Cushing’s Disease

🎬 Video: Taylor Davis Spreads Awareness about Cushing’s Disease

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FLORENCE, SC (WBTW) – 21-year-old Taylor Davis, spent nearly three years battling a mysterious illness called Cushing’s Disease.

“I could barely walk to class anymore. I was in pain. I gained like 70 pounds, despite extreme dieting and exercising,” said Davis.

When Davis enrolled into her spring semester classes at USC, she started experiencing several symptoms.

“I noticed my grades started to take a fall and I was like ok something is seriously wrong here because I’ve never had trouble in school and I could stay up studying all night long and not remember anything the next day,” said Davis.

Davis went from doctor to doctor, but no one could figure out what was wrong with her.

“I thought I was going crazy. Every doctor would say keep trying to diet and exercise and we’ll get you on some medication for your depression and your anxiety,” said Davis.

After dropping out of USC and spending time in the emergency room, a Cushing’s Disease Facebook group led her to a research doctor in California.

“Around October is when the doctor officially diagnosed me and within a month I had my brain surgery scheduled,” said Davis.

Fast forward a couple months later, Davis is thankful to share her experiences on social media and help others going through the same disease.

“I post about it all the time and by using the hashtags for Cushing’s disease, I probably get three to four messages a day from people all over the world. I’ve had people message me in Spanish and I have to use google translate to try and help them,” said Davis.

From https://www.wbtw.com/news/a-woman-in-the-pee-dee-spreads-awareness-on-mysterious-disease/

💉 Helpful Doctors: North Carolina

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Sherry A added her helpful doctor, Matthew Gorris.

How would you rate your Helpful Doctor? 5/5
Your Doctor’s Name Dr. Matthew Gorris
Your Doctor’s Address Medical Center Boulevard
City: Winston Salem
State / Province: NC
Postal / Zip Code: 27157
Your Doctor’s Phone Number (336) 713-7251
What are your Doctor’s Specialties? Endocrinologist
Hospital Affiliation Wake Forest Baptist Medical Center
Comments Excellent Doctor, Takes his time, actively listens to his patients concerns and addresses questions in an easy to understand manner.

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💉 Helpful Doctors: Washington, D.C.

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Someone on Facebook her helpful doctor, Dr. Susmeeta Tewari Sharma.

 

 

How would you rate your Helpful Doctor? 5/5
Your Doctor’s Name Dr. Susmeeta Tewari Sharma
Your Doctor’s Address
110 Irving Street Northwest
GROUND FL.
Suite NW

Washington, DC 20010
Your Doctor’s Phone Number 301-774-8962
What are your Doctor’s Specialties? Many, including Addison’s and Cushing’s.  See this list.

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🖥 SherryC Cushing’s Slideshow

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Cushing’s Help message board member sherryc presented this PowerPoint at Pioneer Pacific College in 2017.  I am resharing since Sherry recently died.

It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

 

ℹ️ Reasons You or Your Friend or Family Member Should See Dr. Friedman

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Refer a friend or family member to see Dr. Friedman as a new patient and get a $50 voucher for your next appointment.

Here is a list of reasons you or your friend or family member should see Dr. Friedman

  1. Dr. Friedman thinks outside the box, as willing to look beyond standard testing and treatment approaches.
  2. Dr. Friedman is an expert in pituitary, thyroid and adrenal issues as well as several other endocrine conditions, while most endocrinologists specialize in diabetes or just thyroid disease.
  3. Dr. Friedman has seen and diagnosed more patients with Cushing’s disease, growth hormone deficiency or adrenal insufficiency in a month than most Endocrinologists see in a lifetime.
  4.  Dr. Friedman is well-trained and knows the Endocrine literature well
  5. Dr. Friedman is not beholden to protocols that many university-based Endocrinologists need to follow
  6. Dr. Friedman listens and cares.
  7. Dr. Friedman works with you and not against you
  8. A new patient who wants to be seen by Dr. Friedman can usually get in within a few weeks as opposed to months for other Endocrinologists that are booking out several months.
  9. Dr. Friedman uses conventional medicines, compounded medicines and supplements to optimize your health.
  10. Dr. Friedman works with several compounding pharmacies that prescribes weight loss medications so you can lose weight while you get your hormones optimized.
  11. Dr. Friedman believes should learn all about their health and provides scientific, yet easy to understand articles to help educate his patients.
  12. Dr. Friedman has hired extra staff members, so your needs are addressed in a timely manner.

