The second episode of Pituitary Grand Rounds features Dr. Lewis Blevins in a compelling discussion with Sloan Hart, a patient with a dangerous, delayed diagnosis of Cushing’s disease, which caused tremendous hardship and suffering.
Sloan, Pituitary Video
October 15, 2025
Pituitary, Video ACTH, Birth control, bruising, Buffalo hump, central obesity, cortisol, Cushing's disease, Deep Vein Thrombosis, Dr. Lewis Blevins, DVT, endocrinologist, fat-shamed, fatigue, hair growth, hair loss, high cholesterol, hirsuitism, hypertension, lethargy, memory loss, mood disorders, muscle atrophy, pain, PCOS, photos, pituitary, Pituitary Grand Rounds, plethora, pre-diabetic, ptsd, skin, straie, stress, video, Weight gain Leave a comment
Denise (Jeff’s Mom), Undiagnosed Bio
October 13, 2025
Male, Undiagnosed 24-hour urinary free cortisol, Acanthosis Nigricans, ACTH, Buffalo hump, Childrens Hospital of Philadelphia, cortisol, headache, male, memory, mouth sores, pain, puberty, skin, sleep, slow healing, Stretch marks, UFC, undiagnosed 2 Comments
My son is almost 16 years old and so sick he hardly gets out of bed anymore. Although no Dr.s believes me I do believe he has Cushings and the Dr.s can not give me any other idea’s of what is wrong with him only that he needs to lose weight and exercise more. My son is so tired of hearing this that at his last appointment with a specialist at Childrens Hospital of Philadelphia he left in tears and wants to know why no one is helping him. He is to the point where he doesn’t even want to go to the Dr.s anymore, he thinks it’s pointless. He has only had one 24hr Urine test which came back normal and an cortisol & ACTH test taken at 5pm and these were also within range. I am going to guess maybe things started at the age of 9 or 10 and progressively gotten worse.
His symptoms are as follows and the explained away answers from the Dr.s –
1. Headaches all day everyday – sometimes severe, sometimes just there and no amount of advil seems to take it away completely – Dr.s probably puberty and since he is a big kid take up to 4-advil every 4 hours.
2. Buffalo Hump – we brought him to the Dr. about 2-3yrs ago for this odd hump on the back of his neck – Dr.s it’s just a fat deposit – he just deposits fat in odd places
3. Red to purple stretch marks that fade and get brighter but never go away completely – they appear in masses on his sides, back, shoulders and stomach – Dr.s response although his stretch marks are quite impressive they are typical of what you would see in cushings they are not purple enough or wide enough.
4. Severe pain in back and knee (sometimes elbows) – he can’t even take a simple trip to the stores as it is to much for him to walk around – his is 15yrs old and is now asking me to get him a cane to help him get around. Dr.s response to the pain – must be growing pains (my son is 6’1″ and I was just told he is pretty much done growing)
5. He does not sleep at night, says can’t fall to sleep no matter how hard he tries and when he finally does fall asleep in the morning early hours he will sleep most of the day, then wake up still feeling tired. He told me it’s like his mind sleeps but his body doesn’t feel rested at all. Dr.s said he needs to stop video games and t.v. to hours before bed – these types of things stimulate the mind thats why he can’t sleep.
When the Dr.s were told the rest, they really didn’t say anything at all – below are the rest of his symptoms:
6. He is starving at night – he says he has to eat he is so hungry
7. Having a hard time remembering things and getting progressively worse
8. Losing his grip – he can barely right his name – when I ask him to squeeze my hand it hardly even hurts me now and he says when he tries to squeeze hard he gets this odd sensation up his arm and it feels really off .
9. Has a hard time sitting for an extended amount of time – this has caused him to miss the last 6 weeks of school – his says the pain in his back and sides are just to much to handle when trying to sit.
10. He has had numerous skin aliments, mouth sores
11. Always thirsty
12. Acanthosis Nigricans – back of neck, under arms, elbows
13. never a sick child until recently – strep throat, mono (which I was first told he didn’t have), normal colds now last for weeks with him where he never even got colds before.
14. slow healing of cuts and he scars horribly
I am sure there are other things but these are the first to come to the top of my head. His biggest complaint is the memory loss, lack of sleep and pain. I am scared for my son and do not understand how this is acceptable for anyone let alone a 15yr old. I am watching him get worse and watching his precious teenage years just pass right by him.
Contact Denise here.
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Cushing’s Disease and how a brain tumour made me fat. | Skeptical Artist
August 16, 2025
Male, Pituitary bruising, Cushing's disease, fat, muscles, painful joints, skin, sleep, swim, tumour, weight Leave a comment
The author of this blog post is a member of the Cushing’s Help Message Boards.
