I am recovering Ectopic Cushing survivor, I am 52 years old, I originally got sick when I was 22 it was 1987, I went un diagnosed for 12 years. I had every symptom there is with Cushings from the crazy weight gain to blood pressure being at stroke levels for the 12 years and terrible vision issue that I still struggle with today.
I had 2 surgeries, first I had the Pituitary surgery which left me on deaths door, miss diagnosis of Pituitary when it actually was ectopic with a nickle size tumor in my right lung between my upper and middle lobes. they removed all but a potion of my upper lobe.
I have struggled with vision issues ever since as well as depression, terrible fatigue and all of the other issues that come with having Cushings!
Cushing’s with a pituitary tumor. Had surgery on April 2013.
Surgeon nicked the pituitary gland giving me adrenal insufficiency. Sept 2016 went into adrenal crises while on holiday in Germany. I believe I was given too much prednisone as I have cushing’s again from too much prednisone.
I am working with my Endocrinologist plus an MD with a MSc who is an expert in nutritonal biochemistry.
Casey Dailey, age 38, was fighting Cushing’s disease, a pituitary gland disorder often caused by a tumor creating excess cortisol. She had surgery Aug. 23 and went home the next day. Over the following weekend, she began feeling sick. She vomited, sometimes with blood. Then, she couldn’t stand or talk, relatives said. A high fever started Sunday, after floodwaters surrounded her home, and she became unresponsive.
In the midst of Hurricane Harvey, one family’s cry for help was particularly acute. It was a medical emergency.
Casey Dailey was recovering from surgery at home and needed an ambulance on Aug. 27.
But floodwaters had reached the doorstep of her northeast Harris County home between Greens Bayou and Sheldon Lake.
Her husband, Wayne Dailey, frantically called 911 that afternoon. The line was busy. He dialed more than two dozen times and got through. Help was on the way, he was told, but no one showed up that day or the next.
“That’s when I went to social media,” said Darlene Zavertnik, Wayne’s mother, who lives in Montgomery County. “I went on Facebook and put together a letter.”
Friends and relatives began sharing the post. A cousin called volunteers while Wayne tried 911 one more time and asked for an air rescue. He was told that they were already on the list.
“You don’t understand. She’s dying,” Wayne Dailey recalls saying.
Feeling completely hopeless, he saw some people trolling in a boat just after noon on Aug. 29. Wayne ran out in the water to flag them down. The crew turned out to be the famous civilian volunteers from Louisiana’s Cajun country.
“They came to the house and they got her in that boat,” Zavertnik said.
The Cajun Navy transported Casey Dailey to an airboat. From there, she was loaded onto a dump truck. Confusion about emergency medical sites led to a stop on the side of the road, which is when she stopped breathing, relatives said. An ambulance finally arrived and paramedics worked on her 15 to 20 minutes.
“They got her to the hospital and they just could not …” Zavertnik said, her voice trailing off into sobbing. “We just don’t want anything like this to happen to anybody like her again. There has to be a much better system for this.”
The Harris County Institute of Forensic Sciences recorded 4 p.m. Aug. 29 as the time and date of Cassandra Dills-Dailey’s death at a Humble emergency room. One week later, the cause and manner remains pending. She is not listed among the institute’s storm-related deaths, which all involve drowning or electrocution in floodwaters.
Casey Dailey was 38. The devoted mother had two sons, 14-year-old Luke and Ronnie, 10. She homeschooled the oldest.
She also reached out with kind gestures, such as crocheting baby blankets for strangers who were expecting.
“She was probably one of the sweetest, most loving people you’d know,” Zavertnik said. “She was just always wanting to do what she could to help people, make them happy and make them feel good. She was very special.”
Jessica Lee Pierson, 35, of Harrisonburg passed away Wednesday, August 29, 2018 from complications of Addison’s disease.
Jess was born in Fredericksburg on June 27, 1983, to Janet Pierson and her late husband, Charles Parke Pierson. Jess attended James Monroe High School where she was a stellar athlete and honor scholar. After graduating from James Madison University, she spent two years on the mission field in Peru, sharing her love for the Lord. Residing in Harrisonburg, Jessica excelled at her job as a social worker for Rockingham County and nurtured her clients with compassion, respect, and gentleness. She was an active member of Covenant Presbyterian Church, continually embraced by her family of faith who journeyed with her since her days as a college student.
