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Bridget H, Ectopic Cushing’s

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For years, Bridget Houser experienced a number of symptoms, including mysterious weight gain and headaches, that gradually got worse over time. But while many doctors attributed the symptoms to stress, tests ultimately revealed Houser had a serious illness, Sandra Boodman reports for the Washington Post.

What was causing these symptoms?

Houser had never struggled with her weight before, but she noticed in 2018, months before her wedding, it was starting to increase. In response, she increased the intensity of her workouts and cut her food intake. But still, her weight continued to increase.

Houser wondered if her weight gain was linked to other problems she had experienced in the past. In 2016, Houser started experiencing daily pain in the back of her head, and after the headaches failed to improve after changing her diet and using nonprescription pain relievers, Houser spoke to her primary care doctor and a neurologist.

She noticed the headaches were worse when she wore contact lenses. “It was affecting my daily life and I talked myself into thinking the problem was my contacts,” she said. As a result, she got Lasik surgery, which helped improve her vision and cured her headaches for about a week until they returned.

Months later, Houser said she developed “really bad anxiety. It wasn’t just like I was anxious,” she said. “I couldn’t function. I’m Type A so I knew what anxiety is, but not to this degree.”

In 2018, she spoke to a psychiatrist and a therapist. The psychiatrist noted Houser’s upcoming wedding, saying the event can cause “huge anxiety.” Houser started taking an antidepressant as well as Ativan, an anti-anxiety drug.

While Houser’s weight was in the normal range, she still couldn’t figure out why it was continuing to increase, despite changing her diet and workout. She also noticed her hair, which was typically thick, had thinned so much that her hairdresser suggested she see a doctor.

Houser’s psychiatrist suggested the hair loss could be related to her antidepressant and switched her medication, but that didn’t change anything.

Following Houser’s wedding, she started feeling worse, developing severe insomnia, night sweats, and acne. In February 2019, a nurse practitioner at Houser’s primary care practice ordered thyroid tests, which came back normal, and referred Houser to an endocrinologist, who told Houser she was stressed.

Houser then saw a second endocrinologist who agreed with the first one. “She said, ‘I don’t think there’s anything wrong with you,'” Houser said. The second endocrinologist’s nurse suggested getting married may be causing stress. “She said, ‘I knew on my honeymoon I shouldn’t have gotten married,'” Houser remembered her saying. “‘Are you in a happy marriage?’ I couldn’t believe it.”

Finally, a diagnosis

In addition to testing her thyroid, Houser’s nurse practitioner suggested measuring her cortisol levels. Cortisol is a hormone produced by the body in response to stress and other things. Elevated cortisol levels can be indicative of Cushing’s syndrome, an uncommon hormonal disorder that typically results from a tumor, in which the body produces too much cortisol over a long period.

“She had thrown cortisol testing out there and I think it was always in the back of my mind,” Houser said.

There are various forms of Cushing’s syndrome — the tumors that cause them are typically benign but can sometimes be cancerous and are usually located in the pituitary or adrenal gland, Boodman reports. Sometimes those tumors can develop somewhere else in the body, like the lungs or pancreas. The disease affects around five times as many women as men, usually occurring between the ages of 30 and 50, and can be fatal if left untreated.

Houser asked the second endocrinologist to order cortisol tests. The doctor agreed to the tests but said she didn’t believe Houser had Cushing’s because she lacked the classic symptoms of the disease, which include major weight gain, purple stretch marks, and a fatty lump between the shoulders. Other symptoms of Cushing’s can include insomnia, headaches, acne, and anxiety, Boodman reports. However, Houser did have the “moon face” that is seen in people with Cushing’s.

A series of tests revealed elevated cortisol levels in Houser’s blood, urine, and saliva, with her urine having cortisol levels eight times higher than normal. The endocrinologist diagnosed Houser with Cushing’s and sent her to James Findling, an endocrinologist in Milwaukee who is internationally known for his treatment of Cushing’s.

Findling ordered a dotatate PET scan to find where Houser’s tumor was, finding it in her left lung. Ultimately, after much deliberation, Houser elected to undergo surgery to remove part of her left lung. A pathologist found the tumor was a rare, slow-growing neuroendocrine lung cancer known as bronchial carcinoid, which can cause Cushing’s.

