Monday, October 27, 2014

Advice for Cort-Reduction Surgery

I just made up that name. Cort reduction surgery sounds like the new wave of self help surgeries, doesn't it?

Well, as each day goes by, a new Cushie gets diagnosed and heads to surgery. One friend, Heather, has been worried about decision to undergo pituitary surgery. She mention more anxiety and growing concerns as the surgery day approaches.

I have personally been at the "Well, what's gonna happen to me now?" stage more than once.

I have been diagnosed with Cushing's FOUR times in six years. I endured the insanity of consecutive daily midnight blood draws, midnight saliva tests, and urine collections FOUR time periods in my life. I had to determine the best option to get rid of this tenacious cortisol beast that is Cushing's FOUR times. *It ain't no picnic.*

12/2007. First diagnosis -- pituitary surgery; delayed while I tried to become pregnant.
09/2008. Darling baby arrives.
06/2009. Pituitary surgery #1.

04/2009. Pituitary surgery #2.

07/2012. Started ketoconazole.

12/2013. Bilateral adrenalectomy.

Each time I tested, I faced questions I already knew would hang over me: What treatment would I face next? Will this finally work? Only each time, a decision had to be made, and I had to follow through with that decision all the way to surgery day.

As the years go on, uncertainty gets worse. Desperation sends your mind racing, while bleakness takes residence in your heart. You know the choices. You know which of your friends it worked for. As you realize you have already tried nearly everything, you also realize there are just not enough appealing choices left.

So I tell my friend to do what she can, but take a break from the worry.

"Your body is trying to trick you. Cortisol ramps up towards a stressful event like surgery, and doubt and anxiety build. Don't let it fool you. The month before surgery is always the worst. Cushing's grabs a hold of us and swings us around like a dog does his chew toy. After surgery, you will realize how clear your mind can be again once the cortisol faucet is shut off and the overflowing tub is drained of unneeded cortisol.

May I suggest doing something for yourself once a week until surgery?
Pick a day and do it.
Movies. Favorite dessert place. Buy a new purse. Go buy a good book for the hospital... Fiction ... No self help books! The days will fly by. You will be better before you know it."

With every Cushie we send to surgery, the community collectively holds its breath until the Cushie is safely through surgery and out of the hospital. We take a deep but quick breath, and we hold it again until we see the signs of excess cortisol reverse in their body over the coming months and years. Will that surgery cure them? We just never know who will make it out of the disease race track on lap 1, 2, 3, 4, or more after these surgery pit stops. "We elders just can't bring ourselves to say, Kid this may be it, or you may be back at the plate for another turn."

Only time will tell.

Saturday, October 18, 2014

Straight Talk Cushing's

It's good to have choices.

Now there are two FDA-approved drugs available for those Cushies who are not a candidate for a/another surgery but still remain uncured -- Corcept's Korlym and Novartis' Signifor. Two years ago, there were none.

The long-term benefits are clear.

The entire Cushing's community benefits from Big Pharma dollars spent to create what we all want -- disease awareness, earlier diagnosis for all patients, and better treatment options.

To this end, I want to share the fist video that I have seen from Novartis to further this shared mission. It is well done and quite informative.

Share the link and save a life.

(I tried to embed this video but this action is forbidden by the Novartis youtube channel. Click through. It is an informative video.)

Sunday, October 12, 2014

Quick, Easy, Inexpensive Cortisol Testing Should Soon Be Available on All Smartphones

June 2014

Quick, Easy, Inexpensive Cortisol Testing Should Soon Be Available on All Smartphones

Contact: Aaron Lohr
Director, Media Relations
Phone: 202.971.3654
Contact: Jenni Glenn Gingery
Manager, Media Relations
Phone: 202.971.3655

CHICAGO, IL—Researchers have developed a device that uses any smartphone to measure the cortisol concentration in saliva. The device was presented Tuesday, June 24, at ICE/ENDO 2014, the joint meeting of the International Society of Endocrinology and the Endocrine Society in Chicago.

"We have developed a method for measuring cortisol in saliva using a smartphone and a disposable test strip. This innovation enables anyone with a smartphone to measure their salivary cortisol level quickly, accurately, and affordably," said lead study author Joel R. L. Ehrenkranz, MD, director of diabetes and endocrinology of the Department of Medicine at Intermountain Healthcare in Murray, Utah.

Cortisol is a hormone made by the adrenal glands that's essential for the body's response to stress, and measuring cortisol can help diagnose adrenal diseases and monitor stress levels. Current testing for salivary cortisol levels involves collecting a saliva sample and sending it to a clinical lab for analysis.

"A lab charges about $25 to $50 for a quantitative salivary cortisol test and has a turnaround time of days to a week. This test, taken in a medical office or at home, will cost less than $5 and take less than 10 minutes," Dr. Ehrenkranz said. "The device is a reader that includes a case, a light pipe, and a lens and costs about a dollar to make. There is no battery power and it's unbreakable, passive and reusable."

Doctors worldwide can use the smartphone test to help them diagnose adrenal insufficiency and hypercortisolism and monitor physiologic variations in cortisol concentration; and individuals can monitor their own cortisol levels whenever they like. 