Jess had a beautiful smile, and a sweet and simple demeanor that won the hearts of many, who even now are being inspired by her witness of faith. She was utterly devoted to and dearly loved by her close-knit family.
Survivors include her mother, Jan Pierson and husband Frank Graebner; brothers Daniel Pierson (Anne) and Christopher Pierson (Elissa); and sister Emily Moore (Michael). Her signature gift of loving thoughtfulness, especially in her role as “Tia” to her beloved niece and nephews, Mary Claire, Lukas, Nicholas, and Parke, overflowed through her kindheartedness, unselfishness, and generosity, and will never be forgotten.
Interment will be held at 10 a.m. on Saturday, September 1 at Oak Hill Cemetery. A service to celebrate her life will follow at 11 a.m. at Fredericksburg Baptist Church.
In lieu of flowers, memorials may be made to Missions Ministry of Covenant Presbyterian Church, 32 Southgate Court, Harrisonburg, VA 22801 or Fredericksburg Baptist Church.
My bushings has been caused by corticosteroids. I have been on steroids or 40years daily.for severe brittle asthma. I have been on prednisolone and iv steroids on hospital admissions for years. I did suffer from cushingoid symptoms caused by fluid but they settled as the steroids were reduced. About 4/5 years ago i was struggling with the extremely high doses of prednisolone so I was put on intramuscular Kenalog of 40ml/mg every 2 weeks. This was to be a short term fix but went on longer.
Unfortunately this was not monitored and reduced at all. Even though I was experiencing pretty obvious symptoms of bushings I could not gt anyone to look at this so I got worse and wore.
Eventually I saw my Resp Consultant on 4thJuly and got the diagnosis. This was a horrible relief.
Immediately I was put on a 2.5ml/mg education every 2 weeks to try to lower the cortisol levels.
Bit like closing the gate after the horse has bolted! To say this is hard is an understatement as what with the side effect from the cushing as everyone will know this is hell there is the withdrawal from the corticosteroids too. They all morph into one so I don’t know what is happening.
I have tried to get some answers from the medical profession but can’t get any information at all.
The Cushings side effect weight, stretch marks etc are still getting worse and I can only think that this is because I am still being loaded with steroids.
I appreciate that my bushings is caused by steroids and not a tumour but if any one has any advice how to cope with this I would be sooooooooo grateful.
Hi. For the last couple of years I have had different symptoms. I’m 45 and feel like I’m 70. I think it started about 3 years ago. I would break or fracture something and it would take forever to heal. I gained over 60 lbs. I’m always tired yet don’t sleep well. I look like I’m 9 months pregnant but skinny arms and legs. Stretch marks on body. Round red Face that constantly feels hot. My back has a hump and my neck has fat pads. Finally, prehypertension. I also have intense itching especially in a soecific area. Oh, let’s not forget anxiety and focus issues. .
I had enough. About 7 months ago I began going from doctor to doctor. Every test came back fine and they dismissed me. Finally, I went to an endo. She tested me for Cushings. I gad 5 tests and all came back positive. All this took time but I tried to be patient. I know this is horrible but I was actually happy to finally have an answer to my issues. I then had a CT scan and found an afonona in my left adrenal gland.
I had surgery a week ago today. I’ve heard so many different stories of figuring out if they have cushings but little about their recovery. I’m hoping to hear people’s recovery stories. I’m actually much better than I thought I’d be. I’m weak, still some pain at surgical sight, out of breath, and very emotional. Also, hard to do an intellectual activity before feeling overwhelmed.
Can you all share your journey? I’m taking 40 mg of hydrocortisone a day. I was wondering if anyone had itchiness as a symptom. Doctors have told me that they haven’t heard of that as a symptom of cushings. It is horrible with me and am hoping it will go away with this surgery. I feel like it has gotten better.
Looking forward to hearing about some recovery stories and feel free to ask me anything to help other understand what they are going through.
I am now 65 years old. I was first diagnosed with Cushings Syndrome in 1995 after 2 years of weekly doctor office visits stating that “my blood tests came back ok, so it must not be anything serious”.
My blood pressure shot up to stroke levels daily, my hair was falling out, I gained about 8 lbs in 6 months, had the moon face, buffalo hump, etc.,etc..
Every possible test imaginable was done to find the problem except a CT scan. The CT scan I had (after 2 years) revealed that I indeed had a tumor on my adrenal. I went to surgery and had the tumor and adrenal removed.