…I’d been feeling a little off colour and had put on a bit of weight so went to the doctor at the beginning of last year (2012). In September 2011 I’d been running and blacked out. Through the rest of the year even though I was careful about what I ate, was swimming 80 lengths of the pool everyday and running pretty regularly I was still gaining weight. It’s weird that I found it hard to climb the stairs at work because my thighs felt so weak but could still swim a couple of km. I found it difficult to sleep and bruised pretty easily.
It was a bit of a shock to be told I might have a very rare brain tumour releasing the hormone cortisol that affects 10 in a Million people. Things went downhill and Cushing’s Disease really started breaking apart my body. My muscles wasted and I carried on putting on fat. Joints skin and feet were all affected. I’ve heard Cushing’s Disease called the ugly disease so yep not great…
Read more at Cushing’s Disease and how a brain tumour made me fat. | Skeptical Artist.
Voices From the Past: Mary S (ladysslipper), Adrenal Bio
July 23, 2025
Adrenal, Golden Oldies ACTH, Adrenal, bruises, Buffalo hump, clinical trial, cortisol, CRH, diarrhea, exhausted, Heptatis C, hyperaldosteronism, hyperplasia, hypothalamus, liver, NIH, nodule, pheochromocytoma, shoulders, skin, sleep, stress, Stretch marks, sweating, weight 1 Comment
Originally from December 28, 2007
I recently completed a clinical trial at NIH because of an adrenal nodule. I also have hyperplasia of both adrenals.
Turns out I have primary hyperaldosteronism (which had previously been diagnosed) as well as elevated cortisol. I was told I don’t have Cushings but could develop it. Yet I do have unbelievably excessive sweating and have just begun to develop what I assume to be a buffalo hump–a lump at the top of my spine between my shoulders that is hard to the touch and painful.
My ability to handle stress is nearly nil; I sleep upward of twelve hours and more a day and yet get exhausted doing the littlest things. I’ve lost a lot of weight over the past two years because of nearly daily diarrhea–which I now believe may be caused by a deteriorating liver as I also have Heptatis C–and yet I have a fatty paunch which is beginning to show stretch marks I didn’t know I had.
My skin heals poorly and bruises very easily. I have splotchy skin, i..e, dark patches and totally pigment-less patches on my face. I was told my hypothalamus produces too much CRH which, in turn, triggers the ACTH to produce too much cortisol.
With two, possibly three, chronic conditions, I am beginning to worry about returning to work after my medical leave of absence ends this January.
I was on the pheochromocytoma support board until my diagnosis, and I know how helpful it was to have a group to turn to. I’m glad to see this one looks like a similarly supportive and informative group.
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Voices From the Past: Maria, Pituitary Bio
July 15, 2025
Golden Oldies, Pituitary, Pituitary Surgery, Recurrence, Treatments bleed, cancer, cholesterol, doctors, endoscope, Golden Oldie, hormones, hump, menstrual cycle, Moon face, Pittsburgh, pituitary, pituitary tumor, pregnant, recurrence, skin, strata, Stretch marks, surgery, tumor, Weight gain Leave a comment
Originally from December 29, 2007
Hi there, I am 26 but I was diagnosed at the age of 16 with a pituitary tumor, 17 when I had removed the first time and 19 the seconded time.
Here is the story. I was pregnant at 15 and gave birth at 16. My son was born in June (I was 135 lbs) by December I was 240lbs. I had all the classis symptoms. Weight gain, thin skin, upper back hump, moon face, lack of a menstrual cycle, high cholesterol and the strata (all over stretch marks).
I was diagnosed in March in July (1999) since I live near Pittsburgh I had surgery with one of the doctors who developed the use of the Endoscope for removal of pituitary tumors. I had been told that the tumor would not come back. It was fine to have more kids. There was one in a billion chance that it would be a tumor that grows like cancer, and then there was a one in a million chance that there would be any of the tumor left behind that could grow back. A
fter words I lost most of the weight and the moon face. I had no need for hormones, because they only remove part of my pituitary, I also graduated high school and was married.
I felt very good when I gave birth to my 2nd son 22 months later (April 01). I was 160lbs. Well, I tried to ignore the weight gain, the lack of menstrual cycle, but when my hump started to come back and when in infant’s finger nail scratched me and I bleed, I self diagnosed this time and went to the doctor for confirmation.
I was 280lbs when I went in for the second time in November (2001). Now I am 90% sure there is a tumor up there I do not know I do not want to have a M I R to see. My husband and I will not have any more kids.
