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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/

Amber D, Pituitary Bio

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Adapted from https://www.stuff.co.nz/business/money/130677664/woman-loses-home-after-insurer-turns-down-brain-tumour-claim

 

 

When Amber Denney​ bought life and critical condition insurance from Bank of New Zealand, she thought it would help pay her mortgage, if she ever fell so seriously ill she could not work.

But when she contracted a debilitating and life-threatening brain tumour, BNZ’s insurance proved worthless.

Denney was diagnosed with a pituitary tumour in 2020​, and underwent brain surgery, several years after symptoms emerged, including rapid weight gain, muscle loss, brain fog, fatigue, depression and severe headaches.

But despite her neurosurgeon saying Denney fitted the criteria to succeed in her $52,000​ claim, BNZ Life Insurance declined the claim, after taking six months to come to a decision.

As a result of her illness, Denney was unable to work, and lost the home she bought when she was 21. She wonders to this day, if the insurance money would have allowed her to save it.

At a time Denney, now aged 26​ and renting in Hamilton, was losing her home, banks were working to make sure people did not lose their homes in the economic disruption of the Covid-19 pandemic.

BNZ refused to comment on whether the insurance it sold had failed Denney in her time of need. But Partners Life, which bought BNZ Life Insurance after her claim was decided has promised to take a fresh look at her case.

Denney has yet to concede defeat to her insurer, and may take a claim to the Banking Ombudsman claiming service failure by BNZ, and the Insurance and Financial Services Ombudsman over the decision by BNZ Life to decline her claim.

But she says she is speaking out to warn others that their insurance may be much more limited than they think, and fail them at their time of direst need.

Her cluster of debilitating symptoms resulting from the pituitary tumour is called Cushing’s Disease.

“I’m not the only Cushing’s person who has had this trouble with the insurance companies,” she says.

“The endocrinologist told me about all the other people who have been struggling,” says Denney, who before her illness was fit enough to climb mountains and shear sheep.

There were several critical failures of the critical condition insurance BNZ sold her, according to Denney and insurance lawyer Tim Gunn, who is helping Denney pro bono.

While the BNZ Life policy did cover pituitary tumours, there were two caveats.

First, it had to produce neurological damage, and functional impairment, which a specialist considered to be permanent.

Second, it had to be removed by a craniotomy, surgery that requires cutting through the skull.

Gunn says the requirement for a craniotomy is unreasonable, unfair and outdated.

In recent decades the primary surgical option for pituitary tumours was not a craniotomy, but keyhole surgery, which was used to save Denney’s life.

“The method of surgery to remove the tumour was the most current and accepted method,” Gunn said, and was now used in 95% of pituitary tumour surgeries.

Craniotomy surgery carries a higher risk and was not as effective, he says, and requiring it was unreasonable.

But Denney and Gunn say the policy was also fatally flawed because it could not do what she was sold the policy for in the case of a policyholder contracting a pituitary tumour.

It takes so much time for medical specialists to conclude that damage is permanent after an operation, that paying a claim in time to help save a policyholder’s home is not possible, Denney maintains.

One communication from BNZ Life dated September 2021, told Denney that despite her being diagnosed in July 2020​, operated on in September 2020​ during the level 4 lockdown, proof of permanency had still not been established.

Denney says she has been left with permanent memory loss, severe headaches, and other symptoms of Cushing’s Disease, and can’t understand why BNZ Life is not paying.

“It’s blatantly obvious. I’m struggling. I just don’t get it. It’s extremely unfair,” she says.

“BNZ has failed in their responsibility to ensure that Ms Denney was adequately protected,” Gunn says.

Denney says one horrified BNZ worker told her not to let the bank win.

“She advised me, it was her exact words, ‘If you have the energy to fight, fight them until the end’,” she says.

BNZ would not answer the allegations, saying only that all BNZ Life’s records had moved to Partners Life, though Denney remains a BNZ customer.

BNZ had sold the business to Partners Life, which has in turn been sold to Japanese insurer Dai-ichi Life.

Partners Life has promised to review the decision taken by BNZ Life to turn Denney’s claim down.

It said BNZ Life’s conclusion was that while the condition Denney suffered was most certainly traumatic, it was not covered under the definitions in the policy wordings.

Critical condition (often called critical illness) insurance was not designed to cover every possible health emergency, it said, but did not comment on the specific allegations Denney and Gunn have made, as it had only been alerted to them by Stuff.

