⁉️ 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/

 

🔵 New on the Message Boards ~ July 15, 2017

 

A quick summary of some of this week’s activity on the Cushing’s Help message boards.

A new question about the cost vs benefits of growth hormone under the topic Growth Hormone

A newbie who is not yet diagnosed but has Bi lateral adrenal tumors

Information about Webinar: Coping With the Ups and Downs of Pituitary Disorders

A new Image GalleryA Dancer’s 40 lbs Weight Gain in under 2 years + symptoms

The first picture shows me in peak performance shape weighing about 105 lbs standing at 5’4″ contrasted with how I look now at about 147 lbs with swollen legs&arms, puffy red face, fat above the collar bone and on the neck, and lots of weight gain in the butt/thigh area. It really looks like I don’t have a neck anymore.

Following are photos of how my face has steadily changed every few months. Notice how I used to have a very defined heart-shaped face with a pointy chin, and now have a round face with jowls and numerous neck lines/rolls that extend past my collar bone.

The question was asked: Has anyone stayed in a hospital for multiple days of inpatient testing?

A new member from Nottingham, UK was told she had cyclical edema, then PCOS which all turned out to be Cushing’s.

 

There’s other stuff happening but you’ll just have to read the boards to find out what!

(Please note that I’m sharing these from the Cushings-Help.com message boards. You must be a logged-in member of that board to read them. Log in or register at http://cushings.invisionzone.com )

Please join us!

 

📅 Webinar: Coping With the Ups and Downs of Pituitary Disorders

Presented by

Linda M. Rio, M.A., MFT

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.

DATE:  July 17, 2017
TIME:  10:00 AM – 11:00 AM Pacific Daylight Time/1:00 PM – 2:00 PM Eastern Daylight Time

 

Webinar Learning Objectives:

By attending this webinar participants will:

  1. Be able to identify at least 3 mental health symptoms that are common to those diagnosed with a pituitary disorder.
  2. Understand basics of “trauma” and its potential role in the etiology of some pituitary disorders.
  3. Know how the medical/physiological aspects of pituitary tumors and other pituitary disorders can interact and affect the mental health of patients.
  4. Recognize the potential impact on the family for those with a member with a pituitary disorder.
  5. Learn some positive coping skills for both pituitary patients and their family members.

Presenter Bio:

Linda has been a Marriage & Family Therapist (MFT) for over thirty years. She is also the editor/author of The Hormone Factor in Mental Health: Bridging the Mind-body Gap (2014), which includes contributions from some of the world’s top experts in endocrinology, medical family therapy, nutrition, patient advocacy as well as real accounts from patients and their family members. Linda was on the editorial team for Pituitary Disorders Diagnosis and Management (2013), and co-author with her daughter, Tara, of a book about eating disorders. She has authored dozens of articles for professionals as well as the general public on a variety of topics, appeared on radio and T.V. Linda and her husband, Lou, just celebrated their 48th anniversary. They have two children and 3 granddaughters who are now in college.

Interview with Katie (kvb927)

 

Katie’s short bio: Symptoms started in 2002 at age 22, or before. Jan. 2008 – 2 mm. area of differential enhancement on right pituitary and 11 mm. pineal cyst identified by MRI Jan. 2008 – DX – hypothalamic amenorrhea Mar. 2008 – DX – pituitary adenoma, hypogonadism – female Katie will be an officer in the upcoming Cushing’s Help Organization.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/07/24/interview-with-katie-kvb927

 

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Interview with Kate (Fairley)

 

Kate (Fairley), July 17, 2008. Kate had symptoms since 1991. She had two pituitary surgeries and another recurrence. She is not yet cured and her current diagnoses are Idiopathic Intracranial Hypertension, panhypopituitarism and a CSF leak. She has appeared on National Geographic TV in the Science of Obesity.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Sadly, Kate was only 46 when she died on June 23, 2014.  Her bio and video can be found here: https://cushingsbios.com/2015/06/23/1623/

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Day 27: Cushing’s Awareness Challenge 2017

Over the years, we went on several Windjammer Barefoot Cruises.  We liked them because they were small, casual and were fairly easy on the wallet.

They sailed around the Caribbean to a variety of islands, although they sometimes changed itineraries depending on weather, crew, whatever.  One trip we were supposed to go to Saba but couldn’t make port.  A lot of people got off at the next port and flew home.

The captains were prone to “Bedtime Stories” which were often more fiction than true but they added to the appeal of the trip.  We didn’t care if we missed islands or not – we were just there to sail over the waves and enjoy the ride.

The last trip we took with them was about two years before I started having Cushing’s problems.  (You wondered how I was going to tie this together, right?)

The cruise was uneventful, other than the usual mishaps like hitting docks, missing islands and so on.  Until it was a particularly rough sea one day.  I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery.  I fell and cracked the back of my head on the curved edge of a table in the dining area.  I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery, I got some morphine.

We asked several doctors later if that hit could have contributed to my Cushing’s but doctors didn’t want to get involved in that at all.

The Windjammer folks didn’t fare much better, either. In October 1998, Hurricane Mitch was responsible for the loss of the s/v Fantome (the last one we were on).

All 31 crew members aboard perished; passengers and other crew members had earlier been offloaded in Belize.

The story was recorded in the book The Ship and the Storm: Hurricane Mitch and the Loss of the Fantome by Jim Carrier.  The ship, which was sailing in the center of the hurricane, experienced up to 50-foot (15 m) waves and over 100 mph (160 km/h) winds, causing the Fantome to founder off the coast of Honduras.

This event was similar to the Perfect Storm in that the weather people were more interested in watching the hurricane change directions than they were in people who were dealing with its effects.

I read this book and I was really moved by the plight of those crew members.

I’ll never know if that hit on my head contributed to my Cushing’s but I have seen several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.

Interview with Donna Sellers, mother of a Cushing’s patient

 

Donna Sellers, President, John’s Foundation for Cushing’s Awareness, mother of a Cushing’s patient.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/06/19/interview-with-donna-sellers-mother-of-a-cushings-patient

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