Month: July 2025

Basics: What is Cushing’s disease?

MaryO Cushing's Awareness Challenge ,

MaryO’Note:  I found this article very simplistic.  What do you think?

This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle.

Imagine the heart-pounding rush of adrenaline you’d get while bungee jumping or zip lining — that’s what Angela Yawn felt all the time before receiving her diagnosis.

In a span of six years, the 49-year-old gained 52 kg (115 lbs) and suffered from joint swelling, headaches, skin redness and a racing heart.

“I would put my hand on my chest because it made me feel like that’s what I needed to do to hold my heart in,” Yawn, who lives in Griffin, U.S., told Today. “I noticed it during the day, but at night when I was trying to lie down and sleep, it was worse because I could do nothing but hear it beat, feel it thump.”

Yawn recalled being the most frustrated with the weight gain, as she’d put on 1 kg (2 lbs) a day while only eating 600 calories. “I was going crazy,” she said.

After dozens of doctors couldn’t piece together her seemingly unrelated symptoms, Yawn sought out the help of an endocrinologist in February 2021.

Blood tests and an MRI confirmed that Yawn had a tumour in her pituitary gland — a small, pea-sized organ at the base of the brain — that caused the gland to release excess adrenocorticotropic hormones. As a result, she became inundated with cortisol, a steroid the body  releases  in response to danger or stress. This combination of factors led to her diagnosis — Cushing’s disease.

Read on to learn more about Cushing’s disease, signs and symptoms as well as how it can be prevented.

What is Cushing’s disease?

“Cushing’s disease is a rare but serious condition that is caused by a pituitary tumour,” a specialist from the University of California, Los Angeles (UCLA) pituitary team tells Yahoo Canada. “The gland releases excessive adrenocorticotropic hormones and cortisol into the blood over a long period of time. It’s a hormonal disorder that is sometimes called hypercortisolism, and you will need to see an endocrinologist or someone who specializes in hormonal-related diseases to confirm your diagnosis and to help you receive proper care.”

Cushing’s disease is not the same as Cushing’s syndrome, which refers to elevated levels of cortisol in the blood and is much more common than Cushing’s disease. Unlike the disease, Cushing’s syndrome can be  caused  by taking medications that have cortisol such as prednisone, asthma inhalers and joint steroid injections.

Who is at risk for Cushing’s disease?

Cushing’s disease is incredibly rare, resulting in only 10 to 15 new cases per million people in the United States each year, according to UCLA Health.

“It’s most commonly found in people between the ages of 20 and 50, and affects about three times more women than men,” the UCLA source, who asked not to be named, says. “However, you might be more at risk if you have high blood pressure, if you’re overweight or if you have type 2 diabetes.”

What are the signs and symptoms of Cushing’s disease?

Although each person may have a unique combination of symptoms, patients typically experience changes to their physical appearance, according to Mayo Clinic.

“It’s very common to see rapid weight gain, red cheeks and bruising of the skin,” the UCLA source says. “I’ve also seen patients with generalized fatigue, depression, high blood pressure, a rapid heartbeat and loss of vision.”

“The symptoms can seem random or unrelated, which is why it can be so hard to diagnose,” they add.

To establish if you have the disease, your doctor will conduct a physical exam and ask you about your symptoms and medical history. Generally, the first step in diagnosing Cushing’s disease is determining the state of excess cortisol in the blood. Afterwards, an MRI will determine if a pituitary tumour is visible.

If you have symptoms of Cushing’s disease, you should make an appointment to see a doctor or endocrinologist.

How is Cushing’s disease treated?

In the last decade, treatment options have changed thanks to several breakthroughs in pituitary science.

“Surgery to remove the tumour is normally the first treatment option. It’s minimally invasive, has a fairly high success rate and it’s the only long-term cure for Cushing’s disease at the moment,” explains the UCLA source.

If surgery isn’t an option or doesn’t solve the problem, medication and radiation therapy are other ways to treat the disease.

“No matter the stage of the disease at the time of diagnosis, treating it requires an experienced specialist or team of doctors familiar with pituitary tumours,” the UCLA source adds.

