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In Memory of Cassandra Dills-Dailey ~ August 29, 2017

August 29, 2022

MaryO In Memory, Pituitary, Pituitary Surgery, Treatments , , , , Leave a comment

 

Casey Dailey, age 38, was fighting Cushing’s disease, a pituitary gland disorder often caused by a tumor creating excess cortisol. She had surgery Aug. 23 and went home the next day. Over the following weekend, she began feeling sick. She vomited, sometimes with blood. Then, she couldn’t stand or talk, relatives said. A high fever started Sunday, after floodwaters surrounded her home, and she became unresponsive.

In the midst of Hurricane Harvey, one family’s cry for help was particularly acute. It was a medical emergency.

Casey Dailey was recovering from surgery at home and needed an ambulance on Aug. 27.

But floodwaters had reached the doorstep of her northeast Harris County home between Greens Bayou and Sheldon Lake.

Her husband, Wayne Dailey, frantically called 911 that afternoon. The line was busy. He dialed more than two dozen times and got through. Help was on the way, he was told, but no one showed up that day or the next.

“That’s when I went to social media,” said Darlene Zavertnik, Wayne’s mother, who lives in Montgomery County. “I went on Facebook and put together a letter.”

Friends and relatives began sharing the post. A cousin called volunteers while Wayne tried 911 one more time and asked for an air rescue. He was told that they were already on the list.

“You don’t understand. She’s dying,” Wayne Dailey recalls saying.

Feeling completely hopeless, he saw some people trolling in a boat just after noon on Aug. 29. Wayne ran out in the water to flag them down. The crew turned out to be the famous civilian volunteers from Louisiana’s Cajun country.

“They came to the house and they got her in that boat,” Zavertnik said.

The Cajun Navy transported Casey Dailey to an airboat. From there, she was loaded onto a dump truck. Confusion about emergency medical sites led to a stop on the side of the road, which is when she stopped breathing, relatives said. An ambulance finally arrived and paramedics worked on her 15 to 20 minutes.

“They got her to the hospital and they just could not …” Zavertnik said, her voice trailing off into sobbing. “We just don’t want anything like this to happen to anybody like her again. There has to be a much better system for this.”

The Harris County Institute of Forensic Sciences recorded 4 p.m. Aug. 29 as the time and date of Cassandra Dills-Dailey’s death at a Humble emergency room. One week later, the cause and manner remains pending. She is not listed among the institute’s storm-related deaths, which all involve drowning or electrocution in floodwaters.

Casey Dailey was 38. The devoted mother had two sons, 14-year-old Luke and Ronnie, 10. She homeschooled the oldest.

She also reached out with kind gestures, such as crocheting baby blankets for strangers who were expecting.

“She was probably one of the sweetest, most loving people you’d know,” Zavertnik said. “She was just always wanting to do what she could to help people, make them happy and make them feel good. She was very special.”

Adapted from http://m.chron.com/about/article/Mother-of-2-dies-in-Harvey-during-medical-12175042.php#photo-14053540

In Memory of Kate Myers ~ June 23, 2014

June 23, 2022

MaryO Addison's Disease, Adrenal, Adrenal Insufficiency, Adrenal Surgery, BlogTalkRadio, Hypothyroidism, In Memory, Insulin Resistance, Interview, Other Diagnosis, PCOS, Pituitary, Pituitary Surgery, radiation, Recurrence, Thyroid, Treatments, Video , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

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.

 

In Memory of Samantha Cohn ~ June 19, 2014

June 19, 2022

MaryO In Memory, Pituitary , , , , , , Leave a comment

in-memory

A Pilates instructor who suffered from a rare disease leaped to her death Thursday from her Upper West Side apartment — nearly crushing a horrified passer-by on the street, cops said.

Juilliard graduate Samantha Cohn, 34, crawled out a window in her 16th-floor apartment at West 71st Street and Broadway and jumped at 10:10 a.m.

Cohn, who was wearing workout clothes, landed on the sidewalk on Broadway and nearly hit a neighbor, Matt ­Kovary.

Her mother told investigators she had been diagnosed with Cushing’s syndrome, police sources said.

Cushing’s syndrome is a disease caused by exposure to high levels of cortisol. A tumor grows in the pituitary gland and causes serious side effects.

“I thank God for sparing me because I would be dead, too,” said Kovary, 59, who was on his way to the Upper West Side Copy Center on Broadway. “I heard a loud explosion. It was right behind me.

“I turned to see what the explosion was. The sight was so horrific. She was just at my feet. She almost took me with her.”

Stunned, Kovary headed to church after the tragic incident and prayed for the pretty victim.

“I’m so shaken from it. I went to church twice and prayed to God to save her soul. I could have been dead, killed an hour ago,” he said.

Cohn had gone missing for a week in April, prompting her worried mother to search for her and alert authorities, said a worker at her building.

