Cushing’s Disease

Basics: What Causes Abnormal Cortisol Levels?

MaryO Basic Info , , ,

 

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

 

Webinar: Best Practices for the Management of Individuals with Cushing’s Disease

MaryO Interviews, Meetings and Conferences , , ,
First of its kind CME webinar on #CushingsDisease for #endocrinologists and other clinicians treating patients with #Cushings

 

Aug. 2, 2022 / PRZen / HAZLET, N.J. — In this CME Webinar, #endocrinology experts in the management of #CushingsDisease will describe best practices for the diagnosis and treatment to improve long-term outcomes for patients.. 

For more information

SPEAKERS:
Maria Fleseriu, MD
Professor of Medicine and Neurological Surgery
Oregon Health & Science University

Irina Bancos, MD
Associate Professor of Medicine
Mayo Clinic

Voxmedia LLC gratefully acknowledges the educational donation provided by Recordati Rare Diseases, Inc.

This educational activity is intended for #endocrinologists and other clinicians who manage patients with cushing’s disease.

Voxmedia LLC is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.

Voxmedia LLC designates this webinar activity for a maximum of 1.00 AMA PRA Category Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Nurse practitioners may participate in this educational activity and earn a certificate of completion as AANP accepts AMA PRA Category 1 Credits™ through its reciprocity agreements.

The National Commission on Certification of Physician Assistants accepts AMA PRA Category 1 Credits™ from organizations accredited by the ACCME.

For additional CME activities and online cme courses visit CMEPlanet. #endocrinologist #EndocrinePractice #Cushings #Cushing #ThinkCushings #CushingsAwarenessDay #pituitary #TheEndoSociety #ENDO2022

Follow the full story here: https://przen.com/pr/33469903

Read more: https://www.digitaljournal.com/pr/cme-webinar-best-practices-for-the-management-of-individuals-with-cushings-disease#ixzz7bN6UUAQa

🦓 Day 29, Cushing’s Awareness Challenge 2022

MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge 2022 , , , , , , , , , , , , ,

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.

ℹ️ Basics: Cushing’s Syndrome vs Cushing’s Disease

MaryO Cushing's Awareness Challenge , , ,

What is Cushing’s syndrome?

Any condition that causes the adrenal gland to produce excessive cortisol results in the disorder Cushing’s syndrome. Cushing syndrome is characterized by facial and torso obesity, high blood pressure, stretch marks on the belly, weakness, osteoporosis, and facial hair growth in females.

Cushing’s syndrome has many possible causes including tumors within the adrenal gland, adrenal gland stimulating hormone (ACTH) produced from cancer such as lung cancer, and ACTH excessively produced from a pituitary tumors within the brain. ACTH is normally produced by the pituitary gland (located in the center of the brain) to stimulate the adrenal glands’ natural production of cortisol, especially in times of stress.

When a pituitary tumor secretes excessive ACTH, the disorder resulting from this specific form of Cushing’s syndrome is referred to as Cushing’s disease.

As an aside, it should be noted that doctors will sometimes describe certain patients with features identical to Cushing’s syndrome as having ‘Cushingoid’ features. Typically, these features are occurring as side effects of cortisone-related medications, such as prednisone and prednisolone.

🖥 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 died last year.

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.

💉 Helpful Neurosurgeon: Pennsylvania

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

Lehigh Valley, Pa.,
March 03, 2021

Walter Jean, MD, has joined Lehigh Valley Health Network (LVHN) and will serve as Chief of Neurosurgery.

Jean is a board-certified neurosurgeon with expertise in complex intracranial surgery. He is known world-wide for his expertise in complex brain surgery. With nearly 20 years’ experience in both open and endoscopic skull base surgery, Jean has several clinical interests including acoustic neuromas, pituitary adenomas, skull base meningioma, intraventricular tumors, and trigeminal neuralgia. His acclaimed textbook, “Skull Base Surgery: Strategies,” is used by neurosurgeons across the globe to learn about open and endoscopic skull base surgery.

“I’m excited to join LVHN and continue to build on their solid foundation,” Jean says. “I hope to take LVHN Neurosurgery to the next level with robust clinical activity, research and innovation as well as education.”

As a pioneer, Jean utilizes virtual reality in neurosurgery.

“Virtual reality allows everyday people to fly to new lands in video games, augmented reality takes fighter pilots through scenarios training them for the unexpected,” Jean says. “Now brain surgeons and patients can also use these technologies to fly through the brain.”

Why is this so important? Jean says for those who find themselves in need of complex brain surgery, not only can they better visualize their upcoming procedure, their surgeon also gains additional insight. Jean is the only physician in the area using this groundbreaking technology.

“We meet hundreds of patients and explain to them our surgical plan,” Jean says. “That communication can be difficult at times. Once we have a patient’s brain scans loaded into the augmented reality software, they have the ability to see their own anatomy to gain a better understanding. When patients place the headset over their eyes, they are transported to a virtual replica of their own brain.”

The experience offers a visual explanation which is often easier to understand than medical terminology.

Another benefit of this leading-edge technology is that it allows brain surgeons create a surgery plan by simulating different scenarios to find the best approach. “The genesis of the technology is from air fighter pilots. The founders of the company discovered they could use the same technology in the medical field,” Jean says. “Just like fighter pilots, brain surgeons are able to practice unique scenarios to be fully prepared for their mission.”

Jean comes to LVHN from George Washington University Hospital, where he was a professor of neurological surgery. A native of Hong Kong, Jean attended Princeton University, where he graduated summa cum laude, and Cornell University Medical College, where he graduated at the top of his class and was elected Alpha Omega Alpha, a medical honor society. He completed neurosurgical training at the University of Minnesota, and fellowship in Skull Base Surgery at the University of Cincinnati.

Jean’s academic credentials includes being Program Director at Georgetown University for 7 years. He has authored numerous scholarly publications and has an international reputation as an energetic lecturer and passionate teacher of neurosurgery. Jean serves as reviewer for many high-impact journals such as the Journal of Neuro-Oncology, World Neurosurgery, Operative Neurosurgery, and Journal of Neurological Surgery, Part B. He is an active member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons and the North American Skull Base Society and serves frequently as faculty at their national meetings.

📞 Cushing Syndrome and COVID-19

MaryO Interviews, Meetings and Conferences , , , ,

About

Who Should Attend: Individuals with Cushing’s disease and their caregivers.

When: Thursday, March 4, 2021, 6 PM, Eastern

Where: Virtual presentation via Zoom. Click the Zoom link for the online event or call one of the phone numbers below:

833-548-0276 (US Toll-free)
833-548-0282 (US Toll-free)
877-853-5257 (US Toll-free)
888-475-4499 (US Toll-free)

Whether you log on via computer or telephone, you will be asked for the meeting ID and password.

Meeting ID: 969 3392 7432
Passcode: 945590

Attendees will be muted until the end of the presentation, at which time we will take questions.

There is no fee for this event.

Contact Maggie Bobrowitz with any questions: Margaret.Bobrowitz@DignityHealth.org or (888) 726-9370.

💙 Post-Op Pituitary COVID Injection 1

MaryO Uncategorized , , , , , , , , , , , , , , , , , , , , , , , ,

 

Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary.  I had some issues after my first COVID-19 injection (Moderna) but not too bad.  My second injection will be March 15.

January 12, 2021 my Mom’s doctor called and offered her the vaccine but she didn’t want it. She said she didn’t go anywhere.  True but my DH and I do – and she has a friend visit once a month.  I joked to a friend that I could put on a wig and go as her since we have the same first name.

I have been doing the COVID-19 Patient Monitoring System through my doctor’s office since it was first offered.  Just a few boxes of how I’m feeling, if I wore a mask and so on.  I am a strong believer in helping to participate in medical trials, as I mention below.  This one is very easy and takes about a minute out of my day.  Easy-peasy.

I’ve been on the Fairfax Waiting List since January 19, 2021.  As of right now, they are still scheduling people from January 18 – I read somewhere that 41,000-some people registered on the 18th, so it may be a while to get to my date.  They have set up an interesting dashboard to track how things are going  – https://www.fairfaxcounty.gov/health/novel-coronavirus/vaccine/data

I got a link from a friend when CVS opened up clinics in my state – https://www.cvs.com/vaccine/intake/store/covid-screener/covid-qns

I kept the CVS link open and checked it every morning.  Everything was full until Saturday, February 13.  I was able to register at about 5 am.  When I went back about 20 minutes later, everything was gone.

 

CVS sent out an informative email with directions, dates, ics file to easily add to calendar,

On the day of your appointment:

•Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.

•Bring your ID and insurance card, voucher or other coverage

•Don’t forget a face covering—wearing it throughout your visit is required

•When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine

CVS tips for vaccine shots:

•Wearing short sleeves makes getting a shot easier and faster

•If you must wear long sleeves, dress in layers with the short sleeves underneath

• Review the patient fact sheet about the specific vaccine you are receiving

What to do if you feel sick or have COVID-19 symptoms:

•Contact your health care provider immediately

•If your provider recommends it, get tested for COVID-19

• Cancel your appointment

•Don’t come to the pharmacy

•Schedule a new appointment when you’re well

After your vaccine:

•Be prepared to stay for 15 to 30 minutes after the COVID-19 vaccination so you can be observed for side effects.

•If you experience side effects from your COVID-19 vaccine dose, you may find some guidance at Coronavirus: Vaccine, Prevention Tips & FAQs

•The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.

And a short survey, which I took – just add up to 5 stars and write a short paragraph.

Monday, February 15, 2021: When I got to CVS, I found that everything was very well run.

I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.

I was met by someone at door who checked my name – I showed him my phone screen – he showed me where to walk following arrows on floor.  Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).

There were 4 people ahead of me that I could see.  It went very fast.  I was in the little room within less than 10 minutes.

The nurse asked if left arm was ok to use.

She told me to treat the little quarantine form like gold.  Take a picture on my phone, just in case.  Maybe laminate after second shot.  Keep it with passport.

She said that old folks (like me!) didn’t have as many issues after second shot.

The shot was very fast – I never felt it.

The nurse said if I get a headache, take Tylenol only.  I said that was all I could take anyway because I have only one kidney.

I sat in the waiting area for 15 minutes to be sure there were no problems  There were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.

I was glad to see that it was Moderna (MRNA) although I would have taken either.  I have a long-standing issue with the other drug company, unrelated to COVID vaccines.

I posted on FB that I had done my first injection and a friend told me about registering at vsafe.cdc.gov for them to keep track of me after the vaccination.  I signed up for that right away – and I noticed that CVS had also given me that link.

About 12 hours later (3:30 am) I got up to go to the bathroom and noticed that my arm was a little sore. No biggie.

Tuesday, February 16, 2021:  I just got my first dose of Moderna yesterday – sore arm, so far.

The nurse told me yesterday that older people like myself (I’m 72) had fewer side effects since we had been exposed to more things over the years.  I’m not sure how accurate that is but I’ll hold on to that hope until I get my second dose on March 15!

Wednesday, February 17, 2021:  I had weird dreams overnight but I got up about 4:00 am.  I did some work and fell back asleep until 10:15.

We didn’t go to water exercise. I decided at the very last minute, walking out the door. Reaction to Monday shot?  I had a little headache, dizzy, congested, very tired.  I should have taken more cortisone at this time but didn’t remember until 8:30 pm.

I slept more until about 2 pm and had very weird dreams – I don’t know if the dreams are part of it or not but I reported them to the safe.cdc.gov questionnaire.

I cancelled piano lessons for the day.  I wrote to my students:

I am so sorry but I need to cancel today’s lesson.  I had the first COVID vaccination on Monday afternoon.  I was feeling fine yesterday so I assumed that I wasn’t going to have any side effects but they caught up with me today.  It’s just a headache , a bit of congestion and fatigue (I’ve been sleeping all day so far) but I don’t think I would be at my best during XXX’s lesson.

See you next week…

After cancelling lessons, I went back to sleep until time for Pender’s 7 pm Ash Wednesday service.  I was felling cold but I don’t know if it was chills or really a cold.  I started coughing a little.

At night, I remembered I should have up-dosed. I told my DH that night if he ever noticed me like this again, it was the perfect time to tell me to stress dose.  It never occurred to me during the day.

At that point, I realized I hadn’t eaten all day.  I had dinner (I was surprised that I could eat it) at 9:25 and did my growth hormone injection.

I went to bed at 11 p.

Thursday, February 18, 2021: I’m a little more tired than usual but ok.  I spent time napping and working alternated through the day.

Friday, February 19, 2021: Just the normal tiredness.  Hooray!

Info below from https://medshadow.org/covid19-vaccine-side-effects/  I’ve had the bold ones so far after the first injection.

Moderna

Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.

In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.

A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.

Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.

Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.

The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.

A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.

Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.

This page has information about the other brands of vaccine: https://fairfaxcountyemergency.wpcomstaging.com/2021/02/16/what-you-need-to-know-when-you-get-vaccinated-and-after-you-get-vaccinated/

💉 Helpful Doctors: California

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

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.

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

💉 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.

HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki