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Alicia (Alicia), PCOS Bio

January 3, 2026

MaryO Pituitary , , , , , , , , , , , , , , , , , 1 Comment

Hi everyone,

I’m Alicia and I’m 18. I’ve been diagnosed with PCOS but it does not explain all of my symptoms. I used to be super athletic and played 3 sports. I got my period at 13 and it was regular. However, I started losing my periods.

At first they would come every few months but have since stopped completely. I have lost a lot of weight, especially muscle. I had to stop playing soccer because my leg muscles were giving out. At the same time I got very bad acne and started sweating through all my clothes. My hair started falling out of my head. I ordered rogaine at age 15 because the bald spots on my head were so embarrassing.

I’ve been on 3 different acne medications and accutane. I have been working since I was 14 but I can no longer stand through my shifts even though I am only working 5 hours at a time. I feel like absolute crap and the worst part is I’m so weak. And my appearance has changed a lot. My face is round, red, and my eyelids are swollen. I don’t recognize myself and can’t stand to look in the mirror. My arms and legs are sticks and I can’t gain muscle no matter what I try. I get sick all the time, I’ve had strep twice, oral yeast infections, UTIS in the past couple months.

I went to an endocrinologist about a year ago who tested for a bunch of common hormone problems. All of my adrenal hormones were high. Testosterone, DHEA, androstenedione, and aldosterone. However, my cortisol levels were never tested. I was told I have PCOS but there were no cysts on my ovaries.

I found a new endocrinologist who mentioned testing my cortisol levels, but later decided not to because I am underweight and cushing’s usually causes weight gain. To me, it seems like I could have the atypical kind, which causes asthenia instead of weight gain.

Let me know if anyone has suggestions on what to do now, I would really appreciate it. I am still in high school and I’m genuinely worried for my future if I can’t figure this out.

Peace and Love,
Alicia

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Sushmita Sen’s battle with Addison’s disease

December 1, 2025

MaryO Addison's Disease, Adrenal, News Items , , , , , Leave a comment

It was in 2014 when the actress left her fans shocked when she revealed that she was diagnosed with Addison’s disease. Talking about her condition, Sushmita said that the years she battled Addison’s disease “were pretty traumatising”. After fighting for 4 long years with the chronic condition, the actress healed and emerged stronger by exercising daily.

Addison’s disease is a disorder in which the adrenal glands don’t produce enough hormones. The gland present just above the kidneys starts producing too little cortisol and too little aldosterone. The condition can affect people of all age groups and sexes. The symptoms of the disease develop slowly but can be life-threatening if not treated on time. Extreme fatigue, weight loss, darkening skin, low blood pressure, salt craving are some of the signs of Addison’s disease. Treatment of the condition involves taking hormones to make up for the missing ones. The disease is caused when the adrenal glands are damaged, affecting the production of cortisol and aldosterone hormones.

Post recovery, the 46-year-old actress shared that meditating with nunchaku helped to fight the disease and helped in the healing process. “I healed in time, my adrenal glands woke up, no more steroids, no withdrawals and no auto-immune condition as of 2019,” she had shared. Even after that, Sushmita kept on with her extensive workout to stay fit and healthy. From time to time the actress shares a glimpse of her workout routine which includes yoga, meditation, callisthenics and bodyweight workout.

Adapted from https://timesofindia.indiatimes.com/life-style/health-fitness/health-news/sushmita-sens-battle-with-addisons-disease-and-the-workout-that-helped-her-emerge-stronger/photostory/87988141.cms

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

November 19, 2025

MaryO Adrenal, Adrenal Surgery, News Items, Success Stories, Treatments , , , , , , , , , , , , , , , 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 surgeryNaomi 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
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 removedWhen 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.

Naomi Benton
Naomi Benton

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

Wendy, Undiagnosed Bio

September 19, 2025

MaryO Golden Oldies, Undiagnosed , , , , , , , , , , , , , , , , , Leave a comment

A Golden Oldie

Hi My name is WENDY from New Zealand …I am 57 yrs young…I am a nurse…..it was once suggested by mail to my GP that I may have episodae cushings…and that it would be intersesting to take 24 urine specs for cortisol levels over a period of time….this was never done..I only became aware of these when I asked for a copy of all my notes as I was moving to Australia…..

