👎 Doctor VS Insurance

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.

 

⁉️ Cushing’s Myths and Facts:: “Each Person Requires the Same Dose of Steroid in Order to Survive…”

Myth: “Each person requires the same dose of steroid in order to survive with Secondary or Primary Adrenal Insufficiency”

myth-busted

Fact: In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about “getting rid of extra belly fat” by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.

After a Cushing’s patient has surgery, he/she goes from having very high levels of cortisol to no cortisol at all. For pituitary patients, the pituitary, in theory, should start working eventually again and cause the adrenal glands to produce enough cortisol. However, in many cases; the pituitary gland does not resume normal functioning and leaves a person adrenally insufficient. The first year after pit surgery is spent trying to get that hormone to regulate on its own normally again. For a patient who has had a Bilateral Adrenalectomy (BLA), where both adrenal glands are removed as a last resort to “cure” Cushing’s; his/her body will not produce cortisol at all for his/her life. This causes Primary Adrenal Insufficiency.

All Cushing’s patients spend time after surgery adjusting medications and weaning slowly from steroid (cortisol) to get the body to a maintenance dose, which is the dose that a “normal” body produces. This process can be a very long one. Once on maintenance, a patient’s job is not over. He/She has to learn what situations require even more cortisol. You see, cortisol is the stress hormone and also known as the Fight or Flight hormone. Its function is to help a person respond effectively to stress and cortisol helps the body compensate for both physical and emotional stress. So, when faced with a stressor, the body will produce 10X the baseline levels in order to compensate. When a person can not produce adequate amounts of cortisol to compensate, we call that Adrenal Insufficiency. If it gets to the point of an “Adrenal Crisis”, this means that the body can no longer deal and will go into shock unless introduced to extremely high levels of cortisol, usually administered through an emergency shot of steroid.

There are ways to help prevent a crisis, by taking more steroid than the maintenance dose during times of stress. This can be anything from going to a family function (good stress counts too) to fighting an infection or illness. Acute stressors such as getting into a car accident or sometimes even having a really bad fight require more cortisol as well.

It was once believed that everyone responded to every stressor in the exact same way. So, there are general guidelines about how much more cortisol to introduce to the body during certain stressors. For instance, during infection, a patient should take 2-3X the maintenance dose of steroid (cortisol). Also, even the maintenance dose was considered the same for everyone. Now a days, most doctors will say that 20 mg of Hydrocortisone (Steroid/Cortisol) is the appropriate maintenance dose for EVERYONE. Now, we know that neither is necessarily true. Although the required maintenance dose is about the same for everyone; some patients require less and some require more. I have friends who will go into an adrenal crisis if they take LESS than 30 mg of daily steroid. On the other hand, 30 mg may be way too much for some and those folks may even require LESS daily steroid, like 15 mg. Also, I want to stress (no pun intended) that different stressors affect different people differently. For some, for instance, an acute scare may not affect them. However, for others, receiving bad news or being in shock WILL put their bodies into crisis. That person must then figure out how much additional steroid is needed.

Each situation is different and each time may be different. Depending on the stressor, a person may need just a little more cortisol or a lot. Every person must, therefore, learn their own bodies when dealing with Adrenal Insufficiency. This is VERY important! I learned this the hard way. As a Clinical Psychologist; I assumed that my “coping skills” would be enough to prevent a stressor from putting me into crisis. That was FAR from the truth! I have learned that I can not necessarily prevent my body’s physiological response to stress. People often ask me, “BUT you are a psychologist! Shouldn’t you be able to deal with stress?!!!!” What they don’t realize is that my BODY is the one that has to do the job of compensating. Since my body can not produce cortisol at all, my job is to pay close attention to it so that I can take enough steroid to respond to any given situation. We all have to do that. We all have to learn our own bodies. This is vitally important and will save our lives!

To those we have lost in our community to Adrenal Insufficiency after treatment of Cushing’s, Rest in Peace my friends! Your legacies live on forever!

~ By Karen Ternier Thames

🦓 Digging deep: Depression, anxiety and suicide

From Cushie Blogger 

We lost a young woman with Cushing’s to suicide in 2014. There are rumors now that another recent loss was suicide as well. In my mind, regardless of what the exact cause was, Cushing’s is at fault.  Cushing’s led them to their deaths just as surely as if it had struck the death blow itself. If that is hard for you to fathom, then please allow me to educate you briefly on this dastardly, “most morbid of diseases” and why I feel the way I do.

Read more at https://muskegfarm.blogspot.com/2018/04/digging-deep-depression-anxiety-and.html

📞 Take Part in a Cushing’s Clinical Trial!

If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact study.inquiries@rarepatientvoice.com

2. If you are NOT a member, please click here to complete the sign-up process and include all medical conditions to be considered for one or more of the studies below and any other relevant studies.

Cushing’s Syndrome (Hypercortisolism) patients United States
30-minute online survey, compensation is $60

 

Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.How will I be paid?
You will earn $120 (typically) per hour for participating in studies. We pay by check to ensure patients/family caregivers can use their compensation in any way they wish, and now provide the option for patients/family caregivers to sign up for electronic payments.