It said it would contact Denney about the review of BNZ Life’s decision to decline her claim.

Partners Life says its claims philosophy is that, “if it’s grey, we pay”, and “where the medical information is unclear or conflicting, we will remove the uncertainty and simply pay your claim”.

Denney said her surgery saved her life, and her weight has dropped by 35kg​.

Doctors told her in 2020 that without the surgery she would have two years to live.

“I’ve passed that two years now, so every day’s given to me now,” she says.

At its worst, Denney’s symptoms were so bad, she was unable to work for nearly two years, though her life is on the up, and she is once again dreaming about buying a home.

She has landed a job at a supportive employer in Hamilton.

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In Memory of Kate Myers ~ June 23, 2014

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kate-fbkate

Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

Dana, Undiagnosed Bio

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Well, I’m 29 now and still undiagnosed. If Cushing’s is what’s wrong with me, I have had it for quite a long time. I gained a lot of weight (60 lbs) the last 2 years of high school (17-18 years old). I lost 30 lbs at age 19 (I just didn’t eat much) and have since gained 70 lbs.

But, I really wonder if this all began when I was a child. However, I was tall, and Cushing’s is supposed stunt growth, so who knows. I was always the tallest kid (male or female) until about seventh grade, and ended up being 5’11”. When I started school I suddenly went from a fairly normal weight to having a giant, hanging belly with stretch marks. I remember by first grade (age 7) wondering where all this fat had come from. My parents blamed it on sitting in school all day, since I was an active child and ran around all day when I was younger, and we ate healthy meals. So, my parents put me in every sport possible: softball starting at age 6, basketball (2 teams) at age 9, soccer at about age 9, volleyball at age 12, golf at age 15. I would go on numerous diets, with the Scarsdale diet working well (high protein, very low calorie, but hard on my gallbladder), and I lost a lot with a 1500 calorie/day low-fat diet. In middle and high school, I was doing 2 hour sports practices (mostly cardio the entire time) every day, year round. I think my face has looked round since elementary school, and pictures from 2007 show a buffalo hump. I sweat more than everyone else (my Dad’s theory was that I developed more sweat glands because of all the sports).

My periods have always been irregular (starting at age 10), sometimes with 4-5 months in between, until I started birth control pills at 19 to regulate them. We figured it was because of stress or all the sports. I had fairly bad acne from about age 12-19, and since then usually still have a few zits, although now I have more body acne. My stretch marks are everywhere, along with spider veins, but the stretch marks are only pink and about 0.5-1 cm wide at their worst. Freshman year of college, I developed a cyst at the base of my tailbone the got horribly infected (I could barely walk) and it had to be surgically removed, leaving a big hole where my tissue had to grow to fill it (my surgeon told me it would take 6 weeks to heal and couldn’t understand why it took 6 months instead). I had many ear infections as a child (pink amoxicillin is yummy), and since age 20 get several sinus, ear or throat infections each year, requiring antibiotics.

Starting in middle school, I would get horrible acid reflux that would keep me up all night (in the days before all the drugs for it, so I really can’t stand Tums anymore). It went away for awhile, and then I started getting bad abdominal pain Sophomore year of college, like cramps unrelated to periods, and skipped a lot of classes because of pain and fatigue. At that point, I thought I either had mono or was severely depressed, because I was just so tired and wanted to sleep all the time. The pain went away after 6 months, but then I developed severe stabbing pain (age 24) in first my lower and then middle and upper abdomen, first diagnosed as IBS and finally after 3 years as a collapsed gallbladder. By the time it was removed, I had recurrent mono, a sinus/throat infection that required 3 rounds of antibiotics, was very fatigued and could barely walk. I still have some abdominal pain, maybe from post-gallbladder surgery syndrome or acid reflux.

I have always gotten stiff, sore muscles, which I attributed to the sports, but now I get even more stiff muscles. I also started getting joint pain in the last few years, it continues to get worse. Even in third grade the teacher noticed my extremely tense shoulders. In the last several years I have also started to become impatient, irritable, moody, and have anxiety and a quick temper (I was extremely even-tempered and calm until after college). I am also getting fuzzier mentally, with a bad memory, lack of concentration, and easily distracted, and often I just feel like I am loosing my ability to think and becoming stupid. Sorry to be so long, there are many more symptoms but you get the idea.

 

From the message boards.

