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Shannon, Pituitary Bio

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A Golden Oldie

The pituitary gland

The pituitary gland

I’m 31 years old and feel like I’m 80.  I’ve been ill for so many different things over the past couple of years.

In the past year alone I’ve seen 5 doctors who couldn’t tell me the time. They made me feel like I was crazy. Even when I got double vision in my right eye and had to wear an eye patch for 3 months. No one could figure out why.  I still have vision disturbances but after two med packs of steriods the double vision went away.

I came across this web site last week and connected with so many things from other people. I printed off the sheets and took them to a new neurologist I was scheduled to see.  To my amazement he completly agreed with me! He said it was very likely I did have cushings and/or PCOS.

He scheduled an appointment for a Endocrinologist that specializes in this area and I am to see them Tuesday. I will update from then but I want to say I’m grateful for this site because it gave me some hope of an answer. I’ve been so miserable. I felt like my soul was trapped by my body and I didn’t even have the energy to make it better.

If you’re doctor makes you feel crazy, find another one. I know even with insurance it’s expensive but help is imperative.

Here’s a list of my symptoms:

-hump on my neck (have had for a while and thought it was from bad posture!)
-cyctic acne
-hair loss
-hair growth where it should not be
-loss of libido (I’m 31 this is so not right)
-fatigue
-muscle weakness
-back pain
-fat in the middle
-moon face
-horrible stretch marks
-no period for over a year (my last gyno told me I was just lucky)
-vision disturbances
-depression
-anxiety
-hypertension
-extremly low cholesterol
-hard to breathe, like there’s somthing heavy on my chest
-reoccurent kidney stones
-cyst on ovaries
-frequent bathroom visits
-terrible constipation
-swelling of legs and feet
-water rentention

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Jordy in the News…Again

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Jordy’s first bio is here: https://cushingsbios.com/2025/08/25/jordy-pituitary-bio/ and a news item is here: https://cushingsbios.com/2017/04/18/a-new-newspaper-article-on-jordy/

 

Life without fear: The people who can’t feel afraid

On a bright afternoon at Disneyland in 2012, Jordy Cernik strapped himself into a rollercoaster and waited for the familiar rush of adrenaline. The clanking ascent, the plunge into speed—this was the moment his stomach should drop, his heart should pound.

Instead, nothing.

No sweaty palms. No jolt of panic. Just silence in his body where fear used to live.

Jordy, a British man treated for Cushing’s syndrome by having his adrenal glands removed, had lost the ability to feel afraid. Later he would leap out of planes, zip-wire off Newcastle’s Tyne Bridge, and abseil down London’s Shard without so much as a quickened pulse. For him, what most people call terror is just another Tuesday.

And Jordy isn’t alone.

The woman who couldn’t be scared

Decades earlier in Iowa, doctors met a woman known as “SM.” She has Urbach–Wiethe disease, a rare genetic condition that destroyed her amygdala, the almond-shaped brain structure thought to govern fear.

Scientists tried everything: horror films, haunted houses, snakes, spiders. Instead of flinching, SM leaned in. “She had this almost overwhelming curiosity,” recalls Dr Justin Feinstein, a neuropsychologist who studied her. “She didn’t just fail to avoid danger—she sought it out.”

SM can laugh, cry and rage like anyone else. But fear—the instinct that keeps most of us alive—is absent.

Too little fear, too much risk

That absence has consequences. SM has been held at gunpoint and knifepoint more than once. She also stands so close to strangers that researchers measured her “comfort zone” at just over a foot—half the distance most people maintain.

“Her case shows that the amygdala isn’t only about fight-or-flight,” says psychologist Alexander Shackman. “It helps us navigate social life, too.”

When panic breaks through

But fear isn’t completely gone. In a striking experiment, Feinstein asked SM to inhale carbon dioxide—tricking her body into thinking it was suffocating. To her own astonishment, she panicked. It was the first full-blown terror she had felt in decades.

The experiment revealed a split in the brain’s wiring: external threats like predators or attackers rely on the amygdala, but internal threats, such as suffocation, are managed by the brainstem. With her amygdala destroyed, SM’s brainstem went unchecked, flooding her with fear.

