I’ve been gaining weight for about 3 1/2 yrs since having my thyroid removed due to a 25 yr old nodule that was calcified. My thyroid levels have always been good, before and after removal. There were A typical cells in the nodule, that’s why they advised removing the thyroid.
As I gain weight and have lumps of inflammation now over all of my body, all I have been told is to eat less and exercise more. Even though I have told my drs that I barely eat at all.
I have been through the cardiologist, rheumatologist, ent, gastroenterologist, pulmonologist, 2 gen practice drs and finally now an endocrinologist.
I still have the same symptoms; weight gain, headaches, abdominal distention, inflammation in ribs, feeling of breathlessness, buffalo hump, heart palpitations, acne, worsened vision, poor memory, insect bites take weeks to heal, teeth have moved leaving large gap, no armpit hair but facial hair instead, etc…
I have been waiting to see this endo for so long and she switches my levothyroxine (generic synthroid) to name brand synthroid plus gave me a paper to have many labs done. Day 4 of the synthroid, I woke up with hives. I took benadryl and it helped. Day 5 again hives but also feet swelled very bad. So I went back to the generic and those issues are gone.
Now i have to wait 2 months to have labs done and see endo again. I’m so upset and depressed. I feel like just doing the labs now and get a copy so that atleast I might have an answer. Waiting is frustrating. I keep telling these Dr’s that I’m not looking for something to be wrong with me, there is something wrong with me.
Whether it is adrenal/ pituitary or something else entirely, I don’t know. I feel like I am begging them to find out. All of my appointments with the specialists have been, come back in 2 months. WTH. This is very frustrating. I just want an answer. I will update if I ever get one. Best to all of you.
My name is Teri and I was dignosed with cushings about a year ago though I believe I have had it a long time.
I went to the emergency room for a kidney stone and the did a c-scan and found a large mass on my right adrenal gland and later found out there is another one on my left. I had my adrenal gland removed the first of November.
I am also about to have my thyroid removed due to several nodules and a large goiter! Cortisol levels are still high!!!
After 2.5 yrs of testing, I was diagnosed with Cushing’s (which was un-diagnosed for over 20 yrs). My Pituitary Tumor was removed on 10/20/11.
My surgeon has recommended Radiation/Gamma Knife treatment which will be discussed at my post srgery checkup 1/10/12. I also have noduals on both my adrenals.
Other symptoms: obesity, diabetes, high blood pressure, high cholesterol, muscle weakness, sleep apnea, fatigue and depression.
Susan submitted a second version of her bio.
My testing -> diagnosis -> surgery journey took 2.5 years. I have always had a weight problem. All my Doctors ever asked if I was interested in a liquid diet, liposuction, gastro bypass or go to Weight Watchers, and eat less. But when I reached 375 lbs I knew something had to be done. Things were way out of control. I could no longer handle this by myself, I needed HELP.
I had seen comercials on TV which talked about excess Cortisol leading to excess belly fat . So, I asked my Primary Care Doctor if she could test my Cortisol level. She just laughed and said I would have to go to an Endocrinologist (Endo). She did not even provide a referral. Through my insurance company I found an Endo. On 7/3/09, my first appointment with the Endo, she agreed to test me but felt I just had a fatty liver.
When the test results came back, they showing excess Cortisol. This started a series of saliva, blood test, 24 hr urine, MRI, and CAT Scan tests. Then I was referred to another Endo Dr Findling in WI (I live in IL) for another opinion and the IPSS test.. (Dr Findling said I looked like I had Cushings for over 10 yrs.) This was followed by Ostrascam and PET Scan. Armed with the diagnosis of Cushing’s Disease we were off to get a surgeon. The first doctor I seen in IL was a bust. Then I was referred to Dr Oldfield in VA, who performed my surgery on 10/20/11.
Now in recovery, I still get weak, tired and sleep a lot. I have been using a walker and cane to get around. Interesting to see that other Cushings also have problems with mobility, aches and pains. I hope this gets better. I have follow-up appointment 12/21/11 and 1/11/12 with the Endo and surgeon. I am off my High Blood Pressure and 2 of the 3 Diabetes meds. I have lost 30 lbs in the 7 wks since surgery. I can;t wait, 1 more wk before I can start swimming again.
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
I am a 34 year old woman, not yet diagnosed, but suspect Cushing’s.
When I came across this website, it was like other people writing my life story.
I was diagnosed with hypothyroidism 15 years ago, with depression about the same time. Once on thyroxine, I improved.
About 8 years ago, I started gaining weight, especially around the stomach. Then as time passed, other symptoms appeared. The depression was coming back worse than ever, despite increased doses of anti-depressants. I suffered with extreme fatigue, joint and muscle pain, shortness of breath and rapid heart rate.
I had tests for Rheumatoid Arthritis, Lupus, Fibromyalgia, Latex sensitivity, ECG and echocardigram, stress echocardiogram, chest X-ray, lots of blood tests. The only thing abnormal was low iron. I tried iron supplements, which do not agree with my stomach, so had to abandon.
Since then, I have pretty much struggled with further symptoms, the latest being the red stretch marks, the buffalo hump, fat on my shoulders (makes it hard to carry shoulder bags – they just slip off!), red, hot, puffy face, excess sweating, even in cooler weather, night sweats, pins and needles in arms, cramps in legs, high blood pressure, bruise easily, sores slow to heal – and that’s just the physical symptoms.
I am so depressed and low on self-confidence that hardly go out anymore, don’t have many friends, and had to stop working as nurse, which is the job I love.
I finally got my local doctor to send me to an endocrinologist in March this year. She did an ultrasound of my thyroid (showed a tiny nodule) and ordered a 1mg dex supression test. When the dex test came back negative and I went back to see her, I just cried my eyes out. She referred me to see a psychiatrist, and said she was done with me. The usual – you can’t have Cushing’s, its too rare. No urine tests, nothing.
I called the Pituitary Foundation in my state who are really helpful, and gave me loads of information. The lady mentioned cyclical Cushing’s. But they can’t tell you which doctor who can help you, it is different in Australia because you need to be referred by your local doctor, and they have no idea who can diagnose Cushing’s or what tests to order. So now I have really lost hope of getting a diagnosis, it like fighting everyone all the time, just to be taken seriously.
There are days when I have no fight left in me, and wonder how bad it is going to get, will I get diabetes, heart disease?
I recently completed a clinical trial at NIH because of an adrenal nodule. I also have hyperplasia of both adrenals.
Turns out I have primary hyperaldosteronism (which had previously been diagnosed) as well as elevated cortisol. I was told I don’t have Cushings but could develop it. Yet I do have unbelievably excessive sweating and have just begun to develop what I assume to be a buffalo hump–a lump at the top of my spine between my shoulders that is hard to the touch and painful.
My ability to handle stress is nearly nil; I sleep upward of twelve hours and more a day and yet get exhausted doing the littlest things. I’ve lost a lot of weight over the past two years because of nearly daily diarrhea–which I now believe may be caused by a deteriorating liver as I also have Heptatis C–and yet I have a fatty paunch which is beginning to show stretch marks I didn’t know I had.
My skin heals poorly and bruises very easily. I have splotchy skin, i..e, dark patches and totally pigment-less patches on my face. I was told my hypothalamus produces too much CRH which, in turn, triggers the ACTH to produce too much cortisol.
With two, possibly three, chronic conditions, I am beginning to worry about returning to work after my medical leave of absence ends this January.
I was on the pheochromocytoma support board until my diagnosis, and I know how helpful it was to have a group to turn to. I’m glad to see this one looks like a similarly supportive and informative group.
I have been seeing the endo for the last couple of weeks. Lots of blood tests, saliva test, 24 hour urine test. Thyroid scan, with nodules, thyroid biopsy benign, small goiter,and diagnosed with hashimoto.
Currently type 2 diabetic fairly controlled with Victoza, but very insulin resistance. First blood tests showed high cortisol, high ACTH, second series of blood tests showed normal to high cortisol and still high ACTH. Doctor said possible cushings. Have had extreme fatigue, beard on chin. Muscle and bone pain consistently. Wake up with headache and extreme fatigue.Bone scan diagnosed with osteopenia. Appt. with endo tomorrow to get results of 24 hr. urine test. Salavia test said was normal.
Have problems with sleep, sleep all day off and on, or have days when I cannot go to sleep at all. She said that I had the hump, muffin top, and belly fat, lean arms and legs. Eyes are puffy all the time now. Have problems losing weight even though I eat healthy all the time, and have excluded gluten, sugar, and going to go diary free. Eat lots of vegetables and fruit as well as a little protein. Have not had a mri or cat scan yet. Probably will be next on the list. Will post after my doctor’s appt. tomorrow and update my bio.
I have a lot of symptoms of cushings and she mentioned this with my second doctors visit after the first series of blood test, but wanted to do other tests to make sure.
Dr. Friedman understands your concerns and has partnered with Ulta Lab Tests to offer affordable, hassle-free lab testing—typically at about one-tenth the cost of going through insurance, with fast turnaround times.
To evaluate the diagnostic performance of the desmopressin (DDAVP) stimulation test in pediatric patients with Cushing’s disease (CD), and to compare its accuracy and safety profile to the ovine corticotropin-releasing hormone (oCRH) stimulation test.
Five children had Cushing’s disease (mean age, 14 years; two girls), including one macroadenoma. Those with Cushing’s disease presented with obesity (100%), short stature (60%) and headache (40%). Transsphenoidal resection resulted in biochemical cure; however, two patients experienced relapse 3 and 6 years after surgery, respectively, requiring radiotherapy. One patient also required bilateral adrenalectomy.
I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get […]
A man with Cushing’s disease — caused by an adrenocorticotrophic hormone (ACTH)-secreting pituitary adenoma — who later developed metastases in the central nervous system without Cushing’s recurrence, was successfully treated over eight years with radiation and chemotherapy, according to a case report.
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