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

MaryO Cushing's Awareness Challenge, Cushing’s, Pituitary, surgery, Video , , , ,

 

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

MaryO Five Star, Helpful Doctors, North Carolina , , , ,

 

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.

MaryO Five Star, Helpful Doctors , , , , , , , ,

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

MaryO Cushing's Awareness Challenge , , , , , , ,

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.

 

👎 Doctor VS Insurance

MaryO Cushing's Awareness Challenge , , ,

I’m not sure if this should go under humor or what.

This is funny/not funny but it reminds me so much of insurance companies thinking that they somehow know better than the doctor in the room with me.

Hooray for this doctor for getting it.

A doctor’s letter to UnitedHeathcare for denying nausea medication to a child on chemotherapy.

 

📚 Merck Manuals: Answering Common Questions About Cushing Syndrome

MaryO Basic Info ,

MaryO’Note:  Cushing’s Disease is a subset of Cushing’s Syndrome and is caused by pituitary issues.

High cortisol – and its deleterious effects on the body – may be a more commonly recognized phrase in today’s healthcare lexicon. Still, doctors say there is a need for more awareness of a rare and potentially life-threatening condition involving cortisol, known as Cushing’s Syndrome

 

In a new editorial from MerckManuals.com, Ashley B. Grossman, MD, University of Oxford; Fellow, Green-Templeton College, addresses common patient questions around Cushing syndrome.

1. What causes Cushing syndrome?

Adrenal glands release hormones that help control blood pressure, heart rate, balance of water and salt, response to stress, and more, says Grossman. Cushing syndrome occurs when these glands release too much of the hormone cortisol, or you are taking a hormone like cortisol.

This typically has one of two causes:

  • a tumor in the adrenal glands or cancer in another part of the body
  • taking a corticosteroid medicine for a long time

2. What are the symptoms of Cushing syndrome?

Cortisol is an essential hormone in the body. Having too much can cause many changes, including increases in blood sugar and cholesterol. Corticosteroids also alter the amount and distribution of body fat, says Grossman.

Other symptoms of Cushing syndrome include:

  • Large round face (called a “moon face”)
  • Large amounts of belly fat and fat at the top of your back (often called a “buffalo hump”)
  • Thin skin that bruises easily and heals slowly
  • Purple streaks that look like stretch marks on your chest and belly
  • Getting tired easily
  • Sometimes, extra face and body hair
  • In females, sometimes sudden hair loss from their head

Cushing syndrome can be life-threatening, says Grossman. Very high cortisol will lower your potassium level, which can cause heart problems.

3. What can I expect at a doctor’s appointment for Cushing syndrome?

For patients not taking high levels of steroids, Cushing syndrome is rare, and many symptoms can have other causes. At the same time, the physical changes can be a good indicator of Cushing syndrome, says Grossman.

If you’re experiencing these symptoms, it’s a good idea to see your primary care doctor right away. Bring some photos of yourself from a few years ago so doctors can see how your body may have changed. Doctors will also ask about anything that could increase steroid levels, such as using creams with steroids or inhaled steroids, as well as recreational drug use.

Once a patient is diagnosed with Cushing syndrome, it’s important to see a specialist for further guidance and treatment, says Grossman. Treatment will depend on whether the problem is in the adrenal glands, the pituitary gland, or elsewhere.

4. Is it safe to take steroids?

Steroids can be a game-changing treatment for many patients, but they do have a risk of side effects, says Grossman. They need to be taken as prescribed. Doctors never stop the use of corticosteroids abruptly if people have been taking them for more than two or three weeks. Instead, doctors gradually reduce (or taper) the dose over weeks and sometimes months.

To read more of Grossman’s insights on Cushing syndrome, visit this editorial on MerckManuals.com.

About The Merck Manuals and MSD Manuals

First published in 1899 as a small reference book for physicians and pharmacists, The Merck Manual grew in size and scope to become one of the world’s most widely used comprehensive medical resources for professionals and consumers. As The Manual evolved, it continually expanded the reach and depth of its offerings to reflect the mission of providing the best medical information to a wide cross-section of users, including medical professionals and students, veterinarians and veterinary students, and consumers. In 2015, The Manuals kicked off Global Medical Knowledge 2020, a global initiative with the goal to make the best current medical information accessible by up to three billion professionals and patients around the world by 2020. The Manuals achieved that goal, and today its medical information is available in nearly 250 countries and in 14 languages. It’s continuing its ambitious mission through outreach, education and creating new reliable medical resources. For access to thousands of medical topics with images, videos and a constantly expanding set of resources, visit MerckManuals.com or MSDManuals.com and connect with us on social media: For Consumers in the U.S. and its territories: X (formerly Twitter) and Facebook. For Professionals in the U.S. and its territories: X (formerly Twitter) and Facebook