Why we still need fear

For most animals, fear is survival. A mouse without an amygdala survives minutes in the wild before becoming lunch. Fear sharpens instincts, makes bodies sprint and hearts hammer. It’s biology’s built-in alarm system.

And yet SM has lived half a century without hers. Jordy, too, moves through the world unfazed by heights, speed, or risk. Their stories raise a tantalising question: in modern life, where predators no longer stalk us, do we sometimes suffer from too much fear rather than too little?

“Fear may once have saved us from lions and cliffs,” Feinstein says. “But today it often feeds stress and anxiety. Maybe the challenge now is learning when to silence it.”

On paper, Jordy Cernik has the kind of courage adrenaline junkies would envy. He has hurled himself from planes, dangled off skyscrapers, and zipped across dizzying bridges without so much as a flicker of fear.

But he insists it isn’t bravery. It’s emptiness.

“I don’t get that rush everyone talks about,” he admits. “It’s not courage, it’s just… nothing.”

That “nothing” can feel hollow. Fear, after all, doesn’t just protect us—it colours life with urgency, sharpens moments, makes victories sweeter. Without it, Jordy says, the world can sometimes feel oddly flat, as if one of life’s most vivid emotions has been erased.

For SM in Iowa, and Jordy in Newcastle, the absence of fear has opened unusual doors but also exposed real dangers. Their lives highlight the strange paradox of fear: too much of it cripples us, too little can leave us vulnerable, but just enough is what keeps us alive and makes life thrilling.

Perhaps that’s the ultimate reminder—that fear isn’t just something to overcome, but something that makes us human.

Source: BBC

 

Elana, Adrenal Bio

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A Golden Oldie

The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)

I was diagnosed with cushing syndrome in February as my cortisol levels were over 300.

A benign tumor was found on my right adrenal gland and it was removed May 3rd. I guess I thought everything would be fine after.  My left adrenal gland is still not producing any cortisol so I am on hydrocortisone.

I wake up everymorning with diarrhea and I am nauseas nearly all day.  I thought this would end after the surgery but now I am losing weight because I am not eating and my Endocrinologist says these symptoms are not due to the cushings and I should investigate further.

I don’t know where to turn?

 

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In Memory of Bettye Jean Douglas ~ September 28, 2016

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Born:  March 30, 1938

Passed:  September 28, 2016

Bettye Jean Douglas, age 78 of Smyrna, Tennessee, died Wednesday, September 28, 2016 at her home. She was a native of Hickman County, Tennessee, and was preceded in death by her first husband Carl Jenkins, and parents James McKinley and Susie Louise Lampley Wright, and siblings, Marie Wright, Pat Nichols, Nellie Tidwell, and Jessie Wright. Mrs. Douglas was a member of Rural Hill Church of Christ and had worked at Ingram Books.

She is survived by her husband, of 23 years, Wendell Douglas; children, Christopher Jenkins and wife Gina of Murfreesboro, Charmaine Herron and husband Steve of Mt. Juliet; step-children; Danna Douglas of Whites Creek, Wendy Morales of Whites Creek, and Kellye Douglas of Whites Creek; grandchildren, Isabella, Matt, Ben, Chip, Gino, Kendell, Jonathon, Michael; great- grandchildren, Steven, Bently, Austin, Gavin, Taylor, Gracie; brother, Billy Ray Wright of Kentucky.

Bettye’s funeral service was held at 10:00AM Saturday, October 1st, 2016 at Woodfin Chapel, Smyrna, Tennessee. Brother Gary Hale officiated. A graveside service followed at 2:00PM Saturday at Five Points Church of Christ Cemetery in Bon Aqua, Tennessee.

Born March 30, 1938, Bettye was tall and thin all of her life, and as beautiful on the inside as on the outside.  Bettye was a beautiful Christian woman.  She loved to laugh and loved a good joke.  She was all about her family and loved family gatherings.  She also loved to travel.  Her favorite vacation destination was Hawaii.