In fact, if I may interject, I was the “guinea pig” for the Laparoscopic Adrenalectomy performed by the doctor who invented the procedure. I was subjected to hundreds of observations while I was in the hospital for 2 days by student doctors and other Endocrinologists who wanted to see the outcome of the new procedure. Anyway, I went home after the surgery, returned to work in a week and was told I would not have to worry about ever getting this again.
I have had problems of various natures since the surgery. They have not required surgery but have been very emotionally upsetting. I can not seem to lose weight no matter what I try and I have tried it all. I did lose about 50 lbs shortly after surgery but I am still overweight and cannot seem to get it off.
I know my age isn’t helping but I am very physically active even with my age. My middle section is fatty, my breasts are enornous which is not a family trait, and I had had a total hysterectomy in 1994 at the age of 46 and I suffer daily with extreme hot flashes and mood swings.
The hot flashes are affecting my life. I am miserable. I have talked with my doctor about the weight, hot flashes, irritability but he doesn’t think it is caused by the Cushings from before. I DO!!! I have not been to an Endocrinologist since I was diagnosed back in 1995 so I have not had my levels checked. I don’t know what to do. I’m starting to think like I did back in 1995, that this is all in my head and it’s my fault that I cannot get relief for these symptoms I still have. I do not have a OB/GYN because my old one retired.
So, I am hoping that there is someone who has advice for me . I didn’t know this resource was here but I sure am glad I found you.
Jordy is a British man who has been dealing with Cushing’s and many surgeries.
He finds rollercoasters boring, barely broke a sweat zip-wiring off the Tyne bridge and even a parachute jump did not raise his heart rate.
Just a few years ago even the thought of daredevil exploits would have terrified him, but now Jordy Cernik is frightened of nothing.
While that might sound an ideal scenario, the 38-year-old’s new-found bravery is actually the unexpected side-effect of surgery for a rare condition.
Cushing’s Syndrome resulted in the dad-of-two having an operation to remove the gland which produces adrenalin, the hormone which makes us feel scared.
He says: “I would never have had the guts to do any of this, but now nothing fazes me. I’m up for anything – I’m even thinking about doing a wing-walk on a plane too.
“I nearly did a bungee jump a few years ago, but I just couldn’t do it.
“Now I just take whatever is thrown at me and if a challenge helps me raise money for charity, the more daring the better.”
Over the past four months he has completed the parachute jump and zip-wired from the top of Newcastle’s Tyne Bridge and now he is getting ready to complete the last of a trio of challenges – next month’s Bupa Great North Run.
“The doctors didn’t tell me this could be one of the side-effects of the operation,” says Jordy. “But then the condition is so rare I don’t think they know everything about Cushing’s yet.
“Doing the skydive was the ultimate test. I thought that if I was ever going to get scared again then that would be the moment.
“But as we took off in the plane I felt nothing, and when I edged towards the door to jump I felt nothing, and even when I leapt out and pulled my parachute, I didn’t feel scared at all.
“It can be quite frustrating as well though.
“The first time I realised I had changed was when I went on the rides at a theme park with my kids and I just didn’t feel a thing. I just sat there, bored.”
However, the last of his hat-trick of challenges, the Run, will require him to push through the ever-present pain which he has endured for years as a result of Cushing’s.
Britain’s biggest mass participation event, for which The Daily Mirror is a media partner, takes place over a 13.1 mile course from Newcastle to South Shields.
But the syndrome has left Jordy, from Jarrow, near Newcastle, with arthritis, back problems and brittle bones. Worse still, the absence of adrenalin means he now lacks one of the body’s natural painkillers.
“I’m always in pain,” he says. “I’ve just had to learn to zone it out day-to-day and I’m going to have to do that even more when I’m on the run.”
Cushing’s affects around one in 50,000 people in Britain.
It causes a malfunction of the adrenal and pituitary glands which means increased amounts of corticosteroids are produced – often leading to massive, irregular weight gain.
In just three years 5ft 8in Jordy ballooned from 11st 5lb to almost 17st.
While his limbs remained slim, the former Territorial Army recruit saw the pounds pile around the major organs in his torso and head.
“I went through years of hell and I can only describe it as living in someone else’s body,” says the part-time radio presenter and events host.