About Merck

At Merck, known as MSD outside of the United States and Canada, we are unified around our purpose: We use the power of leading-edge science to save and improve lives around the world. For more than 130 years, we have brought hope to humanity through the development of important medicines and vaccines. We aspire to be the premier research-intensive biopharmaceutical company in the world – and today, we are at the forefront of research to deliver innovative health solutions that advance the prevention and treatment of diseases in people and animals. We foster a diverse and inclusive global workforce and operate responsibly every day to enable a safe, sustainable and healthy future for all people and communities. For more information, visit www.merck.com and connect with us on  X (formerly Twitter) , Facebook, Instagram, YouTube and LinkedIn.

Cision View original content to download multimedia: https://www.prnewswire.com/news-releases/merck-manuals-answering-common-questions-about-cushing-syndrome-302422038.html 

SOURCE The Merck Manuals

✍️ TikTok Saved My Life: Student Discovers Life-threatening Tumour After Self-diagnosing Rare Condition

MaryO What do you think? , , , , , , ,

Didn’t we all do this?

A young woman saved her own life after successfully self-diagnosing cancer/Cushing’s that doctors had missed because she researched her own worrying symptoms on TikTok.

Cleo Lambert, from Tring in Hertfordshire, had been unknowingly living with a cancerous tumour growing behind her liver for years.

Her life started to fall apart two-and-a-half years ago when her GP was unable to provide answers to the painful symptoms she was suffering.

However, this all changed when the prospective fashion student undertook a TikTok scrolling session in the summer of 2024 and noticed a post which told her she may have a rare condition called Cushing’s Syndrome.

The 21-year-old undertook a TikTok scrolling session in the summer of 2024 and noticed a post which told her she may have a rare condition called Cushing’s syndrome.

Her findings prompted doctors to order an X-ray, which revealed a 17cm cancerous mass had been growing inside the 21-year-old.

It was surgically removed and she immediately began life-saving chemotherapy.

Due to the size of the growth, medics told her that without the operation that year, she would not have survived.

Cleo’s findings prompted doctors to order an X-ray, which revealed a 17cm cancerous mass had been growing inside her.

“Doctors told me the tumours are ‘usually between 3-4cm, 5cm is more serious.'”, she told the Female Lead.

“They told me that mine had likely been growing for years and there was a chance it could even be cancerous.”

“A doctor also told me I’d probably saved a year of time based on how long a Cushing’s diagnosis could typically take. I think if I’d waited another year, with the size the tumour already was, I’d be dead.”

In the two-and-a-half years prior, Cleo had suffered from painful bouts of bloating after eating and had been putting on weight.

Cleo was seeing her usually thick locks of hair thinning at a rapid rate.

GPs initially told her she had polycystic ovary syndrome, a common hormonal disorder affecting women that was not curable but manageable through lifestyle choices.

But Cleo’s health continued to decline further and new symptoms – such as irregular periods, exhaustion and unexplained bruising – left her unable to leave her own house.

Desperate to find out what was wrong with her, Cleo managed to get a endocrinologist appointment booked in, but had 12 weeks to wait until she saw them.

It was during that period that Cleo undertook some research on the social media platform and found she had Cushing’s Syndrome – a rare condition caused by prolonged exposure to the stress hormone cortisol in the body.

“I saw a video that said: ‘Do you have these symptoms?’ and it listed extra weight around the stomach, a puffy face, exhaustion, hair loss, excessive hair growth in unusual places. I was reading a checklist of my life,” Cleo told the Female Lead.

“In the comments, people mentioned something called Cushing’s syndrome. I Googled it and immediately knew: this was me.”

Cleo ended up going down a “researching rabbit hole” into a “corner of health” she had never heard of before.

Armed with a mountain of research, Cleo went to her appointment in July 2024 and presented her theory, which the doctor agreed with.

Tests showed her cortisol levels were absurdly high, measuring at 1,334 nmol/l on one measure, where the normal level is around 135 nmol/l.

But more shockingly, X-rays revealed that Cleo had a 17cm tumour, the size of an aubergine, pushing up against her stomach and growing into her liver.

Cleo’s symptoms first started appearing after she returned home from travelling around Australia in the summer of 2022.

Despite being a regular gym goer and healthy eater, she was gaining weight easily and seeing her usually thick locks of hair become a lot thinner.

After being told she had PCOS, Cleo started to make changes to her lifestyle to see it it would help.

“I blamed the contraceptive pill and stopped taking it, but nothing changed,” She said.

“The doctors told me I had PCOS which I could manage it with diet and lifestyle changes. I cut out coffee, reduced carbs, stuck to low-impact exercise.”

But Cleo’s symptoms only got worse and things started to spiral in February 2024.

“My periods were irregular, I felt exhausted all the time, and I was getting strange new symptoms,” she said.

“I was getting nosebleeds, unexplained bruising, stretch marks spread across my body, appearing even from stretching after workouts.”

Alarm bells began to sound even louder when Cleo’s freshly inked tattoo left her arm with bruising on it for weeks, something which had never happened before.

She had been hoping to start university that summer, but her rapid health decline had left her not wanting to leave the house.

“The most frustrating part was not having any answers,” she said.

“No one said I looked different except my older sister, and I appreciated her honesty.

“I was desperate for answers. I felt like I was in someone else’s body and I knew there was something wrong, but felt helpless not understanding what it was.”

But thanks to her TikTok diagnosis, Cleo’s chemo treatment finishes this month and she is hopeful of going on holiday this summer and potentially go to university this September, a year later than planned.

As well as being grateful to the helpful content regarding her symptoms, Cleo also praised TikTok for enabling her to connect with other young woman and girls who were suffering from Cushing’s Syndrome.

“TikTok has played another role in my health journey. It helped me connect with a girl who’d been through almost the exact same thing – first misdiagnosed with PCOS, then later discovering she had Cushing’s too.

“Finding people my age going through similar experiences has been incredibly reassuring.

“While the UK’s National Health Service website is helpful, nothing compares to hearing real stories from creators on TikTok who are living it.

“I’d often reach out to them directly with specific questions, and those conversations gave me reassurance that medical information alone couldn’t.

“If you’d told me everything I was about to go through, I would’ve shit myself. But going from diagnosis to operation in two months meant there was no time to overthink, which was a weird kind of blessing.

“So, if you think something is wrong, trust your gut. You know what is normal for you. Keep pushing for answers. And keep scrolling on TikTok.”

For photos see: https://www.lbc.co.uk/news/health/tiktok-saved-my-life-student-life-threatening-tumour/

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

MaryO Five Star, Helpful Doctors , , , , , , , ,

 

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.

ℹ️ Cushing Syndrome and Hormone Disorders

MaryO Basic Info , , , , , , ,

MaryO’Note:  This is really basic information.  Maybe News 9 should have checked with a doctor who has actually been diagnosed with Cushing’s or at least tested for it!

~~~~~~~~~~~~~~~~~~~~~~~

In our Daily Dose, a viewer is asking about hormone problems that can cause your face to become round. Dr.  Lacy Anderson  joined News 9 to explain how some hormone disorders, like Cushing syndrome work.

Cushing’s syndrome is a rare disorder caused by the body making too much cortisol over a long period of time. It can be caused by a tumor of the adrenal gland, which makes cortisol, or it can be caused by a tumor of the pituitary gland, which controls the adrenal gland.

Cushing’s syndrome can cause a rounded face, known as a moon face. It can cause weight gain and fat deposits on the upper back, known as a buffalo hump. It can also cause stretch marks on the abdomen. It can cause high blood pressure, and high blood sugar, and increase the risk of cataracts and osteoporosis. Occasionally, Cushing’s syndrome can be caused by long-term, high-dose steroid use.

For pituitary or adrenal tumors, surgery can cure this condition. I’ve had several patients wanting me to check their cortisol levels recently, so this condition may have hit social media feeds, but I’ve never diagnosed Cushing’s syndrome because it’s so rare. I can usually take one look at my patients and reassure them that they don’t have Cushing’s syndrome.

Stay healthy and take care!

A video is included in the article at https://www.news9.com/story/6658b8f860ad19ad44c6da8f/daily-dose:-cushing-syndrome–hormones-disorders

🦓 Day 30, Cushing’s Awareness Challenge

MaryO Cushing's Awareness Challenge , , , ,

Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…

To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year.  Possibly this has become a tradition.

I am amazed at how well this Challenge went this year, giving that we’re all Cushies who are dealing with so much.   I hope that some folks outside the Cushing’s community read these posts and learned a little more about us and what we go through.

So, tomorrow, I’ll go back to posting the regular Cushing’s stuff on this blog – after all, it does have Cushing’s in its name!

I am trying to get away from always reading, writing, breathing Cushing’s, and trying to celebrate the good things in my life, not just the testing, the surgery, the endless doctors.

If you’re interested, I have other blogs about traveling, friends, fun stuff and trying to live a good life, finally.  Those are listed in the right sidebar of this blog, past the Categories and before the Tags.

Meanwhile…

Time-for-me

Choose wisely…