“They found her in the hospital, supposedly for heat exhaustion,” said a doorman, Jacques Tassy. “When she came back [home], she seemed different. She wasn’t smiling as much.”

A woman who had been checking on Cohn regularly showed up on Thursday — 30 minutes after she had jumped.

“It wasn’t Samantha Cohn, was it?” the woman wailed. When she found out it was, she burst into tears.

The beautiful brunette spent more than 10 years as a professional dancer before teaching Pilates at Back in the Game Therapy near Rockefeller Center, according to the center’s website.

From NY Post

If someone you know exhibits warning signs of suicide: do not leave the person alone; remove any firearms, alcohol, drugs or sharp objects that could be used in a suicide attempt; and call the U.S. National Suicide Prevention Lifeline at 800-273-TALK (8255) or take the person to an emergency room or seek help from a medical or mental health professional.

Surviving Cushing’s: Area woman hit by rare disease

March 28, 2022

MaryO Carcinoid, Lung Surgery, Lung Tumor, Other Diagnosis, Treatments , , , , , , , Leave a comment

Gina Gregoire Helton is certain if she had a dollar for every time she has heard the word “rare,” she’d be a rich woman.

She has a lot to be thankful for. She’s been married to Sean, the love of her life, since 2011. She has a warm, gregarious family consisting of eight sisters, three brothers, over 30 nieces and nephews and two loving parents, Charles and Denise Gregoire of DeWitt.

But in April 2012, Helton started to experience disturbing symptoms. She had sudden-onset hip pain. A few months later, she had unexplained hair loss and breakage. Deep, red and purple stretch marks, also known as striae, started appearing on her skin.

They were painful and she credits them for essentially saving her life.

“They were the ‘red flag’ that something was definitely not right,” Helton says.

She went to see her doctor, Dr. Jennifer Bell at Genesis Health Group in DeWitt, who admitted she was stumped. Yet, based on the presence of the striae, Bell wanted to test one more thing – Helton’s cortisol levels.

Cortisol is a life-sustaining adrenal hormone that influences, regulates or modulates many of the changes that occur in the body in response to stress. Those changes include blood sugar (glucose) levels, fat, protein and carbohydrate metabolism to maintain blood glucose; immune responses; and anti-inflammatory actions.

As it turned out, her levels were abnormally high. Bell referred her to a specialist in the endocrinology department at University of Iowa Hospitals and Clinics (UIHC) in Iowa City. Cortisol levels fluctuate throughout the day, but further testing showed Helton’s levels consistently remained extremely elevated.

That was the first time she had ever heard of Cushing’s disease.

Helton had nearly every single symptom of the disease that affects less than 200,000 people in the United States.

In addition to hip and back pain, hair breakage and stretch marks, she suffered from moon face, frequent bruising, depression and anxiety, weight gain, frequent urination, high blood pressure and muscle atrophy.

“I was extremely relieved to have a diagnosis,” Helton says. “At the same time, I was scared as I started to learn more about Cushing’s disease and what it can do to your body. There are people dying from this because of improper diagnosis. I was blessed my doctor at UIHC was educated on the disease.”

Most individuals diagnosed with Cushing’s have a tumor on their pituitary or adrenal glands.

Helton’s tumor, however, was located on her lung. Fortunately, her doctor decided to scan that area of her body and discovered the tumor.

In November, Helton underwent surgery to remove the tumor in her chest. However, during the procedure, some microscopic-sized tissue was left behind. So, in January, she found herself in the operating room once again. However, in order to get rid of the remaining tissue, the surgeons’ only option was to remove Helton’s entire left lung.

The situation went from bad to worse when it was discovered the tumor was malignant. It was a very rare tumor called a carcinoid tumor. These tumors are slow-growing cancers that typically start in the lining of the digestive tract or lungs.

After they took her lung, doctors noticed the cancer had spread to her lymph nodes. Members of the oncology department recommended chemotherapy and radiation as treatment.

Because her particular condition is so rare, doctors cannot say definitively what Helton’s prognosis is. Living with only one lung, her physical activity is restricted. Yet, Helton is partaking in water exercise to help ease the pain in her hips and keep her muscles strong. While climbing the stairs is a major obstacle, she intends to participate in the next Fight for Air Climb in Des Moines sponsored by the American Lung Association.

It may take her longer to reach the top than most, but she has made it her goal to finish.

Helton also plans to become an advocate for the Cushing’s disease community. She has yet to meet anyone else in person who suffers from the condition, but has connected with hundreds of them through social media.

In particular, Helton has made contact with Dr. Karen Thames from Chicago. She has been diagnosed with Cushing’s and is working on a documentary called “The War to Survive Cushing’s Disease.”

Helton says the experience has dramatically changed her attitude and outlook on life. She no longer “sweats the small stuff” and her relationships with her loved ones have become stronger.

As for people who are experiencing any of the symptoms associated with Cushing’s, Helton encourages them to seek help.

Even if there are no immediate answers, don’t give up.