“I developed this big round moon face and really quite large man boobs, which was so embarrassing.
“But there was absolutely nothing I could do about it. I could go to the gym six days a week and still couldn’t lose any of the weight.
“One of the worst things was that people would stare.
“Sometimes they’d take the mickey – often to try and make me feel better, by making light of things – but it would almost always hurt my feelings.
“And my career as a presenter suffered. I tried to play up to the character of being a big, jolly chap but I always felt I was too fat for TV, which is what I would have liked to do a lot more of.”
But it was the effect on his home life with wife Tracy, 43, and daughters Aimee, seven, and four-year-old Eive that for him was far worse.
“I had other really difficult symptoms which included profuse sweating which meant I couldn’t even hold my kids without wrapping them in towels first,” he says.
“Anyone who has children knows how hard that is, not to be able to do normal things. I often used to be in tears.
“Another symptom was extreme grumpiness, so I would find myself suddenly getting really angry and just exploding at them, plus I was always too exhausted to play with them. It was terrible.”
Jordy believes he can trace his symptoms back 15 years although his Cushing’s was only diagnosed in 2005.
He had visited his local surgery with a string of complaints, but by chance saw a different doctor one day and the syndrome was diagnosed.
“I don’t have any ill-feeling about that,” he says, “because the syndrome can be tricky to spot, partly because it is so rare.”
He went on to have both his pituitary and adrenal glands removed but needed a total of seven operations between 2005 and 2010 and not all went smoothly.
During one to remove his pituitary gland, which is inside the skull, the lining of his brain burst due to the stress of repeated surgery.
And while removing a rib to access the adrenal gland in his torso, his lung was punctured.
That wasn’t the end of the complications. He later developed severe meningitis and ended up on a life-support machine.
“But I still consider myself lucky,” he says. “The doctors told me, ‘You died twice really, you shouldn’t even be here’.”
Things have begun to look up in the past few years, however. The Cushing’s is in remission and Jordy has lost four stone.
His life hasn’t returned to normal entirely – he still has to take 30 pills a day, a cocktail of painkillers and hormones, plus drugs to slow the corrosion of his bones.
He has also been diagnosed with another rare condition, sarcoidosis, which creates nodules of irregular cells in the body and can cause serious complications. He’s convinced he has always had it but it has lain dormant until his body was at its most vulnerable.
At present the nodules can only be found on his skin and he’s being monitored to ensure that it doesn’t spread to his internal organs.
Thanks to the surgery, his life has improved enormously since 2010.
In July he had a breast reduction op which not only improved his appearance but also removed the dangerous accumulation of fat around his heart.
Part of this new chapter involves taking part in the Great North Run and raising money for the Cash for Kids appeal run by his local radio station Metro Radio.
The appeal aims to help children and young people in the North East who are disabled or have special needs, or those who suffer from abuse or neglect.
Jordy’s fundraising goal is a relatively modest £1,000, but for him joining the half marathon’s 56,000 participants on September 15 will be as rewarding as hitting his target.
“I really don’t know if I’ll be able to complete the course.” he says. “But I’m looking forward to it and I’m going to give it my best shot.
“Not feeling fear may feel like the power of a superhero, but what I really need for the Great North Run is superhero strength.”
The Bupa Great North Run is Britain’s biggest mass participation event and is organised by Nova International.
It will include world class athletes Mo Farah, Haile Gebrselassie and Kenenisa Bekele – plus 56,000 other runners.
The event is live on BBC One on Sunday 15th September between 9.30am to 13.30
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.
I will never forget the day my hair loss went from “God, don’t I leave a lot of hair around the apartment” to “F***!!!! ”. I’d always considered my hair as one of my best features, it was long, wavy, strong, shiny and I loved it! When I started to see handfuls coming out in the shower it was terrifying. I was like a chemotherapy patient, it was unstoppable and devastating. I saw up to three GPs (Family doctors) who all only seemed interested in the level of stress in my life. Not one of them really took me seriously, I did a couple of blood tests, out of my own persistence that something was wrong, but nothing jumped out of these results to my doctors. I kept being told that my hair was falling out because I was stressed but I was stressed because my hair was falling out!