“Fortunately, I think we got it early,” Findling said. “She’s had a sustained remission and a cure of her Cushing’s.”

Why did it take so long to diagnose?

Findling estimates he’s treated as many as 2,000 people with Cushing’s in his 40-year career, and noted that delayed diagnosis is common, because physical changes and other Cushing’s symptoms are gradual.

Findling said that, while doctors are taught that Cushing’s is a rare disease, it isn’t, noting a 2016 study that found 26 of 353 endocrinology patients had the disease.

Descriptions of the disease in textbooks, including the presence of purple stretch marks and a hump, are “almost a caricature,” Findling said. “It’s pretty well recognized that Cushing’s is more subtle than that … and can cause neuropsychiatric and neurocognitive problems.”

Findling also noted that Houser “didn’t look like the typical Cushing’s patient. She wasn’t obese and she didn’t have diabetes or hypertension. It was more subtle than many cases.” It’s possible Houser’s normal weight and lack of hypertension or diabetes could have misled doctors, Findling said.

“I think we’ve moved the needle a little bit, especially among endocrinologists,” he said, adding that “the threshold for screening has got to change. Once you tell a primary care doctor that it’s a rare disorder, it goes in one ear and out the other. They think they’ll never see it.” (Boodman, Washington Post, 10/7)

Adapted from https://www.advisory.com/daily-briefing/2023/10/20/cushings

Medical Mysteries: Were Wedding Jitters Making Her Sick?

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Bridget Houser felt despairing. In the months before her 2018 wedding, Houser, who had never struggled with her weight, noticed that it inexplicably began to creep up. In response she doubled the length of her runs to eight miles, took back-to-back high intensity workout classes and often consumed only water, coffee and fruit during the day before a spartan, mostly vegetable, dinner.

Yet no matter what Houser did, her weight stubbornly increased and her oval face grew round, a transformation that was glaringly obvious in comparison with her identical twin sister.

Houser wondered whether the five pounds she gained despite her herculean effort was a corollary of other problems. For the previous two years she had battled a string of maladies: first daily headaches, then crippling anxiety, followed by insomnia, hair loss and acne, something she’d never endured as a teenager.

“Stress was the universal explanation,” recalled Houser, a controller for a small business in Chicago. When doctors suggested that her upcoming marriage might be a cause of her problems, Houser considered, then rejected, the theory. It just didn’t jibe with her feelings.

In early 2019, about six months after her wedding, Houser insisted that her doctors perform several tests. They ultimately revealed that her symptoms weren’t the result of stress or marital misgivings but of a serious illness that had been smoldering for years.

After successful treatment followed by a long recovery Houser, now 34, feels far better than she did during those miserable years in her late 20s.

“I wish I’d been nicer to myself and not blamed myself for what was going on,” she said.

Getting through the wedding

In 2016 Houser began experiencing daily pain in the back of her head, a common spot for tension headaches. When the headaches failed to improve with dietary changes or nonprescription pain relievers, she consulted her primary care doctor, followed by a neurologist who told her she had migraines.

Houser, then 27, noticed that the headaches were worse when she wore contact lenses. “It was affecting my daily life and I talked myself into thinking the problem was my contacts,” she said. She decided Lasik surgery might help and in October 2017 underwent the procedure, which uses a laser to reshape the cornea, reducing or eliminating dependence on contacts or glasses.

Her vision improved and the pain disappeared — briefly. A week after eye surgery, her headaches returned. “I wasn’t overly concerned,” Houser said. “I know a lot of people have headaches.”

A few months later for no apparent reason Houser developed “really bad anxiety. It wasn’t just like I was anxious,” she recalled. “I couldn’t function. I’m Type A so I knew what anxiety is, but not to this degree.”

One weekday morning in early 2018 she felt so overwhelmed that she took a sick day, then called her twin, Molly, and their mother and told them she needed help immediately.

They managed to schedule a same-day appointment with a psychiatrist whom Houser began seeing regularly, along with a therapist. The psychiatrist zeroed in on her impending wedding and told Houser that the event can cause “huge anxiety.” She began taking an antidepressant along with Ativan, an anti-anxiety drug she used when things got really bad. She also ramped up her yoga practice, hoping it might calm her.