“If you are experiencing something with your body that doesn’t seem right, keep seeking help. There is a doctor out there somewhere that will help you. We all know our bodies and when something is wrong.

“My faith and relationship with God has grown tremendously. I count my blessings daily. That is the silver lining. My favorite quote is, ‘Everyone you meet may be fighting a battle you know nothing about. Be kind. Always.'”

via Surviving Cushing’s: Area woman hit by rare disease.

 

In Memory: Shianne Lombard-Treman, March 28, 2018

March 28, 2022

MaryO Addison's Disease, Adrenal, book, In Memory, Video , , , , , , , , , , , Leave a comment

 

Shianne was a Cushing’s Survivor who had just published a book, Be Your Own Doctor

After 17 years as a personal trainer, I ran into health problems of my own, eventually having a name put to it…“Cushing’s Syndrome,” a rare adrenal disease. Tumors were growing on my adrenal glands over-producing Cortisol, your stress hormone.

With 24/7 false fight-or-flight stress signals, the body goes haywire, producing horrific side effects such as weight gain around the midsection and back of neck, diabetes and blood sugar deregulation, inflammation, muscle deterioration, frail bones, hair loss, poor immunity, infertility, moonface, buffalo hump, extreme fatigue, brain fog, confusion, severe anxiety/depression and chemical imbalances.

Being constantly diagnosed as “healthy” caused me to be told, when I was finally diagnosed correctly, that I had maybe five years to live. Misdiagnosis can be a killer.… It is now my personal mission and obligation to help those suffering from any chronic illness that steals your joy, and bring awareness to Endocrine Disorders. From my journey through Cushing’s to Addison’s to recovery—from triathlete to barely being able to dress myself and finally to recovering into a stronger person I never knew I was.

 

 

Shianne Lombard Treman took her life on Wednesday, March 28th after a long struggle with depression brought on by the removal of her adrenal glands to the advancement of Cushing’s Syndrome. 

Shianne is survived by; her husband Timothy Treman, fur babies Molly & Charlie of Baltimore, her mother Geraldine Lombard, sister Danielle Huston, Husband John Huston and their 6 children, Caleb, Alaina, Juliana, Jeremy, Ashley, Aaron of Tawney Town, Brother Michael his wife Sue and brother Enzo and partner David of San Francisco and New Orleans. 

Shianne was born on May 3, 1977. She graduated from Towson University with a degree in Kinesiology. She used this degree to become a personal trainer. She loved helping people get healthy and ended up training two of the “Biggest Losers” on the reality TV show. This led to her being on Oprah as well as Dr. Phil to talk about fitness and health. 

She started her own business as a trainer in San Francisco for 5 years. It was in San Francisco that she met her dashing husband, Tim Treman. They were married in Bethany Beach Delaware in May of 2013 and moved to Baltimore in June of 2013 joining the O’Donnell Square neighborhood.

Among her accomplishments are a Black Belt in Taekwondo, multiple marathons, Tri Athlons and her work with charities.
Shianne changed lives. So many people have come forward to say that she changed their life by teaching them healthier ways to live. She inspired so many that when she was diagnosed with Cushing’s disease, a rare condition, she went into research mode to find out everything she could so she could keep doing this work of helping others. Again, she brought her knowledge of health into play by writing a book about the experience to help others with this disease. “Be Your Own Doctor” explains her battle to maintain fitness and recovery which had never been previously explored for folks dealing with Cushing’s. She was asked to speak at the Magic Johnson conference on rare diseases and in Congress about Cushings. She was also asked to speak at the National Institute of Health Conference. Unfortunately, that was never to be. Cushing’s took more than just her body, it slowly took her mind and spirit.

She was an extraordinary person who lived an extraordinary life… a bright star that burned out too soon.

Viewing will be from 4-7PM Wed April 4th at Connelly Funeral Home of Dundalk 7110 Sollers Point Rd 410 – 285 – 2900.
Reception from 7:30- for close family and friends at Sparrows Point Country Club 919 Wise Avenue, Baltimore MD 21222

Her obituary can be read here.

 

Shianne F. Lombard-Treman
May 03, 1977 – March 28, 2018

In Memory: Liz Raftery, March 2012

March 1, 2022

MaryO Adrenal, Cyclic, Golden Oldies, In Memory, Pituitary , , , , , , , , , , , , , , , , , , , , 1 Comment

We sadly learned that Liz died in March 2012 at the age of 45. She was an active member of the Cushing’s Help Message Boards.  She had a photo gallery there.

Liz wrote in her bio:

Hello, I’m from Hampton, just outside London. Same old story – at least 6 years of various illnesses, including four operations for various crap (kidney stones, gallbladder removal, and 2 cysts on my coccyx)

I then went from being very skinny (even after childbirth) to very fat in about a year (from 7.5 stones to 13 stones). You could roll me down our local hill! I wear maternity clothes as my tum is so disproportionate to my legs & arms (size 26 vs size 12!). My face, chest, neck and back look like someone’s put padding in, and my nice red glow brings all sort of compliments about how healthy i look, grr! I’ll post some photos later.