My symptoms I believed robbed me of my former self…..

I stopped menstruating at 45yrs old….my weight would fluctuate wildly..sometimes by 10 to 15 pound… at one point wighing in at 100 kgs……and for no apparent reason losing weight as much as 4 -5 kgs……my happy out going approach to life would become sad.lifeless with a blunted facial affect…..heat intolerance…low energy…poor sleep…high blood pressure.

I have had the unusual presentation of  supraclavicle pads…..of no suspicious origin…

I have always managed to work but sadly these changes took their toll on my personal life….I remain optimistic.with the support of loving family and friends…..cushie helper I truly feel that my condition occurs in cycles…….

I await your thoughts….sincerely Wendy

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Leslie, Undiagnosed Bio

September 4, 2025

MaryO Golden Oldies, Undiagnosed , , , , , , , , , , , Leave a comment

A Golden Oldie

I have no diagnosis but have a number of questions.  I think for now I would like to read others experiences.

Update September 5, 2011

Hi,

I am wondering if the issues I am currently having may be related to Cushing’s.  So I am actually looking for more information, before I ask my doctor about testing.  I have always been in the short and fat catagory physically, however in the last few years I have gained a rediculous amount of weight all in my middle.  Recently my blood pressure has gone from running very low 110/70 on a high day to 152/108.  I am waiting for more test results, blood sugar, etc.    In the past I had a horrible reaction to a cortisone shot in my knee that resulted in stretch marks that appeared overnight and horrible itching and agitation and am wondering it this was a symptom related to cortisol levels in my system already being to high.

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Hanna, Adrenal Post-Op

August 24, 2025

MaryO Adrenal, Adrenal Surgery, News Items, Success Stories, Treatments , , , , , , , , , , , Leave a comment

Hanna Pierce didn’t expect to learn she had a tumor on her adrenal gland during a CT scan. Just two weeks after delivering her second child and recovering from COVID-19, she went to urgent care with concerns about a possible blood clot. Instead, imaging revealed a tumor in her adrenal gland. “I didn’t have symptoms,” she said. “They were checking for something else and just happened to find it.”

That unexpected discovery in 2021 launched Pierce into a years-long journey that ultimately led to robotic surgery at Baylor Medicine with Dr. Feibi Zheng, an endocrine surgeon who specializes in treating adrenal tumors.

“Many people haven’t heard much about the adrenal glands,” said Zheng, assistant professor in the Division of Surgical Oncology. “They sit on top of the kidneys and produce hormones like cortisol that regulate everything from metabolism to the body’s stress response. If a tumor is overproducing cortisol, it can silently wreak havoc on the body over time.”

Doctors told Pierce that her tumor was consistently producing slightly elevated cortisol, a red flag. “My doctor told me if we left it alone, it could develop into diabetes or full-blown Cushing’s syndrome. At first, we just monitored it,” she said.

In the months and years that followed, Pierce did experience symptoms but attributed them to the demands of motherhood. “After my second child, I couldn’t lose weight no matter what I did. I had anxiety, constant fatigue in the afternoons, and I wasn’t sleeping well,” she recalled. “But I just chalked it up to being a mom of two.”

By 2024, her endocrinologist said it was time to act and referred her to Zheng, who confirmed the tumor was still producing excess cortisol. “Dr. Zheng told me I was going to feel so much better and explained what she was going to do,” Pierce said. “When I went to see her for the consultation, she was very informative. She didn’t pressure me to have surgery but explained everything to me.”

The Baylor Medicine endocrine surgery team, including Zheng and supported by physician assistant Holly Clayton, provided a seamless and collaborative care experience. “Our team-based model allows for better coordination and patient support,” said Clayton, who helped manage Pierce’s preoperative workup and performed her postop visit via telemedicine. “It was clear she wanted answers and a plan, and we were glad to be able to guide her through this process together.”