I still have a fear that it will come back on its on or if I suffer a body troma that causes the pituitary to enlarge that it will cause the tumor to grow and I will have to go through this again. I am still struggling to lose this weight. I am now 230
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Elizabeth C (Moonface1561), Pituitary Bio
June 16, 2015
Addison's Disease, Adrenal, Adrenal Insufficiency, Adrenal Surgery, Pediatric, Pituitary, Pituitary Surgery, radiation, Recurrence, Treatments Addison's disease, adrenal crisis, Buffalo hump, candidiasis, Cushing's disease, Dr. Charles Wilson, infection, leg pain, moonface, pediatric, pituitary, radiation, rapid heart rate, recurrence, skin, transsphenoidal, UCSF Leave a comment
The pituitary gland
High schoolvl senior, I was finally diagnosed with Cushing’s Disease. Extreme leg pain, rapid heart rate and overall sick feeling drove this 17 year old nuts. Huge moonface, buffalo hump and torn skin on torso, stomach, thighs and arms did not help.
By the Grace of God, a brilliant pediatric endocrinologist found me and sent me to UCSF for transphenodal surgery. There, other genius pediatric physicians gawked at my monster appearance. The famous Dr. Charles Wilson went into action.
Six years later, my tumor grew back with a vengeance. My cortisol levels reached 3000 as a ferocious candida infection spread all over my body.
My second operation was followed with radiation treatments. I lost my baby shortly thereafter. Years later, childless and fatigued, I was informed that the radiation therapy caused the remainder of my pituitary gland to disintegrate.
I now have secondary Addison’s disease and nearly died one month ago from an acute adrenal crisis. I am lucky to be alive…..swollen and all.
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Rita (Rita), Steroid-Induced Bio
June 2, 2015
Steroid-Induced Blood pressure, Cobetasol Proprionate, colonoscopy, cortisol, CT scan, cysts, Dermatologist, Dr. Neal Breit, eczema, endo, endoscopy, exhaustion, Gerson Therapy, hot, Moon face, MRI, oncologist, ovaries, skin, sleep, steroid, steroid cream, stomach, Stretch marks, striae, ultrasound, weight Leave a comment
Hello to those who are frustrated & suffering!
My real search for a diagnosis began vigilantly just over 2 years ago. I was extremely hot,exhausted,weight gain (unexplained) and not sleeping well and sleeping all the time but extremely fatigued!!! My face became very round and my facial & body skin was a nightmare.
My husband kept saying that he thought it was systemic but I wasn’t sure. And, this sounds so sill but completely true, I was watching an episode of Doc Martin (UK series) where a woman was having trouble and he told her she had Cushings. Well, I had never heard of this disease so I looked it up on the internet and told my husband that’s what I have. Of course, he said that I was being silly.
I had very upset stomach most of the time to I had an endoscopy & colonoscopy where large cysts had developed. I also had burning and nagging pain in my upper thigh area thinking it was my Lymph nodes. Many more cysts were discovered on my ovaries and all the doctors cold focus on were the cysts and telling me that my blood pressure was too high and that I needed to lose weight.
I few months later I noticed small purple striations on my abdomen and just knew I had Cushings. So, I asked my doctor if he could run cortisol test on me and he said no problem. I had also told him at this time that I was using a steroid cream to control my eczema and he said that would not cause not effect me in such a way to cause such problems.
I had beeen to the emergency room, had 4 CT scans, atleast 7 ultrasounds, 2 MRI’s and so many blood tests that I had lost count.
Another doctor had recommended that I see an Oncologist so I saw 2 of them…..still no idea and 2 more visits to the emergency room.
I sent all my files and tests to the best Endocrinologist I could find and still had to wait 6 months for an initial appointment.
During the 6 months of waiting to see my Endocrinologist, my body had taken a severe turn for the worse. I could barely step up onto a curb and would spend 3 weeks straight in a bed.
I was extremely depressed and felt like I was dying!!!
April of 2014 my long awaited appointment to see THE BEST ENDOCRINOLOGIST in the state finally came!!!!! He took one look at me and said you have Cushings without a doubt!!!! he saw all the other files and tests that the other doctors had done and said they all did the same exact tests and have absolutley no idea what they are doing.
This is the best doctor I have ever been to see in my entire life, he spent over 1 hour with my during my first evaluation. (Please know,that he is not even covered by my insurance but I didn’t care……shelled out $510 and it saved my life.)
He would stop asking me questions until he got to the root of what was causing the Cushings. And it was the cream that I was using to control my eczema!!!!!!! Yes, please know that Cobetasol Proprionate will cause Cushings if used on a long term basis.
I had no warnings or instructions from my Dermatologist. He just said use this on your eczema.
Dr. Neil Breit saved my life!!!! He said that I was hands down, the worse case he had ever seen!!! And he said that I would have definitely been dead in 1 or 2years at best.
If you live in the Northeast, please seek out this doctor. He is the best and very passionate & loves his work. He truly cares and brings lots of smiles with his treatment!!!!j
Dr. Breit still spends 1 hour with me on every office there. And I still pay full price but do not mind, because he saved my life!!!
Also, right before my diagnosis, I discovered GERSON THERAPY. Regardless of whatever is wrong or just being healthy, juicing helps me immensely with energy and just feeling better as a whole!!!
Thank you for enduring my long story!!!!! Keep fighting for your diagnosis and don’t stop till you get one!!!
Thank you kindly for reading my story,
Rita in New Jersey
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Did She Have Cushing’s?
April 12, 2015
Carcinoid, Ectopic, Lung Surgery, Other Diagnosis, Pituitary, Treatments 24-hour urinary free cortisol, adrenal glands, bruising, Carcinoid, Carcinoid Lung Tumor, cortisol, cushing's syndrome, endocrinologist, fatigue, female hormones, hair, hair loss, lung, malaise, menopause, MRI, obesity, pap, periods, pituitary, Prednisone, skin, surgeon, thyroid, transvaginal ultrasound 1 Comment
Did She Have Cushing’s?
DR. JEFFREY MILLER, FOR THE INQUIRER
POSTED: Sunday, April 12, 2015, 2:50 AM
By the time A.A. arrived in my office, she had spent almost a year looking for answers.
In November 2012, she was 45 and struggling to lose weight and keep her blood pressure down. What sounds like a common scenario, however, was anything but.
A.A. was experiencing fatigue and malaise, and the area around her eyes bruised easily. Another puzzling symptom: She said she was acutely aware of her neck. It wasn’t pain, but awareness. She was losing more hair than usual in her brush and had stopped menstruating, and her skin broke open easily. Her primary-care physician thought it was early menopause.
She asked family and friends, but no one had such symptoms at menopause. She was increasingly self-conscious as she gained weight. Her primary-care provider referred her to an OB/GYN, and a variety of tests came back normal, including a pap, thyroid, female hormones, and a transvaginal ultrasound.
Worst of all, A.A. struggled emotionally. She felt as though she were in a constant state of agitation, with depression and anxiety. A.A.’s symptoms slowly took over her life. She was becoming a person she hardly recognized.
In July, she ran into a friend who was a nurse. Noticing the puffiness of her face, the nurse asked A.A. whether she was on prednisone. Learning she wasn’t, the nurse suggested A.A. might have Cushing’s syndrome, which results from too much cortisol in the body for long periods. It can be caused by taking a corticosteroid, like prednisone, or by something inside the body signaling the adrenal glands to produce too much of the hormone.
A visit to an endocrinologist confirmed the diagnosis after a 24-hour urine-cortisol test, and an MRI appeared to reveal a small adenoma on the pituitary gland. The endocrinologist referred her to Jefferson to see a surgeon.
Although she was not looking forward to brain surgery, A.A. was relieved to have an answer.
But neurosurgeon James Evans, Jefferson’s director of pituitary surgery, did not think the Cushing’s was caused by the pituitary adenoma. He ordered an additional MRI and blood work, which confirmed his hunch, and he referred her to Jefferson Endocrinology for further detective work.
Solution
When A.A. walked into my office, she was extremely stressed and exhausted. I ordered a chest CT, which revealed a nodule. But it did not fluoresce during a nuclear medicine test, as it likely would have had it been causing the Cushing’s. Next up was a series of scans, but all came back clear.
I still felt the tumor should come out and referred her to cardiothoracic surgeon Scott Cowan.
Three days after surgery to remove one lobe of her lung and the tumor, A.A.’s face already was noticeably slimmer.
Her Cushing’s was caused by a carcinoid tumor the size of a pencil eraser in her lung. The tumor – although not large enough to fluoresce during testing – had been signaling her adrenal glands, which produced enough cortisol, the fight-or-flight hormone, for 24 people.
Cushing’s accounted for all her physical and emotional symptoms. The syndrome can be missed because it mimics obesity in many ways.
With the tumor out, her adrenal glands would effectively go to sleep. She’d need prednisone, which would slowly be tapered over the next year. Fortunately, A.A.’s lymph nodes were clear, and she did not need radiation or chemotherapy.
Over the next year, A.A. got her life and her body back. By January, A.A. was completely off prednisone, feeling and looking like herself.
Read more at http://www.philly.com/philly/health/20150412_Could_brain_surgery_solve_her_baffling_symptoms_.html#xPCBW4wRoFxTCWDh.99
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