So far, a left adrenal tumor has turned up, but I have abnormally high ACTH (60) with a highish cortisol of about 600. This apparently implies a pituitary source – but the pituitary MRI was clear. I’m waiting on a second one with gadolinium this time, but here in London MRIs take AGES. The wait at our local hospital is currently 10 months.

In the meantime, I’m frustrated and feeling lousy and v tired. I have to work full time (luckily I’m an accountant, not something overly physical) as I’m a single mum to a lovely 8 year old girl who does not deserve all this. The guilt eats me up, but she is thankfully not the outward bound type!

Walking is a struggle as my legs seem to suddenly buckle on me, and sitting up without support at say the hairdressers or a restaurant is really difficult. So my (thinning) hair’s a mess and I don’t eat out much! I veer about – someone at work told my boss I couldn’t walk in a straight line! Highly amusing as I haven’t touched a drop in ages!

Other symptoms that have developed more recently include interimittently high blood sugar, intermittently high blood pressure, have to shave every day, horrid night and day sweats, red marks up my arms, but none on my body, intermittently rotten swollen ankles and feet, recurrently horrid kidney stones, and of course, an attractive buffalo hump (moo). And the final insult – can’t get into any of my shoes any more so shuffle about at work in my oversize carpet slippers. Very popular amongst my grey accountant colleagues.

As so many of the symptoms are intermittent, the endo says he is convinced it is cushing’s, but cylical, due to (again) interimittent high blood cortisol and ACTH, and non suppression on three low dose dex tests. Then the first 24 hr ufc came back normal which was very frustrating. I’m not particularly religious but i pray he won’t give up on me as it is a long journey compared to the diagnosis of other equally horrid diseases.

Feel quite isolated from my mates and lovely mum, although they are trying hard to be supportive – I’m surprised my mood swings haven’t frightened them all off lately. It’s so difficult to explain how rough it feels to take part in normal activities, especially when every symptom is something most people consider they have in everyday life to some degree. As well as the physical exhaustion/pain/weakness, my body image distresses me enormously. Recurrent kidney stones are pretty painful too (but not as bad as childbirth as a lot of men claim!).

Hope to be there soon. Great to read all your stories and know that so many of you know how it all feels – and have felt it for umpteen years too.

All the best.
Liz

Update April 21, 2005.

Following dex/CRH test, which even included a dexamethasone assay to make sure the levels were adequate (took forever to come back from the lab), my endo confirmed cushings. The bad news is I need the IPSS which will be in May. My ACTHs are between 80-100 so it is most likely a pituitary cause despite my adrenals showing a small adenoma – a red herring!

It’s a very odd feeling after waiting so long, knowing something was very wrong, but not knowing what, and thinking i would go on for ever in misery. So to all you guys out there feeling like this, and i know you’re out there(!), don’t give up!!

Wish me luck …

Posts in Liz’s memory:

Terry: Oh no, that is terribly sad.

Jenny: Oh no, what happened, did he say? 🙁

Beth: omg, I felt sick reading this. I knew of her, but never got to know her. I’m so sorry. 🙁

Regina: How tragic! :/

Liz: This is just so sad !! And yet he reaches out to us in his time of sadness, please forward to him my deepest sympathies

Nancy: Oh no!!” This makes my physically ill! I’m fighting tears.PLEASE get details so we can try to learn about what happened and prevent any other Cushie from loosing their life..  Hugs and prayers to Liz’s family!

MaryO: He didn’t say – I just responded to his email and we’ll see if he has any more to say.  I hate when Cushies die 🙁

Sandra: Omg liz was my friend! We used to chat on the phone when I was seriously ill too! Omg I cannot belkieve it! Mary cud u pm his email add pls xxx

Liz: Me too Mary me too, just brings everything to a scary place for all of us !!

Trisha: I am so sorry to hear this. I remember Liz from the boards.

Sandra: Have just spoken to ciara lizs daughter who said it was a massive heart attack in the end! Her funeral is on thursday! God bless u my friend xxxxx

Lisa: God bless her family..so sad 🙁

Kim: So sad

Jennyfer: Oh no no more cushies down please send my love

Judy: So sad. Does anyone know how old she was, I had never figured that out.

Mary: Oh no! I loved our Lizzy girl and have been thinking of her recently. I hadn’t heard from her in awhile. So very sad. Please pass along my deepest condolences.

Linda: No! Not Liz! No no no

MaryO: She was 45. On the C-H boards, her name was Lizr007

Shauna: News like this breaks my heart over and over again. Mary, please let him know that her Cushie family mourns her loss deeply.

Linda: Please do tell Liz’s brother how much she was loved. I can’t believe she is gone….

Judy: Thanks, Mary. I sometimes haven’t converted who they were on the boards to their real life name. I know who she was. That is so young.

