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Jean (Jinxie) Cushing’s and Acromegaly Bio

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This bio was originally posted 1/26/2008

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My Cushing’s and Acromegaly Odyssey

During the summer of 1999 I was a trim and fit 130 pound woman. I was very athletic and worked out all the time. At that time I had also been taking Tae Kwon Do. I was able to eat anything that I wanted and not gain weight. I wore size 8 pants.

Fast forward to May of 2000. I developed increasing stomach and bowel problems. I had a spastic colon and serious GERD. Along with that came a poof in my belly. Although I was still wearing the same size my stomach started to look “pregnant”. I was referred to a gastroenterologist who began treating my myriad of health issues. He really couldn’t find a reason for all of it but said he could treat it. For awhile I managed okay on the drugs and diet that I was treated with. Everything went in cycles.

During the summer of 2001 my naturally light blonde hair began to change color. It got black and mousy looking at the roots. At the same time it started thinning, the texture was horrible and no longer shiny and baby soft. I developed heat intolerance. I was uncomfortable in 80 degree weather. I also developed strange rashes and red dots on my skin. Later that fall my neck and face started to turn beet red. It stayed that way.

I could no longer fit in my wedding rings and my shoe size went from a size 7 ½ to and 8 1/2. Doctors didn’t find this impressive. My neck went from 13 inches around to 16. I gained 12 pounds in 1 week alone. I started getting real fat in my stomach and armpits, and I could no longer wear normal bras. I also started getting a lot of fat on my upper back. I grew hair in places that women should not grow hair. My face was huge with strange acne outbreaks. I also got acne in weird spots.

At the time I had put on about 20 pounds all in my stomach. When I would try other clothing it wouldn’t work because the next size bigger fit in the waist but the butt and legs were huge. I gave up on real pants and started to wear stretch clothes all the time. At this time I could no longer exercise to my peak performance. I was tired all the time and never felt well and I looked like I was 6 months pregnant. I thought that I was getting old.

January of 2002 my bowel and stomach troubles peaked. I was in and out of the hospital. Although I was following the healthy eating plan and exercising no doctors believed me. My PCP did a TSH test and it came back at 27.48. I was hypothyroid, at that time my estradiol levels were also non-existent. So off I was sent to an Endocrinologist. I was given replacements for both yet nothing improved.

This started an intense year of doctors. I was diagnosed with anything and everything at this point. I was started on the Atkins diet plan. I followed this religiously and walked for up to 2 hours a day and continued to gain weight. By this time I was 165 pounds. Finally realizing that something horrible was wrong with me I started seeking out Endo’s on my own. It led me to one who thought he should do a few 24 UFC’s. One came back high, 2 others came back high normal (33.4 and 33.9 with a range of 2.9-34). They then did serum cortisols which came back below normal. I was frustrated.

It was November by now and I was getting no where fast. At this point I had seen 11 different doctors. The last of which told me that there was no way I was eating healthy and not losing. He even suggested that my fresh sliced berry snack was making me fat. By now I’ developed high blood pressure and high blood sugars. My fasting blood glucose came in at 170.

By this time I was so exhausted and developed such horrid bone pain that I could not even exercise anymore. I remember waking up late one morning and crying. I went downstairs and told my hubby I was sure my back was breaking. It was horrible. I weighed 196 pounds and looked 9 months pregnant with triplets.

I came home and looked the tests up on the internet. I started reading everything that I could find. I knew then that I had Cushing’s. I found the Cushing’s help site. The trouble was that some tests were normal and some were abnormal. Finally in January of 2003 I went to see Dr. Friedman after another patient emailed me. Dr. Friedman tested my 17-Hydroxysteroids and 17- Ketosteroids which came back elevated. He also did some additional salivary cortisols testing. He finally figured out that I not only had Cyclic Cushing’s but also Acromegaly.

After many more tests and some MRI’s my tumors were found. I had pituitary surgery to remove them. I was devastated that I was not cured from the Cushing’s. After much consulting I decided to proceed with a Bilateral Adrenalectomy to cure it once and for all. I am recovering slowly but surely.

I am now 4 months post-op.

Click any thumbnail to view the larger image.

Before Cushing’s [Photographer: Jeanne’s family]

In the kitchen [Photographer: Jeanne’s family]

Jinxie [Photographer: Jeanne’s family]

Jinxie [Photographer: Jeanne’s family]

Yana, Pituitary Bio

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It took Yana Zavros 16 years to get diagnosed with a disorder called Cushing’s disease.

Sixteen years of a demoralizing condition that causes muscle weakness, mood changes, and weight gain, among other symptoms, because the patient’s adrenal glands produce too much of the stress hormone cortisol.

By the time Zavros received her diagnosis, she was an accomplished researcher at the University of Arizona who focused on gastric and pancreatic cancer. Cushing’s is rare in humans, and Zavros was frustrated by how long it took to diagnose and that the only treatments available to her weren’t even specific to her disease.

