cushing’s syndrome | Cushing's Bios

Jody (jodiann), Adrenal Bio

January 6, 2026

MaryO Adrenal, Adrenal Surgery, Golden Oldies, Treatments, Undiagnosed antidepressant, bilateral adrenalectomy, bilateral multinodular adrenal hyperplasia, BLA, Buffalo hump, cushing's syndrome, depression, diabetes, Golden Oldie, high cholesterol, hypertension, painful joints, pheochromocytoma, pneumonia, potassium, weight 1 Comment

Originally posted January 6, 2008

My mother had Cushing’s Syndrome with pheochromocytomas and had a bilateral adrenalectomy in 1968, but developed pneumonia post surgery and died after 3 months in intensive care.

I have thought that I was starting to develop symptoms and was even see in her endo Dr. for years, but I was always told I was being paranoid. Then in the past ten years I have gotten diabetes, the buffalo hump, put on 100 pounds, sore joints, hypertension, low potassium, high cholesterol etc.

I finally got a CT scan due to shortness of breath, and asthma, and they found bilateral multinodular adrenal hyperplasia.

If it’s not Cushing’s Syndrome, then is there something else adrenal wise it could be? It sure seems like Cushing’s to me.

Update December 30, 2007

I was diagnosed with Cushing’s syndrome approx. 3 years ago, after gaining over 100#s, developing diabetes, high blood pressure, fatigue,muscle weakness, moon face,buffalo hump,many tests later,it was discovered that I had bliateral multinodular adrenal hyperplasia,and got the diagnoses finally,,,

my mom died from complications from a bilateral adrenalectomy in 1978,she had Cushing’s syndrome with pheochromocytomas,,so I watched her symptoms develope, and had felt sure that I was getting the same things, and finally it was confirmed,just a little difference in the diagnosis,,

however,I am having a terrible time getting any understandin, sympathy, or belief, from my oldest daughter and her husband. They believe,and tell me often, that all I need to do is diet,and exercise,and I would lose this weight,and look like I used to,,it is so depressing,frustrating,and hurtful,,,

the depression you get with the disease just adds to make me feel worse,,I’m taking an antodepressant, but they brought this up again at Christmas,due to me not wanting them to invite people that I hadn’t seen since before the big wt. gain,and appearance changes,,,I ended up crying most of the afternoon,,and it makes me feel like such a baby,,,,

I’m usually pretty good about not needing any body but myself for support,,but this just really has hurt me. I’m thinking of sending them pictures of patients with the disease that I’ve gotten on the internet,,although the son in law said he had done his own research and found that diet and exercise apparently was all that we needed to do,,,don’t know where he found that info from though,,,

Update January 6, 2008

CUSHING’S SYNDROME

I was finally diagnosed in approx. 2004,after I had developed diabetes,htn.,shortness of breath, IBS, high cholestero,major muscle aches,moon face, buffalo hump,and my hands and feet had actually gone up one ring,and shoe size and also had on-going depression, mood swings, anger issues,I could watch myself gain weight.

I joined curves,went every night after work, and still gained weight,,even after exercise for those three months I never did seem to regain any muscle strength or ability,,I still had trouble getting up from chairs,or walking any distance, unless I was pushing a grocery cart, or a stroller,,,I had trouble even carrying my groceries in from the car,i would be so out of breath,,I had to get a disabled parking sticker so I could get into work,,,as I was so out of breath if I parked in the lot across the street it would take me three stops for breath each day to make it in,,,and tired, I was so tired,,my favorite past time was sleeping,,I could sleep any time, and still be tired.

My mom had died from complications from a bilateral adrenalectomy due to Cushing’s Syndrome in 1978, and I had watched all of the changes she and her body had gone through,and felt sure that I had developed the same things, but I couldn’t get anyone to listen to me,,,until a unrelated chain of events lead to me getting a U/S of my chest, and a sugested follow up,which I got on a larger scale which showed something wrong with my adrenal glands, then an MRI of them revealed bilateral multinodular adrenal hyperplasia,,,and finally I got hooked up with a good endocrinologist,,am now getting better follow-up of my diabetes and am on ketaconazole to suppress the cortisol production,,which has helped somewhat,and is stopping the excess cortisol,and no more weight gain,,,but hasn’t gotten rid of any of the symptoms either.

There are a lot of times that I look in the mirror and wonder where I am, or where the real me went to,,I don’t look like the me that I used to be at all,I have gained over 100lbs.in the past 13 years,,,and the fight against the depression, the muscle aches and pain, and fatigue every day or so exhausting,,my Doctor doesn’t want me to get the adrenalectomy due to the loss of all steroids,and how difficult it is to regulate them after the surgery. He also told me that you lose you fight or flight response because you don’t have any natural adrenaline,so your reaction time is not very good,,,,,and I have three grandkids that I drive iwth and take places,and I am a nurse and have to be able to react fast,,,,I also feel that he doesn’t think that I am a good candidate for surgery.

So there it is,,and here am I,,,trying to deal with everyday life, and the lack of any understading or sympathy from some of my family,as they feel that I have gained this weight on my own, and if I just ” took better care of myself,and got some exercise” I would feel and look better,,,,,,,as if any one would do this to themselves,,,,,,:>( ,,,,,,,,,,oh well,you guys understand at least,,,,,,thanks for listening

Margaret D (MargaretD), Pituitary Bio

December 3, 2025

MaryO Adrenal Surgery, Ectopic, Pituitary, Pituitary Surgery, Success Stories, Thyroid, Treatments ACTH, adrenal gland, bilateral adrenalectomy, BLA, cholesterol, cortisol, cure, cushing's, cushing's syndrome, diabetes, Dr. Johnny Delashaw, Dr. William H. Ludlam, ectopic, endocrine, God Bless, hair loss, hypertension, hypophysectomy, Internal medicine, ituitary Diseases Clinic, MRI, Pacific Northwest, PCOS, Pituitary gland, Polycystic ovary syndrome, Stretch marks, striae, success, surgery, Swedish Hospital, Swedish Neuroscience Institute, thyroid, tumor, update, weight 7 Comments

Original Bio:

My story spands over 20 years and may sound familiar to many with Cushings who read this. The first clue came when I was diagnosed at 19 yrs old with a thyroid tumor. The tumor turned out to be both solid and cystic… Cushings is a cystic disease.

Shortly after my thyroid surgery, I developed difficulties with having regular menstrual cycle. I was diagnosed with PCOS… Cushings is a cystic disease.

In the following years, I went up and down with my weight until I finally was 80lbs over and unable to lose any; I slowly lost my hair; I developed stretch marks in my abdomen and chest area; and I developed hypertension, diabetes, and bad cholesterol problems at a young age. I went to my doctor for help and was told I just needed to lose weight.

My symptoms kept getting worse with time.

In July of 2003 changed jobs and was hired by Dr Johnny Delashaw, Neurosurgeon @OHSU. This was a day of blessings in more way than one. Accepting this position brought changes to my professional career and BIG changes to my life.

As part of my job, Dr Delashaw asked me to work with the Pituitary Diseases Clinic and Dr Bill Ludlam. I was more than happy and very enthusiastic as my professional background is in Internal Medicine.

In the beginning, I was interviewing patients to get them ready for surgery and I would also see them for their 2 week post-ops. Soon after that, I got involved in conducting endocrine testing with Dr Ludlam. This was my information gathering stage.