Adrienne: so sorry, so sad!!!

Linda: Please let Liz’s brother know that I adored her. She was one of the first people I met on the Cushings boards many years ago, and she was one of my “rocks”. She was such a supportive, loving person with a great sense of humor. I am heartbroken that she is gone.

Stephanie: How tragic!! Thoughts and Prayers for her family and friends.

Lisa: Poor Liz. My heart breaks for her family. I remember her struggles Mary: You have my permission to send my condolences.

Grace: This is such sad news! Prayers and hugs for Liz’s family. How sad that we lose even one of us to the complications of this disease.

Sandra:  RIP liz u were such a wonderful person and a dear friend! I’m sure suziQ was waiting for u along with all our other cushies that have past over! God bless u huni I will miss u! Xx

Joanne: Im so sorry to hear another precious life taken by this illness, prayers for her and her family..

Anne : Oh not Liz!! She was an awesome person! She had such a great spirit. How horribly awful.

Janelle: So sad.. Please let us know what the complications were.. 🙁

Alicia: So sad. We are losing way too many people to this disease. Praying for her family.

Robin: Oh, this breaks my heart. Please tell Liz’s brother we will miss her terribly.

Heather: I’m so sorry. I loved Liz. Her spirit and sense of humor were amazing. I was actually thinking about her the other day as well. Please feel free to convey my condolences to her family.

Melissa: As soon as I saw her name — Liz Rafferty — I started to cry. Liz was part of our group there on the Cushing’s- Help message boards. She posted over 2000 times. When you posted her screen name, I could see her avatar in my mind. I am so sad to hear that she is not with us, her family or friends. I am so upset as I wonder why this has to happened to her, to us, to our community. Please send my condolences along to Liz’ brother, and make sure they know that she was caring and supportive of many as well as loved by many. I will miss her.

And Mary, please be sure to tell him she was part of our group, too. I bet he would want to make a donation to you and Cushing’s-Help if he knew how extensively she participated in our group.

Hugging all of you a little tighter today.

— Melissa, TX

Beth: Another person with my disease has passed. I didn’t know her personally, but the hurt is still there.. As is the fear. RIP Liz R.

Chanelle: Omg!! Ugh my head hurts :((

Sandra: Beth she was a dear friend and such a sweet sweet girl! Even at her worst she was cheerful and lovely ! She has left behind her daughter and her mum god bless em x

Christina: 🙁 so sad to hear this, RIP to her.

Mary: I loved Liz. She was so funny and upbeat and helpful. RIP old friend.

Linda: Rest in peace, Liz. You were very loved and and I’m thankful to have met you on my Cushings journey.

Susan: Thanks for posting this, MaryO. My sympathies to Liz’s family for their loss. As a member of this community, we will miss you.

missaf: My heart goes out to her family. I’m glad she started to feel better for a little while and got to smile more in life. Damn Cushing’s.

Sherry: Not another Cushie:( I am so sad to hear this news, Liz was well known on the boards and she will be greatly missed. I just hate this. My deepest sympathies go out to her family.

Elizabeth: Deepest sympathy & many prayers. This is so heartbreaking.

Dawn: I did not know her, but her passing has affected me. I am sorry that the world has lost her and I’m sad that it was a result of this horrible disease. It always hits close to the heart. My condolences to her family and friends.

Ami: I am completely heartbroken. She was a dear. Please include my condolences to her brother. I too would very much like to hear what the cause of death was.

Kristin: I’m so upset about this, all I can say is I’m sorry for her family. Leaving a 16 yo without her mommy is so terrible. Somehow the medical community needs to realize how many of our group are not making it needlessly… Prayers for her family. Very nice of her brother to let us know.

Melanie: OMG! I feel ill. I loved Liz dearly, she helped me keep my sanity when I first arrived on the biards and gave me such great support – we had some great laughs together and spoke on the phone for hours at a time. I cannot believe another one of us has gone. This damn disease is so bloody unfair.

Just read it was a heart attack (Thanks Sandra).  – heartbreaking.

Gumdrop: So sad to hear this. I pray her family is comforted.

Sandra: If I find any more info out I will post

Mary: She and I had SIADH in common and the continuing electrolyte issues afterwards, too. I think when I was hospitalized with it, she was the only other person on the boards who’d experienced it at that time.

Bernadette: I didn’t know her, but am so saddened by her much-too-early death. My thoughts and prayers are with her family, and with all the rest of you who knew her.

Ami: I know she and I exchanged posts on the boards. I wish I remembered more about her…

Shelley: I’m sorry to hear about her passing. She and her family and loved ones are in my thoughts and prayers.