Then, she remembered that she was qualified to start a research program and do something about it.

“It was a turning point in how I viewed research and what we do as scientists,” she says. “I found my purpose.”

In fall 2024, Zavros joined UGA’s new School of Medicine as Research Center Director and Georgia Research Alliance Eminent Scholar in Molecular Medicine. Already, she is partnering with scholars on campus to find new answers for Cushing’s while continuing her cancer research.

Zavros believes the solution for better diagnosis and treatment for Cushing’s disease in humans is first understanding how to cure the disease in dogs through an approach to research called One Health. This concept looks for health solutions beyond the human by also considering animal and environmental health. In the last five years, UGA has invested in the One Health approach as part of a broader effort to bring interdisciplinary research teams together to tackle complex 21st century challenges.

While Cushing’s in humans is rare, that’s not true for canines. About 100,000 dogs are diagnosed with the hormonal disorder each year. Like their human counterparts, dogs with the disease suffer from weakness and weight gain. They also lose their fur, gain pot bellies, and can have a shorter life span.

The fact that both humans and man’s best friend share the disease (which, to be clear, is not contagious) might be the key to finding better treatments or perhaps even a cure for Cushing’s for both species.

“One Health is all about the intersections between humans, other animals, and our environment,” says Jon Mochel, director of UGA’s Precision One Health Initiative. “What can we learn about similarities in diseases, such as cancer or cardiarenal and metabolic diseases, that are shared by humans and other animals? What conditions lead to disease transmission between animals and humans? What role does the environment play in all of this? And how can we create better conditions to optimize human, veterinary, and environmental health?”

One Health has been practiced at UGA for over a decade, but the concept accelerated with the launch of UGA’s Precision One Health Initiative, supported by a hiring initiative in 2021. With UGA’s new School of Medicine, UGA is one of 13 universities in the nation with schools of veterinary medicine, human medicine, and agriculture on one campus. Add these to UGA’s other strengths, which range from pharmacy and engineering to public policy, law, and business, and UGA is positioned to make a unique impact.

“By working together, we can accelerate the discoveries of cures and then speed up the translation of discoveries to bedside practice,” said Jack S. Hu, senior vice president for academic affairs and provost at UGA’s One Health Symposium in November.

This interdisciplinary approach is being targeted at Cushing’s disease. UGA researchers are trying to understand, on a molecular level, the tumors that often cause the condition. And since the disease is much more common in dogs, researchers are collecting tumor biopsies from canine patients at UGA’s Veterinary Teaching Hospital.

“From those biopsies,” explains Mochel, who is also a co-investigator on the Cushing’s project, “we’ve created mini-tumors in dishes to screen for thousands of molecules in the cells. This process will allow us to determine which drugs could be safe and effective in fighting the disease.”

Researchers hope to customize optimal treatments for individual canine patients. If the trial treating dogs for Cushing’s is successful, then the next step is studying treatments in humans.

The research project could help with other applications as well. For example, Karin Allenspach, a clinician scientist and professor of pathology in the College of Veterinary Medicine, is a co-investigator on the Cushing’s research, helping create the mini-tumors called organoids, which serve as three-dimensional models of diseased tissues. These organoids can also be used in cancer research to help try out more drugs more quickly and pinpoint which ones should be tested in clinical trials. If this approach works, it means better treatments delivered to patients faster and cheaper.

UGA’s Precision One Health Initiative is just getting underway, but there’s already momentum toward making an impact.

“We have the resources, the talent, and the expertise to move this field forward,” Mochel says. “Our next step is to effectively translate these efforts from the lab to the patient’s bedside.”

–Aaron Hale, University of Georgia

Catherine J (Catherine Jones), Pituitary Bio

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In November 2009 my PCP diagnosed me with pituitary Cushing’s Disease.  His diagnosis was confirmed by an endocrinologist at the University of Washington Medical Center in Seattle, WA in January 2010.

English: Concept of Gamma Knife Stereotactic R...

English: Concept of Gamma Knife Stereotactic Radiosurgery (Photo credit: Wikipedia)

In March 2010, I had my first pitutary surgery at UW Medical.  My second surgery was in September 2010 at the same hospital.  My third surgery was at Harborview Medical Center, also in Seattle in May of 2011.  After my husband and I learned the third surgery had also failed I had gamma knife radiation on half my pituitary gland in November of 2011, also at Harborview.

After waiting what seemed like a very long year and a half we decided to have my adrenal glands removed by a surgeon from the Seattle Cancer Care Alliance in May 2012.

I am finally without Cushing’s Disease and looking forward to a “normal” life.

Shannon (sweetpea), Pituitary Bio

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I am a mother of a 19 year old daughter who recently has had her life turned upside down with a diagnosis of Cushing’s Disease.

