufficiency during our education….nor do many of us (if any at all) have a protocol to administer Injectable for AI unless we are able to contact the ER doctor for permission. So…if any of you should have an AI crisis please gently nudge your paramedic to contact the receiving physician for permission to administer the medication. I know this sounds like a lot of responsibility on the part of the patient…but you have to realize that we’re taught to recognize the most common life threats and endocrine disorders (other than diabetes) most usually do not present with life threats (we all know that as cushing’s is more recognized that this will change)…and our protocols cover the most common life threats….so while we may recognize that you are hypotensive and need fluids (IV) and are sweaty, nauseated, decreased level of responsiveness etc…we are not equipped to deal with the actual cause unless you help educate us….

Also…please don’t get angry with us….if we are having problems understanding…just gently insist that a call be made to your doctor or the receiving ED (usually not feasible for us to call your doctor since they do not come to the phone for just anybody but if you have access to them, as many cushies do, it would be great to talk to them)…

Paramedicine is evolving….someday soon, hopefully, our education will include more diagnostic skills…untill just in the past 5 years or so we were NEVER to make a diagnosis at all…just treat the symptoms!!!! So there is hope out there for futher understanding of such a critical problem for those without adrenal (or asleep adrenals) glands….

The medical alert jewerly is a life-saver and we do look for it….

So, the questions for discussion are:

  • Do you have a medical alert bracelet
  • Does your doctor check on it or suggest proper wording.
  • If you have one, has any medical staff read it during a crisis
  • And… what does yours say?

Filed under: adrenal crisis, Cushing's, pituitary | Tagged: , , , , | 15 Comments »

Misconceptions About Cushing’s

Posted on December 14, 2025 by MaryO

Cushing’s.  So many people are confused by what it is and what it isn’t.  They may have heard of it because a dog they know has it – or, these days, a horse, ferret, rat.  Seems it’s way more common in lots of animals but not people.

If people have heard of the “animal version” they might say “Yeah, my dog had that and it was easy to diagnose. We just gave him medication…”

When we first started having bios on the website, sometimes people would say that they had Cushions Disease.  At first I wondered about that but then it started to make more sense.  If you’ve never heard of the disease,  the doctor mumbles something.  You know you’re a little “fluffy” and cushions makes a lot of sense.

Twice in the last week I’ve seen Cushing’s described as Crushings Disease.  That sort of makes sense, too.  Cushing’s crushes your plans, relationships, credibility, pretty much everything.

Other misconceptions involve Cushing’s symptoms.  Others, especially doctors, will see you gain weight and assume you’re eating too much and a good diet will fix everything.  Or see that you’re depressed (who wouldn’t be!) and offer anti-depressants.

Doctors may say that Cushing’s is too rare, that they’ll never see a case of it in their practice.  But rare doesn’t mean that no one gets it.  Rare doesn’t mean that doctors shouldn’t test for it.

Then, the anatomy just isn’t right.  People say that they have a brain tumor instead of a pituitary tumor.  I just read this on another site: The pituitary gland is on the bottom of the brain… Umm – not exactly ON the bottom of the brain but maybe close enough for people to get an idea.

What sorts of things about Cushing’s/Cushions/Crushings that just weren’t quite right?

Filed under: Cushing's, Rare Diseases | Tagged: , , , , , , | 1 Comment »

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