Not long after that, I came to the realization that I may have Cushings and the thought scared me. It took me a month or so to gather enough courage to talk to Dr Ludlam and discuss my fears. (If anyone out there knows Dr L, you know how funny my last statement is since he is the most kind and caring of doctors). He LISTENED to me and did not make me feel like a fraud. I felt legitimate.

We ran the tests and did the MRI and – BOOM – I had a very large pituitary tumor and high cortisol levels. I was surprised but then not surprised.

I have undergone 2 pituitary surgeries with the second one resulting in a complete hypophysectomy. Despite no pituitary, I continued to have symptoms along with high levels of ACTH and cortisol and eventually had a BLA in Sept 2004.

I struggled through withdrawals after my BLA but like a trooper, I returned to work within a month. Thank God I worked for Dr Delashaw who was very understanding. I was doing well for a few months but then in March 2005 I started to have symptoms again. Recent tests show ectopic cortisol production so now I’m waiting to go through the work-up to find the ectopic tissue.

I believe, as well as my doctors, that I’ve had Cushings for at least 20 years if not more. This disease has caused me to develop other conditions that increase my mortality and morbidity. Ironically, as I was going through Physician Assistant school… I jokingly (halfway) thought I had Cushings Disease as we studied it in class. I should have pursued it more but people with Cushings understand how this disease plays with one’s mind.

I am not sure when or if I will get over this disease, but I can tell you….
I am grateful… I am blessed… but most of all, I am hopeful…

Update December 12, 2013:

It’s been 10 years now since I had my “cure” for Cushings. I am one of those rare people who have had both a complete hypophysectomy and bilateral adrenalectomy. I have had my ups and downs over the years but can honestly say I am in a good place now both physically and mentally.

I just wanted people to know that I am back in the Pacific Northwest working at Swedish Neuroscience Institute with Dr. Johnny Delshaw again – the team is back! Please don’t hesitate to ask me questions. As a healthcare provider and patient, I can be honest with what to expect and I will do what I can to help you through it.

Many thanks to my family and friends who have put up with me and helped me while I rediscovered myself after Cushings. God Bless to all!

Andrea P, Steroid-Induced Cushing’s

December 1, 2025

MaryO Addison's Disease, Steroid-Induced, Thyroid abdominal hysterectomy, Addison's disease, adrenal crisis, adrenal glands, Adrenal insufficiency, atrophy, bi-pap machine, bone density, bone fracture, Buffalo hump, cold sweats, Conditions and Diseases, cortisol, cushing, cushing's syndrome, depression, Endocrine Disorders, endocrinologist, energy, fat, Health, hyperparathyroidism, intern, low oxygen, Medic Alert bracelet, medication, migraine, miscarriage, nausea, Neurologist, osteoporosis, PCP, pituitary, Prednisone, psychosomatic, rheumatologist, Sjogrens, steroids, stress, teeth, testing, thyroiditis, vomiting, wean, weight Leave a comment

What can you do when the cure might be worse than the disease?

“Have you thought of losing some weight? This would most likely take care of the many complaints you have.” The all too eager yet condescending young intern continued despite my blank stare, “Have you had a sleep study done?”

How many times had I been in this situation? Change the doctor, but keep me there, in the crazy patient’s chair. “Well, the patient has five children, a long history of miscarriages, a fairly recent history of a traumatic abdominal hysterectomy… couple these with the recent death of her father to cancer and basically all normal testing… clearly she’s a depressed, middle aged woman hitting the Ben and Jerry’s a little too much and addicted to Lifetime movies.” Or something like that.

What’s worse than the tiny intern with a huge ego, was the troll under the bridge. I still had to face my PCP who listened to me a little less than a mother who’s heard “Mommy, mommy!” for the hundredth time in an hour, from her 3 year old.

For the better part of two years, I’d seen her for so many things. Each time I’d ask her why my bones were breaking so easily. I told her I was shrinking, to which she replied “It’s impossible to shrink an inch and a half in a year.” Then laughter. I’d ask her why the nausea & vomiting, low oxygen, and migraines were there… all of this was ignored and off to another specialist I’d go (for a similar experience), with more Prednisone in hand. When she didn’t see hardcore proof (i.e. a lab tests or a specialist’s report confirming the symptoms in front of her) the things simply did not exist, despite glaring symptoms.

Another specialist I’d seen did care and did see the disturbing, rapid transformation and accumulation of symptoms, so he sent me to my PCP for testing. I later found out that this specialist feared all along what I had. He had been warning me that Prednisone was dangerous and he hated it. I didn’t. I loved it. It was the only thing that relieved my severe neuropathy pain, the nausea, vomiting and migraines. Without it, I was in the E.R. at least once a week.

I suppose I could cut the PCP some slack and say that every doctor, when they themselves are the young intern, dream about the day when they can show off their seniority and knowledge (let’s not forget power) in front of another young intern. I could say this, but I won’t. Not when I know there are the most wise, sympathetic, world renowned and respected doctors, who’ve been practicing medicine longer than most interns have graced this earth, yet they treat the interns (and patients) as equals. They remain humble.

No, this PCP had no excuse for demeaning me for twenty minutes in front of this man. Alas! She did finally do her job and gave me an exam. It took her less than thirty seconds to blurt out “OMG Andrea! You have Cushing’s Syndrome!” All of the cool was gone. She fumbled with her papers, stuttered, murmured to herself… She was a mess.

She left the room for ten minutes and returned more composed and more… herself. “Andrea, I’m sure you’ve read about Cushing’s Syndrome on the internet.” This sentence was delivered with the same tone and sarcasm as a Disney villain about to pounce on an unsuspecting bunny (or other furry creature… did I mention the “fur” I had sprouted?). She continued, “You have every symptom of Cushing’s Syndrome. The buffalo hump is huge and classic.” She went on about my symptoms. All of which I’d been begging her to look at before this appointment.

By the end of the appointment, she had decided that she’d need to talk to my then rheumatologist; I’d need all sorts of testing, and foremost, “You HAVE to get off of that Prednisone Andrea!” Certainly she knew I wasn’t convinced that her prescriptions of Prednisone were somehow my fault, however the wee intern might have sucked that one up. Perhaps he believed it was my rheumatologist that prescribed all of it; he did do his part as well. They were both in it together.

I left the office miffed and confused. “Well,” I thought, “Let’s go home and see what this Cushing’s is, on the Internet. Probably some sort of psychosomatic disease where you think yourself into the side effects of Prednisone.”

At the point where I began my Internet search, I had changed from an active, really attractive (I can toot my horn, ’cause it ain’t so now) about to be 40 year-old, homeschooling mom of five beautiful children. I was in bed for 3 weeks prior to my PCP appointment. I found out later that my family thought that this was it, I was dying. Indeed, I was close to death and it’s a miracle that I didn’t die.

I had gained 40 lbs. for which easily 10 of it rested on the top of my back. The Buffalo Hump. The rest was hanging out in strange pockets of fat all over my middle and face. I was disoriented and in cold sweats all of the time. Everything hurt.

On the evening of that fateful Friday after my PCP appointment, I joined a Cushing’s support group online. It took me three weeks to compose my introduction post because I had not the energy, nor the wherewithal to finish it. In the meantime however, I found out enough about Steroid Induced Cushing’s Syndrome to know that I was in big trouble.

Every bad side effect one can get from steroid use, I am getting or have. What’s worse is, my adrenal glands have atrophied. They won’t wake up and naturally produce cortisol that our bodies vitally need. Every organ and gland in our body relies on the production of cortisol. When you have Cushing’s, you’re in a real pickle Fred.