How can I prevent Cushing’s disease?

“There’s no tried and true method of preventing the condition,” the source explains. “But if you’re at risk or if you think you have the disease, I always recommend having a doctor monitor your cortisol levels on a regular basis.”

The UCLA source also recommends implementing healthy  lifestyle  changes that can help prevent high blood pressure. Examples include reducing stress, getting adequate sleep, exercising regularly and eating a healthy  diet  that’s rich in fruits, vegetables and whole grains.

Adapted from https://ca.news.yahoo.com/what-is-cushings-disease-experts-warn-rare-serious-condition-120015725.html

Cushing’s Syndrome Study for Patients and Caregivers

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We have an opportunity for you to take part in a Cushing’s Syndrome Study for patients and caregivers. Our project number for this study is SJO_11379.

Project Details:

  • Web-assisted telephone interview (you must be by a computer with high-speed internet access while on the phone during the time of the interview) – WEBCAM REQUIRED
  • Interview is 60-minutes long, plus optional 30-40 minute homework assignment
  • up to 195 Dollar Reward (120 Dollar Reward for Interview, 75 Dollar Reward for completion of optional homework assignment)

Things to Note:

  • Provide detailed and thoughtful responses. Rushed responses may be rejected by the client.
  • Using AI may be flagged, and your reward forfeited.
  • Using a VPN may cause you to disqualify from the study
  • Study is open to patients and caregivers
  • Please do not share study links
  • Please use a laptop/computer ONLY. No smartphones or tablets – Preliminary questions are mobile friendly!
  • Save this email to reference if you have any questions about the study!
  • If you have any problems, email jennifer.harscheid@rarepatientvoice.com and reference the project number.  

If you are interested in this study, please click the link below to answer a few questions to see if you qualify.

Study link: Start Here

OR if the study hyperlink is not clickable above, please copy/paste this URL below.
https://panel.rarepatientvoice.com/newdesign/site/rarepatientvoice/surveystart.php?surveyID=b9bk3vluq338&panelMemberID=trfnbc7mvduh1gseff1h&invite=email

Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission.

⁉️ Myth: “All Cushing’s patients have the exact same symptoms

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Myth: “All Cushing’s patients have the exact same symptoms and the level of illness is the same for everyone. If you do not have ALL of the classic symptoms of Cushing’s, then you must NOT have Cushing’s Syndrome/Disease!”

myth-busted

Fact: Everyone does NOT have the exact same symptoms. Not all Cushing’s patients are exactly the same. This is one mistake that non experts tend to make in terms of categorizing patients by whether they meet the exact same classic symptoms or not. Experts have come to learn that each patient should be treated individually. Though there are symptoms that are more prominent in the Cushing’s population, not every patient has to meet every single symptom in order to meet criteria for Cushing’s.

For instance, not all Cushing’s patients become overweight. Everyone does not gain the same amount of weight. There are various theories as to why. One issue is that different patients are diagnosed at different stages of the illness. We know that patients tend not to be diagnosed at the onset of the illness because of doctors’ misconception that Cushing’s patients must be extremely obese to have the disease. So, patients who have not gained as much weight may not be listened to until after the weight has gotten out of control. However, there ARE patients who are diagnosed early enough where there has not been a tremendous amount of weight gain.

I (Karen Ternier Thames), for one, started trying to get help after gaining my first 30 pounds because I KNEW that something was wrong with my body. Had I received an appropriate diagnosis, I probably would not have gained the 150 pounds I ended up gaining in 5 years.

Regardless of the reason, it is a myth that all Cushing’s patients gain the same amount of weight. The following are other additional reasons that an endocrinologist gave me for supposedly not meeting the criteria for Cushing’s when I was misdiagnosed: “1. Your stretch marks are not purple enough”, 2. “Your buffalo hump is not large enough”, 3. “You are not THAT fat!”, 4. “Cushing’s patients do NOT have children”, and 5. ” your face does not look like a classic moon face”. These are some of the reasons why, 2 years earlier, this same doctor dismissed apparently high cortisol levels, and didn’t even tell me, leading to several more years of suffering!