Bettye had two best friends, other than her beloved husband. Gina, her daughter-in-law, and Charmaine Herron, her daughter.  Her daughter Charmaine joked that they were a mix between Charlie’s Angels and The Three Stooges.  No matter what they were like, they had a lot of fun together.

More than anything or anyone, Bettye loved her Lord Jesus Christ.  Bettye passed away due to complications of Cushing’s disease.  Once she was finally diagnosed, a decision was made against surgery and Bettye was put on the cortisol-lowering medication Korlym.  Though she had initially gained weight from Cushing’s disease, as many patients do, she rapidly lost weight and was admitted into hospice care soon after.

Most cannot find the words to describe what Bettye went through during her last months on Earth.   To those left behind, the pain is almost unbearable, but those that loved Bettye find comfort in the knowledge that her health nightmare is over and that Jesus has her now and forevermore.

Credit to Woodfin Chapel and Charmaine Herron

Louise, Addison’s Disease

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Arianna Corrieri is still at primary school, but has a responsibility beyond her years.

The 10-year-old helps care for her mum Louise, who for the past five years has struggled with several illnesses, including the rare disorder Addison’s disease – which leave her fatigued and unwell.

That means Arianna has to help her mum take medication and look after her younger brothers, while also getting herself to school.

Now the Motherwell schoolgirl has been nominated for a BBC Make a Difference award, with the winners to be announced next Monday.

For Louise, the impact of her daughter’s help is clear every single day.

“Without Arianna, I wouldn’t be able to get through my day,” she says.

“I know it sounds ridiculous because she is only 10 years old but she genuinely does so much. It’s bonkers given her age but she is really responsible.

“The understanding she has of everything to do with the illness is unbelievable.”

Louise told BBC Scotland News she was previously a bright and bubbly mum until several years ago, when she found herself constantly tired and having to go to hospital regularly.

Doctors eventually diagnosed her with Addison’s disease – a rare disorder of the adrenal glands that means they do not produce enough of the hormones cortisol and aldosterone.

That has left Louise reliant on dozens of tablets to manage the condition and generate hormones artificially, although she recently was able to move onto a infusion pump to help her.

“Steroids keep me alive, it’s as simple as that,” she says.

However Louise was then diagnosed with another condition, gastroparesis.

This means Louise’s stomach digests food slower than it should, resulting in her having a restricted diet – to the extent even drinks like coffee can only be taken a certain way.

The overall result is a constant battle with chronic conditions, leaving Louise with no energy, regular sickness and sometimes low moods.

“The worst time of the day is first thing in the morning,” says Louise.

“I need to take fake hormones to get going, but I will always feel groggy when I wake up, until they take effect.

“Arianna makes sure her brothers are ready to go, checks they’re eating her breakfast and gets ready for school – it’s like she’s the mum at that point.”

Adrenal crisis

Louise’s husband works night shifts, which is why Arianna has to take charge sometimes.

A cheerful girl who speaks enthusiastically about her love for horse riding, Arianna says she tries to do “whatever I can” to help out her mum, from helping her with taking tablets to walking the family’s dog when Louise is too unwell to go out.

She also needs to be prepared for her mum’s condition worsening quickly.

Addison’s disease sufferers can sometimes be struck by what’s called an adrenal crisis – when levels of the hormone cortisol falls significantly in a person’s body.

If left untreated, it can be fatal.

“When you’ve got a long term illness, even when you need to go to hospital, sometimes you don’t want to” says Louise.

“You can be adamant you’re not that bad and don’t need to go anywhere. Arianna knows when to override me and tell me I need to go to hospital.”

Make A Difference awards

Louise explained how some of Arianna’s friends don’t understand why she can’t always go out, or why the schoolgirl is so keen to be around her mum.

She added being nominated for the Make a Difference award, in the Young Hero category, had been a huge boost for her daughter.

The awards seek to recognise those who go the extra mile to improve life across the country.

Arianna will learn at the end of the month whether she has won the honour, with a ceremony taking place in Glasgow and the winners announced on BBC Radio Scotland’s Mornings programme with Kaye Adams on 29 September.

The judge for the award is Sheli McCoy, the CrossFit athlete and weightlifter who is best known as Sabre in smash-hit Saturday night show Gladiators.

“Arianna does more than most adults do,” says Louise.

“She’s an inspiration to everybody and we’re all beyond proud of her.”

From https://www.bbc.com/news/articles/cvgjvy4jz59o

Syndi, Pituitary Bio

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A Golden Oldie

My partial bio…Hi everyone.  Dr. Ludlam in Seattle, WA is 99.999% certain I have Cushing’s Disease, probably Cyclic but I believe I used to be all the time.  I do have a tumor on my pituitary but before Dr. L can say 100% Cushing’s Disease, he needs one more test (?) before he sends me to the surgeon.  He’s concerned there may be another tumor elsewhere and needs to make certain.  Something my family does not accept.  They view all this “testing” as a money making scam.  But with my thought process being so poorly, I can’t explain myself.

One daughter went with me last visit with Dr. L and understands the severity of this but noone wants to believe her either.  Last time I saw my Dr. was 3 years ago.  Why?  My husband has always been the sole breadwinner, I was a full time mother of 4, working some here and there and even finished college.  Yea me.  BUT, for years now, I’ve not been able to think well, have difficulty getting around, have more bad days than good.  My life is just about exisitng.

But my husband has terminal Cancer, a Heart condition but working again these days but don’t how long that’ll be.  When he couldn’t work, we lived off and spent all our savings, sold belongings, etc and during all this, we lost our Medical Ins AND our Life Ins.  The Lifs Ins has been heart breaking!  All we’ve put into it for over 30 years.  Such a loss!!!

So, life for us has been really bad for years in soooo many ways.  Can we say stress?  No one can imagine all we’ve been through.  It’s honestly been more than all Soap Operas together.  So much, that I’ve cut myself off from all friends, due to not having anything positive to share.  How sad?!?  I’ve always been a huge social person, on the  go and having something constantly going on with tons of people around.  NOT anymore.  I call noone!  Ok, my Mama.  So, the Ins loss and money issues has been my reasoning for not seeing my Dr.

But my goal this year is to so what I can to take care of me!  I finally got Med Ins but it’s not great, but better than nothing.  I’ll be having a heart cath (I think it’s) next week, so problems have just gotten worse than better.  As you know, with this disease, it’s always something.  grrr  Anyway, I’ll come back here (when I remember) and rewrite or simplify.  There is way too much to share at this moment.

Mary O, thank you so much for taking the time to love other’s enough to have this site!  My biggest issue right now is to find the very Drs in the US.  It may be Dr. Ludlam but with my husband’s thoughts, I need to hear from others about him and other’s.  Love life and live it the best you can, even if it’s sitting in a chair.

Syndi of Alabama

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Michelle, Adrenal Bio

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A Golden Oldie

I am 37  years old and was recently diagnosed with Cushing within the last month.

adrenal_glandsIn 2010 I was injured on my left leg and for the past three years have been going through medical doctor to doctor. I was only able to return to work for a month and had to go back out on disability because of symptoms. I would get weird mysterious symptoms every month, my doctor said there was clearly something going on in my body.  I have been diagnosed with heart burns, sleep apnea, low blood pressure, high blood pressure, vitamin d deficiency, anemia, possible diabetes, now obesity, fatigue,anxiety, and fibromyalgia.

It has been a very long process to get to the Cushings diagnosis. Prior to all of this I did not have any serious health problems, I was a litigation attorney, every day I was in court running around with no health problems. I am hoping that I am on the road to recovery since I have been finally diagnosed.

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Cassie, Pituitary Bio

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A Golden Oldie

Hi.  I was diagnosed with a 2.5 pituitary tumor and Cushing’s Disease in late April.  I had surgery and it was removed in early May.

I was feeling fantastic until mid-July.  Now I have pain constantly. My joints and muscles hurt so badly that I can barely walk.

I was so happy to have the diagnoses after 25 years of complaining to doctors about my symptoms.  However, I am in so much pain now that I almost wish I had never had the surgery.

On the up side, I’ve lost almost 40 lbs. Help!!

Any advise would be incredibly helpful.