Mary: oh no! devastating news. so sorry and saddened to hear. 🙁

Amy: I am so broken hearted. 🙁 Liz was one of the very first people to make friends with me on the cushings website. So sweet and funny, what a wonderful person she was. I have just cried and cried ever since learning of her passing. She really struggled to get her BLA for a long time. May God rest her soul. She truly was “one of a kind”

Dacia: Please send my love, my thoughts and prayers to all…

AuntSha: Condolences to her family…. My prayers and thoughts are with them. She certainly has been taken too young and much too soon :-(!!!

Diane: My beautiful, funny, smart dear friend Liz. You carried me through my journey and held my hand through some of the worst times I can remember. You were my rock, you were my shoulder. Words cannot express how I feel right now. I am heartbroken. I am so sad. The heavens are blessed with another beautiful soul. Love to you my dear friend xx

The last time we saw each other was when you had your adrenal operation. I was so thrilled to finally see you in the flesh after spending months posting to each other here and emailing and chatting on the phone. I met Liz at Cromwell Hospital in London where she was recovering from her adrenal operation. I bought her a massive bunch of stocks that filled her hospital room with a glorious heady scent and I bought along a few things to pamper her with. We spent the afternoon chatting non-stop and I remember giving her Mum a big hug. Those memories will stay with me and that is how I remember Liz. A happy smile and a big heart.

Rest in peace lovely lady….

Your Cushy friend, always,

Diane

x

Ellen: My deepest condolences to her family. This is such a stark reminder of how cruel this disease is.

Monica:  Oh Liz. I’ll miss her, she was such a good person and gave support to us all even while fighting her own battle.

Melly: So tragic! May God welcome Liz and bless her family with peace and strength during this horrible time. Such a reminder that each day I breathe is a gift.

love,

melly

3v3:  I am new here so I am not familiar with Liz, but I am so sorry to read this. Condolences to her friends and family. I was trying to find her bio info/old posts and it seemed like she was cured or at least recovering? 🙁

Judy:  Mine too. It’s just so sad. I pray for the family.

Beth: Such a tragic loss.. I wish her family and friends strength and peace. 🙁

Sandra: Have spoken to aLex woore who was also a cushie friend wiv liz and apparantly she had a bla smtime ago but they cudnt get her sodium n potassium levels right so whether that had anything to do with it I dnt knw but have left my no wiv ciara and her nan so if they call I will let u all knw! X

Karen: Please send my condolences also, such sad news . This disease is awful, we are losing so many amazing people to it. Many prayers,

Monica: Thinking of Liz tonight. I pray for comfort for her family, especially her 16 year old daughter. Far too many friends lost to this disease over the years.

Stanley : I’m sorry to hear that.

Melissa: This makes me cry all over again.

Mary, could you offer our services in helping to decipher what could have led to Liz’s death? For example, we could guide the family on getting copies of her hospital, doctor, surgical, and lab records.

Susan: I am just devastated by this news. Liz was so kind and caring. So tragic to lose someone so young.

Rissa: This is so sad. Praying for Liz and her family tonight.

Ikho: This news makes me so sad. My condolences to her family.

Lorrie: I am so sorry. My prayers go out to her family. 45 years old….such a young woman. God Bless them.

Amy: I’m still just in shock. Thinking back I can remember that sweet pic she had of her cat playing with something. I never could figure out what that cat was doing though. LOL This is just surreal to me . . . 🙁

Jenny: Please pass on my condolences, her family will be in my prayers. Just so unbelievably sad. :'(

Jo: cant believe it.  very sad, god bless our dear friend Liz.taken far too soon.

Jenny: The Cushings community has lost yet another dear member. Liz was only 45, please pray for her family and friends. 🙁

Lisa: One of our fellow “cushies” (Cushings patient) sadly passed away.  Liz was a wonderful 45 yr old mother of a 16 yr old and a friend to us that got so many through this. She was an inspiration and someone that kept her chin up and a smile on her face and ours on our message board. She will be missed.

Mary R:  We’ve lost another Cushing’s Warrior from complications of this rotten disease. Her name is Liz and leaves behind a 16 yr old daughter. This is the 3rd Cushie in 8 months!!! It doesn’t have to be this way! Just because it’s rare, doesn’t mean that the Dr.s should doubt us and our biochemical/imaging evidence. Please say a prayer for Liz’s daughter and family.

PLEASE promise me that if this disease takes me from my family at a young age, that you will bring Cushing’s awareness & education to others on my behalf.

Jen: I remember Liz well and I am so sorry to hear that she has passed. My condolences to her family.

Diane: It’s been a day since I found out and I am still numb with shock. There are moments in your life when things happen that change your whole outlook on things. Cushings was that something for me. However with all the difficulties of coping with such a terrible disease I managed to find many special friendships and was given support by such a special group of ladies that I will treasure in my heart forever. Liz was one of those special people. We had a giggle, we had a moan about the whole NHS process and testing, we shared some of our most painful moments going through this disease. I will miss you so much Liz. Shine a bright light in heaven lovely lady xxx Mary – you certainly have my permission xx Thank you for creating a place where I had an opportunity to meet someone like Liz xx

Amy: I was so very fond of Liz and my heart is still broken in two. 🙁

Diane:  I’ve just been reading some of Liz’s old posts on the site…more tears are flowing but with a big smile on my face. I forgot just how much of a laugh we had despite the fact we were going through hell…I particularly like the fact that alot of people didn’t understand Liz and my British sense of humour. It just reminded that some great bonds were forged during hours of such need and loneliness, stress and depression, and a fight to get heard and a struggle to get diagnosed.