With me, I’m continually in either Cushing’s mode or Addison’s mode. Two opposite diseases. You’d be surprised at how many people in the medical field do not understand this. Most disturbing is how many endocrinologists don’t understand it. My body is used to high levels of cortisol so when I try to wean off and my body gets stressed, sick, injured, needs surgery, etc., I go into adrenal insufficiency with the chance of adrenal crisis.

Ahh, adrenal crisis! My nemesis! Is it? Isn’t it? Hospital? Just a Prednisone Boost? These are questions I ask myself daily. I was very near dying during those few weeks before I saw my PCP, because my body was literally shutting down. Again, I’m still amazed that I didn’t die.

Right. I realized for me, a person with autoimmune disease, with all sorts of crazy symptoms, weaning down to a healthy level of cortisol was going to take another miracle. Those message boards? Every time I went to send a personal message to a member that I could relate to in experience, they were dead. Dead. Young women, neglected by so many doctors who thought that they too, were fat and depressed.

Monday came and I called my PCP as scheduled. When she answered the phone she acted as if she didn’t know why I was calling. Before a minute was up, I realized she was getting as far away from admitting I had Cushing’s Syndrome as she could. Both she and my rheumatologist had been prescribing me prednisone without any solid diagnosis (at that point). Basically the Prednisone was completely unwarranted. She told me to wean off of the Prednisone and “Um okay?” then let the silence hang there. I was speechless (and as you’re well aware of at this point, is pretty darn near an oxymoron).

I took it upon myself to see an endocrinologist, who I owe my life to. He ordered a bone density test, a bunch of labs, told me to get a medical alert bracelet ASAP and a whole lot more. He was shocked that none of this had been done.

The bone density test showed that my PCP was half right, I didn’t lose an inch and half off of my stature in less than a year, I had lost two and a half inches. I began a strong osteoporosis medication. A little later, I was put on 5 liters of oxygen at night and as needed during the day, a bi-pap machine and I learned more about cortisol stress doses and began searching for new doctors.

For the next year and a half, I would see a total of 3 more rheumatologists, 5 neurologists and 2 new PCP’s. I was admitted to the hospital too many times to count. I saw 5 more specialists, wasted tons of money, precious time and was demeaned further than I could have ever imagined coming from people who are supposed to “Do no harm.” at one of those big name clinics. Same thing: fat and CrAzY. At the end of it all, I had given up hope. I was on more Prednisone than when I had first seen my endocrinologist.

My teeth had begun rotting because of the calcium loss and my Sjogren’s Syndrome did not help matters there. I had 6 extractions in 3 months and was never able to get back down to the 10 mg. of Prednisone I had begun with. Stress, illness and then having to let the beautiful eyes of our children watch it all…too much.

I saw my endocrinologist for a checkup and he yelled at me. I yelled at him. We both yelled together and then he picked up the phone in front of me and called a few specialists (the most-awesome-est specialists the world has to offer) and made me appointments with them. These doctors graciously took me on as their patient and began working as a team with my endocrinologist to get me off of this Prednisone.

Well, it’s been 8 months since that loud, intense “time of fellowship” with my endocrinologist. Despite the fact that my teeth have deteriorated to the point where I will have them all extracted on Jan. 2, 2014 (Happy New Year!)… and I found out I have both thyroiditis and hyperparathyroidism and well, a bunch of other … stuff. I’m due to wean down to 9 mg. of Prednisone on Thanksgiving day! I’ve lost a little weight. There’s so much to be thankful for!

I have lost much, but what I’ve gained in return, I would never, ever give up. My faith and that of my family’s, has grown in ways that would never have happened had I not gotten this dreadful disease. I found many things. I have found that my husband really means it when he says that I’m beautiful. My children mean it… I have what many have deemed, “The Ugly Disease” yet I feel more beautiful than I ever have. I feel more blessed than I ever have. Most importantly, I remembered and again found my hope, through faith.

Faith is the essence of things hoped for, the evidence of things unseen. When those of us with serious and chronic illness, have no faith in a Hope, we are dead persons walking. Had my endocrinologist not been divinely appointed to verbally kick my butt, there’s no doubt in my mind that I would not be here trying to type this story of mine.

I can’t write nor say a thing without a moral. So the moral of my story is this: know who and what your hope is in. Know what the unseen things are and have fat faith. Take your illness and use it. Use your life! It’s beautiful!

Article reposted with consent of the author from Have Faith: Cushing’s Syndrome

In Memory: Christopher “Migs” Migliore

November 20, 2025

MaryO Adrenal, Adrenal Surgery, In Memory, Treatments Adrenal, BLA, cushing's syndrome, In Memory, surgery 1 Comment

A small, somber crowd of family members and Temple Terrace police officers gathered on Saturday, October 05, 2013, at Riverside Park in Temple Terrace, Fla. Marking seven months since Temple Terrace Police Detective Christopher “Migs” Migliore succumbed to a life-debilitating illness –Cushing’s Syndrome– family, friends, and police colleagues congregated to commemorate Detective Migliore’s life.

“Migs”, as he was widely known, now has three bricks cobbled into the groundwork at the Angel of Hope statue in the park, his name beveled into each. The Angel of Hope concept is based on honoring sons and daughters who have perished, with commemorations from surviving parents and loved ones.

A uniformed contingent of police officers –Migs’ colleagues from the Temple Terrace Police Department– stood in honor of their fallen comrade.

Temple Terrace Deputy Police Chief Bernie Seeley was in attendance and one of many to place a rose upon the outstretched hands of the Angel of Hope statue.

A semi-circular phalanx of Temple Terrace police officers stood attentively listening to the eulogy-based speeches orated by surviving parents and friends.

As the patronage stood amidst other family members whose loved ones have passed, each understood the silence, the pain, the loss of precious life…and the aura of carrying on the memory of those lost too soon.

At age 31, Migs fought gallantly his battle with Cushing’s Syndrome. Diagnosed in late 2012, Migs endured a surgical operation in February 2013 to excise both his adrenal glands. The objective was to combat the effects of Cushing’s Syndrome.

During the operation, complications arose, extending his hospital stay; Migs was discharged from Tampa General Hospital a few weeks later and returned to his parents’ home first.

Days later, Migs returned to his home in Hillsborough County where he passed away.

Remembered not only for his perpetual, bold and radiant smile, but more finitely for his humanitarian traits. Quiet and reserved in nature, Migs lived life in service to others in his own special way, extending grace and humility to those with whom he interacted. Non-judgmental. Serene and calm, just like Riverside Park.

As a police detective, building his cases was an iconoclastic component of his investigative prowess. The elusive clues and tiny details he knew existed gnawed at him…until he pieced all the parts together and effected arrests.

Migs’ parents, Mari and Louie, in remembrance of their wonderful son’s life, decided to have bricks specially made. Each of three bricks has “Christopher Migliore” and an endearing message etched within.

Migs’ parents, Mari and Louie Migliore, endeavored to maintain their son’s legacy not only as a stellar cop but also as a loving son and fine human being. In his honor, the Migliore’s had bricks designed and etched with the words “Cop Angel” in each. “He is watching over and protecting us from Heaven now, as a Cop Angel,” said Mari Migliore of her son.

“He was the greatest son” intimated Migs’ father, Louie Migliore.

Migs’ sister, Michelle Tovar, said “Even though he was five years younger than me he always protected me.”

Some of the bricks were petitioned by his other family members. Now, the triad of bricks is eternally fitted into the grounds at the Angel of Hope statue and place of remembrance.