Zheng performed the adrenalectomy robotically, using a posterior approach — an advanced technique that involves going through the back instead of the front of the abdomen. “It’s a less common approach, but for the right patients, it can reduce pain and speed up recovery,” Zheng said.

Pierce said she felt calm going into the procedure. “Usually, I have white coat syndrome and feel anxious, but this time I didn’t. Everyone gave me step-by-step instructions, and Dr. Zheng explained everything clearly. I really felt like I was in good hands.”

Within a week or two of her June surgery, Pierce noticed changes. “I dropped four pounds almost immediately,” she said. “My face wasn’t as puffy. I felt less anxious and more like myself. Even though I was still recovering, I had more energy, and my body felt like it had reset.”

“Surgery to correct cortisol-producing tumors can make a major difference in quality of life, even if patients don’t meet the full criteria for a Cushing’s diagnosis,” Zheng said. “Mrs. Pierce’s case is a perfect example. She didn’t feel well, but she didn’t know why. Her endocrinologist saw [that] her metabolic parameters were getting worse. Now that the tumor is gone, her symptoms are improving, and her health trajectory is back on track.”

Just a month after surgery, Pierce says she has more energy and is continuing to lose weight. She’s relieved that a straightforward procedure made such a noticeable difference in how she feels.

From https://blogs.bcm.edu/2025/07/23/patient-finds-relief-after-adrenal-gland-tumor-removed/

Voices from the Past: Jessica, Undiagnosed Bio

July 30, 2025

MaryO Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , 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

Christina (Christina10), Pituitary Bio

April 29, 2025

MaryO Pituitary, Pituitary Surgery, Prolactinoma, Treatments , , , , , , , , , , , 1 Comment

Hi everyone, I am Christina and am 22 months post op from transphenodial surgery of my pituatary macronoma. Like so many of the bios I have read on this site I spent years trying to get any doctor to listen to me, because while I insisted something was wrong and I had almost ALL the classic physical manifestations of Chushing’s, after running the basic thyroid panel I was generally dismissed with the advice that I needed to eat less and workout more- advice which infuriated me because as an active duty officer in the Army I was running 3-6 miles a day and going back to the gym after work and down to 1200 calories a day.

I first started to notice a marked physical change in 2005 when I rapidly gained 30lbs in less than 6 months, at the time I was in Law School full time so of course the doctors attributed it to stress even though I was still maintaining my physical activity level as a reserve officer. I also started noticing my once long and full hair thinning and breaking to the point you could really see my scalp and my skin became pale and translucent with constant breakouts. This is also the time when the mood swings and headaches started along with the reoccurring sinus infections and inability to heal from the smallest injury along with black and blue marks all over my body.

Faced with going back to active duty the next year on orders to Korea I basically starved myself and worked out 3 or more hours a day and managed to loose about 25lbs    but I could never get below 160lbs no matter how hard I tried, which baffled me since I started Law School at 130! I begged the doctors every time I went in to run tests but they insisted I was healthy because my blood pressure was always 106/65 and my thyroid tests always came back low but still in normal ranges. Frustrated and defeated I pretty much starved myself and lived on caffiene and supplememts for the next 2 years, trying to avoid the doctors at all costs and doing everyting I could to just make weight when it came time for Army physical fitness tests.

My next run in with the doctor came just before my deployment to Iraq. I had rapidly gained 20lbs back seeminingly overnight and I was now having full blown hotflashes along with headaches so violent they caused my right eye to pulse. After basic blood tests came back relatively normal except for an elevated red blood cell count (which should have been a red flag for the doctor to connect the dots) my doctor informed me she thought I had Hepatitis C and wanted me to go to a Veteran’s weightloss group which consisted of being weighed in in front of a group of 25 cranky old men at the VA!!!!! I had further testing to rule out the Hep C which Iknew I didn’t have since I have never touched an intravenous drug in my life and have always practiced safe sex in my relationships. Of course it came back negitive which should have prompted more testing but once again I was just told to eat less and work out more. The doctor specifically told me I led a sedintary lifestyle because I had an office!!! At this point and after trying the support group for a couple of weeks and being humiliated having to weigh in in front of a room packed with men all over the age of 60, I told the doctor she was basically a moron and that it was impossible that I led a sedintary lifestyle because I ran 6 miles before she even gets up in the morning. Needless to say it was the last time I saw her.