Houser vividly remembers riding the escalator to her office one morning “and in my head I kept saying, ‘I’m in trouble, I’m in trouble,’” although she didn’t know what was wrong.

Her changing appearance had become a source of great unhappiness. Although her weight remained in the normal range, Houser couldn’t figure out why she was gaining weight after drastically slashing her food intake and dramatically ramping up exercise. Her normally thick hair had thinned so noticeably that her hairdresser gently advised her to consult a doctor.

Houser’s psychiatrist thought her hair loss might be caused by her antidepressant and switched medications. That didn’t seem to help.

Houser was particularly bothered by her newly chubby face. “It was like a joke in my family,” she said, adding that she was teased about being overly sensitive.

Even her wedding day was colored by unhappiness about her appearance and the intense amorphous anxiety that seemed omnipresent.

“Rather than think about how excited I was,” Houser recalled, “it was ‘How can I get through this day?’”

Normal thyroid

After her wedding Houser felt worse. She developed severe insomnia, night sweats and acne. In February 2019 a nurse practitioner in her primary care practice ordered tests of her thyroid, which were normal. When Houser pressed for additional testing, she was referred to an endocrinologist. He told her she was stressed.

Dissatisfied, she saw a second endocrinologist who agreed with the first. “She said ‘I don’t think there’s anything wrong with you’” metabolically, Houser recalled. The second endocrinologist’s nurse even revisited the marriage question in the presence of Houser’s husband, Doug, who had accompanied her to the appointment. “She said ‘I knew on my honeymoon I shouldn’t have gotten married,’” Houser remembered her saying. “‘Are you in a happy marriage?’ I couldn’t believe it.”

Months earlier, the nurse practitioner who ordered the thyroid tests briefly mentioned measuring levels of cortisol, a hormone involved in the body’s response to stress and other functions. Elevated levels of cortisol can indicate Cushing’s syndrome, an uncommon hormonal disorder that occurs when the body produces too much of the hormone over a prolonged period.

“She had thrown cortisol testing out there and I think it was always in the back of my mind,” Houser said.

She asked the second endocrinologist to order cortisol tests. The doctor agreed, but not before telling Houser that she didn’t think she had Cushing’s because she lacked the classic symptoms: major weight gain, purple stretch marks and a fatty hump between the shoulders. Houser did have the “moon face” characteristic of Cushing’s that is also seen in people who take high doses of steroids for long periods to treat various illnesses — but Houser wasn’t taking steroids. Insomnia, headaches, acne and anxiety can be symptoms of Cushing’s.

There are several forms of Cushing’s syndrome, which typically results from a tumor — usually benign but sometimes cancerous — in the pituitary or adrenal gland that pumps out excess cortisol. Sometimes tumors develop elsewhere in the body such as the lungs or pancreas. Cushing’s affects roughly five times as many women as men and typically occurs between the ages of 30 and 50. If left untreated, it can be fatal.

trio of tests measuring cortisol levels in Houser’s blood, urine and saliva were significantly elevated; the amount in her urine was eight times higher than normal. The formerly skeptical Chicago endocrinologist told Houser she had Cushing’s and referred her to James Findling, a Milwaukee endocrinologist who is internationally recognized for his treatment of the disease.

“I was just so happy to have a diagnosis,” Houser recalled.

Revealing photos

Findling asked Houser to bring photographs taken several years earlier to her October 2018 appointment. It is a request he makes of patients as a way of spotting telltale physical manifestations. In Houser’s case, the facial change was particularly striking because she is an identical twin.

Findling noted that delayed diagnosis is typical, because physical changes and other symptoms tend to occur gradually and insidiously. Houser, he added, “didn’t look like the typical Cushing’s patient. She wasn’t obese and she didn’t have diabetes or hypertension. It was more subtle than many cases.”

The next step was determining the location of the tiny tumor. Tests found nothing in Houser’s pituitary or adrenal glands, and CT scans of her pelvis, chest and abdomen were clean. Findling ordered a dotatate PET scan, a highly sensitive CT scan that can find tumors that elude conventional imaging. The scan revealed a nodule in Houser’s left lung.