After speeches were orated to the crowd, and as each congregant placed a rose at the feet or in the outstretched hands of the Angel of Hope statue, it became official: Another memory created by Migs was born…and his legacy eternally carries on.

The Angel of Hope is an enclave in Riverside Park which was opened in 2009. With the property donated by the City of Temple Terrace, a new place for family, residents, and visitors was created. A contemporary playground sits in the center of the park, providing an acute angle for all parents/guardians to observe the children.

The Hillsborough River laps up against the southern part of the park, and a huge swing set overlooks the waterway and its abundance of wildlife. Hence, Riverside Park was coined appropriately as the park’s namesake.

Before Riverside Park was even a thought or blueprinted on paper it was a solitary tract of land, thickly-bearded with brush, with a makeshift dirt road leading to/from a cul-de-sac. Before its groundbreaking and upon that cul-de-sac often sat Detective Migliore, when he was a street cop working duty on midnight shift.

It was upon these grounds that Migliore sat in a fully-marked Temple Terrace police cruiser as he wrote his police reports.

The irony is not small: No one could have predicted that those same natural grounds would some day be developed into a picturesque riverfront city park, with a cobbling of bricks attesting to Detective Christopher “Migs” Migliore as a “Cop Angel” among the Angel of Hope memorial site.

Woman who couldn’t lose weight diagnosed with a hidden adrenal tumor

November 19, 2025

MaryO Adrenal, Adrenal Surgery, News Items, Success Stories, Treatments Adrenal, adrenal gland, Blood test, cortisol, cushing's syndrome, gastric bypass surgery, kidney, plastic surgery, pregnancy, skin, surgery, tired, tumor, weak, weight, Weight loss Leave a comment

Naomi Benton, 34, baffled doctors for more than a decade
She continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgery in 2008
Tests finally revealed an orange-sized tumour on her adrenal gland
After having it removed she now only weighs 14st, but has 4st of excess skin

By ANNA HODGEKISS

A woman who weighed 32 stone has told how her excessive weight was due to a hidden tumour.

Naomi Benton baffled doctors for over a decade as she continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgery.

The 34-year-old from Haddington, East Lothian, pleaded with doctors for help after she ballooned from a healthy 10 stone at age 20 to more than 32 stone.

Naomi Benton baffled doctors for over a decade as she continued to pile on the pounds despite following an 800 calorie-a-day diet and undergoing gastric bypass surgery

The mother-of-two failed to drop any weight after her bypass surgery in 2008 and medical staff assumed her huge frame was due to secret snacking.

But when she was hospitalised after a bad fall the following year and her weight continued to balloon, she underwent tests which revealed the hidden deadly mass.

Further blood tests showed she was suffering from Cushing’s syndrome – a collection of symptoms that develop in the body due to high levels of a hormone called cortisol.

The tumour, which had developed on her adrenal gland located on top of the kidneys, had grown to the size of an orange and Ms Benton underwent an eight-hour emergency operation.

Ms Benton, who now weighs 14 stone, needs plastic surgery to remove four stone of excess skin.

She said: ‘I was always fit and healthy but when I hit 20 I started to dramatically put on weight.

The 34-year-old from Haddington, East Lothian, pleaded with doctors for help after she ballooned from a healthy 10 stone (pictured) at age 20 to over 32 stone

When she was hospitalised after a bad fall and her weight continued to balloon, she underwent tests which revealed a tumour on her adrenal gland. She is pictured in hospital after having the tumour removed

‘Just after my first pregnancy I managed to put on over five stone despite not changing my diet and just couldn’t drop the weight.

‘I went to the doctors numerous times about the dramatic gain but no-one believed that my weight wasn’t just down to a very unhealthy diet.

‘It was so frustrating, no-one was listening to me when I told them I wasn’t stuffing my face.

‘I was sent to see a dietitian who helped monitor my 800-calorie-a-day diet. Every day I was weak and tired, but still hadn’t lost any weight.

Ms Benton lost weight quickly after her tumour was removed and now weighs 14 stone. She needs plastic surgery to remove four stone of excess skin (left). She is pictured (right) before her weight loss

‘Even my friends and family were convinced I was eating in secret and complete strangers would tell me I needed to go on a diet.

‘Finally I signed up for a gastric bypass but after the op still didn’t lose anywhere near the kind of weight that was expected.

‘The breakthrough came after I was laid up in hospital for eight months after breaking both arms and legs in a nasty fall.

‘A junior doctor stopped by and asked if he could take run some new tests which finally showed what was wrong.

Ms Benton said: 'Now I'm just glad the tumour was discovered, as I'd hate to think what would have happened if it had gone on for longer' Ms Benton said: ‘Now I’m just glad the tumour was discovered, as I’d hate to think what would have happened if it had gone on for longer’

‘The tests revealed I had Cushing’s syndrome and a large tumour on my right side.’

Just weeks after having emergency surgery, the weight began to fall off her.

Ms Benton said: ‘Now I’m just glad it was discovered, as I’d hate to think what would have happened if it had gone on for longer.’

She has now shrunk down to a dress size 16 and but hopes to reach a size 12 and weigh 10 stone.

She added: ‘I’m a work in progress and I’m taking it in baby steps. I can’t wait to look and feel like my old self again.’

WHAT IS CUSHING’S SYNDROME?

Cushing’s syndrome is a collection of symptoms that develop due to very high levels of a hormone called cortisol.

The symptoms include weight gain, thinning skin, stretch marks and decreased interested in sex.

The condition often develops as a side effect of treatments for inflammation and autoimmune conditions.

It can also develop as a result of a tumour inside one of the body’s glands.

The main treatment is to stop taking the medication that is causing it or to remove the tumour.

If these options are not available, medication can be used to counter the effects of high cortisol levels.

If left untreated, it can cause high blood pressure which can lead to heart attacks and strokes.

It affects about one in 50,000 people.

Source: NHS Choices

From: http://www.dailymail.co.uk/health/article-2510680/32st-woman-lose-weight-diagnosed-hidden-TUMOUR.html

Janet (janetelizabeth), Adrenal Bio

November 7, 2025

MaryO Adrenal Adrenal, cushing's syndrome, gland, tumor Leave a comment

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

MaryO, 38th Pituitary Surgery Anniversary

November 3, 2025

MaryO Adrenal Insufficiency, Cancer, Golden Oldies, Growth Hormone Deficiency, MaryO, Other Diagnosis, Pituitary, Pituitary Surgery, Success Stories, Treatments, Update Adrenal insufficiency, blackberries, cancer, circus, Cortef, cortisone, cortisone shot, Cushing's Help and Support boards, cushing's syndrome, Dr. Ed Oldfield, endocrinologist, Giving Thanks, growth hormone, Harvey Cushing, Kenalog, Kidney cancer, knee issues, knee replacement, lymph nodes, message board, MOHS surgery, National Institutes of Health, nephrectomy, neurosurgeon, NIH, pituitary, pituitary surgery, Prednisone, remission, Renal cell carcinoma, Ringling Brothers, squamous cell carcinoma, success, Thankful 1 Comment

Today is the 38th anniversary of my pituitary surgery at NIH – November 3, 1987.

I can now affirm that I have lived more than half my life post-op. That’s pretty amazing when I was sure that I was going to die before I had my surgery. And didn’t care if I did.

As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented in my original bio here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 38 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

A few years ago I went back on it (Omnitrope this time). I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last several years, I’ve developed ongoing knee issues. Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee. September 12, 2018 I did get that knee injection (Kenalog) and it’s been one of the best things I ever did. I didn’t look forward to telling my endo! I have had a couple more injections. I was approved for a new three-time gel injection over 3 weeks.