Fast forward 18 months later and I am now back from Iraq, (having lost 15lbs from the heat and Army food!) and am starting to notice the weight returning and hot flashes getting worse, to the point I would just start pouring sweat down my head and back. My regular doctor insisted my body was just needed time to re-acclimate back to the climate! Tired of struggling like most Cushing’s sufferers and under constant pressure to be fit for my job I turned to plastic surgery and had lipo and a tummy tuck thinking it would take care of all my problems. Wrong Wrong Wrong! The surgery went well and I was elated with the results, until the tissue around the suture site started to die. (as you know the inability to heal is a classic sign of Cushing’s) So after walking around with a hole (yes an actual hole in my abdomen!!!) for 2 weeks I had to have reconstructive surgery to fix it. About 8 weeks post op from the surgery even though I was literally only drinking 3 protein shakes a day (because I had just spent THOUSANDS of dollars on cosmetic surgery), I was now gaining weight again!!! My surgeon looked at me in contempt for ruining his work until I told him to look at my breasts which had spontaneously grown a cup size since the surgery. Looking back that was actually an Epiphany in my struggle with Cushing’s because he did look, and then he looked harder at the fatty deposits centralized on my neck and trunk and thighs and in a moment I will never forget, said nonchalantly “I think something else is going on hormonally,” and handed me a lab slip!

That lab slip changed my life. When the results came back I knew finally someone was going to believe me, because not only did my new primary care doctor want to see me but she wanted me to have an MRI because the lab results came back with a prolactin level 86.6 and I certainly was not pregnant. 3 days later the doctor called with the results of the MRI and told me I had a brain tumor, but the good kind, and that there were excellent treatments. Needless to say I was less than thrilled with my “good” brain tumor and wanted the thing out of my head and out of my life as soon as possible!!! But at least finally I had an answer and began doing as much research on pituatary macronomas as possible so by the time I went in for the first round of follow up tests I knew more than my doctors.

What followed from my diagnonsis in May 2010 to the present has been the longest 2+ years of my life. I wanted to have surgery ASAP, but because I tested positive for both Prolactin and ACHT/Cortisol the doctors were divided on a treatment plan and made me do 3 months of observation during which I ballooned up to 198lbs!!! I was also suffering daily migranes and mood swings and harrassment at work because now the physical changes could not be hidden. I started to feel trapped in a body that really wasn’t mine.

After surgery I went into complete adrenal failure and was on hydrocortisone for 6+ months. I felt so much calmer after ther surgery even on the steroids, no more mood swings and I immediately started loosing weight with no effort. Although the nausea and daily throwing up probably helped that cause. But everything hurt, and I mean everything, it would hurt my feet to touch the gound and I would get tired easily. In the 7th month, right after a breast reduction to get me close to my pre Cushing’s size and to help with the sever back pain, I weaned of the steroids which brought more challenges and body aches, but with a lot of vitamins and sticking to a healthy lifestyle I managed to go from barely being able to jog a mile right after surgery to finishing my first post op 10K this month in Central Park, NY.

So here I am today 22 months later and extremely cognizant of how far I have come in keeping off the 30lbs I lost after surgery and gaining back so much of my old self, but also frustrated because I am still suffering Cushings like symptoms and the doctors and I are at an impass again becuase they refuse to really look at my symptoms. My headaches have started to come back more intensely and I have noticed a marked increase in mood swings and hot flashes. I have also (despite living with a personal trainer) hit the wall in my struggle to loose the last of my “Cushing’s weight.” Countless hours of research has also yet to produce any information on coping with Cushing’s after surgery, which is why I am so grateful to have finally found this site.

I am hoping by connecting with other Cushing’s patients I can get a few of the answers the doctors don’t seem to have (or at least the ones I have seen anyway)!!! Because I personally am tired of Cushing’s controlling my life!

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