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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/

Sushmita Sen’s battle with Addison’s disease

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It was in 2014 when the actress left her fans shocked when she revealed that she was diagnosed with Addison’s disease. Talking about her condition, Sushmita said that the years she battled Addison’s disease “were pretty traumatising”. After fighting for 4 long years with the chronic condition, the actress healed and emerged stronger by exercising daily.

Addison’s disease is a disorder in which the adrenal glands don’t produce enough hormones. The gland present just above the kidneys starts producing too little cortisol and too little aldosterone. The condition can affect people of all age groups and sexes. The symptoms of the disease develop slowly but can be life-threatening if not treated on time. Extreme fatigue, weight loss, darkening skin, low blood pressure, salt craving are some of the signs of Addison’s disease. Treatment of the condition involves taking hormones to make up for the missing ones. The disease is caused when the adrenal glands are damaged, affecting the production of cortisol and aldosterone hormones.

Post recovery, the 46-year-old actress shared that meditating with nunchaku helped to fight the disease and helped in the healing process. “I healed in time, my adrenal glands woke up, no more steroids, no withdrawals and no auto-immune condition as of 2019,” she had shared. Even after that, Sushmita kept on with her extensive workout to stay fit and healthy. From time to time the actress shares a glimpse of her workout routine which includes yoga, meditation, callisthenics and bodyweight workout.

Adapted from https://timesofindia.indiatimes.com/life-style/health-fitness/health-news/sushmita-sens-battle-with-addisons-disease-and-the-workout-that-helped-her-emerge-stronger/photostory/87988141.cms

In Memory of Kalyn Allen, June 28, 2017

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We lost another Cushie sister today. Kalyn Allen’s husband posted this on Facebook:

This afternoon my beautiful wife and mother of my children completed her path in this life so that she may be reborn again into the next. She was surrounded by her children, family, and friends when she transitioned very peacefully. She now is free to be reborn again and continue the cycle of life to hope one day to reach nirvana. While we will morn her passing our attachments to this world of suffering and rebirth are what bring us back over and over. So let us not mourn a loss today but say good luck in the next. For we are full of desire for this world and we will surely meet again.

Yesterday he posted:

Kalyn is in critical condition in the CV-ICU at St. John’s in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can’t move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go. Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and I are having to make daily trips into tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support.

Kalyn’s story from https://www.youcaring.com/kalynallen-786017:

My name is Kalyn I am 41 years old. I am married and have three children. In Nov ‘16 I was diagnosed with Cushing’s Disease.

My journey began in June ‘16 when I attended a health screening provided by my employer. It was discovered that my blood pressure was dangerously high and I was sent to my physician. I was prescribed blood pressure medicine. A couple of weeks later I joined a wellness program to turn around my exercise and eating habits in hopes that it would help me lose weight and lower my blood pressure.

Over the next few months I was seen by my physician numerous times. I was beginning to have strange symptoms. I was easily bruising. Dark purple stretch marks started to appear out of nowhere. I had hair loss on my head but excessive hair growth on my face. My ankles and hands swelled along with a loss of muscle mass in my legs, horrible acne and a shortness of breath. While my physician tried several different medications they were not alleviating my symptoms. At this point I was having trouble getting in and out of my car and the shower. I also started seeing a therapist because the excess hormones in my system were causing uncontrollable mood swings. During this time I was exercising and following the wellness program losing 52 pounds from June until the end of Oct. But there were still issues controlling my blood pressure. It was at this point that my physician referred me to an endocrinologist.

The endocrinologist ordered a multitude of tests to measure my cortisol levels as Cushing’s disease was suspected. To be thorough an MRI was ordered of my brain to see if they could find a tumor on my pituitary gland. This was done at the end of Dec. It was discovered that I had a 3.7 millimeter tumor on my pituitary gland. From there I was referred to a brain surgeon.

My condition continues to deteriorate as I am experiencing extreme fatigue, intense muscle and joint pain while having excruciating headaches almost everyday. Among other agonizing symptoms that complicate the situation.

I now have surgery scheduled for the first week of May ’17 to remove the tumor. I will be in the hospital for 3-7 days and my recovery time will be from 6-8 weeks. I will have to travel hours away to have the surgery and remain there during my stay in the hospital. My parents will be by my side during surgery. But unfortunately my children and husband will not be able to accompany me due to the expense and not being able to leave our farm animals unattended for that long.