For more information go to Dr. Friedman’s website https://www.goodhormonehealth.com or contact his office at mail@goodhormonehealth.com.

🦓 Day 28, Cushing’s Awareness Challenge

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People sometimes ask me how I found out I had Cushing’s Disease.  Theoretically, it was easy.  In practice, it was very difficult.

In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…”

I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.

After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors for many years and all of them said that I couldn’t have it.  It was too rare.  I was rejected each time.

Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.

According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.

The term derives from the aphorism “When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.”

So, doctors typically go for the easily diagnosed, common diseases.  Just because something is rare doesn’t mean that no one gets it.  We shouldn’t be dismissed because we’re too hard to diagnose.

When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.

When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me.  Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me.  They packed me off to an endo where the process started again.

My final diagnosis was in October 1987.  Quite a long time to simply  “…ask your doctor about Cushing’s”.

Looking back, I can see Cushing’s symptoms much earlier than 1983.  But, that ‘s for a different post.

💉 Helpful Doctors: California

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Dr. Daniel Kelly, a board certified neurosurgeon, is Director of the Pacific Neuroscience Institute and Professor of Neurosurgery at the John Wayne Cancer Institute.

Considered to be one of the best neurosurgeons in the US and a multiple recipient of the Patients’ Choice Award, Dr. Kelly is internationally recognized in the field of minimally invasive keyhole surgery for brain, pituitary and skull base tumors.

He has one of the world’s largest series in endonasal surgery with over 2000 procedures performed including over 800 endonasal endoscopic surgeries, and over 2000 craniotomies for brain and skull base tumors. His current surgical practice encompasses the full spectrum of brain and skull base tumors, both benign and malignant, treated with minimally invasive and conventional approaches.

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Basics: What Causes Abnormal Cortisol Levels?

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Cortisol isn’t bad; you need it to help regulate your responses to life. Regulation involves a very complex interplay of feedback loops between the hypothalamus, pituitary gland, and adrenal glands, says Dr. Singh.

“In general, cortisol levels tend to peak in the late morning and gradually decline throughout the day,” he explains. “When a stressful event occurs, the increased cortisol will work alongside our ‘fight or flight’ mechanisms to either upregulate or downregulate bodily functions. [Affected systems include] the central nervous system, cardiovascular system, gastrointestinal system, or immune system.”

In addition to normal processes that trigger or suppress cortisol release, levels can also be affected by different medical conditions, Dr. Singh says. For example, if someone has abnormally high levels of cortisol, this is called Cushing’s syndrome, which is typically caused by a tumor affecting any of the glands that take part in the process of cortisol production.

When people suffer from abnormally low levels of cortisol, it’s called Addison’s disease. It generally occurs due to adrenal gland dysfunction, but could also be the result of abnormal functioning of any of the other glands in the cortisol production process.

Finally, if you use corticosteroid medications such as prednisone or dexamethasone, prolonged use will result in excessive cortisol production, Dr. Singh says.

“If the medication is not adequately tapered down when discontinued, the body’s ability to create cortisol can become permanently impaired,” he says.

From https://www.yahoo.com/lifestyle/manage-pesky-stress-hormone-cortisol-184900397.html

 

Research Study for Patients Diagnosed with Cushing’s Disease and Their Caregivers

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We’re looking for caregivers to loved ones diagnosed with Cushing’s Disease or patients diagnosed with Cushing’s Disease to participate in a research study.