To be fair, this was a particularly stressful time in my life. I had just finished a year working abroad, in Portugal, which I’d found very lonely and isolating. I’d just returned home to Cork but things didn’t pan out the way I had hoped they would on my return. I was living on my own and trying to reacclimatise to something which wasn’t the same. Around the week leading up to the extreme hair loss I’d found myself in a particularly stressful situation. After about two weeks the hair loss settled down from terrifying to worrying. Since no one seemed as bothered by it as I was, I let it take a back burner. The doctor told me it was normal, the hairdresser told me it was common, I fell into accepting that there wasn’t a problem.
Flash forward five months and I’m sitting in my bosses’ office for a meeting. I look down at my arm, both my arms are covered in purple spots. It’s not itchy. It looks like a rash. I run a glass over it. The spots don’t disappear. I let out a loud exhale “phew it’s not meningitis. I’m fine”. I go to carry on with the meeting. My boss is having absolutely none of it. She knows that whatever is on my arm is weird. So she bundles me into a taxi and sends me off to an urgent care clinic. Since I was working as a chemist at the time for a pharmaceutical company, the obvious questions were “were you in contact with any chemicals?”, “are you allergic to anything you’re working with?”. I knew I hadn’t been exposed to anything so I decided to tell the nurse about my hair loss. I can’t thank this woman enough for the next question she asked me. This was a moment, although I didn’t know it at the time, that went onto change my life. She asked me “has the shape of your face changed?” To this I went ABSOLUTELY!
I’d put on weight in the previous year. It had started when I was living in Portugal. I’d put it down to a diet of beer and white bread. I hadn’t known, but any friends who’d come to visit me had thought that I’d put on a very noticeable amount of weight in a very short time. But this hadn’t made sense to me. I was working out at least 5 days a week and even up to 7 days a week. I was lifting weights and getting weaker not stronger. My diet was excellent (except for the booze and cigarettes) but my face and middle just kept ballooning while my arms and legs were turning into sticks. My clothes weren’t fitting. I was ashamed of my face and belly. I wouldn’t let myself be photographed. I was disgusted by my own body.
So, this nurse spotted something which no one had spotted before. She believed me, she knew that something was wrong and she (along with my wonderful boss) started me along the road to diagnosis and recovery.
Next comes a tremendous mistake from me. My attitude of “era it will be grand” nearly ruined my life and landed me ill in a very serious way. If I’d done what I was supposed to do at this point my disease would have been diagnosed and treated before it started to run away, with me dragged along behind it. I know why I didn’t pursue diagnosis. I was lazy about doing the testing, the hair loss had calmed down, I still just thought I was fat and I didn’t realise how sick I was because I had so many symptoms which came on so gradually that they just became normal to me.
I had my first appointment with an endocrinologist in April 2015. Turns out she knew from one look at me what was wrong. She recommended a 24 hour urine test but I had to be at least 6 weeks off of oral contraceptives for the test. I went off the contraceptives but by the time the 6 weeks had passed I just didn’t bother. I didn’t want to carry around a pee bottle for the day and besides the hair loss had settled down and I wasn’t sick was I?
How did I not realise I was sick?
I’d almost gone bald
I was constantly covered in bruises for no reason which didn’t heal
I never got to the bottom of my strange rash
I was swimming in a constant brain fog
I couldn’t sleep at night but I was tired all day
I put all of my symptoms down to sessioning too hard, being hungover all the time and injuring myself when I was drunk.
That was until I woke up one morning at my friend’s house, admittedly after a night of drinking, without the use of my arms, legs or hands. I woke up really early in the bed with stiffness in my limbs. When I got out of bed my legs were no good to me. I dragged myself to the bathroom on my hands and knees and sat in the shower to wash myself. I went down the stairs on my bum, got into my car and tried to drive home to my mam’s house. It took me about an hour to do a 10 minute drive. I couldn’t get out of second gear because I couldn’t press the clutch, which was just as well because my right leg was no good for using the brakes. Once I got home, naturally I was a bit concerned but I’d loosened out after a bit of movement and strangely wasn’t all that bothered by my period of paralysis!
Once I walked in the back door of my house, with my mother behind me she spotted one of the oddest things! It was like someone had thrown a cup of coffee at the back of my head and it had dried on the back of my neck. At this stage my hair was so thin that the only way I wore it was in a bun at the back of my head. This strange staining was there for all the world to see! I’d no idea how long it had been there given it’s not a part of my body I spend much time looking at. Turns out it had been there about a week and I could even see it growing and spreading up into my hair line and around the front of my face.