I also developed an allergy to blackberries last October and had to take Prednisone – and I had to tell my endo that, too!

A couple years ago I had squamous cell carcinoma on my nose and had Mohs Surgery.

March 9, 2023 , I finally had my left knee surgery. I’ve posted about that here: https://maryomedical.com/2023/03/09/bees-knees-tkr-finally/

January 6, 2025 , I’ll get my right knee done.

But, this is a post about Giving Thanks. The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH. Unfortunately, Dr. Oldfield died.

I’m thankful for Dr. Harvey Cushing and all the work he did. Otherwise, I might be the fat lady in Ringling Brothers now.

MaryO, Pituitary Bio

October 28, 2025

MaryO MaryO, Pituitary, Pituitary Surgery, Success Stories, Treatments aches, adrenal gland, arthritis, bio, blackberries, blood, Buffalo hump, cancer, carcinoma, cell, clinical trial, Communications, cortisone, creatinine, cush-help, cushing, cushing's, Cushing's disease, cushing's syndrome, cushings-help, cyclical, depression, dex, Dexamethasone, discussion, doctor, dysfunction, Eflornithine, endo, endocrine, endocrinologist, female, food allergy, founder, growth hormone, Harvey Cushing, help, HgH, hirsuitism, hormonal imbalance, human, hypopituitarism, infertility, insulin, Insulin Tolerance Tests, Internet, ITT, iTunes, kidney, MaryO, Mayo Clinic, message board, newsletter, NIH, osteoporosis, pain, panhypopituitarism, petrosal sinus sampling, physician, pituitary, podcast, post-op, pre-op, Prednisone, PSS, Representative, resection, Specialist, steroids, story, support, Suppression, surgery, transphenoidal, transsphenoidal, tumor, Venipuncture, Virginia, webmaster 49 Comments

Adapted from Participatory Medicine

This is kind of a “cheat” post since it’s a compilation of other posts, web pages, message board posts and some original thoughts. I’m writing it to submit to Robin’s Grand Rounds, hosted on her blog.

For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a HE) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn’t live in my body 24/7 and experience what I did.

I know a lot of people are still like this. Their doctor is like a god to them. He can do no wrong – even if they don’t feel any better after treatment, even if they feel worse. “But the doctor said…”

Anyway, I digress.

All this changed for me in 1983.

At first I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Lots of women lose their periods for a variety of reasons so no one thought that this was really significant.

Then I got really tired, overly tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time. I would lie down in the back of the van, set an alarm and sleep for the 30 minutes.

A whole raft of other symptoms started appearing – I grew a beard (Hirsuitism), gained weight even though I was on Weight Watchers and working out at the gym nearly every day, lost my period, everything hurt, got what is called a “moon face” and a “buffalo hump” on the back of my neck. I also got stretch marks. I was very depressed but it’s hard to say if that was because of the hormone imbalance or because I felt so bad and no one would listen to me.

I came across a little article in the Ladies Home Journal magazine which said “If you have these symptoms…ask your doctor about Cushing’s”. After that, I started reading everything I could on Cushing’s and asking my doctors. Due to all my reading at the library and medical books I bought, I was sure I had Cushing’s but no one would believe me. Doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

I asked doctors for three years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. It’s too rare. You couldn’t have Cushing’s. I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.

My husband was on the doctors’ sides. He was sure it was all in my mind (as opposed to all in my head!) and he told me to just think “happy thoughts” and it would all go away.

A Neurologist gave me Xanax. Since he couldn’t see my tumor with his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Boy was he wrong!

Later in 1986 I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year’s Day of 1987 I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker, like the rings of a tree. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked at me. Both he and his partner recognized that I had Cushing’s. Of course, he was sure that he did the diagnosis. No matter that I had been pursuing this with other doctors for 3 years.

It was not yet determined if it was Cushing’s Disease (Pituitary) or Syndrome (Adrenal). However, he couldn’t help me any further so the Hematologist referred me to an Endocrinologist.

The Endocrinologist, of course, didn’t trust the other tests I had had done so I was back to square one. He ran his own multitude of tests. He had to draw blood at certain times like 9 AM. and 5 PM. There was a dexamethasone suppression test where I took a pill at 10 p.m. and gave blood at 9 am the next day. I collected gallons of urine in BIG boxes (Fun in the fridge!). Those were from 6 a.m. to 6 a.m. to be delivered to his office by 9 a.m. same day. I was always worried that I’d be stopped in rush hour and the police would ask about what was in that big container. I think I did those for a week. He also did standard neurological tests and asked lots of questions.

When the endo confirmed that I had Cushing’s in 1987 he sent me 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. 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 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. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just 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 a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. 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.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

My story goes on and if you’re interested some is on this blog and some is here:

Because of this experience in getting a Cushing’s diagnosis – and later, a prescription for growth hormone – I was concerned that there were probably other people not being diagnosed with Cushing’s. When I searched online for Cushing’s, all the sites that came up were for dogs and horses with Cushing’s. Not what I was looking for!

In July of 2000, I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2010, we have over 7 thousand members. Some “rare disease”!

The message boards are now very active and we have weekly online text chats, weekly live interviews, local meetings, conferences, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more. Because I wanted to spread the word to others not on “the boards” we have extended out to social networking sites – twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups, multiply.com, and much, much more.

People are becoming more empowered and participating in their own diagnoses, testing and treatment. This have changed a lot since 1983!

When I had my Cushing’s over 20 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.

Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting over a hundred other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!

I don’t know what pushed me in 1983, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m glad that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.

What do *YOU* think? How are you becoming empowered? Comments welcome

• Medicine 2.0 (Toronto, Canada) September 17-18, 2009. Robin Smith (staticnrg), Mary O’Connor (MaryO) and Dr Ted Friedman will be panelists. The topic is “Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0”. Robin submitted this topic. She wrote: Paying it Forward in the Digital Age: Patient Empowerment 2.0 using Web 2.0

An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.

Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.

Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.

The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.

From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.

One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.

More info here.

MaryO’s Original Bio

Click on pictures to enlarge.

Around 1983 I first started to realize I was really sick. At first I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Then I got really tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time.

I came across a little article in the Ladies Home Journal which said “If you have these symptoms…ask your doctor about Cushing’s”. After that, I started reading everything I could on Cushing’s and asking my doctors. Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. Doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

My husband just told me to think “happy thoughts” and it would all go away. A Neurologist gave me Xanax. Since he couldn’t see my tumorwith his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Boy was he wrong!

In late 1986 I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year’s Day of 1987 I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.
I was also having trouble with my feet and walking, so I had the distinction of going to two doctors in one day, a Podiatrist in the morning and the Hematologist/Oncologist in the afternoon.

Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked at me. Both he and his partner recognized that I had Cushing’s.

It was not yet determined if it was Cushing’s Disease (Pituitary) or Syndrome (Adrenal). However, he couldn’t help me any further so the Hematologist referred me to an Endocrinologist.

When he confirmed that I had Cushing’s he sent me 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.

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just 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 a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

Update: Fall, 1999:

I went for my regular testing with my private endocrinologist.

Besides the annual testing, he told me that my pituitary gland is shutting down, so I must always have extra cortisone (Cortef) for any medical stress such as surgery or the flu.