✅ Who: Patients and caregivers of loved ones

⏳ What: 30-minute Online Survey

💰 Compensation: $60.00

Sign up here: https://rarepatientvoice.com/CushingsHelp/

 

😳 A *Bit* Misleading

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Headline: “‘I gained 10st due to a rare condition – I lost it again by doing a simple daily exercise’
Hannah Mai, 37, managed to lose the weight in two years by doing a simple daily exercise”

She did lose the weight but, reading the article, also “Following her diagnosis, Hannah underwent brain surgery in February 2021 to remove the pituitary tumour causing her condition and was prescribed steroids to manage it.”

Just a bit of a misleading header.

Here’s the whole article.  And it was a bit more than a “simple daily exercise” and removing a pituitary tumor!

A woman who piled on 10 stone due to a rare condition has shed the weight in just two years, thanks to a daily exercise routine.

Hannah Mai, 37, was diagnosed with Cushing’s disease, a hormonal disorder caused by high cortisol levels, in October 2020 after gaining 10 stone in just two and a half years.

Following her diagnosis, Hannah underwent brain surgery in February 2021 to remove the pituitary tumour causing her condition and was prescribed steroids to manage it.

In April, 2023, Hannah was taken off her steroid medication and was determined to shed the 10 stone she gained due to the disease – who weighed 20 stone 5lbs and was a size 26.

Through a combination of high-protein meals and daily pilates sessions, Hannah impressively slimmed down to 10 stone 4lbs, fitting into a size 10, all within two years.

Hannah, from Coventry, Warwickshire, said: “Once I started losing the weight, I just kept going.

“It isn’t easy, you really have to push yourself, and focus on who you want to be and think about who you want to be.”

When she turned 30, Hannah noticed she started gaining weight and went from nine stone to 16 stone in a few months. She revealed that despite frequent doctor visits, she was constantly asked if she was expecting or if her weight gain was due to hormonal changes.

Hannah shared: “I was always around nine stone, but I noticed how I started to gain a bit of weight. I knew there was something wrong with me, but people around me thought I had changed my diet and asked if I was eating more.

“I was asked if I was pregnant six times, and told that my weight gain could be caused by hormones. I went up to 20 stone at my heaviest.”

In October 2020, over two years since her weight began to increase, Hannah woke up one day with a hunched back.

After a quick Google search suggested Cushing’s disease as a possible cause, and noticing the other symptoms including weight gain, she immediately sought medical advice.

She was referred to University Hospital Coventry & Warwickshire, where an MRI scan and blood tests confirmed she had Cushing’s disease.

Hannah added: “I printed off the list of symptoms and took them to my doctor, who then referred me to the hospital.

“There, I had an MRI scan and blood tests, which confirmed that I had Cushing’s disease.

“I was relieved but scared when I got the diagnosis. I had been saying for years that there was something wrong with me.”

Five months post-diagnosis, in February 2021, Hannah underwent brain surgery to remove the pituitary tumour causing the condition, and was put on steroids to manage her symptoms.

After battling with her health and spending two years on steroids to manage her condition, Hannah came off the medication as her health improved.

After she came off her medication, Hannah said she knew she was better and became determined to lose weight.

She said: “It wasn’t easy to lose weight whilst I was still on steroids, as soon as I came off them, I knew this was my body and I was a lot better.

“I really pushed myself, I worked super hard, cut out all sugar, cut out dairy, and gluten after I was diagnosed with celiac disease.

“I have a low-carb, high-protein diet with lots of vegetables, and I do pilates every day.”

Her commitment paid off as she impressively slimmed down from 20 stone to 10 stone within two years. She went from wearing a size 26 clothes to wearing a size 10 – back to where she was before Cushing’s disease.

Hannah said: “I am super proud of myself, I am always worried that the weight will come back.

“I feel so much happier. When I look back at myself, I just can’t believe I was that size.

“When I look back at old photos, I feel very sad about what happened to me, but it makes me think that I need to be proud about how far I have come.”

Adapted from https://www.mirror.co.uk/news/health/i-gained-10st-due-rare-35432462