Mam wanted me rushed to the emergency unit. I wasn’t so keen on that, so we compromised. It being a Saturday we went to the on call doctor. Now starts the saga of doctors prescribing me steroids, steroids and more steroids. Little did I know that my problem was having too much steroids. I hadn’t heard mention of the term “Cushings Syndrome”. Nobody had brought this up. I took the steroids I was prescribed. I went downhill. I wasn’t experiencing the paralysis but I was having horrendous joint pain. I would watch as my hands, elbows knees and ankles swelled to size of large oranges. I couldn’t use a pen with my swollen fingers. Stairs were a struggle with my swollen knees. I hobbled around like an old woman. I didn’t understand what was going on with my body. I was panicking. I went to my GP in Cork, she prescribed a higher dose of steroids. It was only worse I got. She prescribed higher doses of steroids again. I felt this doctor wasn’t helping me, she wasn’t listening to my concerns and her only idea was to keep upping my dose of corticosteroids. What a disaster!
Luckily, my aunt is a docotor in the major hospital in Cork. She got wind of my problems, pulled some strings and had me admitted to the acute care clinic in her hospital for the following day. This was the first of my “holidays to CUH” as I started to call them. Here I saw what I can only call a plethora of doctors. Consultants that take months to years to get appointments with were calling to check on me willy nilly. I saw emergency consultants, rheumatologists, dermatologists, radiologists and finally the endocrinologist. We were all working to the assumption that I had some strange sort of viral arthritis which was causing my joint pain and swelling.
face
It was here in hospital that someone got to the bottom of the strange coffee stain on the back of my neck. It was merely a fungal infection (tick off the symptom of persistent infections).
After having received a very stern talking to from the endrochronolgist I proceeded to do a battery of tests including 24 hour and 48 hour urine samples, dexamethasone 24 hour and 48 hour, several trips and “holidays to CUH” all culminating in a MRI to confirm that I had an adrenal tumour producing far and above the natural and required levels of cortisol. This was the answer to everything.
After my diagnosis I started reading up on the symptoms of Cushing’s Syndrome. I realised that I had every single symptom on the list. Things that I hadn’t even realised were wrong with me until I gave myself permission to be ill.
I had the stretch marks on my arms, sides and legs. I’d though these were from my weight gain but who gets stretch marks on their arms? Turns out my skin was so weak it was tearing.
The cognitive deficiencies. I am someone who had always prided themselves on their intelligence, ability to think on my feet, to understand things rather than learn them. I’d always been a high achiever. I’d noticed myself getting stupider. I would be looking at someone talking to me and I’d be trying to figure out what day of the week it was. I found holding a conversation extremely difficult and very stressful. I wasn’t able to engage with people.I wasn’t able to listen, concentrate or respond. My memory was non-existent. Trying to think was like trying to swim through a thick, gloopy soup. I had put this drop in mental ability down to the partying and finding out that maybe I wasn’t as capable as I thought I was in the working world.
Bio, Continued: The bruising. I was bruising my arm from putting my handbag on my shoulder. The purple dots were actually tiny bruises. My legs were constantly just purple. I couldn’t heal. I was doing so many blood tests that the skin on my arms was constantly purple and wouldn’t heal.
Lack of libido. What libido?!
Irregularities with my period. I wasn’t getting periods at all since I’d stopped using oral contraceptives. I knew I wasn’t pregnant, see the point above and thought that I was just skipping some periods.
Brittle bones. I was diagnosed with osteoporosis at 24.
Joint pain. I wasn’t able to bend my knees to get up or down stairs. My bedroom is three flights of stairs from the kitchen. More than once I ended up stranded in the kitchen, not able to get back upstairs to lie down on my bed and feel sorry for myself.
The swelling wasn’t confined to my joints. There were days my face was so swollen it was hard to see out my eyes as my cheeks inflated and rose to meet my brow bone.
Sleep. I’d turned into an insomniac who wandered the house late at night not awake enough to do something but still unable to sleep.
Body hair. I was managing to grow a beard despite going bald! I started to get my cheeks waxed thinking this was a normal cosmetic procedure that other girls just didn’t talk about.
Stress. The choice between two different types of cheese could cause me so much anguish as to leave me in tears.
Up until the point where I was diagnosed, I hadn’t allowed myself to be sick. After the diagnosis I never let myself feel sorry for myself. I just got on with it. Planned for surgery and that was it.
In October 2015 I underwent a full left adrenelectomy to remove a tumour from my adrenal gland.
After the surgery I’d a whole new condition to learn to deal with. My right adrenal had been suppressed while my tumour was active. This left me with no natural cortisol in my body. A 180 deg turnaround from being pumped up on steroids 24 hours a day. I was on replacement steroids but my body was readjusting. I slept most of every day. I couldn’t pick up a carton of milk. If I didn’t take my medication I was in serious trouble.
I was back at work the week before Christmas. This was much too big a leap! I’d been frustrated by the speed of my recovery. I recovered from surgery quickly but the recovery from Cushing’s was slower. I’d expected everything to just go back to normal after the surgery and hadn’t anticipated the gradual decline in symptoms. I ended up getting very sick with a virus and really thought my family would have me admitted to hospital. There are two days that all I can remember is lying on the couch sweating. I lost 8 lbs in a day! I’d pushed myself too far.
And yet I still didn’t learn! I’m not someone that likes to be inactive. I also just wanted life to go back to normal. I returned to work again in January on half days and gradually built myself up to working full days.
Slowly but surely, I was taking less and less medication. I was able to stay awake a little bit longer every day. My mind was coming back to me. I was losing the bright red colour from my face. One day I woke up, looked in the mirror and suddenly had cheek bones again. I looked like my old self. By January I’d gone from a dress size 14 to a 6 with hardly any weight loss. It was just like someone had stuck a pin in me and I was deflating back down to a regular size. My hair was growing back but still had horrible wispy ends so I chopped all the sickness out of my hair. By April I wasn’t taking any steroids. I’d again pushed myself to the limit and instead of tapering slowly had gone down in major jumps. Weeks where I was doing a major jump involved lots and lots of tears. And then some more tears.
By June I noticed that I hadn’t had a day where my joints were sore since I couldn’t remember when.
Things like falling down the stairs because my legs couldn’t support me won’t be forgotten. Standing at the top of the stairs and knowing I can’t get down. My hands turning into claws. Or accidentally going into steroid withdrawals a few days post surgery (I was the crazy patient running up and down the hospital corridor screaming and crying in the middle of the night). These won’t be forgotten but they will fade in importance. The things that won’t are my little brother coaching me through all the tubes I woke up with after surgery, my friends bringing me bottles of diet coke and fancy hummus in hospital, the friend who came to see me every day in hospital, the one who picked me up and took me home, my mam who told me I was brave and that I’d gone through a lot, and the boy who listened to me cry when the pain still hadn’t gone away.
As of today I have been declared fully recovered bar one more hurdle. My repeat bone density scan. In two weeks’ time I have to repeat this to see if I still have osteoporosis. Whatever about having a tumour at 23, being diagnosed with osteoporosis at 24 just isn’t on! I’ve been drinking plenty of milk and tons of cheese though so fingers crossed.
A guest on the message boards asks: Is it possible to have cushing disease without high blood pressure? they are experiencing a lot of the other symptoms kidney stones, headache, fatigue, joint pain, stretch marks on back, abdomen, arms, breasts, hair loss, obesity in stomach area, potbelly, thin legs, memory issues, thinning of skin, irregular […]
What specific type of Cushing’s do I have? What stage? What does that mean? What are all my treatment options? Are there any clinical research studies underway for my Cushing’s? What are the studies investigating? On what research are these based? What “phase” studies are they and what do you hope to accomplish?…
Two days of education, support, and networking at this patient conference held at Barrow Neurological Institute in Phoenix, AZ, special thanks for the invitation from Medical Director and Endocrinologist Dr. Kevin Yuen!
What is the difference between Cushing’s Syndrome and Cushing’s Disease? Doctor’s Response: Any condition that causes the adrenal gland to produce excessive cortisol results in the disorder Cushing’s syndrome. Cushing syndrome is characterized by facial and torso obesity, high blood pressure, stretch marks on the belly, weakness, osteoporosis, and facial hair growth in females.
Cushing’s disease (CD), caused by an adrenocorticotropic hormone-secreting pituitary adenoma, is challenging to diagnose, especially in obese patients post-bariatric surgery. This report discusses a misdiagnosed case of CD in a 42-year-old obese male with hypertension. CD was suspected only after surgery, confirmed by magnetic resonance imaging (MRI) showing a pituitary macroadenoma.
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