Evaluate whether age-related differences exist in clinical characteristics, diagnostic approach and management strategies in patients with Cushing’s syndrome included in the European Registry on Cushing’s Syndrome (ERCUSYN).
So, I had the Medical Clearance Revision and it was exactly like the Medical Clearance I did just over 30 days ago. It looks like surgery is a go. Thursday, March 9 at 12:15. There’s extra stuff for me to do to prepare, thanks to Cushing’s, the GH deficiency, the Adrenal Insufficiency, the one kidney, etc but I can do it!
We sadly learned that Liz died in March 2012 at the age of 45. She was an active member of the Cushing’s Help Message Boards. She had a photo gallery there. The photo below is from that gallery. Liz in 2002The image at left is from 2002. Liz wrote in her bio: Hello, I’m from Hampton, just outside London. Same old story – at least 6 years of various illnesses […]
Kidney Cancer Awareness is very important to me, because I learned I had it in 2006. I’m pretty sure I had it before 2006 but in that year I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages […]
You may be experiencing high cortisol levels if you’re holding onto weight in your belly or face or have noticed fat deposits in your shoulder or stretch marks on your stomach. Muscle weakness, blood sugar spikes, high blood pressure and hirsutism (unwanted hair growth) may be other red flags.
The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the U.S. sponsor for Rare Disease Day on Feb. 28. The annual awareness day spotlights approximately 7,000 rare diseases that affect more than 300 million people worldwide. More than 2 […]
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
This virtual chat, moderated by Shauna Nelson - MAGIC's Cushing's Division Consultant, is an opportunity for adult members to share stories, discuss treatments and successes that have worked for them.
We are so happy to report Winslow is much better. Though her blood cortisol levels are only reaching 2 despite continuous infusion, her electrolytes have stabilized.
Update 2/12/23 Winslow is still fighting. We are awaiting medical transport to take her to another hospital that can better care for her. The medullary sponge kidney is causing major complications and negatively impacting her body's ability to retain cortisol. She's battling a lot of pain and fighting to get back to us. Please pray and send good vi […]
So much in here is similar to what I went through during my years of being diagnosed with Cushing's. The depression, the weight, the dismissal of everything I knew to be true about what I was feeling.
Update- 2/6/23 As you all know, it is a fight to get cortisol coverage. This morning around 7:30, she went into crisis again. The nurse was alerted that she needed cortisol. The nurse was told by the doctor that Winslow could not have an additional dose and needed to wait until her scheduled 9:00 am dose. Her family members had to intercede to save her life. […]
We describe a patient presenting with a typical clinical picture of Cushing’s Syndrome (CS). Further testing was diagnostic of ectopic Adrenocorticotropic Hormone (ACTH) secretion, but its origin remained occult.
The founder of Adrenal Alternatives Foundation has suffered a severe adrenal crisis yesterday morning. She is alive but fighting for her life. We are unsure of the status of the Foundation at this time. This is the unfortunate reality of this disease, not even the strongest ones are exempt from the toll it takes. Keep fighting, adrenal warriors.
Endocrinologic evaluation revealed grossly elevated 24-hour urinary free cortisol and elevated serum cortisol levels consistent with severe Cushing’s syndrome, and she was started on high-dose ketoconazole.
A victim of brain injury can experience many consequences and complications as a result of brain damage. Unfortunately, the problems caused by a traumatic brain injury can extend even beyond what most people think of as the standard symptoms of a brain injury, like mood change and cognitive impairment. One issue which can occur is pituitary dysfunction. If the pituitary gland is damaged due to injury to the brain, the consequences can be dramatic as the pituitary gland works together with the hypothalamus to control every hormonal aspect of a person’s body.
Pituitary dysfunction as a result of a brain injury can be difficult to diagnose, as you may not immediately connect your symptoms to the head injury you experienced. If you did suffer injury to the pituitary gland, you need to know about it so you can get proper treatment. If someone else caused your brain injury to occur, you also want to know about your pituitary dysfunction so you can receive compensation for costs and losses associated with this serious health problem.
The pituitary is a small area of the center of your brain that is about the size of the uvula. The pituitary is surrounded and guarded by bone, but it does hang down. When it becomes damaged as a result of a brain injury, the damage normally occurs as a result of the fact the pituitary was affected by reduced by reduced blood flow. It can also be harmed directly from the trauma, and only a tiny amount of damage can cause profound consequences.
Many of the important hormones that your body needs are controlled by the pituitary working with the hypothalamus. If the pituitary is damaged, the result can include a deficiency of Human Growth Hormone (HGH). This deficiency can affect your heart and can impact bone development. Thyroid Stimulating Hormone (TSH) can also be affected, which could result in hypothyroidism. Sex hormones (gonodotropin); Adrenocorticotopic hormone; and many other hormones could be impacted as well, causing fertility problems; muscle loss; sexual dysfunction; kidney problems; fatigue; or even death.
Unfortunately, problems with the pituitary gland may not always be visible on MRIs or other imaging tests because the pituitary is so small. Endocrinologists who handle hormone therapy frequently are not familiar with brain injuries, and may not make the connection that your brain injury was the cause of the problem.
If you begin to experience hormonal issues following an accident, you should be certain to get an accurate diagnosis to determine if your brain injury played a role. If it did, those responsible for causing the accident could be responsible for compensating you for the harm you have experienced to your pituitary and to the body systems which malfunction as a result of your new hormonal issues.
Drawing on expertise from both the University of Birmingham and Queen Elizabeth Hospitals Birmingham, they applied their knowledge of Cushing’s syndrome to the new problem (sarcopenia).
Cushing’s is hormonal disorder caused by high levels of cortisol. Patients suffer from the syndrome see marked changes in their body composition.
The effects can be devastating for patients who can develop features such as muscle wasting and weakness, weight gain, thinning of the bones, diabetes, high blood pressure and heart disease.
Dr Hassan-Smith said: ‘Looking at this particular enzyme seemed like an intriguing way forward.
‘We knew how it works in relation to Cushing’s Syndrome, which is characterised by similar symptoms, and thought it would be worthwhile applying what we knew to the ageing population.’
Currently there are no treatments for sarcopenia, the team explained.
But pharmaceutical companies are developing and testing ways to block or switch off the enzyme, with a focus on treatments for conditions including diabetes.
The team is excited about taking the results of their study forward into future research, with one eye on adapting the inhibitors already in development to combat muscle ageing.
Dr Hassan Smith added: ‘The next stage is a “proof of concept” study to look at the effects of these inhibitive pharmaceuticals on muscle function, before opening it up into a clinical trial.
‘It’s an as yet unexplored area that could yield beneficial results for a problem that is becoming more prevalent as our lifespans increase.’
The study was published in the journal of Clinical Endocrinology and Metabolism.
Robin has made another excellent graphic of some of the symptoms of Cushing’s. There are far too many to be listed in any image, as shown by the list at http://www.cushings-help.com/toc.htm#symptoms
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
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