So, not all Cushing’s patients are obese, not all Cushing’s patients gain the same weight at the same rate, not all Cushing’s patients have the same size buffalo hump or the same round moon face. There are variations in these symptoms. IF you are experiencing extreme changes in your body regardless of diet and exercise and its not influenced by external factors, then it is time to speak up!

It is important to raise concern with your doctor if you do have ANY Cushing’s symptoms. Please do not be inhibited if you do not show every single symptom!

💉 Helpful Doctors: Ohio

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

 

Many people on the message boards see Dr. Kirschner.  Here’s a short adrenal video:

 

 

When it comes to adrenal cancer care, expertise is critical. The James at Ohio State expert Dr. Lawrence Kirschner explains what you should look for and why.

The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute is located at 460 W. 10th Ave. on the Ohio State campus. (43210). To learn more about the OSUCCC – James visit: https://cancer.osu.edu/

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⁉️ Can You Help With a Guest Question?

MaryO Can You Help?, What do you think? , , ,

A guest on the message boards asks:

Is it possible to have cushing disease without high blood pressure? they are experiencing a lot of the other symptoms kidney stones, headache, fatigue, joint pain, stretch marks on back, abdomen, arms, breasts, hair loss, obesity in stomach area, potbelly, thin legs, memory issues, thinning of skin, irregular periods, oily skin, acne, puffy face etc.

Please respond here or on the message boards at http://cushings.invisionzone.com/topic/54396-i-have-a-strange-question-may-even-be-a-dumb-question

Thanks for your help!

⁉️ Cushing’s Myths and Facts

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

 

Dr. Karen Thames shared these on her Facebook Page, Empowering People with Invisible Chronic Illness – The EPIC Foundation

She has graciously given me permission to share them here and on the Cushing’s Help message boards.

Find these pages here, under the Cushing’s Myths and Facts category.

Thanks, Karen!

Basics: Meds – Korlym

MaryO Basic Info , , , ,

cushings-basics.png

Cushing’s disease is a progressive pituitary disorder in which there is an excess of cortisol in the body. While the disease can be treated surgically, this option is not possible for all patients. This is one of the approved medications that assist in controlling cortisol levels in people with Cushing’s disease.

 Korlym  (mifepristone), developed and marketed by  Corcept Therapeutics , is an FDA-approved treatment for high blood sugar (hyperglycemia) in adults with Cushing’s syndrome who have type 2 diabetes or glucose intolerance, and for whom surgery is not an option, or failed to control their symptoms.

Bios of Cushies who have taken Korlym.

Korlym discussions on the Message Boards.

Learn more here and here​​​​​​​.

How does Korlym work?

Cushing’s syndrome is characterized by high levels of cortisol in the body. Cortisol is a hormone that helps control a wide range of bodily functions, including blood pressure, salt levels, and blood sugar (glucose) levels. Too much cortisol may cause blood sugar levels to rise — a hallmark of both type 2 diabetes and glucose intolerance.

Cortisol exerts its effects by binding to glucocorticoid receptors on the surface of cells. Korlym works by blocking cortisol’s access to these receptors, thereby preventing the chain of events leading to elevated blood sugar levels and diabetes.

The medication is specifically meant to treat patients with endogenous Cushing’s syndrome, in which the body’s own overproduction of cortisol — usually due to the presence of a tumor — is the reason why hormone levels rise above healthy limits.

Korlym in clinical trials

Corcept conducted a Phase 3 trial (NCT00569582) to evaluate the safety and efficacy of mifepristone in 50 adults with endogenous Cushing’s syndrome and type 2 diabetes or impaired glucose tolerance, or high blood pressure alone.

In the group with diabetes, 60% of participants showed a clinically meaningful improvement in glucose control in a two-hour oral glucose test. In the high blood pressure group, an improvement in diastolic blood pressure — the pressure in the arteries while the heart rests between beats — was seen in 38% of participants.

