hi everyone i was on the board about 15 years ago with my first taste of cushings disease, i had a reocurrance in 2008 and a second operation, and am now under investigation again
Voices From the Past: Michelle (tigs68), Pituitary Bio
May 9, 2026
Pituitary, Pituitary Surgery, Treatments Adrenal insufficiency, Conditions and Diseases, Cushing Disease, Cushing Syndrome, Health, Magnetic resonance imaging, recurrence, surgery 1 Comment
Gail S, Pituitary Bio
May 8, 2026
Pituitary, Pituitary Surgery, Treatments blog, cortisol, cushing, Cushing Disease, cushing's syndrome, Endocrinology, Health, Magnetic resonance imaging, MRI, pituitary, pituitary surgery, recovery Leave a comment
After constant wondering for over two years, I was sent to see an Endocrinologist about my weight. Numerous tests and an MRI, I was diagnosed with Cushing’s Disease.
I am 2 months post pituitary operations and things are lookings up.
Heres to a road to recovery! 🙂
See my full story here: www.mylifeasacushie.blogspot.ca
Stacy H. (Stacy H.), Pituitary Bio
May 7, 2026
MaryO, Pituitary, Pituitary Surgery, Treatments cortisol, cushing, Cushing Disease, cushing's syndrome, Health, Magnetic resonance imaging, pituitary, pituitary surgery, surgery Leave a comment
Good Evening, My name is Stacy…I am 1 year Post-Op (2 Pituitary Surgeries in 3 days) and feel absolutely WONDERFUL!
After MUCH reflection I am thankful for what I have gone through. Although Cushing’s Disease is something I wouldn’t wish on any one; I must say I have been and am enriched day by day. Enriched with more knowledge and understanding and the ability to help others.
After 14 years of un-diagnosis FINALLY THERE WAS AN ANSWER. One, there was the Primary Care Physician who suggested it and there after this Board.
MaryO, without you I would probably be in my grave. Thank You for your dedication and sharing so much of your self with us! PS. Thank You for sending my Dear Friend Anne from Australia: she’s the BEST!
We adore you!
Stacy
Voices from the Past: Alex, Pituitary Bio
August 2, 2025
Pituitary, Pituitary Surgery, Treatments Adrenocorticotropic hormone, cortisol, cushing, Cushing Disease, Cushing Syndrome, Magnetic resonance imaging, New York, Pituitary adenoma, Pituitary gland 2 Comments
After long and tiring process was diagnosed with Cushing disease in June 2011.
Had a surgery to remove pituitary tumor in July 2011.
Remained on the cortizol for 18 months.
If you live in New York metropolitan area and have a pituitary tumor and would like to ask some questions or need suggestions, please email me.
I have seen the worst of this disease, but was able to make it through. I was lucky to have right doctors (neuroendocrenologist and surgeon).
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- Pituitary tumor size not definitive for Cushing’s (cushieblog.com)
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Voices from the Past: Jessica, Undiagnosed Bio
July 30, 2025
Undiagnosed ACTH, adrenal fatigue, Adrenocorticotropic hormone, blood, Blood pressure, Blood test, bruising, cortisol, Cushing Disease, Cushing Syndrome, depression, dexamethasone suppression test, dry skin, exhaustion, Health, inflammation, insomnia, Magnetic resonance imaging, MRI, pain, strength, stress, stress fracture, Sweden, urine, urine test, weight, Weight loss 1 Comment
First of all – I have to excuse my language – I’m Swedish, and will not always be able to find the right words.
After several years of increasing symtoms some of which worsened severely a couple of months ago, I finally found “Cushings disease” and recognised most of the symtoms. I’ve suffered from severe depression and thereafter adrenal burnout, and have explained most of my problems from this point of view. It’s “only” stress related, I’ve thought to myself.
I’ve always been slender, but gained weight using antidepressives. After ending SSRI I managed to loose weight again (I love running, and exercised a lot!) But my face stayed round and my belly stayed big. (Today BMI 21 and look 7 months pregnant)
I’m very easily bruised since several years.