Many people are now finding that they need HgH after pituitary surgery, so an Insulin Tolerance Test was performed. My endocrinologist painted a very rosey picture of how wonderful I’d feel on Growth Hormone. It sounded like a miracle drug to me!

I was only asked to fast before the ITT and to bring someone with me to take me home. There is no way I could have driven home. I got very cold during the test and they let me have a blanket. Also, though, lying still on that table for so long, my back hurt later. I’d definitely take – or ask for – a pillow for my back next time. They gave me a rolled up blanket for under my knees, too.

I don’t remember much about the test at all. I remember lying very still on the table. The phlebotomist took blood first, then tried to insert the IV (it took a few tries, of course). Then the endo himself put the insulin in through the IV and took the blood out of that. I remember the nurse kept asking me stupid questions – I’m sure to see how I was doing on the consciousness level. I’d imagine I sounded like a raving lunatic, although I believed that I was giving rational answers at the time.

Then everything just got black…I have no idea for how long, and the next thing I knew I was becoming aware of my surroundings again and the doctor was mumbling something. They gave me some juice and had me sit up very slowly, then sit on the edge of the table for a while. When I thought I could get up, they gave me some glucose tablets “for the road” and called my friend in. I was still kind of woozy, but they let her take me out, very wobbly, kind of drunk feeling.

My friend took me to a close-by restaurant – I was famished – but I still had trouble with walking and felt kind of dazed for a while. When I got home, I fell asleep on the sofa for the rest of the day.

But the most amazing thing happened. Saturday and Sunday I felt better than I had for 20 years. I had all this energy and I was flying high! It was so wonderful and I hoped that that was from the HgH they gave me to wake me up.

I will have to take this test annually until I do I do qualify for HgH. I got a small taste of what I would feel like on this drug – that weekend I felt much better than I can remember feeling in a very long time. Hopefully, at some point, I will “qualify” for this drug, even though it means a daily injection. I would really like to feel better sometime – less tired, less depressed, more human.

In July of 2000, I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could. This website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’m going to make some helpful differences in someone else’s life.

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, aCushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” programwhere they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

My husband, Tom (PICTURED ABOVE) posted this on the message boards:

“I just read your description of the 9 year ordeal. I am Mary’s husband and much of your story was familiar.Mary diagnosed her own illness. After a prolonged journey from doctor to doctor.

After her surgery and recovery, I found myself at a neurologist’s office for some trivial ailment and the place seemed familiar.

Then it dawned on me that I had been there before with Mary. This was one of the doctors who had failed to listen. Or perhaps simply had no knowledge base about Cushing’s.

In any event, I stopped the process I was there for and changed the subject to the previous visit 4 years ago. I told the doctor to look up his records on Mary O’Connor and study them. Told him that what he would see in his files was a case of Cushing’s, misdiagnosed as something that might respond to Valium.

I said he could learn something and perhaps help the next person who arrived with Cushing’s.

Out of fairness to the medics, the ailment is so rare that a doctor can go his entire career and never see a single case. And it is certainly possible that the doctor may fail to diagnose the few cases they may see.

Mary’s surgery was done at NIH. It came down to them or the Mayo Clinic. At the time we did not realize that NIH was free and we selected them over Mayo based on their success and treatment record. They were happy to learn they had beat Mayo without a price advantage. We were happy to hear it was free.

During the same time Mary was at NIH, another woman had the same operation. She came from Mary’s home town. They were class mates at college. They had the same major. They were the same age. They had the same surgical and medical team. Mary recovered. The other woman died during surgery.

I am an aggressive person who deals directly with problems. I enjoy conflict and I thrive in it.

This experience made clear how little we control. And how much depends on the grace of God.

This year we celebrated our 28th anniversary. Our son has grown into a fine young man and is succeeding admirably in college.
Life is the answer. We keep going on….undaunted and ever hopeful.

Tom O’Connor”

Update July 26, 2001

I saw the endo today. My pituitary function is continuing to drop, so August 6, I’ll Be having another ITT, as described above. Hopefully, after this one, I’ll be able to take Growth Hormone and start feeling better!

Update August 6, 2001

I had the ITT this morning. I don’t get any results until a week from Thursday, but I do know that I didn’t recover from the insulin injection as quickly as I did last time. The endo made a graph for my husband of me today and a “normal” person, although I can’t imagine what normal person would do this awful test! A normal person’s blood sugar would drop very quickly then rise again at about a right angle on the graph.

I dropped a little more slowly, then stayed very low for a long time, then slowly started to rise. On the graph, mine never recovered as much as the normal person, but I’m sure that I did, eventually.

The test this time wasn’t as difficult as I remember it being, which is good. Last time around, I felt very sweaty, heart pounding. I don’t remember any of that this time around. I do know that I “lost” about an hour, though. The phlebotomist took the first blood at 9:15, then the endo injected the insulin and took blood every 15 minutes after that. I counted (or remembered) only 4 of the blood draws, but it was 11:30 when they told me that my sugar wasn’t coming up enough yet and I’d have to stay another 30 minutes. It actually ended up being another hour.

Kim, the phlebotomist, asked me if I got a headache when they “crashed me” and I have no recollection of any of that.

Like last time, I was very, very cold, even with the blanket and my left arm – where the heplock was – fell asleep. Other than that – and my back hurting from lying on one of those tables all that time this wasn’t as bad as I remembered.

So, I waited for 10 days…

Update Fall, 2002

The endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.

I know that I would like to lose weight, but I’d like to do it on my own terms, not over Thanksgiving, Christmas and New Years, not because this endo was rude about it. I left his office in tears. I’m now looking for a new one…

Update Fall, 2004

I left my previous endo in November of 2002. He was just too rude, telling me that I was setting myself up for a heart attack and that I wasn’t worth treating. I had left his office in tears.

Anyway, I tried for awhile to get my records. He wouldn’t send them, even at doctors’ or my requests. Finally, my husband went to his office and threatened him with a court order, The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001, that doesn’t seem like enough records to me.

I had emailed NIH and they said that they would be “happy” to treat me, but it was long between emails, and it looked like things were moving s-l-o-w-l-y. I had also contacted UVa, but they couldn’t do anything without those records.

Last April, many of us from the message boards went to the UVa Pituitary Days Convention. By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me one day last summer. In the email, she asked how I was doing. Usually I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. And I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests. From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 10 years! I was amazed to hear all this, and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I’m going back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He has said that I will end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

So, in a couple weeks, I might start feeling better! Wowee!

For those who are interested, my new endo is Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Update October, 2004

I had cortrosyn and arginine-GHRH stimulation test at Johns Hopkins. They confirmed what the doctor learned from reading my 4 year old records – that I’m both adrenal-deficient and growth hormone-deficient. I started on my “sprinkle” (5 mg twice a day) of Cortef now and my new doctor has started the paperwork for GH so maybe I’m on my way…

Yea!!!

It feels weird to be going back on the cortisone after being off for so many years but at this point, I think I’d sell my soul to the devil not to feel the way I’ve been feeling for the last several years.

Update November, 2004

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we’ll see on Monday what to do about an appeal. My local insurance person is also working on an appeal, but the whole thing sounds like just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving. I guess that’s not going to happen, at least by the 2004 one.

As it turns out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Am I going to be a ginuea pig again? The new GH company has assigned a rep for me, has submitted info to pharmacy, waiting for insurance approval, again.

Update December 7, 2004

I finally started the Growth Hormone last night – it’s like a rebirth for me. I look forward to having my life back in a few months!

