⁉️ Would *YOU* Do This?

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/

⁉️ Cushing’s Myths and Facts: “All types of Cushing’s are the same”

Myth: “All types of Cushing’s are the same”

myth-busted

Fact: In the words of our dear friend and advocate, Robin Ess, “There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on”….Amazingly, some doctors do not realize that there are different varieties of Cushing’s and that the symptoms can come from a different source.

For instance, a doctor might rule out a pituitary tumor and completely dismiss the patient, even with biochemical evidence of Cushing’s. That doctor, instead of dismissing the patient, should thoroughly look for other potential sources, such as an adrenal tumor, or yet another source. Did you know that tumors on one’s lungs can even cause Cushing’s? Most people don’t know that.

For more information about the different types of Cushing’s, please read: http://www.mayoclinic.org/diseases-conditions/cushing-syndrome/basics/causes/con-20032115

Another great article regarding ectopic Cushing’s can be found here: http://www.nejm.org/doi/full/10.1056/NEJM199809243391304#.VH-80v5f2s8.facebook

MaryONote: Folks might be interested in reading Jayne’s story, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s – lung tumors.

 

⁉️ Cushing’s Myths and Facts: Cushing’s Syndrome/Disease can be healed or cured

Myth: Cushing’s Syndrome/Disease can be healed or cured through change in diet or exercise.

myth-busted

Fact: NO! Caloric intake or lack of exercise has NO impact on weight gain and/ or loss in persons with Cushing’s.

Saying that someone “cheated” on their diet may seem reasonable to some as a reason for weight gain but I assure you that a candy bar or a piece of pie does not make a person with Cushing’s gain weight or get sick. Excess cortisol is the reason for Cushing’s symptoms. Treating the disease is the only way to alleviate symptoms.

The first line of treatment with the highest rate of remission is currently surgery to remove the tumor (s) from the pituitary, adrenal gland, or ectopic source.

⁉️ Cushing’s Myths and Facts: “All types of Cushing’s are the same”

Myth: “All types of Cushing’s are the same”

myth-busted

Fact: In the words of our dear friend and advocate, Robin Ess, “There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on”….Amazingly, some doctors do not realize that there are different varieties of Cushing’s and that the symptoms can come from a different source.

For instance, a doctor might rule out a pituitary tumor and completely dismiss the patient, even with biochemical evidence of Cushing’s. That doctor, instead of dismissing the patient, should thoroughly look for other potential sources, such as an adrenal tumor, or yet another source. Did you know that tumors on one’s lungs can even cause Cushing’s? Most people don’t know that.

For more information about the different types of Cushing’s, please read: http://www.mayoclinic.org/diseases-conditions/cushing-syndrome/basics/causes/con-20032115

Another great article regarding ectopic Cushing’s can be found here: http://www.nejm.org/doi/full/10.1056/NEJM199809243391304#.VH-80v5f2s8.facebook

MaryONote: Folks might be interested in listening to this podcast episode with Jayne, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s – lung tumors.

http://www.blogtalkradio.com/cushingshelp/2008/01/31/tentative-date-an-interview-with-jayne-cyclical-cushings-patient

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⁉️ Cushing’s Myths and Facts: Cushing’s Syndrome/Disease can be healed or cured

Myth: Cushing’s Syndrome/Disease can be healed or cured through change in diet or exercise.

myth-busted

Fact: NO! Caloric intake or lack of exercise has NO impact on weight gain and/ or loss in persons with Cushing’s.

Saying that someone “cheated” on their diet may seem reasonable to some as a reason for weight gain but I assure you that a candy bar or a piece of pie does not make a person with Cushing’s gain weight or get sick. Excess cortisol is the reason for Cushing’s symptoms. Treating the disease is the only way to alleviate symptoms.

The first line of treatment with the highest rate of remission is currently surgery to remove the tumor (s) from the pituitary, adrenal gland, or ectopic source.

🦓 Day 5, Cushing’s Awareness Challenge 2022

In Day 9 on April 9, 2015, I wrote about how we got the Cushing’s colors of blue and yellow.  This post is going to be about the first Cushing’s ribbons.

I was on vacation  in September, 2001 when SuziQ called me to let me know that we had had our first Cushie casualty (that we knew about).

On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn’t just stop posting.

For all of the newcomers to the board that did not know Janice, she was a very caring individual. She always had something positive to say. Janice was 36 years old, was married and had no children. She had a miscarriage in December and began to have symptoms of Cushing’s during that pregnancy. After the pregnancy, she continued to have symptoms. When discussing this with her doctor, she was told that her symptoms were just related to her D&C. She did not buy this and continued until she received the accurate diagnosis of Cushing’s Syndrome (adrenal) in March of 2001. Tragically, Janice’s tumor was cancerous, a very rare form of Cushing’s.

Janice then had her tumor and adrenal gland removed by open adrenalectomy, a few months ago. She then began chemotherapy. She was very brave through this even though she experienced severe side effects, including weakness and dizziness. She continued to post on this board at times and even though she was going through so much, she continued with a positive attitude. She even gave me a referral to a doctor a few weeks ago. She was my inspiration. Whenever I thought I had it bad, I thought of what she was dealing with, and I gained more perspective.

Janice was having difficulty with low potassium levels and difficulty breathing. She was admitted to the hospital, a CT scan was done and showed tumor metastasis to the lungs. She then was begun on a more aggressive regimen of chemo. She was discharged and apparently seemed to be doing well.

The potassium then began to drop again, she spiked a temp and she was again admitted to the hospital. She improved and was set to be discharged and then she threw a blood clot into her lungs. She was required to be put on a ventilator. She apparently was at high risk for a heart attack. Her husband did not want her to suffer anymore and did not want her to suffer the pain of a heart attack and so chose for the doctors to discontinue the ventilator on Tuesday. She died shortly thereafter.

Janice was our friend. She was a Cushie sister. I will always remember her. Janine asked me to let her know when we get the Cushing’s ribbons made as she and the rest of Janice’s family would like to wear them in her memory. She said that Janice would want to do anything she could to make others more aware of Cushing’s.

The image at the top of the page shows the first blue and yellow ribbon which were worn at Janice’s funeral.  When we had our “official ribbons” made, we sent several to Janice’s family.

Janice was the first of us to die but there have been more, way too many more, over the years.  I’ll write a bit more about that on Day 21.

❓Clinical Trial: Congenital Adrenal Hyperplasia (CAH)


The CAHmelia clinical trials are exploring a new investigational treatment for classic CAH.

CAHmelia 203 and CAHmelia 204 are clinical trials to test tildacerfont in adults with classic CAH, which may offer you and your loved ones hope of a brighter future – one where you may not have to choose between symptom management and long-term health.
Tildacerfont is a new type of oral, once-daily investigational treatment – one that is not a steroid – that is currently being tested in adults with classic CAH. By reducing the amount of androgens your body makes, tildacerfont may improve your classic CAH symptoms.
This investigational treatment will not replace your steroid treatment but may allow you to manage your disease with lower amounts of steroids at normal or near-normal doses.

Who can take part in this trial? You may be able to take part if you:Are at least 18 years of ageHave a confirmed diagnosis of classic CAH due to 21-OH deficiencyHave been on the same daily dose of steroids (GCs and/or mineralocorticoids) for at least 1 month before starting the trialBoth trials are now open for enrollment.
Tildacerfont is an investigational treatment not authorized for use in people outside the clinical trial.
For more information, go to: clarahealth.com/studies/cahmelia

​​​​​​​ 

📞Webinar on The 20-minute Mini Back Scope Adrenalectomy (MBSA)

 

Dr. Friedman will host Tobias Carling, MD, PhD, FACS
Surgeon-in-Chief & Founder
Carling Adrenal Center
Hospital for Endocrine Surgery
www.adrenal.com
Who will talk on:
The 20-minute Mini Back Scope Adrenalectomy (MBSA)

The Carling Adrenal Center is the world’s busiest adrenal surgery center, operating on patients from all 50 states and all over the world.

Dr. Carling is the most experienced adrenal surgeon in the United States, and by far the world’s most knowledgeable surgeon-scientist when it comes to adrenal gland function and disease, adrenal tumors and cancer, and all forms of adrenal gland surgery. Dr. Carling has more experience with advanced minimally invasive adrenal and endocrine operations than any surgeon in the United States. A fellow of the American College of Surgeons, Dr. Carling is a significant member of both the American Association of Endocrine Surgeons (AAES) and the International Association of Endocrine Surgeons (IAES).