I am looking for some support so that I may better assist her.  Please someone reach out to me.

Kindest Regards, Shannon

Becky (Becky), Pituitary Bio

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Hi I’m Becky a 34 year old wife, mother of twins and teacher.

I’m having surgery to remove a pituitary tumor this week and am told it will really help to alleviate the Cushings symptoms I’ve had for years!!  I wish I had had this diagnosis sooner but I know I’m lucky to have it now as I had planned on bariatric surgery as my last hope.

The opening in a GE Signa MRI machine

The opening in a GE Signa MRI machine (Photo credit: Wikipedia)

When the headaches became too much to handle and my face went numb I was given an MRI and now I know the truth.

I’m new to this, scared yet hopeful.  I’m determined to get control over this but still, this is hard for me.

Voices From the Past: Michelle (tigs68), Pituitary Bio

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pituitary-gland

hi everyone i was on the board about 15 years ago with my first taste of cushings disease, i had a reocurrance in 2008 and a second operation, and am now under investigation again

Gail S, Pituitary Bio

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After constant wondering for over two years, I was sent to see an Endocrinologist about my weight. Numerous tests and an MRI, I was diagnosed with Cushing’s Disease.

I am 2 months post pituitary operations and things are lookings up.

Heres to a road to recovery! 🙂

See my full story here: www.mylifeasacushie.blogspot.ca

Stacy H. (Stacy H.), Pituitary Bio

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Good Evening, My name is Stacy…I am 1 year Post-Op (2 Pituitary Surgeries in 3 days) and feel absolutely WONDERFUL!

After MUCH reflection I am thankful for what I have gone through. Although Cushing’s Disease is something I wouldn’t wish on any one; I must say I have been and am enriched day by day. Enriched with more knowledge and understanding and the ability to help others.

After 14 years of un-diagnosis FINALLY THERE WAS AN ANSWER.  One, there was the Primary Care Physician who suggested it and there after this Board.

MaryO, without you I would probably be in my grave. Thank You for your dedication and sharing so much of your self with us! PS. Thank You for sending my Dear Friend Anne from Australia: she’s the BEST!

We adore you!

Stacy

Voices from the Past: Alex, Pituitary Bio

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After long and tiring process was diagnosed with Cushing disease in June 2011.

Had a surgery to remove pituitary tumor in July 2011.

Remained on the cortizol for 18 months.

If you live in New York metropolitan area and have a pituitary tumor and would like to ask some questions or need suggestions, please email me.

I have seen the worst of this disease, but was able to make it through. I was lucky to have right doctors (neuroendocrenologist and surgeon).

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Voices from the Past: Jessica, Undiagnosed Bio

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First of all – I have to excuse my language – I’m Swedish, and will not always be able to find the right words.

After several years of increasing symtoms some of which worsened severely a couple of months ago, I finally found “Cushings disease” and recognised most of the symtoms. I’ve suffered from severe depression and thereafter adrenal burnout, and have explained most of my problems from this point of view. It’s “only” stress related, I’ve thought to myself.

I’ve always been slender, but gained weight using antidepressives. After ending SSRI I managed to loose weight again (I love running, and exercised a lot!) But my face stayed round and my belly stayed big. (Today BMI 21 and look 7 months pregnant)

I’m very easily bruised since several years.

I wake up several times each night and it’s often very hard for my to fall asleep again.

I get easily exhausted, mentally and physically. I’ve got lowered simultan capacity, am sensitive to impressions (sounds and vision)

My skin is very dry and thin and looks like paper on the back of my hands and on my lower legs.

My cheeks are always red, as well as the front of my neck.

I’ve always had extremely low blood pressure, and now it was high (in the lower region)

Inflammations won’t heal. I’ve had stressfractures in my left foot twice the last couple of years.

My legs always hurt.

The last two months my strength has decreased a lot!

I’m always thirsty and pee a lot.

I live extremely healthy (Exercise, eat good, hardly any sugar, exercise bodyscan/meditation, minimum of alcohol – my day ends extremely early) – all in order to manage my part time job, and my two children who are in great need of me.

And now we’ve found that my cortisol is high (urine and blood), ACTH is high and I’ve been a patient for a couple of days for several bloodtests, another urinetest and dexamethasone-test. Tomorrow I’m scheduled for an MRI, and next week I’ll see a doctor to get the results.

It seems that I’ve got Cushings – and my first feeling was a sense of relief. All this suffering all these years, and I’ve always thought that I wasn’t trying hard enough. And the explanation was that something was growing in my head that they would be able to cut away. And the tumour is almost always benign.

But having read some stories on the internet I’m suddenly scared. I realize that you are in deeper need of writing if you don’t get well, but still I’m suddenly very scared.

If anyone out there is a “success” (when it comes to getting well again) please respond. I desperately need hope.

Jessica

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