Update January 3, 2005

After a lot of phone calls and paperwork, the insurance company finally came through at the very last minute, just as I needed my second month’s supply. Of course, the pharmacy wouldn’t send it unless they were paid for the first month. They had verbal approval from the insurance, but the actual claim was denied. Talk about a cliff hanger!

Update January 25, 2005

I’ve been on the growth hormone for 7 weeks now, and see no change in my tiredness and fatigue. A couple weeks ago, I thought there was a bit of improvement. I even exercised a little again, but that was short lived.

I feel like my stomach is getting bigger, and Tom says my face is looking more Cushie again. Maybe from the cortisone I’ve been taking since October. I can’t wait until my next endo appointment in March to increase my GH. I want to feel better already!

Update March 21, 2005

My endo appointment is over. My endo thinks that my weight gain is from the cortisone, as I’d suspected. He cut that amount in half to see if I would stop gaining weight and maybe lose a little. Because of the adrenal insufficiency, I can’t completely stop it, thought. My IGF-1 was “normal” so I can’t increase the GH.

I made a vacation of this trip, though. A friend and I stayed 2 nights in a hotel and had some fun. The hotel had an indoor pool, hot tub, sauna, exercise room, wireless internet access, free shuttles to Johns Hopkins and the Baltimore Inner Harbor. We had a good time for ourselves, so I came home from this endo trip more tired than ever. Over the weekend, I took 7-hour naps on both Saturday and Sunday. Hopefully, that will get better as my body adjusts to the loser dose of Cortef.

Update September, 2005.

My last endo appointment I had lost some weight but not enough. My energy levels are down again, so my endo increased the cortisone slightly. I hope I don’t start gaining again. I don’t see any benefit with the growth hormone.

Update January, 2006.

A new year, a new insurance battle. Once again, they don’t want to pay so I have to go through the whole approval process again. This involves phone calls to Norditropin (the company that makes the GH), my endo, iCore Specialty Pharmacy (the people who prepare and ship the meds) and my insurance company. This is turning into a full-time job!

Update April 14, 2006

I just went to see my endo again on Thursday to see how things are. Although I know how they are – I’m still tired, gaining a little weight, getting some red spots (petechiae) on my midsection. He also noted that I have a “little” buffalo hump again.

My endo appointment is over. Turns out that the argenine test that was done 2 years ago was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I’m off GH again for 2 weeks, then I’m supposed to be retested. The “good news” is that the argenine test is only 90 minutes now instead of 3 hours.

Update June 2, 2006

Wow, what a nightmare my argenine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go home after the test.

Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine test showed that my IGF is still low but due to the kidney cancer I cannot take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis.

Update August 19, 2006

I’ve been even more tired than usual now that I’m off GH. I can’t take my arthritis meds, or anything like Excedrin (no NSAIDs) so my joints are nearly always bothering me and I have to wait out any headaches. I’m also just getting over a UTI.

I just had my 3 month post-op CT scans and I hope they come out ok. At first I was grateful that I wouldn’t have to have chemo or radiation come to find out that neither has been discovered yet which works well with kidney cancer. Apparently, it can resurface any time for the rest of my life. I’m hoping that some of the chemo clinical trials show some good results so I can get this thing before it metastasizes somewhere.

I’m having trouble sleeping (1:20 AM here, now) although I’m always tired.

Whine, whine!

On the plus side – I survived the kidney cancer surgery, and it’s almost vacation time!

Even vacation will be bittersweet, though. 2 years ago, Sue went with us on vacation. She had a great time and she had asked if she could go with us again this year. Of course, we had said yes…

Update October 26, 2006

I went to see my Johns Hopkins endo again last week. He doesn’t “think” that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have.

He was happy to see that I had lost 22 pounds since my last 6 month visit. Not all of that was from surgery! He reminded me that I can take more cortisone, but I hate to do that because I gain weight so fast when I take more.

He thought that my blood pressure was low – for me, not for “normal” people. He took my pressure several times, lying down, getting up quickly. But I never got dizzy. Maybe my pressure increase was temporary when the cancer started. All these mysteries I have that no one can answer.

My energy levels are lower than when I was on GH, and they’re lower again because I had the adrenal removed, because of my panhypopit, because of my cancer even though currently NED, it can come back at any time, because of my GH deficiency…

Every day is a challenge getting up, doing something useful, doing something without arthritic pain and weakness, having the energy to finish even something “easy”. I’m starting to get very depressed over all this. If this is the way the rest of my life is going to be, why bother?

People mostly assume that everything is OK with me because I am not getting chemo or radiation and because I look so “healthy” (thanks to the Cushing’s/daily Cortef!). They figure that if there was any real danger of the cancer metastasizing that I would be on chemo, like other cancer patients do. They don’t understand that I have to wait and pray because there are no approved adjuvant treatments. If/when my cancer returns, it’s just more surgery. If I’m “lucky” enough and get to a stage 4 THEN I can have chemo/radiation as a palliative measure.

Update December 2006

According to my PCP my blood pressure is truly low. But can I go off these bp meds? Nope…because I have only one kidney, these would have been prescribed anyway as a support for my kidney. Can’t win!

I am maintaining my weight loss but none of my clothes are loose, I can’t fit in anything smaller. Belly is still there. So the weight loss is just a numbers game.

Update March 2007

I posted this on the message boards in late February but many missed it and are still asking…

Walking Wounded, the sequel! Wow! I guess I haven’t been on the boards for 2 weeks or so. I see that I have dozens of PMs to read, many emails to check/answer and I missed at least one person who had ordered an Awareness Bracelet that I never sent.

My Monday appointment with the surgeon went ok. He took blood/urine and was going to send me for CT scans. That day, as I recall was very cold here with a wind chill of something like -7o

I came home and taught my piano students, as usual.

Tuesday morning I woke up and my back hurt. I assumed it was from the cold combined with my arthritis. That got worse throughout the day so I called my PCP. Naturally, he was away until the 19th but had a substitute I could see Wed. I didn’t want to wait because the pain was excruciating by now and I couldn’t get out of chairs or sofa without using the walker I had from surgery to help pull me up.

So I called my husband at work and he said he’d come home and take me to the ER. I had been supposed to have handbell rehearsal that night so I called my director and let her know I wouldn’t make it. She assumed that Tom (husband) would be home sooner than he was, so she got the associate pastor from my church and they headed to the ER to wait with us.

They asked about me at the front desk and were assured that I was there although they didn’t see me. I guess they thought I was with the triage nurse or something. So they waited. Then a Melissa O’Connor was called… My people realized it wasn’t me and left.

Finally, Tom got home – he had really important work to do (sarcastically said!) and I got to the ER about 6:00PM. Last time I was there, they told me I had kidney cancer, so I was hoping that there was no rerun of that experience!

The triage nurse let me wait on a gurney instead of one of the hard plastic chairs in the waiting room.

Unfortunately, they also wanted blood and urine. My only good arm had been used by the neurosurgeon the day before. Luckily the nurse finally got the IV in to my other arm. I guess my veins are a bit better post-Cushing’s. No collapses this time.

They did CT scans (so I don’t have to do my surgeon’s ones – YEA!) and XRays and found basically nothing except lung nodules that hadn’t grown much since my last scan – say what? I didn’t know I HAD lung nodules.

I got some percocet and they sent me home with orders to see the sub PCP in 2 days. The percocet didn’t do much except make me sleepy/groggy. My days were spent watching TV and sleeping. Even sitting at the computer or the table was too painful.

Tom took me to the sub PCP on that Friday and she’s sending me to physical therapy.