Jo: do you remember when her endo put her in the priory, & she met Ronnie Wood ? Liz Thought she looked better than he did.I cant count how many times K didn’t get his dinner because we were too busy on the phone.Still cant believe it.

Sally: I am so sad to read this. Liz, myself and a few others had said we needed to get together in Bermuda (half way) when we were all finally healthy to celebrate our 40th birthdays. I don’t know if any of us managed to hit that milestone healthy, I know I didn’t and I know Liz didn’t. I’m heartbroken, it’s so very sad.

betseebee: Such devastating news! Liz’s bio was one of the first I read when I joined the boards. I also distinctly remember her kitty avatar and that I could relate to things in her bio, like being grateful that my daughter was also not an outward bound type, which made it a little easier to be at home so much. My most heartfelt condolences to her beautiful daughter, Ciara, as well as the rest of her family.

Liz, may you rest in peace, and dance among the angels.

Sherry: My deepest sympaties go out to her family. This disease is awful, Liz was a wonderful person, she and I joined around the same time, I am very sad to hear of this disease taking another precoius life. RIP Liz.

Diane:  That is so funny Jo, I did not know that. I think Liz would have had no problem looking better than Ronnie!! Have you seen his program on SkyArts right now?!! Sally – I am 40 in June and this has just brought home to me how precious life is and. Not sure I’ll get to Bermuda, maybe Bognor…!! xx

Sandra: Sally I remember that convo ! I was one of them then, and yes I made my 40 th prob the healthiest I’m ever going to b now despite battling fibro still! And diane I knw what u mean about the british sense of humour! So not only did we laugh about the joke we cracked up with the fall out of being misunderstood (in a goodway) of course! Lol …..I thought about her sooo much yesterday and poor ciara bless her! Just stil can’t beleve it x

Jean: Im soo sorry to hear abt this ;( Really shows how this disease is serious n deadly, if not treated properly or from complications from surgery…my condolences to her family n all who knew her.

Dave: Liz, we never got to share that coffee. You were so helpful to me in researching my various problems and I know that there are many many friends who don’t come here any more but we will all miss you. Sincere sympathies to all your loved ones.

Sheila: A tragic loss at such a young age. Sad to know that death happens with Cushing’s when we are in the year of 2012.  Hopefully more doctors will take an interest in this little known disease of Cushing’s Syndrome.

Tanya: 🙁 OMG rest in peace Liz. I’ve heard “I wish cancer would get cancer and die.” Well ‘I wish cushing’s would get cushing’s and die.’

In Memory of Judy Kennedy – December 15, 2019

December 15, 2021

MaryO BlogTalkRadio, Cancer, Familial Cushing's, Golden Oldies, In Memory, Interview, Male, News Items, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , Leave a comment

 

Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness.  She was a great warrior for her children.

 

 

From 2008: Siblings Deal With Rare Cushing’s Diagnoses

By KALEY LYON

klyon@dailynews.net

COLBY — As a junior in high school, Justin Kennedy began getting sick and missing school on a regular basis.

He was fatigued, unable to sleep at night and gaining weight rapidly. He also was unable to focus on his school work and began experiencing memory loss.

After several doctor’s appointments, Justin was diagnosed with Cushing’s disease, a rare disorder caused by excessive cortisol levels resulting from a tumor on the pituitary gland.

At the time of Justin’s diagnosis, his younger sister, Jessica, also was showing symptoms of the endocrine disorder. Her diagnosis came at the same time.

“I think they both have had symptoms since they were little,” said their mother, Judy Kennedy.

Other symptoms include a round facial shape, flushed cheeks, excessive hair growth, skin discoloration and depression, Judy Kennedy said.

Weight fluctuation is uncontrollable. Weight is gained at a high rate, despite diet, exercise and other efforts, Jessica Kennedy said.

“The weight has a mind of its own,” she said.

The diagnosis, following many doctor’s appointments and tests, came last November. Today, Justin, 19, keeps busy with a job at McDonald’s, and Jessica, 15, is a freshman in high school taking online classes.

One of the most bothersome symptoms of the disease is the toll it takes on the sleeping schedule. Her children often are unable to sleep until early morning, Judy Kennedy said.

“When there was a chance for her to do online high school, it was such a relief,” she said. “We don’t have to worry about what time she starts her school work.”

Appetite fluctuation is another side effect. The two go through phases where they have healthy appetites, then hardly eat at all, she said.

That’s because the disease puts their bodies through various cycles, which can last for less than a day or for months at a time, Judy Kennedy said.