The software is "operating-system-agnostic," he explained, meaning that the device can be used on all platforms, including iOS, Android, Windows, and BlackBerry, and it has a universal form factor that works with all smartphones.

The person being tested inserts a straw-like saliva collector under the tongue. The collector wicks the saliva by capillary action to an immunoassay strip housed in a cassette and the cassette is inserted into the reader. The smartphone uses its camera and flash to take a picture of the saliva-coated strip and an algorithm converts the image's pixel density to a cortisol value.

Marketing this test as a cortisol assay would make it a class 2 medical device, Dr. Ehrenkranz explained. He and his research team are now collecting clinical data for the FDA submission, and hope to attain approval in 2015.

This study was privately funded.

# # #

Founded in 1916, the Endocrine Society is the world's oldest, largest and most active organization devoted to research on hormones and the clinical practice of endocrinology.  Today, the Endocrine Society's membership consists of over 17,000 scientists, physicians, educators, nurses and students in more than 100 countries. Society members represent all basic, applied and clinical interests in endocrinology. The Endocrine Society is based in Washington, DC. To learn more about the Society and the field of endocrinology, visit our site at Follow us on Twitter at!/EndoMedia.

Handheld Cortisol Sensor for PTSD via

Let's reward the businesses out there working to make a cortisol meter!



Our cortisol sensing technology enables monitoring of stress levels non-invasively using a nanoengineered biochip and a handheld measurement device. The nanoengineered biochip is both low cost and disposable. We are working with Florida International University and the National Science Foundation's I-Corps program to assess both the market needs and market constraints of the technology from an economic perspective while finalizing the development of the initial market prototype.

- See more at:

Researchers developing a test for real-time stress detection

Ask me! I'll participate. I have over 100 friends who have no adrenal glands. Let us test the device with you. 

- Signed, a Cushing's patient saved by bilateral adrenalectomy but needs a cortisol meter for better quality of life.


Researchers developing a test for real-time stress detection

Shekhar Bhansali (left) and Kelly Mesa (right) are fighting the negative health effects of cortisol.

Shekhar Bhansali (left) and Kelly Mesa (right) are fighting the negative health effects of cortisol.

FIU researchers are developing a test to detect in real-time a person's level of cortisol – widely known as the stress hormone – which could help soldiers with post-traumatic stress disorder (PTSD), and others who suffer from cortisol's effects, to manage its impact on their health.

Cortisol is released by the adrenal glands as part of the fight-or-flight mechanism. Elevated levels of cortisol can cause a long list of negative health effects, including depression, mental illness, heart disease and lower life expectancy.

Now, with a $50,000 grant from the National Science Foundation's Innovation Corps (I-Corps) program, Shekhar Bhansali, Alcatel-Lucent professor and chair of the Department of Electrical and Computer Engineering, and Kelly Mesa, a doctoral student in his department, are exploring the commercial potential of their research on cortisol detection. Other members of the team include Gabriel Saffold, a graduate student in entrepreneurship at the University of Central Florida, and Alison Tanner from the Florida Institute for the Commercialization of Public Research, who will serve as business mentors for the project.

They are one of 24 teams from universities around the country that will participate in national business development workshops and speak with potential customers and partners to evaluate the real-world potential of their technology. They also will use the Business Model Canvas, a popular entrepreneurial tool, to refine their business model.

Cortisol levels currently can only be measured on tests done in a lab. The team's goal is to see if there can be a quantitative diagnosis for PTSD through a quick test done with a sample of sweat or saliva. The proposed sensor has the potential to aid soldiers with PTSD by providing a tool that allows them to monitor their stress levels throughout the day, Mesa said.

FIU has established itself as a leader in the detection of cortisol through its nanotechnology research. One of four partner universities in the NSF's Nanosystems Engineering Research Center for Advanced Self-Powered Systems of Integrated Sensors and Technologies (ASSIST), FIU is a leader in a national nanotechnology research effort to create small, wearable, self-powered devices that will help people monitor their health.

The FIU team's research involves building a sensor on a strip and the electronics to read it. Within the six-month duration of the NSF grant, the team will determine whether their research is worthy of pursuit.

"We need to understand what our potential customers' needs are and see if our technology can be engineered to serve them," said Bhansali, the team's principal investigator.

Electrochemical sensing of cortisol

Electrochemical sensing of cortisol: a recent update.


Singh A, Kaushik A, Kumar R, Nair M, Bhansali S.


Appl Biochem Biotechnol. 2014 Oct;174(3):1115-26. doi: 10.1007/s12010-014-0894-2. Epub 2014 Apr 11.



Psychological stress caused by everyday lifestyle contributes to health disparities experienced by individuals. It affects many biomarkers, but cortisol - "a steroid hormone" - is known as a potential biomarker for psychological stress detection. Abnormal levels of cortisol are indicative of conditions such as Cushing's syndrome Addison's disease, adrenal insufficiencies and more recently post-traumatic stress disorder (PTSD). Chromatographic techniques, which are traditionally used to detect cortisol, are a complex system requiring multistep extraction/purification. This limits its application for point-of-care (POC) detection of cortisol. However, electrochemical immunosensing of cortisol is a recent advancement towards POC application. This review highlights simple, low-cost, and label-free electrochemical immunosensing platforms which have been developed recently for sensitive and selective detection of cortisol in bio-fluids. Electrochemical detection is utilized for the detection of cortisol using Anti-Cortisol antibodies (Anti-Cab) covalently immobilized on nanostructures, such as self-assembled monolayer (SAM) and polymer composite, for POC integration of sensors. The observed information can be used as a prototype to understand behavioral changes in humans such as farmers and firefighters. Keeping the future directions and challenges in mind, the focus of the BioMEMS and Microsystems Research Group at Florida International University is on development of POC devices for immunosensing, integration of these devices with microfluidics, cross validation with existing technologies, and analysis of real sample. 


 24723204 [PubMed - in process]


 PMC4179985 [Available on 2015/10/1]
Full text: Springer

Continuous subcutaneous hydrocortisone infusion viable option to normalize cortisol

"Continuous subcutaneous hydrocortisone infusion viable option to normalize cortisol

Øksnes M. J Clin Endocrinol Metab. 2014;doi:10.1210/jc.2013-4253.

  • February 24, 2014

Continuous subcutaneous hydrocortisone infusion was a safe approach for decreasing adrenocorticotropic hormone and cortisol levels to a normal circadian level with minimal adverse effects on glucocorticoid metabolism compared with conventional oral hydrocortisone replacement therapy, according to results in a prospective crossover study.

These data suggest a physiological glucocorticoid replacement therapy may be beneficial and that the infusion may become an option for patients with poorly controlled levels such as those with Addison's disease, according to Marianne Øksnes, MD,of the department of clinical science and department of medicine at the University of Bergen in Norway, and colleagues.

Patients with Addison's disease (n=33) were assessed at baseline and after 8 and 12 weeks in each treatment arm, according to data.

The infusion allowed the normalization of adrenocorticotropic hormone (ACTH) and cortisol levels, and 24-hour salivary cortisol curves appeared to reach normal circadian variation, the researchers wrote.

"This study shows that [continuous subcutaneous hydrocortisone infusion] can safely re-establish the circadian cortisol rhythm and normalize morning ACTH levels in [Addison's disease] patients, which is in sharp contrast to the typical daytime cortisol peaks and troughs and elevated morning ACTH seen with [oral hydrocortisone] treatment," researchers wrote.

The oral hydrocortisone yielded major alterations in glucocorticoid metabolites and metabolic enzyme activities, according to researchers. However, the infusion appeared to restore glucocorticoid metabolism close to normal.

No significant between-treatment differences were observed in sleep outcomes, according to data.

Additional studies are warranted to determine further ultradian rhythm improvement outcomes for patients with Addison's disease.

Disclosure: The researchers report no relevant financial disclosures."

Wednesday, October 1, 2014

Learning to Love Yourself while Cushie

A new friend who is facing a Cushing's diagnosis lamented her recent attempt to find a swimsuit for her pregnant-looking Cushie body. She knew she didn't need to let changes to her body affect her image of herself, but it did. She knew she was using society's standards as the yardstick of her personal worth. She asked us for advice.

This topic has invaded the conversations of Cushies for my whole eight years and probably even before. The damage of high cortisol is pervasive, altering the total self --mind, body, and soul. With debilitating effects from a disease no one has heard of (except the vets in your life), the Cushie feels an unfair burden to be a good patient: positive, happy, and strong, not letting the disease change who you are.

Cushing's is insidious. It breaks you down on the inside and outside, and it never lets up. The disease itself prevents you from having the strength in body and mind to fight. Others simply don't understand.

High cortisol damages your muscles including your heart, steals your physical strength, and keeps you from doing daily chores that you never use to consider real activity in your days. Forget climbing stairs, getting up easily from a chair, or standing for five minutes. Cushing's says no to that.

High cortisol also gives you additional
diseases that specialists never consider are related to each other: acid reflux, diabetes, irritable bowels, broken bones, tooth problems, headaches, and unrelenting fatigue. Others do not understand how fatigue cloaks a Cushie in a cement blanket that eliminates any fun of celebrations, family gatherings, or simple trips to the market.

High cortisol affects your brain with anxiety, depression, memory lapses, and confusion. Cushing's makes you feel dumb.

High cortisol takes your ego and replaces it with "ugly symptoms" of unstoppable weight gain, excess hair where women shouldn't have it, red or purple stretch marks, acne, hair falling out, and that buffalo hump you notice when you put your hair in a ponytail.

With all this swirling in my mind, I answered my new friend. On New Years Eve 2013, bilateral adrenalectomy began my escape from high cortisol, after seven grueling years of fighting for a cure.

"This disease is awful. No doubt. Welcome to the days when you learn to love yourself for all that you are, not what you can do or what you look like. In the end, not caring what others think is a very good lesson Cushies learn, and while difficult, it is exactly what we need to learn."