In addition, an overall clinical improvement was seen in 87% of participants, as assessed by an independent review board. Board members looked at a range of symptoms, including body weight and composition, Cushing-like appearance, and psychological symptoms.

Common adverse events reported in the study included fatigue, nausea, headache, low potassium, joint pain, vomiting, and swelling, called edema. Thickening of the lining of the uterus was reported among female participants.

A pilot Phase 4 trial (NCT01990560) also demonstrated that mifepristone may be helpful in managing mild autonomous cortisol secretion (ACS), a subclinical form of Cushing’s syndrome in which patients do not display typical signs and symptoms of Cushing’s, despite having high cortisol levels.

That pilot trial enrolled eight patients who received 300 mg tablets once daily for six months. In two patients, this dose was upped to 600 mg after two months due to a lack of clinical response.

Treatment led to significant reductions in fasting glucose levels and insulin resistance — when certain cells no longer respond well to insulin, a hormone that controls how cells store and use glucose.

Another study also indicated that mifepristone can effectively treat patients with ectopic Cushing’s syndrome. This is a form of Cushing’s caused by tumors found outside the brain’s pituitary gland, in which case the condition is known as Cushing’s disease.

Other details

Korlym’s blood absorption is higher when the medication is given with food. Patients should, therefore, take the medication within one hour of having a meal, so as to increase its effectiveness.

Importantly, eating grapefruit or drinking grapefruit juice should be avoided while taking the medication, since both may interfere with its absorption. Korlym also may interact with a variety of other prescription meds, including cholesterol-lowering medicines simvastatin and lovastatin, the immunosuppressant cyclosporine, headache treatments ergotamine and dihydroergotamine, and opioid fentanyl.

The antifungal treatment ketoconazole (sold under the brand name Nizoral, among others), used off-label to treat Cushing’s in the U.S., also can change the way Korlym is absorbed in the body. Since both medications can be prescribed simultaneously to Cushing’s patients, doctors should carefully evaluate their benefits, taking into account the potential risks.

Additionally, mifepristone — Korlym’s active ingredient — blocks the action of the hormone progesterone, which is important for maintaining pregnancy. Taking Korlym during pregnancy will result in pregnancy loss. Therefore, Korlym should never be taken by women who are pregnant or by those who may become pregnant.

Treatment with Korlym also may cause blood potassium levels to drop, a condition known as hypokalemia. Potassium is a mineral that helps the body regulate fluid balance, nerve signals, and muscle contraction. As such, patients’ potassium levels should be monitored closely in the first weeks after starting or increasing Korlym’s dose, as well as periodically thereafter.

Basics: Meds – Isturisa

MaryO Basic Info , , , , ,

Cushing’s disease is a progressive pituitary disorder in which there is an excess of cortisol in the body. While the disease can be treated surgically, this option is not possible for all patients. This is one of the approved medications that assist in controlling cortisol levels in people with Cushing’s disease.

sturisa was approved in 2020 to treat adults with Cushing’s disease for whom pituitary surgery is ineffective or not an option. The oral medication works by inhibiting an enzyme called 11-beta-hydroxylase, which is involved in cortisol production.

Isturisa, also known as osilodrostat or LCI699, is an approved treatment originally developed by Novartis, but now acquired by Recordati to treat people with Cushing’s disease, a condition in which a pituitary tumor causes the body to produce excessive levels of the stress hormone cortisol.

In 2020, the U.S. Food and Drug Administration (FDA) approved Isturisa to treat adults with Cushing’s disease for whom pituitary surgery was not an option, or ineffective.

Earlier that same year, the European Commission (EC) approved Isturisa to treat people with endogenous Cushing’s syndrome. The medication also was approved for the same indication in Japan in 2021.

How does Isturisa work?

Isturisa is an oral medicine that inhibits an enzyme called 11-beta-hydroxylase, which is involved in cortisol production. Blocking the activity of this enzyme prevents excessive cortisol production, normalizing the levels of the hormone in the body and easing the symptoms of Cushing’s disease.