Until yesterday, I didn’t drive at all, and the weather has been awful, so I haven’t even called about the PT yet.

There is still a little pain, and I need the walker to get out of bed, but I’m doing much better.

A weird side thing – Tom was driving my car since it’s a van and much heavier than his midlife crisis sports car. The van does much better with snow and ice that we had the last couple weeks.

One day he got it home, slammed the door – and the window slid down into the door. Somehow it got off the tracks. Luckily the glass didn’t break. So that was a bit of a problem and $$. No one had ever even heard of this problem before.

Anyway, I hope to get to your PMs, emails and whatever ASAP!

It feels a bit weird being here – like my baby has grown up, left home and doesn’t need me anymore. Can you have Empty Nest Syndrome for message boards? LOL

I have started a new Blog called Cushing’s, Cancer & Music and I plan to keep that updated a little more often than this bio. Rather than the actual events that have taken place, I am letting some of my pent-up feelings out. NOTE: This blog was destroyed by hackers in June 2008 🙁 I don’t know when or if I will ever have the energy to rebuild it. Find the newest blog here: Cushing’s and Cancer Blog

On an Alaskan cruise, June 2007. More about the cruise.

As of the Chicago meeting in July, 2012 I have met 90 members of the message boards (listed as Friends) in addition to Cushies who are NOT on the boards! I have traveled to meet Cushies at NIH in Bethesda, MD, Ohio, Pennsylvania, Oklahoma, Michigan, Wisconsin, Illinois, New York, Florida, Tennessee, Connecticut, UVa in Southern Virginia and Oregon.

Update October 2018

Well, I haven’t been so great keeping this updated. I have made other single posts after I went back on Growth Hormone in June, 2017 (Omnitrope this time). I am posting some of how that’s going here.

No return of cancer (Hooray!)

I’ve developed a new allergy to blackberries

I’ve had a lot of problems with my knees. This post needs to be updated since I had a cortisone shot in my knee on September 12, 2018 – best thing I ever did, even though my endo will not be happy.

I was so stupid way back in 1987 when I thought that all my troubles would be over when my pituitary surgery was over.

And so I wait…

Cushings-Help.com, and quotes from MaryO was included in the Cover Story of this issue of FORBES Magazine, BEST OF THE WEB Issue. The title: “Use With Care” by Matthew Schifrin and Howard Wolinsky.

Hopefully, this kind of mainstream exposure will help increase awareness for this often misunderstood disease. Read the article here.

MaryO VOICE Chat
Listen live to an archived interview from Thursday, January 3, 2008 with MaryO. Achived audio is available through the Podcast page of this site, BlogTalkRadio, the CushingsHelp Podcast or through iTunes Podcasts

Jayne and Robin also hosted a Special Cushing’s Awareness Day live chat April 8, 2008. This chat included a lot of comments about MaryO. Archives are available.

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Kim H, Ectopic Bio

October 16, 2025

MaryO Adrenal Surgery, Carcinoid, Ectopic, Golden Oldies, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments acne, ACTH, appendix, balding, bilateral adrenalectomy, BLA, Blood test, carcinoid tumor, cortisol, cushing's syndrome, depression, hair, Moon face, MRI, muscle weakness, periods, petrosal sinus sampling, pituitary, pituitary surgery, Stretch marks, urine test, Weight gain, xray 2 Comments

I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986.

However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

Jordy in the News…Again

September 29, 2025

MaryO Adrenal, Adrenal Surgery, Male, News Items, Treatments adrenal glands, adrenaline, afraid, cushing's syndrome, Jordy Leave a comment

Jordy’s first bio is here: https://cushingsbios.com/2025/08/25/jordy-pituitary-bio/ and a news item is here: https://cushingsbios.com/2017/04/18/a-new-newspaper-article-on-jordy/

Life without fear: The people who can’t feel afraid

On a bright afternoon at Disneyland in 2012, Jordy Cernik strapped himself into a rollercoaster and waited for the familiar rush of adrenaline. The clanking ascent, the plunge into speed—this was the moment his stomach should drop, his heart should pound.

Instead, nothing.

No sweaty palms. No jolt of panic. Just silence in his body where fear used to live.

Jordy, a British man treated for Cushing’s syndrome by having his adrenal glands removed, had lost the ability to feel afraid. Later he would leap out of planes, zip-wire off Newcastle’s Tyne Bridge, and abseil down London’s Shard without so much as a quickened pulse. For him, what most people call terror is just another Tuesday.

And Jordy isn’t alone.

The woman who couldn’t be scared

Decades earlier in Iowa, doctors met a woman known as “SM.” She has Urbach–Wiethe disease, a rare genetic condition that destroyed her amygdala, the almond-shaped brain structure thought to govern fear.

Scientists tried everything: horror films, haunted houses, snakes, spiders. Instead of flinching, SM leaned in. “She had this almost overwhelming curiosity,” recalls Dr Justin Feinstein, a neuropsychologist who studied her. “She didn’t just fail to avoid danger—she sought it out.”

SM can laugh, cry and rage like anyone else. But fear—the instinct that keeps most of us alive—is absent.

Too little fear, too much risk

That absence has consequences. SM has been held at gunpoint and knifepoint more than once. She also stands so close to strangers that researchers measured her “comfort zone” at just over a foot—half the distance most people maintain.

“Her case shows that the amygdala isn’t only about fight-or-flight,” says psychologist Alexander Shackman. “It helps us navigate social life, too.”

When panic breaks through

But fear isn’t completely gone. In a striking experiment, Feinstein asked SM to inhale carbon dioxide—tricking her body into thinking it was suffocating. To her own astonishment, she panicked. It was the first full-blown terror she had felt in decades.

The experiment revealed a split in the brain’s wiring: external threats like predators or attackers rely on the amygdala, but internal threats, such as suffocation, are managed by the brainstem. With her amygdala destroyed, SM’s brainstem went unchecked, flooding her with fear.

Why we still need fear

For most animals, fear is survival. A mouse without an amygdala survives minutes in the wild before becoming lunch. Fear sharpens instincts, makes bodies sprint and hearts hammer. It’s biology’s built-in alarm system.

And yet SM has lived half a century without hers. Jordy, too, moves through the world unfazed by heights, speed, or risk. Their stories raise a tantalising question: in modern life, where predators no longer stalk us, do we sometimes suffer from too much fear rather than too little?

“Fear may once have saved us from lions and cliffs,” Feinstein says. “But today it often feeds stress and anxiety. Maybe the challenge now is learning when to silence it.”

On paper, Jordy Cernik has the kind of courage adrenaline junkies would envy. He has hurled himself from planes, dangled off skyscrapers, and zipped across dizzying bridges without so much as a flicker of fear.

But he insists it isn’t bravery. It’s emptiness.

“I don’t get that rush everyone talks about,” he admits. “It’s not courage, it’s just… nothing.”

That “nothing” can feel hollow. Fear, after all, doesn’t just protect us—it colours life with urgency, sharpens moments, makes victories sweeter. Without it, Jordy says, the world can sometimes feel oddly flat, as if one of life’s most vivid emotions has been erased.

For SM in Iowa, and Jordy in Newcastle, the absence of fear has opened unusual doors but also exposed real dangers. Their lives highlight the strange paradox of fear: too much of it cripples us, too little can leave us vulnerable, but just enough is what keeps us alive and makes life thrilling.

Perhaps that’s the ultimate reminder—that fear isn’t just something to overcome, but something that makes us human.

Source: BBC

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Cushing's Bios

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