📞 Webinar: Delays in Diagnosis of Pituitary Tumors: Why They Happen and Steps to Prevent Them

Presented by

Kenneth M. De Los Reyes MD, MSc
Assistant Professor
Co-director of Skull Base Surgery
Director of Quality Assurance
Department of Neurosurgery
Loma Linda University Medical Center

Register Now!

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: Wednesday, December 13, 2017
Time: 10:00 AM – 11:00 AM Pacific Standard Time 1:00 PM – 2:00 PM Eastern Standard Time

Webinar Description

Learning Objectives:

Building Patient and Medical Provider Awareness

  1. To build awareness among patients and medical providers of early signs and symptoms of pituitary and pituitary related tumors
  2. To understand the consequences of delays in diagnosis of pituitary tumors
  3. To outline steps for patients and medical providers to take to prevent delays in diagnosis of pituitary tumors.

⁉️ Can You Help? Adderall and Cushings

Recently posted on the message boards at http://cushings.invisionzone.com/topic/54332-adderall-and-cushings/

I was recently diagnosed by the NIH with Cushings and Adrenal hyperplasia due to a tumor in my adrenals.  I have taken Adderall for a few years now for what I thought was ADD.  Can Adderall increase cortisol levels since it is a stimulant?

If you will respond here or in the comments, I will post your answer to the boards.

😎 Letter to Cushies

Originally posted on Facebook​​​​​​​

To all my Cushie friends who are still dealing with this horrible disease, keep fighting, don’t ever give up, you will get better.  I told a very close friend of mine the other day, if I had the power I would heal everyone you today.  Cushing’s is a horrible disease, and unless you have been through it there is no way anyone could ever understand it.

After a year and a half  since my BLA and I am the healthiest, happiest person I have been in a very long time.  I am working out with a personal trainer once a week because I am determined to regain the strength I lost due to having Cushing’s for six very long years.   I have a long way to go and it is not going to happen overnight but it will happen.

I live each day to the absolute fullest and enjoy every minute of every day, I am so grateful to have made it through to the other side, not without some emotional and physical scars, but I made it none the less.

I think about and pray for all of you every day because without your knowledge and support I don’t know that I would have made it.

To those of you who are still on the boards please feel free to share this post and my story to everyone there.  I am sorry I don’t go on the boards any more, but as I said I didn’t make through without some emotional scars.

I love you all, god bless and be good to yourself always.

📞 Salivary Testing Webinar

Finally, the dream has come true.

Testing your salivary cortisol can now be done on your iPhone with Point of Care (POC) technology. Join Dr. Friedman for a webinar informing the Cushing’s and Addison’s community on the newly available Peak Biometric Research Stress Management System that offers a quick, private, and non-invasive way to measure cortisol levels —without the hassle and expense of sending samples to a lab. Dr. Friedman will go over how to order and use the POC salivary cortisol monitor. He will explain that the product is not FDA-approved for diagnostic purposes and how to use it with commercial salivary testing. There will be plenty of time for questions and discussion.
salivary cortisol webinar
Sunday, November 19, 2017
6:00 pm | Pacific Standard Time (San Francisco, GMT-08:00) | 1 hr

Meeting password: cushings
join the meeting by clicking here.

Join by phone
+1-855-797-9485 US Toll free
You can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat” and the videoconference will be posted on goodhormonehealth.com a few days after. You will be required to mute your phones/computers. Please contact us at mail@goodhormonehealth.com if you have questions.

⁉️ Cushing’s Survey

Cushie Jessica G writes:
​​​​​​​
“I am writing a research paper for my final exam. My thesis is that Cushing’s syndrome/disease is not rare, but frequently missed or under-diagnosed.

I have created 2 separate surveys as part of my research. One survey is for people who are undiagnosed but currently seeking diagnosis, the other is for people who have been diagnosed and treated.

Please take these quick surveys. I’m hoping that by incorporating these statistics into my paper I can make a valid argument and help raise awareness for all of us.”

— survey for undiagnosed people
https://www.surveymonkey.com/r/ZL77M97

— survey for diagnosed people
https://www.surveymonkey.com/r/6PQ7J87

⁉️ 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/

 

🌈 Today is the “Birthday” of the Message Boards!

 

 

Today  is the birthday, or anniversary, of the boards starting September 30, 2000 (The rest of the site started earlier that year in July 21, 2000)

As of today, we have 72,581 members who have made 383,647 posts.

Find the message boards here: http://cushings.invisionzone.com/