Houser sought a second opinion from a thoracic surgeon in Chicago. While Findling and a thoracic surgeon at Milwaukee’s Froedtert Hospital strongly recommended that she undergo surgery to remove the tumor, the Chicago doctor disagreed. He said he didn’t think the lung nodule was causing Cushing’s and recommended that Houser continue therapy and anti-anxiety medication.

“Do you know what it’s like to wake up from surgery and to not be better?” she remembers him asking her.

After deliberating with her husband and conferring with her Milwaukee doctors, Houser opted for surgery performed Oct. 30, which removed part of her left lung. A pathologist determined that the nodule was a rare, slow-growing neuroendocrine lung cancer known as a bronchial carcinoid, which can cause Cushing’s. The Stage 2 cancer had spread to a nearby lymph node.

“Fortunately I think we got it early,” Findling said. “She’s had a sustained remission and a cure of her Cushing’s.”

“The cancer didn’t rock my world,” said Houser, who had previously had a melanoma skin cancer removed. (Doctors have told her they don’t think the cancers are related.) “It was about not having Cushing’s anymore, which was more important.”

So why didn’t Houser’s doctors, among them endocrinologists, suspect Cushing’s?

Findling, who estimates he has treated as many as 2,000 people with the disease in his 40-year career, said that while doctors are taught that Cushing’s is rare, it’s not. He cites a 2016 study, which that found that 26 of 353 endocrinology patients were found to have the disease.

Textbook descriptions, which include the presence of purple stretch marks and a hump, are “almost a caricature,” Findling observed. “It’s pretty well recognized that Cushing’s is more subtle than that … and can cause neuropsychiatric and neurocognitive problems.”

Houser’s normal weight and the fact that she didn’t have high blood pressure or diabetes may have misled doctors.

“I think we’ve moved the needle a little bit, especially among endocrinologists,” he continued, adding that “the threshold for screening has got to change. Once you tell a primary care doctor that it’s a rare disorder, it goes in one ear and out the other. They think they’ll never see it.”

“When you make this diagnosis it can have fabulous outcomes,” he added, citing Houser’s case. “That’s why I’m still doing this at my age.”

Houser considers Findling to be her “literal lifesaver.” She spent the next year seeing him as she was slowly weaned off medications to normalize her hormone levels and recover her strength.

She is monitored for Cushing’s annually, remains cancer-free and, other than residual fatigue, feels well. In October 2021 she gave birth to a daughter. Her son was born eight weeks ago.

Houser regards the help provided by her family, particularly her husband whom she called “my biggest supporter,” as essential. That seems especially ironic because stress about their marriage had been blamed for symptoms that were actually caused by a cancer.

“He was a huge help in calling doctors and making the necessary appointments when I didn’t have the energy to fight anymore.” His unwavering love, she said, was “a testament to our strong marriage.”

From https://www.washingtonpost.com/wellness/2023/10/07/weight-anxiety-wedding-medical-mysteries/

Share Your Experiences with Cushing’s

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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

The questionnaire is here: https://stuff.health/s/u0A9djA5

Together, we’ll figure out which treatments work best for Cushing’s syndrome.

 

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Final Diagnosis: ACTH-dependent Cushing’s syndrome • ectopic ACTH syndrome

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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.

Read more at https://cushings.invisionzone.com/topic/56339-final-diagnosis-acth-dependent-cushing%E2%80%99s-syndrome-%E2%80%A2-ectopic-acth-syndrome/

Matt (MattHill), Ectopic Cushing’s

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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.

 

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Kim H, Ectopic Bio

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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.

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Jayne, In The Media

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From http://fredericksburg.com/News/FLS/2004/032004/03092004/1287556

Cushing’s didn’t rob woman of her fertility

Jayne Kerns

Photo by Scott Neville / The Free Lance-Star

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.

To reach MARCIA ARMSTRONG: 540/374-5000, ext. 5697 marciaa@freelancestar.com


JAYNE KERNS IS A MEMBER OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

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.

Listen to CushingsHelp on internet talk radio

 Subscribe to the CushingsHelp podcasts on iTunes

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We Have a New Bio Form!

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We have a new form to add your own bio!

Try it out below…

 

 

Thank you for submitting your bio – sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed.

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Steve, Ectopic Bio

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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!

 

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Kim H, Ectopic Bio

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golden-oldie

 

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.

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