During this time away from work I will be on short term disability. My employers short term disability plan only covers 80% of my wages during this time. This will result in my family undergoing a financial hardship as my husband and parents undertake the task of my care during recovery and attempting to cover the missing 20% plus extra expenses such as medicines and doctors appointments.

I am asking for your compassion and support to help my family and I through these trying times. This journey has been a roller coaster of emotions and physical pain for myself and my family. My Mother has been such a rock for me listening to me complain and cry. My Father has also been there for me always willing to talk and making me smile and laugh even if I didn’t feel like it. My Husband has taken over so much responsibility that was mine. And my children are always willing to help me out with the little things. It is frustrating going from being very active and able to do so many things I love to now only being able to go into the office to work several days a week and the rest of the week working from home doing little else because of the pain and the fatigue. I just want to get back to normal.

Update 5/3/17:

Kalyn’s surgery was very successful and the doctors said they where able to see and remove the tumor only taking 40% of her pituitary gland. She is in recovery now and will be in the hospital for the remainder of the week. She would like to thank everyone for their continuing support over the next few months while she recovers.

Update 5/4/17:

We got some bad news today. After removing the tumor along with 40% of Kalyn’s pituitary gland, her cortisol levels are still high, meaning there is still something else causing her cushings. So we are back to square one. Now we wait to see what the surgeons and the endocrinologists came up with. She is still in a lot of pain and exhausted because it is hard to sleep with all the packing in her sinuses. With this news she will probably have to stay in the hospital longer and may have to have another surgery to remove the rest of her pituitary if they can’t find anything else. The Dr’s may order a PET/CT scan to look other places for tumors but that may take up to 48 hours to get access to the machine.

Update 5/8/17:

Kalyn went in for a PET/CT scan this morning at 6:45 to look for any other tumors or cancer that could be causing the Cushing’s disease. Baring the scan finding anything, later this week the surgical team will go back in and remove the remainder of her pituitary gland. This will result in her being required to be on several medications the rest of her life. While removing the pituitary should solve the Cushing’s it opens the door to increased risk of complications and additional heath problems in the future. She will have to stay in the hospital much longer then anticipated and may have a longer recovery time. The children and husband where able go to OKC on Saturday to visited with her in ICU. This was the first time we have been able to see here in a week besides video chats. They spent several hours together and everyone enjoyed the short time with mom. Thank you Bob Eden for driving the family to OKC and for the pizza lunch everyone enjoyed. Kalyn remains optimistic and in high spirits considering the circumstances. She enjoys and appreciates all the kind words and support she has received though this difficult ordeal. The results of the PET/CT scan should come back quickly and we hope to not have to deliver any more bad news. This ordeal has been very stressful for her and the family and we are hoping for a favorable resolution soon. Kalyn and the family thank you for your continuing support and donations.

Update 6/26/17:

Kalyn is in critical condition in the CV-ICU at (hospital ommited) in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can’t move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go.Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and husband are having to make daily trips into Tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support.

Joanna, Undiagnosed Bio

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Im a 41 year old female currently in the very beginning stages of testing. Im pending results of a 24 hour urine cortisol and will be completing the 1 mg dexamethasone suppression test shortly.

My symptoms are buffalo hump, thin arms and thinner legs, fatigue, extreme leg aching, skin feels loke its sunburned, high triglycerides, high cholesterol, weight gain, hair growth on face, the list goes on and on and on.

I was tested for adrenal issues in 2017 and administered the 1 hour ACTH test which came back normal. At that time i was diagnosed with hypothyroid, and elevated testosterone. I recently changed health insurance and had to find a new PCP. At my initial appt i mentioned my buffalo hump was getting worse.

I had a ultrasound done where the “Findings suspicious for hypertrophy in the neck fat pad which could represent fat redistribution syndrome”. These findings were what kicked off the Cushings testing. Ive gained  40lbs in the last 4 months with no change to my diet.

Im just praying that i can find some answers because Im miserable and want to live a very full and productive life.

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Angelique L (Angelique), Undiagnosed Bio

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I am 54 year old woman with no kids. I had a hysterectomy at age 44 and went through the change. I was slightly overweight at the time and went on a healthy weight loss programme over 5 years and got down to my goal weight. Life looking good.


Fast forward to 2019 and I got a very painful and swollen pituitary gland infection on the right side of my face. Admitted to hospital and administered 60mg Prednisone intravenously. Then prednisone for 1 week tablet form after I left the hospital. No actual tapering off, just a prescription of 20mg daily.


