Cushing’s Syndrome

✍️ Day 22: 40 Days of Thankfulness

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

 

Today is the 38th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 38 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

In 2017 I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I’m not looking forward to telling my endo!

I finally got both knees replaced.  The left in 2023, the right on February 3 of this year

I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!

My mom has moved in with us, bring some challenges…

In early May of this year I got a cortisone injection in my right thumb.  Hopefully, this won’t turn into anything.

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died in the last year.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

Helpful Doctors: Dr. Ricardo Correa

MaryO Helpful Doctors, Ohio , , , , , , , ,

Ricardo Correa, MD, MEd, has been recognized as a 2023 Castle Connolly Top Doctor — the first time he has received the prestigious Top Doctor honor.

CLEVELAND, OH, October 19, 2023 /24-7PressRelease/ — Ricardo Correa, MD, MEd, has been recognized as a 2023 Castle Connolly Top Doctor — the first time he has received the prestigious Top Doctor honor. Only about 7 percent of the nation’s licensed physicians are selected annually as Castle Connolly Top Doctors in their regions for their specialties.

Dr. Correa is an endocrinologist, Endocrinology Fellowship program director, and Health Equity and Inclusive director with the Cleveland Clinic Endocrinology & Metabolism Institute.

He has special expertise in transgender medicine; neuroendocrinology; and caring for adults with adrenal disorders, such as Cushing’s syndrome, Addison’s disease, primary hyperaldosteronism, neuroendocrine tumors, and rare endocrine conditions.

Dr. Correa is certified by the American Board of Internal Medicine, with subspecialty certification in endocrinology, diabetes, and metabolism as well as nutrition. In addition, he is board certified in medical quality.

Dr. Correa is a Fellow of the American College of Physicians, the American Association of Clinical Endocrinology, the Academy for Physicians in Clinical Research, and the American College of Medical Quality.

In addition to his clinical activities, Dr. Correa serves as a clinical professor of medicine, director for longitudinal didactics, and director for mentoring and belonging — among many other roles — for the Lerner College of Medicine and the School of Medicine at Case Western Reserve University. He’s also a volunteer researcher at the Phoenix VA Medical Center and director of the Health Equity Fellowship at Creighton School of Medicine in Phoenix.

He leads Cleveland Clinic’s Endocrine Health Equity Initiatives and focuses on decreasing disparities among underrepresented minorities with diabetes, obesity, and rare endocrine conditions and health care.

Dr. Correa is a major and battalion surgeon with the U.S. Army Physician Reserve, 492nd CA Battalion.

Dr. Correa is involved in many local and national organizations and efforts related to caring for underserved communities and gender-diverse communities and promoting diversity, equity, and inclusion and volunteerism.

He speaks Spanish and English.

Dr. Correa earned his medical degree at the Universidad De Panama Faculty of Medicine in Panama City. He completed a three-year internal medicine residency at Miami’s Jackson Memorial Hospital, followed by a three-year fellowship in endocrinology, metabolism, and diabetes at the National Institutes of Health, where he focused on neuroendocrine disorders. He further trained with a one-year nutrition fellowship. He has completed multiple leadership fellowships including the Presidential Leadership Scholar Fellowship, NHMA Leadership Fellowship, and Climate Change and Health Equity Fellowship, among others.

He also holds a master’s degree (EdD) in education from the Universidad De Panama. He has published more than 100 articles in highly quality peer-reviewed journals and he is very involved in research with several grants and awards that he has earned.

Dr. Correa maintains active profiles on Instagram, Facebook, X (Twitter), and LinkedIn – offering valuable insights and updates to his professional network.

Top Doctors are nominated by peer physicians and selected by the physician-led Castle Connolly research team.

About Castle Connolly
Castle Connolly publishes its Top Doctors list at castleconnolly.com and in a variety of print and online partner publications. Nominations are open to all board-certified MDs, DOs, and DPMs. The Castle Connolly team chooses honorees based on nominee criteria that includes their medical education, training, hospital appointments, and disciplinary histories.

Doctors do not and cannot pay to be selected as a Castle Connolly Top Doctor.

❓Guest Question: Sudden Hearing Loss

MaryO Can You Help? , , , , , ,

 

If you can help, please respond here or on the Message Boards.  Thanks!

I  have many symptoms of cushings,  I have used cloatasol propionate for about 5 years for my chronic eczema I was on oral steroids in July then high dose steroids again in September. thejuly in July it was for a severe eczema breakout and in September it was for sudden hearing loss.  Now I need a hearing aid.  I seen one place after googling that connects cushings with sudden hearing loss.  Has anyone dealt with this?

 

Cushing’s Syndrome Study for Patients and Caregivers

MaryO Interviews, Meetings and Conferences , , ,

 

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.

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

MaryO Basic Info , , ,

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.

❓Guest Question: Rife Machine

MaryO Can You Help? , , ,

This question came up on the message boards today: Anyone ever used a Rife Machine on Cushings syndrome?

My response:

I don’t think so – this is the first I have heard of a Rife Machine so I looked it up and found this info:

Quote

American scientist Royal Raymond Rife invented the Rife machine. It produces an energy similar to radio waves.

Rife’s machine built on the work of Dr. Albert Abrams. Abrams believed every disease has its own electromagnetic frequency. He suggested doctors could kill diseased or cancerous cells by sending an electrical impulse identical to the cell’s unique electromagnetic frequency. This theory is sometimes called radionics.

Rife machines are Rife’s version of the machines used by Abrams. Some people claim they can help cure cancer and treat other conditions like Lyme disease and AIDS.

From https://www.healthline.com/health/rife-machine-cancer#claims

 

Anyone else?  Have you heard of this for Cushing’s?

Frantbri, are you going to try it?  If so, please keep us posted!

It would be great if something like this worked.

 

⁉️ Would *YOU* Do This?

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

I remember someone on the House TV series trying a stunt like this on the episode titled Deception.

At a betting parlor where House happens to be, a woman collapses and House makes sure she gets to the hospital. He thinks she has Cushing’s syndrome while Cameron starts to think she has Münchausen syndrome, a syndrome at which the patient creates the symptoms of a disease, guaranteeing them attention and sympathy.

Rare Case of Woman Manipulating Saliva Tests to Support Cushing’s Diagnosis

Late-night measures of cortisol levels in saliva may not be all that helpful in diagnosing Cushing’s syndrome, a group of physicians discovered upon learning that a difficult to diagnose patient had manipulated the samples.

Although this behavior is extremely rare, the research team from the University of Calgary in Canada, argued that — when a diagnosis becomes difficult — it may be advisable to confirm suspicions using another and more reliable method that can distinguish natural from synthetic glucocorticoids.

The study, “Factitious ACTH- dependent, apparent hypercortisolism: the problem with late night salivary cortisol measurements collected at home,” was published in the journal Clinical Endocrinology.

The case report described a woman who was admitted to a specialist clinic after two endocrinologists had failed to diagnose what they suspected was cyclic Cushing’s syndrome.

The woman had complained of fatigue and weight gain over the past four years despite weight loss banding surgery, and declined taking steroid medications. The examination did not reveal particular Cushing’s symptoms.

Physicians started an investigation, including overnight dexamethasone suppression tests and late-night salivary cortisol tests, which indicate increased levels of cortisol likely caused by abnormal functioning of the ACTH hormone.

Imaging did not show any suspected lesions in the pituitary and adrenal gland, and all further examinations did not reveal any disease changes that might have contributed to the increased cortisol.

The woman was put on a dopamine agonist. This treatment triggered a loss of eight kilograms (almost 18 lbs) over six months, and the woman said she was satisfied with it. But two late-night cortisol measurement showed continuing high cortisol levels.

When the clinic started using a new type of analysis to measure cortisol, however, findings changed. The new test, which was more sensitive, indicated massively higher doses of cortisol in re-analyzed saliva samples compared to the older results.

The new test could detect synthetic glucosteroids, but could not indicate if synthetic steroids were responsible for the higher levels seen in the retest. So the team used a method called liquid chromatography-tandem mass spectrometry. This technique can identify specific molecules, and revealed that the women had manipulated the samples using prednisone.

The woman’s physician also paid a surprise visit to collect a new saliva sample, which turned out to have normal cortisol levels.

The woman neither denied or confirmed manipulating the samples. And the team was contacted two months later by her new physician, requesting confirmation of her Cushing’s syndrome and details on her case.

The researchers believed the woman most likely has what is known as Munchausen’s syndrome, a mental illness that leads patients to feign physical disease. A 1995 report by the National Institutes of Health showed that 0.7 percent of all people investigated for too high cortisol had this syndrome.

Despite the rarity of this case, the team argued that chemical analysis is a valuable tool for both determining sample manipulation in difficult Cushing’s syndrome cases, or a different potential problem.

They also cautioned against putting too much trust in very elevated late-night cortisol, particularly when the symptoms do not match the cortisol increase.

From https://cushingsdiseasenews.com/2017/10/05/rare-case-of-woman-manipulating-late-night-saliva-cortisol-tests-to-get-cushings-diagnosis/

❓Guest Question: Is Itching Common with Cushing’s Syndrome?

MaryO Can You Help? , , , , ,

Is itching common with Cushing’s Syndrome?  Is it common to feel somewhat good for a day and then have itching, high blood pressure, nausea, flushed red face?

 

Please either respond here or in the comments below.

🎬 Video: Cushing’s Syndrome – Story of a Patient

MaryO Uncategorized , , ,

Cushing’s syndrome is a rare disease which affects 65 patients in one million inhabitants of the EU. Cushing’s syndrome is a state where the body is chronically exposed to a high concentration of cortisol.

The signs of the disease are often overlooked. It took 14 years to diagnose Ida with the disease and to start treating it successfully. On Cushing’s Awareness Day, Ida emphasizes the importance of communication between the patient and the doctor.

Clinical Trial: SPI-62 as a Treatment for Adrenocorticotropic Hormone-dependent Cushing’s Syndrome (RESCUE)

MaryO Cushing's Awareness Challenge , , , ,
Brief Summary:
This is a randomized, placebo-controlled, crossover study of SPI-62 in subjects with ACTH-dependent Cushing’s syndrome. Subjects will receive each of the following 2 treatments for 12 weeks: SPI-62 and matching placebo
Condition or disease  Intervention/treatment  Phase 
Cushing’s Syndrome ICushing Disease Due to Increased ACTH Secretion Cortisol ExcessCortisol; Hypersecretion Cortisol Overproduction Ectopic ACTH Secretion Drug: SPI-62 Drug: Placebo Phase 2

Detailed Description:
This is a multicenter, randomized, placebo-controlled, Phase 2 study to evaluate the pharmacologic effect, efficacy, and safety of SPI-62 in subjects with ACTH-dependent Cushing’s syndrome. Each subject who provides consent and meets all inclusion and exclusion criteria will participate in 3 periods: a 28-day screening period (Days -35 to -8), a 7-day baseline period (Days -7 to -1), and a 24-week treatment period (Day 1 of Week 1 to Day 168 ± 3 days of Week 24). Up to 26 subjects will be enrolled with the aim that 18 subjects with Cushing’s disease will complete the study. Subjects will receive each of the following 2 treatments for 12 weeks: SPI-62 and matching placebo.
Study Design
Go to  
Study Type  : Interventional  (Clinical Trial)
Estimated Enrollment  : 26 participants
Allocation: Randomized
Intervention Model: Crossover Assignment
Intervention Model Description: Staggered parallel crossover
Masking: Quadruple (Participant, Care Provider, Investigator, Outcomes Assessor)
Primary Purpose: Treatment
Official Title: SPI-62 as a Treatment for Adrenocorticotropic Hormone-dependent Cushing’s Syndrome
Actual Study Start Date  : March 1, 2022
Estimated Primary Completion Date  : March 15, 2023
Estimated Study Completion Date  : August 15, 2023

More info at https://clinicaltrials.gov/ct2/show/record/NCT05307328