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Jennifer (Jennifer In Puget Sound), Undiagnosed Bio

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undiagnosed3I’m wondering about my situation. I haven’t been diagnosed with Cushing’s but I had my thyroid removed (Hashimoto’s with goiter, family history of thyroid cancer), concluded menopause, had two car accidents (rear-ended)…all in the space of a few years, around 2003-2006. Up until 2003 (the first car accident,) I was a very energetic, upbeat, even-tempered, fit, active, mother of two, and holder of three part-time jobs including teaching high school. I was 50.

Following the car accidents, I developed chronic disabling low back pain. Following the thyroidectomy I developed all kinds of symptoms involving almost all body systems. I’m now bedridden to housebound for great swaths of time. Up until now I’ve been haunting thyroid and adrenal boards, and plowing my way through endocrinologists, MDs and naturopaths looking for answers.

Starting in 2006, I began experiences episodes I call “tizzies” which have baffled all concerned. They last from 6-8 months, building up, reaching a peak, slowly subsiding. They are extremely debilitating and involve many, many symptoms mental and physical. After six or seven of these, I’m convinced they are episodes of extremely high cortisol and I do have some labs to support that, though they are from alternative type laboratories. The saliva ones take four samples spread throughout the day and the 24-hour urine ones are as they sound.

During a trough I have a saliva lab showing mostly low cortisol values. During a different trough I have 24-hour urine results from which the ND pronounced I had Addison’s-like adrenal function. During a recent peak I have both a saliva and 24-hour urine showing off-the-charts high levels of cortisol. Coming down from that peak, I have saliva results showing cortisol low in the morning moving up to extremely high at night.

 

What do you think?

Jennifer in Puget Sound

 

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Mallissa F, Undiagnosed Bio

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A Golden Oldie

Hi all:)

I am in a pickle, and i feel its time to take my head out of the sand and get this Cortisol thing sorted. So here goes.. My son is 7 – i breastfed for 2 weeks as only a tiny drop would come out and we just could not get it to work…. But 7 years on i still have white/milk like discharge from right breast, and clear from left. Mainly right breast. I informed my doctor for the last 7 years everytime i went that it was odd it was still coming out- and that i was literally tired ALL the time. I was also depressed – so i was put on medication for this, and each time i mentioned this, it was always put down to depression. Or how is your diet? etc. I grew tired of this old answer because life was good- i had nothing to be depressed about- and my lifestyle and eating habits are really good.

So the doctor ordered several blood test, a full looking over. And scan for my breasts- which were normal. But the blood test came back with high cortisol.
I do bruise easily yes, lower back pain, sever fatigue- but the doctor said bec i didnt not have the swelling etc it could not be cushings.

Next test was 24 hour urine collection and dex suppression (not sure if thats spelt right) test.

Still cortisol came back high. but prolactin was not high?

My doctor then refered me to a endo – which gave me an appointment almost 9 months away- (major shortage in endos where i lived- and i was not considered a risk)

IN this time i seperated from my partner and just got stuck into work- put my head in the sand and when i wasnt working or looking after my son i slept. Not normal.

I went back to the doctor again finally a year later – ready to sort this out- breast scan again- still fine. Blood test- cortisol still high, little higher than last two tests she said, but not alarmingly high.

I cant take any contraceptive pill etc as they make me crazy. Something is up with my hormones. I had a miscarrige 2 months ago, followed with severe abdo pain- for a month and a half. I am not one to make a fuss and very high pain tolerence so no ultra sound was given at first just antibiotics and assumption it would cure it.

I lived with it for one more month- then went to doctor again- scan done- ovary bleeding and other in wrong place- shrugged off and told come back in 8 weeks to see if on going problem.
Arhhhh

And now i have to get back into Endo and be placed in another waiting list to be seen. Because i am 28 – i think they do not see me as a person who needs help the quickest. Its just i dont carry on about my symptoms and moan- i get on with it, i have to, i am a mum- i am so frustrated now tho- something is not right.

Any advice. I dont know- any reassurance or explanation – help anything would be appreciated greatly.

I feel like i am some kind of person to the doctor who is one of those ones who is looking  for an illness. But i am looking for an answer to my symptoms.

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