Isturisa in clinical trials

A Phase 2 clinical trial (NCT01331239) investigated the safety and efficacy of Isturisa as a Cushing’s disease treatment. The trial that concluded in October 2019 initially was named LINC-1, but, through a study protocol amendment, patients who completed the study could continue into a second phase called LINC-2.

The company published findings that covered both patient groups in the journal Pituitary. Data showed that Isturisa reduced cortisol levels in the urine of all patients by week 22. Urine cortisol levels reached and remained within a normal range in 79% of the patients by then. Common adverse effects included nausea, diarrhea, lack of energy, and adrenal insufficiency — a condition in which the adrenal glands are unable to produce enough hormones.

A Phase 3 clinical trial (NCT02180217) called LINC-3 also assessed the safety and efficacy of Isturisa in 137 patients with Cushing’s disease (77% female, median age 40 years). Participants were given Isturisa for 26 weeks, with efficacy-based dose adjustments during the first 12 weeks.

Then, the 71 participants with a complete response (those whose urine cortisol levels were within normal limits) at week 26 and who did not require a dose increase after week 12, were assigned randomly to either continue treatment with Isturisa or switch to a placebo.

After this 34-week period, 86% of Isturisa-treated patients had normal urinary cortisol levels, as compared to 29% of participants given placebo. All participants then were given Isturisa for an additional 12 weeks. At the end of the 48-week study, 66% of participants had normal urine cortisol levels.

Results from LINC-3 formed the basis for regulatory approvals of Isturisa. Common adverse side effects in the trial included nausea, headache, fatigue, and adrenal insufficiency.

A multi-center, randomized, double-blind, placebo-controlled Phase 3 trial (NCT02697734) called LINC-4 further confirmed the safety and efficacy of Isturisa as a Cushing’s disease therapy. During the trial, patients received Isturisa or a placebo through a 12-week period followed by treatment with Isturisa until week 48.

Top-line results showed that 77% of patients on Isturisa experienced a complete response after the 12-week randomized period, as compared to 8% of those on placebo. No new safety data were noted.

A roll-over, worldwide Phase 2 study (NCT03606408) is recruiting patients who have successfully completed any of the previous clinical trials. Patients can continue to take the dosage they received during the initial trial. The aim of this study is to assess the long-term effects of Isturisa for up to five years.

🎬 Video: Pituitary tumors: Mayo Clinic Radio

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This interview originally aired July 6, 2019.  Dr. William Young Jr., a Mayo Clinic endocrinologist, discussed pituitary gland tumors.

The pituitary gland is a hormone-producing gland at the base of the brain. Sometimes known as the “master gland,” the pituitary gland produces and regulates hormones that help the body function. Pituitary tumors are abnormal growths that develop in your pituitary gland.

Some pituitary tumors result in too many of the hormones that regulate important functions of your body. Some pituitary tumors can cause your pituitary gland to produce lower levels of hormones. Most pituitary tumors are noncancerous (benign) growths that remain in your pituitary gland or surrounding tissues, and don’t spread to other parts of your body. There are various options for treating pituitary tumors, including removing the tumor, controlling its growth and managing your hormone levels with medications. Your health care provider also may recommend a wait-and-see approach.

ℹ️ Basics: Cushing’s Syndrome Overview

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Cushing’s syndrome is a rare disorder that occurs when the body is exposed to too much cortisol. Cortisol is produced by the body and is also used in corticosteroid drugs. Cushing’s syndrome can occur either because cortisol is being overproduced by the body or from the use of drugs that contain cortisol (like  prednisone ).

Cortisol is the body’s main stress hormone. Cortisol is secreted by the adrenal glands in response to the secretion of adrenocorticotropic hormone (ACTH) by the pituitary. One form of Cushing’s syndrome may be caused by an oversecretion of ACTH by the pituitary leading to an excess of cortisol.

Cortisol has several functions, including the regulation of inflammation and controlling how the body uses carbohydrates, fats, and proteins. Corticosteroids such as prednisone, which are often used to treat inflammatory conditions, mimic the effects of cortisol.

Stay tuned for more basic info…