The popular website “How Stuff Work”s is doing a survey of all kinds of diseases and Cushing’s is one of them!
Share your information and help get the word out to the world in general.
(I’m MaryO on there and I shared about my pituitary surgery and its aftermath. I hope this info helps someone else like these boards and related websites have)
The idea is simple. Everyone shares their experiences with different treatments. StuffThatWorks automatically transforms these experiences into data about which treatments work best, and for whom
Final Diagnosis: ACTH-dependent Cushing’s syndrome • ectopic ACTH syndrome
Symptoms: Edema • general fatigue • recurrent mechanical fall
Medication: —
Clinical Procedure: —
Specialty: Critical Care Medicine • Endocrinology and Metabolic • Family Medicine • General and Internal Medicine • Nephrology • Oncology
Objective:
Unusual clinical course
Background:
Adrenocorticotropic hormone (ACTH)-dependent Cushing’s syndrome (CS) secondary to an ectopic source is an uncommon condition, accounting for 4–5% of all cases of CS. Refractory hypokalemia can be the presenting feature in patients with ectopic ACTH syndrome (EAS), and is seen in up to 80% of cases. EAS can be rapidly progressive and life-threatening without timely diagnosis and intervention.
Case Report:
We present a case of a 74-year-old White woman who first presented with hypokalemia, refractory to treatment with potassium supplementation and spironolactone. She progressively developed generalized weakness, recurrent falls, bleeding peptic ulcer disease, worsening congestive heart failure, and osteoporotic fracture. A laboratory workup showed hypokalemia, hypernatremia, and primary metabolic alkalosis with respiratory acidosis. Hormonal evaluation showed elevated ACTH, DHEA-S, 24-h urinary free cortisol, and unsuppressed cortisol following an 8 mg dexamethasone suppression test, suggestive of ACTH-dependent CS. CT chest, abdomen, and pelvis, and FDG/PET CT scan showed a 1.4 cm right lung nodule and bilateral adrenal enlargement, confirming the diagnosis of EAS, with a 1.4-cm lung nodule being the likely source of ectopic ACTH secretion. Due to the patient’s advanced age, comorbid conditions, and inability to attend to further evaluation and treatment, her family decided to pursue palliative and hospice care.
Conclusions:
This case illustrates that EAS is a challenging condition and requires a multidisciplinary approach in diagnosis and management, which can be very difficult in resource-limited areas. In addition, a delay in diagnosis and management often results in rapid deterioration of clinical status.
Diagnosis: Stage 2 small cell lung cancer causing high levels of Cortisol, low testosterone and thyroid
Hi, I’m a 46 year old male academic working on US politics qlat University in England. I had 18 months of hospital referrals before my GP realised I had Cushing’s and was diagnosed in March 2020.
I went through a series of investigations and the cause of it was a small cell tumour in my lung. I am currently undergoing chemo and start radiotherapy this week.
I’m a complex case apparently and my biggest problem at the moment is my back pain both acute spasms and muscle ache.
I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.
I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986. However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.
My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.
Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.
Update: May, 2007
It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.
For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.
Jayne Kerns holds her 5-year-old daughter, Catherine, and 2-month-old son, Brian, at their home in Spotsylvania. Kerns, who was diagnosed with Cushing’s disease two years ago, became pregnant despite her illness, which usually makes women infertile.
Baby boy is miracle to mother with Cushing’s disease
By MARCIA ARMSTRONG
The Free Lance-Star
DATE PUBLISHED: 3/9/2004
THERE WAS A moment in 1999 when Jayne Kerns just knew that something was wrong with her body.
The Spotsylvania County resident was tired and irritable. Her muscles hurt. Her hair was falling out.
The silvery stretch marks acquired while pregnant with her daughter Catherine turned into angry, purple streaks. Kerns wasn’t losing the pregnancy weight, either. In fact, the pounds were still piling on.
“I was walking every day, eating right, doing the ‘Best Odds’ diet,” said Kerns, 40. “But, it wasn’t helping. I just didn’t feel right.”
One doctor said Kerns’ complaints were not unusual for a postpartum body. When another told her to exercise more and eat less, she kept a diary of the fat, carbohydrate and caloric content of everything she ate and began walking a mile three times a day.
But, a year later, Kerns was even heavier and her health was getting worse.
The slightest bumps caused her skin to bruise. Hair began to grow on her face and arms. Her eyesight was plagued by double vision, tunnel vision and spots. She had trouble concentrating and was beset with short-term memory loss. Her blood pressure skyrocketed to stroke level. Her menses stopped.
The symptoms worsen
Doctors tested for lupus, diabetes and fibromyalgia, but the results were negative. One physician gave up on a diagnosis, telling Kerns he didn’t have time to listen to her roster of complaints. He referred her to a psychiatrist for a prescription for antidepressants. Another told her to see a nutritionist.
By then, Kerns’ muscles hurt so badly it was hard for her to hold Catherine or let her climb onto her lap. She couldn’t get down on the floor to play blocks with her daughter or push her on the swing set. Bedtime became a struggle.
“I’d go upstairs and she’d run downstairs, and there was no way I could grab her and carry her back up,” Kerns said.
Kerns’ appearance took on that of a much older woman, even though she was only in her mid-30s. She had a hump in her back. Her thinning hair was turning gray. People who didn’t know her thought she was Catherine’s grandmother.
Then, in May 2000, a physician’s assistant told Kerns her symptoms matched those of Cushing’s disease, a hormonal disorder caused by the overproduction of cortisol, the “fight or flight” hormone needed in times of stress.
The diagnosis was a long shot, as the disease is rare, affecting only 10 to 15 people out of 1 million each year, according to the National Institutes of Health.
But, tests revealed that Kerns’ cortisol levels were 25 times higher than normal.
The physician’s assistant was right. Kerns had Cushing’s.
A tumor on Kerns’ pituitary gland was causing her adrenal glands to produce the overabundance of cortisol, but the mass was so small doctors couldn’t find it.
Kerns had four options.
Doctors could remove her pituitary, taking the obscure tumor with it. Or, they could zap the gland with gamma-knife radiation. The third choice was to put Kerns on medication that would lessen cortisol production. And last, she could have her adrenal glands removed.
With any of the choices, she was unlikely to ever have another baby.
“Usually, people who have Cushing’s are infertile because the disease alters the normal endocrine milieu of the body and interferes with ovulation,” said Dr. Fay Redwine, a perinatologist with Richmond-based Central Virginia Perinatal Associates.
In fact, it is so rare for a woman with Cushing’s disease to get pregnant that Redwine said she expects to see only two or three such cases during her medical career.
Baby surprise
Kerns took the cortisol-suppressing medication until it began to destroy her liver. Then, she had her adrenal glands removed.
Immediately after the surgery, Kerns’ eyesight cleared. Her blood pressure dropped to normal levels. And, three months after the operation, something else changed, too.
Kerns became pregnant.
“That was a surprise, a big surprise,” she said. “I was happy to know that I was still fertile.”
The pregnancy lasted only 10 weeks before ending in miscarriage. But, 15 months later, Kerns was pregnant again.
“The first thing I felt was total elation, then total fear of losing the baby,” she said.
Her anxiety was warranted, Redwine said, because the fetus of a mother with Cushing’s is at much greater risk of intrauterine fetal death and pre-term birth.
But, it was during this pregnancy that Kerns began to feel almost normal again.
Her muscles quit aching. Her moods leveled out.
“My body somehow said, ‘We’re going to have this baby, so we have to be healthy,'” she said.
Kerns’ obstetrician, Dr. William Hamilton, increased the dosage of Kerns’ hydrocortisone pills to cover the stress pregnancy put on her body. Redwine monitored the baby’s growth and movements.
And, on Dec. 15, 2003, Brian Matthew Kerns was born, full-term and healthy.
“He is our miracle baby,” Kerns said.
What’s in the future
Cushing’s has taken a permanent toll on Kerns’ life.
The purple stretch marks will never go away. Weight will always be a problem.
Kerns must have a magnetic resonance imaging scan every six months as doctors keep looking for her pituitary tumor.
Kerns regrets that she was so sick when Catherine was an infant and toddler that she couldn’t devote herself to mothering. And, it’s hard for Kerns to keep from crying when Catherine, now 4, doesn’t recognize her in the pre-surgery pictures in the family photo albums.
Even so, life is still very, very good.
Kerns spends her days cuddling her son and playing with her daughter. She’s getting stronger. She feels much better.
She’s thankful that the only effect the disease had on her relationship with her husband, Robin, was to make it stronger.
“Some men can’t handle it,” Kerns said. “I’ve read stories online about women who are getting a diagnosis and a divorce. But, Robin stood by me through everything: the surgery, doctor’s appointments, all the questions.
“He has kissed my stretch marks and said ‘No matter what happens, you are still a beautiful person.'”
Heal and share
But, for all it’s taken from Kerns, Cushing’s has given her something back: the courage to speak out.
She recently contacted Gov. Mark Warner’s office to enlist his support of a national day for Cushing’s awareness.
And last September, she approached a woman in the grocery store who she thought looked like a mirror image of herself: the same moon face, the same upper-body obesity, the same hairy arms.
“Excuse me,” she said to the woman. “I have to tell you my story.”
“I was a little taken aback,” said Laura Zastrow, who lives in Locust Grove. “I’d never heard of Cushing’s.”
Zastrow, 34, told Kerns she’d been looking for a diagnosis for her weight gain, mood swings and stretch marks for four years.
Kerns referred Zastrow to an Internet Cushing’s support group that features a lengthy list of Cushing’s symptoms.
“I couldn’t believe it,” Zastrow said. “It was like me, all the symptoms, everything.”
Tests showed that Zastrow has a tumor on her pituitary. But, unlike Kerns’ tumor, doctors know exactly where it is. She will have it removed this spring.
Zastrow calls Kerns her guardian angel.
“If she hadn’t said anything,” Zastrow said, “I’d still be wondering what in the world is wrong with me.”
For more information about Cushing’s disease, visit the Web site cushings-help.com.
Jayne has seen several potential Cushies and spoken to them. Many have contacted their doctors and turned out to have Cushing’s Syndrome. She was also instrumental in setting up the first Cushing’s Awareness Day and continues to provide Cushing’s Awareness tables at local health fairs.
One of the patients Jayne urged to check out Cushing’s is Laura Zastrow. In the article about Laura, all the credit is given to Jayne.
Jayne answered questions in an online Voice Chat January 31, 2008 at 6:30 PM eastern. Archives are available.
Jayne and Robin also hosted a Special Cushing’s Awareness Day live chat April 8, 2008. Archives are available.
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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!
I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.
I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986.
However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.
My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.
Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.
Update: May, 2007
It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.
For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.
I was diagnosed with Cushings in 2005. I had surgery in 2006 which required my lower right lung to be removed. Mine was rare because my symptoms cycled.
After having surgery in April of 2006, I was doing very good. All my symptoms went away, I lost weight, worked out and had few bad days. However, 3 years ago, I started feeling fatiqued and sick a lot. Now, about 6 months ago, almost all my endocrine problems are back. I’m not showing any outward signs though..
I’m seeing my Endocrinologist again and being retested because now I am not doing good at all.
Diagnosed April 1997 with Cushings. They figured it was about 9 years in coming to a head. Started with the weight gain then disc problems (surgery), problems with my teeth breaking, acne, facial hair all the good stuff. Kept changing my hair color as something just wasn’t right but eventually realized it was my skin color darkening.
Took a trip to NYC in Feb of 1987 and swelled up and turned yellow during the trip. Went to the Dr when I got back and they tested me for Hepititas (sp?) and AIDS. Dr asked me if I had been using steroids. Changed Dr’s due to a change in my health insurance.
I talked to her for about 10 minutes about all my symptoms and she said “You have Cushings”. She sent me to an endo at Portland Diabetes Clinic. He got me in to see Dr Cook up at OHSU (Oregon Health Science Univ) and he scheduled the Petrus Sinus Sampling. From that they determined it was an Eptopic tumor.
They started doing Catscans and MRI’s until they found a small lung tumor. I finally had surgery in Sept 1987. The months leading up to that surgery were pretty scary. I ended up being pretty heavily medicated by the psychiatrist I started seeing. I think for me the mental and emotional symptoms were as bad or worse then the physical symptoms.
I’d like to say that’s where this ended but…alas. I started experiencing the same symptoms again and went to the Dr again in April of 2005 and was again diagnosed with Cushings. I am back with Dr Cook and am awaiting the results of the second Petrus Sinus Sampling.
Update October 26, 2006
2nd Sinus Sampling again was negative so again have an Eptopic tumor. After about 4 months gave up looking and decided on a BLA. Since my surgery in Sept 2005 until today Oct 2006 I have lost 60 pounds and my Cushing look is starting to fade. I take my medication without fail and have stayed with my new healthy lifestyle. Still looking for my eptopic tumor, it hasn’t decided to be found yet.
To all those not yet diagnosed or “cured”, Hang in there. If you aren’t happy with your doctor, find a different one. Also, don’t wait for someone else to tell you about your disease. Research!! Hope my next update will be for my tumor removal.
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