This when the problems started, after 2 weeks my moon face appeared, bloated and fatigued I went to my GP. He said Cushings probably.


2 years later I am 60lbs heavier, distinct lump at the base of my neck, fat on my upper arms and between my thighs, belly, chronic fatigue. The weight is extremely stubborn. My sex life is dead, my relationships are foundering and my depression and anxiety is managed by seclusion and sleeping.


I am desperate to find a solution, but fearful my search will tell me I am damaged and have a short life expectancy.
So I came here perhaps to find support. Too many of the stories, sound just like me.


Take care all. Thanks for reading.
Angelique

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P. Hyde, Undiagnosed Bio

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48 years old. Male. Had prolactinoma pituitary tumor in 2000, it enfarked. 7x8mm. On testosterone replacement since as it destroyed my bodiea ability to produce testosorone.

Started what appeared to be a battle with Cushing’s symptoms fforin 2012. Shown all symptoms of episodic Cushings. Finally ain 2018 a new 4mm mass appeared on my pituitary midline and is growing.

However I have only been able to get just one positive saliva night time cortesol test so no one will look at Cushing’s. I am taking 1.5 mg of Klonkpan daily and think it may suppress the cortesone and squew the labs especially the suppression test. At this point I can feel the cortisol Jump in the evening. The only thing that stops the terrible sick feeling is my scheduled dose of Klonipan.

I started a seveir crash in March or 2020. Hematacrits started rising uncontrolably and made it to 62 percent by August of 2020. Blood pressure is not controllable when episodic. By August made it to 190 over 120. Had a cardiac Event in September 2020 from all the symptoms. And had Gained 26lbs in 4 months. Fatigue and foggy thinking so bad I can hardly function when episodic. Episodic now most of the time. Can hardly work and body is done by 3 PM every day.

Each time I have a dextramazone suppression test I get a 3 to 4 day respit like the ACTH is reset and I feel normal and symptom free. My blood pressure returns to 130/80 and my life seams to be ready to go back together. This all from 1 MG of Dextramathasone one evening then I get 3 or 4 days if life back. One half a pill. No one can tell me if the Klonipan will produce false negatives and have not asked me to adjust.

My sleep cycle is from 11 PM to wake at 4 AM sick as a dog most days. The Serum cortisol levels they will not take until 8.00 A M. I am always feeling better by 8 A M. They will not adjust the time they take the suppressed serum sample and my result is always .8. They say if not over 5.0 they won’t consider surgery or treatment I’d any kind. My ejection fraction rate from my heart is now at 30%.(should be at 75% for a regular person my age) two more points down and I qualify for a heart transplant.

This is crazy. No one can figure out what is causing any of this but every symptom points to cushing’s. ESPECIALLY the symptoms all becoming acute when the Tumor appeared on the MRI.  I have been tested for virtually every illness known to man. My endocrinologist still believes it could be episodal Cushing’s and is supporting the tests. But no treatment. I am dying. I will surely be dead within one more year as they won’t provide a heart transplant unless they know the cause of the reduced ejection rate. So they throw drugs as me over and over and all the beta blockers and channel blockers almost kill me because I go off episode and my BP drops to 90/40.

But Without 3 positive Cortisol tests they won’t consider Cushing’s as even a possibility. Have been to every specialist you can see. Had every part of my body scanned. I am dying. My boys have not had their father in years now. My business has been hobbled as I am the CEO. Hiding my illness from competitors and over zealous vendors is harder than anything. Now I am finally losing all my best people because the promises I will be back to my old selve again no longer seam real when I am just fighting to stay alive.

One doctor claims it’s all sleep apnea. The sleep studies show MILD sleep apnea.  And they only showed that after the most current wild events and weight gain. Help. Please help. People need me. I am not afraid to die. But people need me. I serve so many roles and what I do helps thousands of people . I can’t be done providing in this life. I want to be a real Dad again. I am a shell of a man and dying. All the doctors tell us “when you find out what is wrong with you comeback and tell us so we can shift our treatment.” They have all given up on me.

Please someone Help. . Klonipan question is the biggest one now. Money is no object. I will give up everything and anything to have these years with my family. Even just a month of being myself before I have to go. Mayo clinic won’t take me because I don’t have the positive Cortisol x3.

 

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