It’s predicted that about 15 people in a million are diagnosed with the disorder, which can make it difficult to find support and get answers, she said.

The family, however, discovered an online support group and has enjoyed the opportunity to communicate with other families in similar situations.

“I honestly do not know where our family would be if I wouldn’t have found that support group,” Judy Kennedy said. “Even though it’s still awful, it’s better to know that other people have the same symptoms.

“There are people on the streets who have this and have no idea,” she said. “And their doctors don’t either.”

Both teenagers also are preparing for surgery. In mid-May, the family will travel to Houston, where the siblings will have the tumors removed from their pituitary glands. This is expected to resolve the hormonal imbalances, Judy Kennedy said.

“I’m looking forward to that day,” she said.

This Topic on the Message Boards

JESS AND JUDY ARE MEMBERS OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jess and Judy answered questions in an online Voice Chat January 17, 2008. Archives are available.

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Sushmita Sen’s battle with Addison’s disease

December 1, 2021

MaryO Addison's Disease, Adrenal, News Items , , , , , Leave a comment

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 Bettye Jean Douglas ~ September 28, 2016

September 28, 2021

MaryO In Memory, Korlym, Pituitary, Treatments , , , , , Leave a comment

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

Téra (HappyGirl), Video Bio

September 25, 2021

MaryO Cyclic, Video , , , , , , , , , , , , , , Leave a comment

Téra is a member of the message boards – you can respond to her posts here.

Dear endocrinologist, I need to say something for all the people like myself with endogenous mild episodic Cushings that are dismissed there’s some patients who may not be strong enough to speak up or even advocate for themselves & know what tests to ask for. Some will just give up and accept this as their fate and have a horrible quality of life & die way too soon from the terrible things this illness does to your body. Some may take their own lives (depression, anxiety, self doubt is a very real & serious symptom of this illness). I heard that voice in my head, “if one more doctor dismisses me, I am ending my life! I can’t live like this anymore!” These are very important things to remember.

1. Not every person has all the symptoms especially mild Cushings but we are still just as miserable.

2. Mild episodic Cushings may not show as elevated cortisol on UFC or midnight salivas. We have lots of lows & some highs that are sometimes difficult to determine because it could be just a few hours of high cortisol in a day & the rest normal or low.

3. There are tests like the 17-OHS that can show abnormal cortisol levels & should always be done on the same 24HR UFC urine.

4. Don’t blow off someone by just doing a low dose dex suppress, that test is ONLY TO SHOW LOCATION OF THE TUMOR! If you suppress, then it points to pituitary, if you don’t it points to adrenal.

5. A Buffalo hump means Cushings more often than it means just a normal fat pad due to a persons fat distribution!

6. Put down the mouse & step away from the computer & examine me!

7. Actively Listen to what I am saying to you!

8. Morning cortisol serums are usually useless because mild episodic Cushings patients trend to be in a normal or low during the morning & mildly to moderate high in the late evening to early morning hours.

9. A midnight cortisol serum is very helpful to determine if the patient has Cushings, IF they are showing symptoms of being on a high.

10. Multiple testing is needed to rule out Cushings. Stop dismissing Cushings as a diagnosis with only one round or even four rounds of tests!

11. These patients are looking to you for help in a very scary time, stop giving the exercise, meditation speech! It only is an insult to us. Most Cushings patients actually don’t eat enough calories & restrict trying desperately to loose weight.

12. Mild episodic Cushings patients can loose weight so don’t disregard if they do because it will come back on even with no change to activity levels & caloric intake.

13. It should Not take 3 years or longer to get a diagnosis of Cushing’s!

14. It should NOT take 4 + endocrinologists pushing off to the next & the next to get a Cushings diagnosis!

15. Stop immediately assuming we have PCOS! Test for it before you pigeon hole a patient! And realize you can have both PCOS and Cushing’s.

16. Stop tossing pills at each individual symptom, look at all the symptoms as a whole. When dealing with Cushings, the only true reverse of the symptoms is surgery.

Part 2

In addition to the 16 items above, she added:

17. You can have normal ACTH levels and still have Cushing’s. “Patients with ACTH-secreting tumors will either have a normal or elevated level of ACTH.” – Dr. Findling Dr. Findling is an endocrinologist and Professor of Medicine at the Medical College of Wisconsin. Dr. Findling has been dedicated to the clinical evaluation and care of patients with Cushing’s syndrome for over thirty years. He has over 100 publications and was a co-author of the Endocrine Society guidelines for the diagnosis of Cushing’s syndrome.

Part 4, September 25, 2021

This is just a quick update. I am not in a good head space. Being denied a much needed surgery because of irresponsible people are not following cdc guidelines, makes me very very very very upset!

Every day a new issue pops up, IIH could make me go blind, my bones could break, my muscles are weak, my mental health is poor, my heart is enlarged, my brain is in atrophy!!!

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