About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients and family caregivers over $15 million dollars since 2013 for participating in research studies.

Webinar June 16! Compounded Weight Loss Medicines

YOU’RE INVITED! 
GoodHormoneHealth Webinar on compounded Semaglutide/Tirzepatide (brand names Ozempic and Mounjaro) for patients with endocrine problems

Dr. Theodore Friedman (The Wiz) will be giving a webinar on compounded weight loss medicines.

Topics to be discussed include:

  • Who should go on weight-loss medications?
  • Which weight-loss medications are available?
  • What are the side effects?
  • How do they work with diet and exercise?
  • Why is Dr. Friedman recommending compounded medications?
  • How do you work with Dr. Friedman’s office to get the compounded medications?
  • There will be an opportunity for patients to share their experience on Facebook

Sunday • June 16• 6 PM PDT
Via Zoom Click here to join the meeting or
https://us02web.zoom.us/j/4209687343?pwd=amw4UzJLRDhBRXk1cS9ITU02V1pEQT09
passcode 111116
OR
+16699006833,,4209687343#,,,,*111116#
Slides will be available before the webinar and recording after the meeting at slides
OR
Join on Facebook Live – https://www.facebook.com/goodhormonehealth at 6 PM

Virtual Town Hall Meeting on Cushing’s Awareness Day

Please join us for a Virtual Town Hall Meeting on Cushing’s Awareness Day!

Mark your calendars for Monday, April 8, 2024, from 7 – 8 pm EST as we shed light on Cushing’s syndrome with two incredible people who are living with this condition.

Gain valuable insights, hear personal stories, and learn more about Cushing’s syndrome from those who understand it firsthand.

Don’t miss this opportunity to connect, learn and show your support. Register now to secure your spot: https://www.eventbrite.com/…/cushings-awareness-day….

Let’s come together to raise awareness and foster understanding. #CushingsAwareness

Considered the “father of neuroendocrinology,” Roger Guillemin died February 21 at age of 100

Salk Distinguished Professor Emeritus Roger Guillemin, recipient of the 1977 Nobel Prize in Physiology or Medicine and neuroendocrinology pioneer, died on February 21, 2024, in Del Mar, California at the age of 100.

Roger Guillemin
Roger Guillemin
Click here for a high-resolution image.
Credit: Salk Institute

“We are incredibly saddened to learn of Roger’s passing,” says Salk President Gerald Joyce. “He leaves a remarkable legacy at Salk and around the world. His brilliance, commitment, and passion for discovery brought forth some of the last century’s most significant advances in our knowledge of the human brain. He was a cherished colleague and mentor to many. I personally mourn his loss and know I speak for the entire Salk community when I say our world is less bright without him in it.”

Guillemin joined Salk in 1970 to head the newly established Laboratories for Neuroendocrinology. He and his group discovered somatostatin, which regulates the activities of the pituitary gland and the pancreas. Somatostatin is used clinically to treat pituitary tumors. He was among the first people to isolate endorphins, brain molecules that act as natural opiates, and his work with cellular growth factors (FGFs) led to the recognition of multiple physiological functions and developmental mechanisms.

Guillemin played a key role in discovering the brain’s role in regulating hormones, substances that act as chemical messengers between different parts of the body and regulate bodily functions. While scientists had long believed that the brain ultimately controlled the function of hormone-producing endocrine glands, there had been scant evidence to prove exactly how it did so.

After meticulous study of materials harvested from 1.5 million sheep brains, Guillemin and his team made a breakthrough. They discovered releasing hormones, produced in small quantities in the hypothalamus of the brain. These are delivered to the adjacent pituitary gland, which in turn is triggered to release its own hormones that are dispersed through the body. Guillemin and Andrew Schally separately extracted a sufficient amount of one releasing hormone to determine its structure in 1969. They subsequently were able to produce it with chemical methods.

Their work would lead them to the 1977 Nobel Prize in Physiology or Medicine, shared also with Rosalyn Yalow for a separate but related discovery, for “discoveries concerning the peptide hormone production of the brain.”

This breakthrough resulted in the identification of a molecule called TRH (thyrotropin-releasing hormone), which ultimately controls all the functions of the thyroid gland. In the following years, he and his colleagues isolated other molecules from the hypothalamus that control all functions of the pituitary gland—for instance, GnRH (gonadotropin-releasing hormone), a hypothalamic hormone that causes the pituitary to release gonadotropins, which in turn trigger the release of hormones from the testicles or ovaries. This discovery led to advancements in the medical treatment of infertility and is also used to treat prostate cancer.

Guillemin was born in Dijon, the capital of France’s Burgundy region, on January 11, 1924. He entered medical school at the Université de Bourgogne in 1943, receiving his MD from the Faculté de Médecine in Lyon (then under the same academic administration as his university in Dijon) in 1949. Although he enjoyed learning about medicine and would practice it for several years before committing to research full-time, much of Guillemin’s youth and college experience was wrought with challenges—not the least of which was the German occupation of France. “Dark years of no fun these were,” he wrote.