Dr. Carling spent 17.5 years at Yale University and the Yale University School of Medicine where he served as the Chief of Endocrine Surgery, Associate Professor of Surgery, Program Director of the Yale Endocrine Surgery Fellowship and the Founder & Director of the Yale Endocrine Neoplasia Laboratory, a supreme scientific program focused on the molecular pathogenesis of tumors arising in the adrenal, thyroid and parathyroid glands.

Dr. Carling moved his world-renowned adrenal surgery program to Tampa, Florida in early 2020 to start the Carling Adrenal Center. Here, patients needing adrenal surgery have access to the best practices and best techniques the world has to offer.

Dr. Carling works closely with Dr. Friedman and will be able to perform a Mini Back Scope Adrenalectomy with a referral from Dr. Friedman.
Sunday • November 7• 6 PM PST

Via Zoom Click here to join the meeting or
https://us02web.zoom.us/j/4209687343?pwd=amw4UzJLRDhBRXk1cS9ITU02V1pEQT09
OR
+16699006833,,4209687343#,,,,*111116#
Slides will be available before the webinar and recording after the meeting at slides

Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.
For more information, email us at mail@goodhormonehealth.com

💉 In Manchester? New Endocrinology Unit

Stockport, NHS FT, has opened a new specialist endocrinology investigation unit, making it one of only two clinics of its type in Greater Manchester. One of the main benefits is, it will ensure patients with potential endocrinology conditions are treated faster, with more accurate assessments carried out. The specialist unit will also allow patients to receive their diagnosis as outpatients, without the need for an inpatient stay.

Endocrinology is the study and management of hormone related disorders which are often complex, and include some rare conditions. If hormones become unbalanced, they can lead to various conditions known as endocrine disorders. These are the conditions which are diagnosed and treated by the clinic’s consultants. Some of the examples include thyroid problems, adrenal nodules, which may lead to Cushing’s syndrome with hypertension, diabetes and osteoporosis; or pituitary nodules, which may lead to pituitary deficiency or cause blindness.

Some of these conditions are difficult to diagnose, and simple blood tests are not enough. In these cases, ‘dynamic tests’ are needed, which require significant expertise in how they are performed and how the results are interpreted. Previously these specialised tests required an inpatient stay, where patients would often have to wait for over few months.

Dr Daniela Aflorei, Consultant in Diabetes and Endocrinology for Stockport FT, who runs the clinic, said “I am delighted we are now able to provide a specialist Endocrinology service at our hospital which can provide quicker and more convenient care for our patients.

“With these conditions, swift diagnosis is very important for effective treatment, so this is going to have real benefit for people’s lives. I’d like to thank the many members of staff who helped us set up the new clinic and made it possible.”

The clinic has reduced the typical waiting time significantly, due to the clinic being run by endocrinology specialists. Patients have the opportunity to meet the endocrinology specialist nurses, helping understand the reasons for the tests to be discussed, keeping them informed in all aspects of their treatment.

The specialist clinic is run on one day each week, and is expected to benefit around 300 patients a year.

From https://www.nationalhealthexecutive.com/articles/specialist-unit-improve-endocrinology-care

📞 Dr. Theodore Friedman (The Wiz) will host a webinar on “How to improve quality of life for those with no adrenals (BLA and Addison’s)”

 

Dr. Friedman will discuss topics including:

  1. Who should get an adrenalectomy?
  2. How do you optimally replace adrenal hormones?
  3. What laboratory tests are needed to monitor replacement?
  4. When and how do you stress dose?
  5. What about subcut cortisol versus cortisol pumps?
  6. Patient Melissa will lead a Q and A

Sunday • May 17 • 6 PM PST
Click here on start your meeting or
https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=mb896b9ec88bc4e1163cf4194c55b248f

OR
Join by phone: (855) 797-9485

Meeting Number (Access Code): 802 841 537 Your phone/computer will be muted on entry.
Slides will be available on the day of the talk here
There will be plenty of time for questions using the chat button. Meeting Password: addison
For more information, email us at mail@goodhormonehealth.com