I wake up several times each night and it’s often very hard for my to fall asleep again.
I get easily exhausted, mentally and physically. I’ve got lowered simultan capacity, am sensitive to impressions (sounds and vision)
My skin is very dry and thin and looks like paper on the back of my hands and on my lower legs.
My cheeks are always red, as well as the front of my neck.
I’ve always had extremely low blood pressure, and now it was high (in the lower region)
Inflammations won’t heal. I’ve had stressfractures in my left foot twice the last couple of years.
My legs always hurt.
The last two months my strength has decreased a lot!
I’m always thirsty and pee a lot.
I live extremely healthy (Exercise, eat good, hardly any sugar, exercise bodyscan/meditation, minimum of alcohol – my day ends extremely early) – all in order to manage my part time job, and my two children who are in great need of me.
And now we’ve found that my cortisol is high (urine and blood), ACTH is high and I’ve been a patient for a couple of days for several bloodtests, another urinetest and dexamethasone-test. Tomorrow I’m scheduled for an MRI, and next week I’ll see a doctor to get the results.
It seems that I’ve got Cushings – and my first feeling was a sense of relief. All this suffering all these years, and I’ve always thought that I wasn’t trying hard enough. And the explanation was that something was growing in my head that they would be able to cut away. And the tumour is almost always benign.
But having read some stories on the internet I’m suddenly scared. I realize that you are in deeper need of writing if you don’t get well, but still I’m suddenly very scared.
If anyone out there is a “success” (when it comes to getting well again) please respond. I desperately need hope.
Jessica
Voices from the Past: Rebecca D (RebeccaD), Pituitary Bio
July 7, 2025
Pituitary, Pituitary Surgery, Treatments cortisol, cushing, Cushing Disease, cushing's syndrome, Health, June 2011, Magnetic resonance imaging, MRI, petrosal sinus sampling, pituitary, surgery, transsphenoidal, tumor, weight, Weight loss Leave a comment
Hi all!
I am a 24 year old little miss you was diagnosed with Cushing’s Disease in Spring 2010.
I did a ton of tests, including pretosal sinus sampling and MRI’s, and although images and direct location of the tumor were not possible, my doctors were able to confirm a pituitary origin for my cushings.
I had my first transphenoidal surgery in June 2011 and was finally off replacement cortisol by mid november 2011.
In august, as I began to tapper off my medications, I was FINALLY able to loose some weight, loosing 30lbs between August and December.
I stopped losing weight and began another downfall in my stupids between february 2012 until april, at which time my monitoring tests showed my cortisol levels to be again up around the same levels pre-surgery 🙁 so sadly I’m looking again into what my life entails with this Cushing’s having resurfaced 🙁
Woman with hump on her neck diagnosed herself with Cushing’s disease
March 3, 2018
News Items, Pituitary, Pituitary Surgery, Treatments anxiety, bruising, Buffalo hump, Cushing Disease, hair loss, migraines, Moon face, muscles, newspaper, osteoporosis, pituitary, tumor, weight Leave a comment
Jennifer Trujillo, 33, noticed she was mysteriously gaining weight and losing muscle despite training for an athletic event in 2012
A woman who lived with unexplained weight gain and debilitating symptoms is finally getting her life back after diagnosing herself with a rare hormonal condition.
Jennifer Trujillo, 33, noticed she was mysteriously gaining weight and losing muscle despite training for an athletic event in 2012. She consulted doctors, but they were unable to identify the cause.
As time went on, the music consultant and video director,from Santa Fe, New Mexico, noticed that her hair was falling out, her skin bruised to the touch, her face was increasingly round, and her bones were becoming more fragile, with her foot breaking unexpectedly.
Her anxiety increased, and Jennifer, who also suffered from debilitating migraines, consulted her doctors again. Experts told her she might have a thyroid problem, bad genes or the start of osteoporosis.
‘I was training for an athletic event and started noticing that I was gaining weight, not losing it. I was losing muscle, not gaining it,’ Jennifer said, recounting her symptoms. ‘Shortly after that my blood pressure shot up through the roof.
‘My face was taking on a moon shape, very round and chubby. My anxiety was so high. Unbelievable migraines. I’d explain all these things to doctors for years and nobody would listen to me.
‘They said I may have a thyroid problem, or I may be getting osteoporosis, or I just had bad family genes and I would have to struggle to stay a good weight. But none of it made sense. I was even referred to a therapist because they said I was making up too many symptoms to make sense.’
To Jennifer, none of these explanations seemed plausible because she was working out twice a day and eating a vegan diet.
It wasn’t until she noticed a hump growing on the back of her neck, known as buffalo neck, that she googled her symptoms and found they matched those of Cushing’s disease.
Jennifer had always thought the bump was due to her ‘terrible posture’, but she discovered the hump was in fact a symptom of the condition.
‘One night I was looking at it and I was so disgusted so I googled the words “fat on back of neck”, and this thing called buffalo neck came up,’ she said. ‘From there, everything unfolded. I found Cushing’s disease and it was every symptom I had to a T, everything down to my foot breaking out of nowhere.
‘I took this information to my doctor and he was the only one who listened to me. He helped me and the rest is history. He himself was amazed I diagnosed myself with such a rare disease.
‘In my best description I would say Cushing’s slowly attacks different areas of your body. You literally experience pain and symptoms from head to toe, and it felt like each week I was waking up to something new.
‘I was able to maintain a somewhat tolerable weight before this because I became obsessed with working out and eating healthy because all this time I just thought I couldn’t lose weight. My doctors mentioned that if I hadn’t done all of this activity then I would have been in much worse shape. I’d easily be over 200 pounds, may have diabetes, osteoporosis, the list goes on.’
Cushing’s disease develops when the body makes too much cortisol. The condition often develops as a side effect of treatments for inflammation and autoimmune conditions, but can also develop as a result of a tumor inside one of the body’s glands.
The main treatment is to stop taking the medication causing it or to remove the tumor. If left untreated, the condition can cause high blood pressure, which can lead to heart attacks and strokes. It affects about one in 50,000 people.
Jennifer found out she had a tumor on her pituitary gland that caused the body to overproduce cortisol.
Thanks to her active lifestyle, Jennifer’s weight gain, which saw her going from 105 pounds to 145 pounds was not as significant as it could have been.
Jennifer had surgery in August last year to remove the tumor on her pituitary gland and has been rebuilding her life ever since.
For Jennifer, recovery has been more difficult than living with the condition itself. She sometimes struggles to get out of bed as her body adjusts to producing less cortisol, meaning she feels less energetic.
However, her symptoms started to disappear almost instantly after the operation.
‘After surgery my symptoms quickly started to disappear like rapid fire. It was crazy,’ she said. ‘My weight dropped. I stopped bruising. The hump on my neck went down. My bones healed. My hair grew back. My face returned to its normal shape, and the best part, my blood pressure returned to normal.
‘My friends and family are amazed. Every time I see someone new they say I look like a completely different person.
‘Recovery is hard. I’m still going through it. Believe it or not it’s been harder than the actual disease. When your body is used to producing so much cortisol to all the sudden be producing nothing, your body crashes.
‘Some days it’s hard for me to get out of bed and move, I’m tired all the time and have zero energy. I’m only able to walk at the gym maybe two days a week. I’m currently on cortisol replacements so that my body levels out. Every two weeks I reduce my medication because the goal is to be completely off it and have a normal functioning pituitary gland.
‘However, every time I reduce my body crashes all over again, so it’s like a never-ending cycle. But I know that someday it will get better so I’m getting through it.’
Jennifer, who has been charting her progress on Instagram, shared her advice to others who might be suffering from similar conditions.
‘Never give up trying to find an answer and push your doctors to listen to you,’ she said.
‘If I hadn’t discovered this on my own I’d probably still be suffering.’
Read more:http://www.dailymail.co.uk/femail/article-5450135/Woman-diagnoses-rare-hormonal-condition.html
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