Earning his Doctor in Medicine required the composition and defense of a dissertation, something that Guillemin looked forward to doing. “I had always been interested in endocrinology,” said Guillemin. “[An MD thesis] was usually pro forma. I decided, however, to write a dissertation… that I would enjoy, hopefully on some work I could perform in a laboratory.” A challenge to his desire to conduct research was a dearth of lab access. “There was no laboratory facility of any sort in Dijon, except for gross anatomy.”

In a fortuitous turn of events, Hans Selye was lecturing in Paris. Selye was a fellow pioneer of endocrinology, and an eager Guillemin made the journey to hear him speak. “A few months later,” Guillemin said, “I was in Selye’s newly created Institute of Experimental Medicine and Surgery at the Université de Montréal.” Guillemin would go on to earn his PhD in physiology, with a special focus on experimental endocrinology, from the university in 1953.

Shortly after completing his PhD, Guillemin became an assistant professor of physiology at the University of Baylor College of Medicine. Once there, he began to pursue the identity of the chemical mediators of hypothalamic origin, which were primary suspects for controlling pituitary function in the brain.

Guillemin was a mentor to many future leaders in endocrinology and medical research while at Baylor, including Catherine and Jean Rivier and Wylie Vale, who would all follow Guillemin to Salk in 1970 and themselves become professors there.

In addition to the 1977 Nobel Prize, Guillemin was the recipient of numerous accolades for his work. These included the Gairdner International Award, the Dickson Prize, the Passano Award, the Lasker Award, and the President’s National Medal of Science, presented to him by then-President Jimmy Carter. He was also an elected member of the National Academy of Sciences (1974) and the American Academy of Arts and Sciences (1976). Guillemin’s native France recognized his contributions to science and health by naming him a Commander in the Legion of Honour, the country’s highest order of merit. He served as the Salk Institutes’s interim president from October 2007 to February 2009.

For all of his accomplishments, Guillemin was always quick to point out the contributions of the many people who worked alongside him. “I have had the extraordinary privilege to work with wonderful collaborators, some so much more knowledgeable in their own field than I was (or still am), all full of enthusiasm and sharing the common ethics of science,” he wrote as he reflected on achieving the Nobel Prize.

When asked in a September 2017 interview with the La Jolla Light what his philosophy in life was, Guillemin responded, “Help people. I really wanted to be a physician… [and] I knew all my efforts would be to help people.”

Up until his last few years of life, Guillemin was an active member of the La Jolla, California community and was an avid collector of French and American paintings and sculptures, as well as Papuan and pre-Columbian pottery.

Guillemin is survived by his five daughters, one son, four grandchildren, and two great-grandchildren. He was pre-deceased by his wife, Lucienne, a talented musician, who died at the age of 100 in 2021, after the couple was married for 69 years. Guillemin died on her birthday.

From https://www.salk.edu/news-release/salk-institute-mourns-the-loss-of-nobel-laureate-roger-guillemin-distinguished-professor-emeritus/

Study of SPI-62 in subjects with ACTH-dependent Cushing’s syndrome caused by a non-adrenal tumor

This is a randomized, placebo-controlled, study of SPI-62 in subjects with ACTH-dependent Cushing’s syndrome caused by a non-adrenal tumor.

Subjects will receive each of the following 2 treatments for 24 weeks: SPI-62 and matching placebo with the option of long-term extension.

Apply for this study at https://www.cancer.gov/research/participate/clinical-trials-search/v?id=NCI-2023-02543

 

Webinar: Webinar: Dr. Theodore Friedman (The Wiz) will giving a webinar on Updates on Treating Hypothyroidism

 


YOU’RE INVITED!  A4M/Metabolic Medical Institute (MMI) Webinar on Updates on Treating Hypothyroidism

Dr. Theodore Friedman (The Wiz) will giving a webinar on Updates on Treating Hypothyroidism

Topics to be discussed include:

  • New articles showing patients prefer desiccated thyroid
  • Moving away from a TSH-centered approach
  • New thyroid hormone preparations, including Adthyza
  • •Does biotin affect thyroid tests?
    •Hypothyroidism diet?
  • What is the difference between desiccated thyroid and synthetic thyroid hormones?
  • Is rT3 important?

Wednesday • August 2, 2023  • 4 PM PDT

register at https://us02web.zoom.us/webinar/register/WN_kRyqZFlrSgKj54CuK7OQqQ
Slides will be available on the day of the talk here.
There will be plenty of time for questions using the chat button.
For more information, email us at mail@goodhormonehealth.com

❣️ Happy 23rd Birthday Cushing’s Help!

 

It’s unbelievable but the idea for Cushing’s Help and Support arrived 23 years ago late last night. I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

Thanks to a now-defunct Microsoft program called FrontPage, the first one-page “website” (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000.

All our Cushing’s-related sites: