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.

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."

Saturday, September 20, 2014

Growth Hormone Replacement can cause Adrenal Crisis

Health Alert: Adrenal Crisis Causes Death in Some People Who Were Treated with hGH

Doctors conducting the follow-up study of individuals treated with hGH looked at causes of death among recipients and found some disturbing news. Many more people have died from a treatable condition called adrenal crisis than from CJD. This risk does not affect every recipient. It can affect those who lack other hormones in addition to growth hormone. Please read on to find out if this risk applies to you. Death from adrenal crisis can be prevented. 

Adrenal crisis is a serious condition that can cause death in people who lack the pituitary hormone ACTH. ACTH is responsible for regulating the adrenal gland. Often, people are unaware that they lack this hormone and therefore do not know about their risk of adrenal crisis. 

Most people who were treated with hGH did not make enough of their own growth hormone. Some of them lacked growth hormone because they had birth defects, tumors or other diseases that cause the pituitary gland to malfunction or shut down. People with those problems frequently lack other key hormones made by the pituitary gland, such as ACTH, which directs the adrenal gland to make cortisol, a hormone necessary for life. Having too little cortisol can be fatal if not properly treated. 

Treatment with hGH does not cause adrenal crisis, but because a number of people lacking growth hormone also lack ACTH, adrenal crisis has occurred in some people who were treated with hGH. In earlier updates we have talked about how adrenal crisis can be prevented, but people continue to die from adrenal crisis, which is brought on by lack of cortisol. These deaths can be prevented. Please talk to your doctor about whether you are at risk for adrenal crisis. 

  • Why should people treated with hGH know about adrenal crisis? Among the people who received hGH, those who had birth defects, tumors, and other diseases affecting the brain lacked hGH and often, other hormones made by the pituitary gland. A shortage of the hormones that regulate the adrenal glands can cause many health problems. It can also lead to death from adrenal crisis. This tragedy can be prevented. 
  • What are adrenal hormones? The pituitary gland makes many hormones, including growth hormone and ACTH, a hormone which signals the adrenal glands to make cortisol, a hormone needed for life. If the adrenal gland doesn't make enough cortisol, replacement medications must be taken. The most common medicines used for cortisol replacement are: 
    • Hydrocortisone 
    • Prednisone 
    • Dexamethasone 
  • What is adrenal crisis? Adrenal hormones are needed for life. The system that pumps blood through the body cannot work during times of physical stress, such as illness or injury, if there is a severe lack of cortisol (or its replacement). People who lack cortisol must take their cortisol replacement medication on a regular basis, and when they are sick or injured, they must take extra cortisol replacement to prevent adrenal crisis. When there is not enough cortisol, adrenal crisis can occur and may rapidly lead to death. 
  • What are the symptoms of lack of adrenal hormones? If you don't have enough cortisol or its replacement, you may have some of these problems: 
    • feeling weak 
    • feeling tired all the time 
    • feeling sick to your stomach 
    • vomiting 
    • no appetite 
    • weight loss 

    When someone with adrenal gland problems has weakness, nausea, or vomiting, that person needs immediate emergency treatment to prevent adrenal crisis and possible death. 

  • Why are adrenal hormones so important? Cortisol (or its replacement) helps the body respond to stress from infection, injury, or surgery. The normal adrenal gland responds to serious illness by making up to 10 times more cortisol than it usually makes. It automatically makes as much as the body needs. If you are taking a cortisol replacement drug because your body cannot make these hormones, you must increase the cortisol replacement drugs during times of illness, injury, or surgery. Some people make enough cortisol for times when they feel well, but not enough to meet greater needs when they are ill or injured. Those people might not need cortisol replacement every day but may need to take cortisol replacement medication when their body is under stress. Adrenal crisis is extremely serious and can cause death if not treated promptly. Discuss this problem with your doctor to help decide whether you need more medication or other treatment to protect your health. 
  • How is adrenal crisis treated? People with adrenal crisis need immediate treatment. Any delay can cause death. When people with adrenal crisis are vomiting or unconscious and cannot take medicine, the hormones can be given as an injection. Getting an injection of adrenal hormones can save your life if you are in adrenal crisis. If you lack the ability to make cortisol naturally, you should carry a medical ID card and wear a Medic-Alert bracelet to tell emergency workers that you lack adrenal hormones and need treatment. This precaution can save your life if you are sick or injured. 
  • How can I prevent adrenal crisis? 
    • If you are always tired, feel weak, and have lost weight, ask your doctor if you might have a shortage of adrenal hormones. 
    • If you take hydrocortisone, prednisone, or dexamethasone, learn how to increase the dose when you become ill. 
    • If you are very ill, especially if you are vomiting and cannot take pills, seek emergency medical care immediately. Make sure you have a hydrocortisone injection with you at all times, and make sure that you and those around you (in case you're not conscious) know how and when to administer the injection. 
    • Carry a medical ID card and wear a bracelet telling emergency workers that you have adrenal insufficiency and need cortisol. This way, they can treat you right away if you are injured. 

Remember: Some people who lacked growth hormone may also lack cortisol, a hormone necessary for life. Lack of cortisol can cause adrenal crisis, a preventable condition that can cause death if treated improperly . Deaths from adrenal crisis can be prevented if patients and their families recognize the condition and are careful to treat it right away. Adrenal crisis is a medical emergency. Know the symptoms and how to adjust your medication when you are ill. Taking these precautions can save your life. 


# # #

National Endocrine and Metabolic Diseases Information Service

6 Information Way
Bethesda, MD 20892–3569
Phone: 1–888–828–0904
TTY: 1–866–569–1162
Fax: 703–738–4929

The National Endocrine and Metabolic Diseases Information Service is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health, which is part of the U.S. Department of Health and Human Services.

The NIDDK conducts and supports biomedical research. As a public service, the NIDDK has established information services to increase knowledge and understanding about health and disease among patients, health professionals and the public.

This publication is not copyrighted. The NIDDK encourages users of this publication to duplicate and distribute as many copies as desired.

September 2010


Page last updated September 24, 2012

Monday, September 15, 2014

Compassion Breeds Solidarity

My compassion for and interest in illnesses, especially the rare or mysterious, has exploded since my Cushing's diagnosis in 2007. I now can relate to the pain and suffering, the daily struggle, the dashed hopes and dreams punctured by mental and physical ailments. This is a hard life, we can all try out best, but wow, it's a lot to bare. I've also become friends with many mother-child pairs, as the parent fights for the diagnosis and treatment of the child's Cushing's. That experience in blood draws, midnight testing, brain MRIs, brain surgeries, and withdrawal symptoms is also my experience. I totally agree: this life is not glamorous at all.

Take a moment to read this story from a teenager who is chronically ill. As an aside, several Cushing's patients develop POTS after bilateral adrenalectomy, but we patients can not determine the pattern or relationship between the two illnesses. 

Sunday, September 14, 2014

Lessons of Alexis Shapiro: Texas Girl's Ordeal Spotlights Silent Crisis

Image: Alexis Shapiro 

Lessons of Alexis Shapiro: Texas Girl's Ordeal Spotlights Silent Crisis


A Texas pre-teen's medically induced obesity and subsequent slim-down has led her parents to a broader mission: Ensure that people with dangerous adrenal insufficiency get the right treatment in emergencies.

Alexis Shapiro's condition, caused by removal of a benign brain tumor three years ago, prompted nonstop hunger that pushed her weight above 200 pounds. Life-saving surgery in March has left her 50-plus pounds trimmer.

But her mother, Jenny Shapiro, said Alexis remains vulnerable to potentially lethal blackouts linked to adrenal insufficiency or AI — a little-known condition that a leading specialist says might be vastly underdiagnosed and could affect several million people in the U.S.

Alexis' condition must be painstakingly managed via oral steroids and 24/7 access to a needle and the drug Solu Cortef, which must be injected within 30 minutes after serious symptoms arise. Yet the vast majority of ambulances don't carry the drug.

Shapiro is banding with a network of"friends and family" impacted by AI to lobby for all EMS units to carry Solu Cortef — and to urge that all first responders learn more about the illness.

People with AI lack vital hormones produced by the adrenal glands. The paired organs sit atop the kidneys, flooding the body with chemicals that, among other things, maintain blood sugar, blood pressure and cardiac output during stress, said Dr. Michael Freemark, chief of pediatric endocrinology and diabetes at Duke University Medical Center.

Some people are born with AI. But far more — possibly "several million," said Freemark, who supports the push for EMS units to carry Solu Cortef — have secondary adrenal insufficiency caused by brain tumors (and their removals), strokes or long-term use of administered drugs like prednisone and hydrocortisone.

The worst symptoms of AI can include disorientation, shock, organ failure and death, unleashed by stress, sudden injury or illness.

"I told them she has adrenal insufficiency and was going to need her shot at the hospital. She was white as a sheet, shaking, going into crisis."

Two close calls with AI have stricken Alexis — the second aboard a jet as sheflew to Cincinnati last spring for the gastric-sleeve operation that curbed her ravenous appetite. (NBC News has followed Alexis' journey since December.)

But it was the first terrifying episode at her kitchen table about a year ago that launched Jenny Shapiro's latest fight for her daughter, who wears a medic-alert bracelet revealing she has AI. A chair accidentally landed on and fractured Alexis' pinky toe — and the injury triggered an adrenal crisis.

"Before the ambulance got there, she said everything was going dark," Sharpiro said.

The mother gave Alexis five steroid pills to swallow — what's known as a "stress dose." (She normally takes one pill in the morning, one at night.) She hoped her daughter would keep the meds down. Vomiting is a common symptom of adrenal crisis. Sharpiro also agonized about giving Alexis an emergency Solu Cortef shot in case her stomach heaved up the tablets. As the EMS team arrived, Shapiro urged them to rush Alexis to the hospital. They urged her to "calm down."

"A lot of paramedics don't know what it is. When they came to my house when Alexis was in crisis, they kind of blew me off when I kept asking if I should inject her. They didn't know what I was talking about," Shapiro said. "That, plus not having the medication on ambulances, creates a dangerous situation."

Image: Philip Hart, who died in 2009 at age 22 of an adrenal insufficiency crisis.

Philip Hart, who died in 2009 at age 22 of an adrenal insufficiency crisis.

Many people likely wouldn't learn they have AI until they lapse into a disorienting adrenal crisis, said Eric Hart. He lost his 22-year-old son, Philip, to an adrenal crisis caused by undiagnosed Addison's disease. Philip's adrenal crisis was triggered by a bout of flu.

His death spurred Hart to start, a nonprofit in the Raleigh, North Carolina, area that has persuaded a local EMS training school to list adrenal shock as an illness paramedics must consider when assessing patients.

"Like Alexis' parents discovered, Solu Cortef is not carried on ambulances — something we seek to change," Hart said. "This needs to go nationwide."

Adrenal Insufficiency United is spearheading the drive to raise awareness among medics and, perhaps eventually, equip every ambulance with a $7 vial of Solu Cortef, a corticosteroid that restores the body's crashing hormonal chemistry and helps people in adrenal crisis to start recovering.

The nonprofit, based in Eugene, Oregon, was formed by Jenny Knapp, whose 18-year-old daughter was born with AI (Knapp's daughter, who wears a medic-alert necklace, prefers not to be named).

Knapp's daughter has a horror story similar to Shapiro's. The triggering incident was a car accident.

"I did not have the Solu Cortef injection with me because my (daughter's doctor) told me EMS squads carry it and would give it to her," Knapp recalls. "The ambulance got there. They didn't have it. I told them she has adrenal insufficiency and was going to need her shot at the hospital. She was white as a sheet, shaking, going into crisis. They barely looked at her."

On Tuesday, Knapp's group launched anonline petition to establish new emergency policies to treat adrenal crises, emphasizing "timely treatment prevents needless disability and death." By Friday, more than 3,000 people had signed the petition.

"You have a $7 injection versus someone becoming permanently disabled or dying from this," Knapp said. "Is this a third-world country where people are dying because of (the lack of) a $7 injection on ambulances?

"I don't blame EMS (emergency medical services) for this," Knapp said. "What they hear in training about adrenal insufficiency is maybe a couple sentences. They want to help. I'd love all EMS to carry Solu Cortef. However, that's not going to work for (all EMS units). Our solution is: 'Why don't you (paramedics and EMTs) just inject the patient-carried meds?'"

But that option is unsafe, contends Dr. Alfred Sacchetti, an emergency-room physician in Camden, New Jersey. He also speaks for the American College of Emergency Physicians (ACEP), an organization that includes EMS directors.

"If they want the ambulance squads to give their kids Solu Cortef that someone pulls out of the refrigerator, that's not fair to an EMS squad," Sacchetti said. "The paramedics would think: 'What's really in this vial? How much do they get?' The whole thing is very suspect."

The better choice, Sacchetti asserts, is to treat people in adrenal crisis with Solu Medrol, a glucocorticoid carried by every EMS responder. That drug will "buy you time," stabilizing the patient until they reach a hospital, he added.

"I've talked to some of these parents at length: 'I understand, you've got a child with a special problem and I sympathize.' But I can't say to every EMS squad: 'You must carry all of these very unusual drugs for the three people in the state who have this disease.' You couldn't justify the cost," Sacchetti said.

Freemark, the AI specialist from Duke University Medical Center, disagrees with that stance — and with the number of people perhaps afflicted. He believes all EMS units should carry Solu Cortef — and should include AI among the assessment protocols used to evaluate patients in distress.

"It is a potentially life-threatening condition," Freemark said.

    Friday, July 4, 2014

    Hug your Cushie: What is getting an MRI like?

    I am happy to introduce my new series, Hug your Cushie. Life as a Cushie is rough. You see it happen to your loved one or friend. You drive them there. You are there for the lab results and surgeries. Yet, you don't really experience the difficulties first hand. I want a way to show caregivers just some of what we experience. What if this were you?

    This is not a "woe is us" series. This is a "warriors keep going no matter what series." It is important that caregivers and friends understand this, I mean, really understand the toll this takes on a patient.  I hope that after being a Cushie for a few moments that you understand the physical and emotional challenges we face. Be sure to Hug your Cushie today.

    Hug your Cushie: What is getting an MRI like?

    I found this informational video intended for patients who need to undergo an MRI.


    I patiently watched that video. It all sounds pretty doable. Pleasant even! Well, why do I associate this machine with a torture chamber?

    I have been getting MRIs every six months for seven years now. I used to convince myself that it was no big deal. It was, after all, just what had to happen as a patient with pituitary tumors.

    Stoic. I'm always trying to be stoic.

    The last time I went for my pituitary MRI with dynamic protocol, I asked my dear friend Melony to tag along as "moms play date." I promised her dinner afterwards, but one condition:  she could not make me laugh in there. Melony held on to my leg the whole time. At the end, she asked, in tears, how I can stay so strong every time?  I told her that I really am not! I hate that machine! I hate the noises! I hate the head contraption that keeps my neck from moving. I hate lying in a tube where my whole body is touching the bottom and sides of the tube, with only four inches of space between my chest and the top of the MRI tube. I hate MRIs. There. I said it. 

    I don't have to be brave and mask all the challenges of being a patient. However, I will continue to get MRIs, as my treatment plan requires me to do, for the rest of my life.  I will always look forward to getting out of those tubes and on to more magical sounds.

    Some awesome person recorded the sounds of an MRI for 35 minutes. Click below, lean way into your speakers, even put your ear right on the speaker. Then stay put. See how long you can stay there before you pull away from the clicking and hammering sounds. Then remember, we Cushing's patients can not stop and move the noise. We have to float our minds off to a special place where we joyfully pass each minute in peace and quiet.


    If you like what you see here, share the blog. Please do not lift links or images then share them. Blog authors spend time away from family, time when they are sick, to make these posts. Hug a Blogger. ��

    Thursday, July 3, 2014

    My Quest by Care360

    Back in 2011, I bragged about how Quest Diagnostics gives patients their test results through their app. I happily study each report to understand my disease and hormonal levels.

    I have been disappointed, however, that when I arrived in California in late 2011, I was unable to access my results in a timely manner or in an app!  California law prohibited Quest from releasing these results to me. Since then, I have struggled waiting for my doctor to release results to me.  Why should I need to wait? I need these numbers to adjust medications quicker than a doc can return the phone call.

    Well, I paid a bill online with Quest Diagnostics, and I see a new message. They have a new app as their patient portal.  Instead of Gazelle, we have MyQuest by Care 360.  The system recognized my old user name and password. I saw this message when trying to request lab results:

    Based on California law, Quest Diagnostics is delaying release of test results for 14 days to allow your physician time
    to review your test results.

    Hot diggity!  This is something new!  Oh, I have so much relief now knowing that the minimum I will wait is 14 days after the date of labs.

    Well, this day just got a little sweeter.


    Why is this a big deal?  Patients are becoming more confident and informed consumers in the medical marketplace. In addition, those of us plagued by chronic illness need every bit of information about our case at our disposal, to pass along to other medical providers as needed. In addition, patients will research ever line item on the lab report to ensure they understand the result from each test. Doctors are notoriously for telling a patient the results are normal.  Many times, even when cortisol levels are tested and abnormally high, doctors dismiss them as normal.  No Cushie should have their life and diagnosis delayed because the doctor misread or didn't value that abnormal results, or even still, *know what to do with this abnormal test*!  Patients must keep a file and stay informed.  Know one will care more for your health than you.


    Monday, June 30, 2014

    ** Measure cortisol on a smartphone **

    The Cushing's community has bemoaned the absence of any cortisol-measuring device for the patient's use. Now after my bilateral adrenalectomy, it is critical that I know what my cortisol levels. I must adjust my hormone replacement, avoid taking too much and giving myself Cushing's, and worse, taking too little and suffering adrenal crisis. We are desperate for a way to measure cortisol levels outside a lab setting. We need tests results quickly.

    Here is the recent announcement for a cortisol-measuring device.  After this gets FDA-approval, it will save lives. Such a burden will be lifted for me, my family, and the entire Cushing's community.

    ""When cortisol levels are overlooked too many people suffer and die because of excess or insufficient cortisol," said Joel Ehrenkranz, MD, director of diabetes and endocrinology at Intermountain Medical Center, and lead researcher of the project.

    To help solve this problem, researchers developed a simple saliva test that uses a smartphone and an attached device that inexpensively feeds the results of a saliva test into the smart phone. An app then quantifies and interprets the results of a salivary cortisol assay and gives results in five minutes at the point of care."

    Sunday, June 29, 2014

    Facial Recognition: Hope for Cushies?

    Because Cushies can have very specific body changes, such as moon facies, red cheeks, supraclavicular pads, this type of disease database can help an ailing yet undiagnosed Cushie. Also, the technology could easily be expanded to help adults as well as children.

    *~* Your Family Photo Facebook Album Could Help Doctors Diagnose if Your Child Has a Rare Genetic Disease *~*

    Digital photos are proving to be important medical tools to help doctors diagnose rare genetic disorders in children. "The future of medicine can live in a selfie."

    Saturday, May 17, 2014

    Do you have an emergency shot?

    It is of the utmost importance that people with bilateral adrenalectomies are prescribed and carry Solu cortef injections with them at all time.

    I recently took a pill among BLAers, and 10 of 60 patients were not given prescriptions for the emergency injections. Many endocrinologists refused to prescribe them and some even were chastised for their silliness in asking.

    I was furious. 

    This was my reply:

    "Very simply stated in words an endocrinogist should understand:

    **A person with no adrenal glands need a Solu Cortef emergency injection like a type one diabetic needs an glucagon emergency shot. No excuses. No leeway. **

    For those without the emergency injection, I want you to know that those with it always have it available in the house AND take it with us wherever we go. We carry two needles, Solu cortef actovial medication, crisis letter from our doctor about treatment in the hospital, plus additional info to advise ambulance personnel or even the emergency room staff how to treat adrenal insufficiency. 

    Ask your nurse and doctor friends if they know where the adrenals are. Then ask them what they do. People don't know. It's sad and shocking but true. Not even the nurses and doctors in the emergency room know what to do in the event of your adrenal insufficiency or crisis. Many in this group of 95 have horror stories about ER hospital staff refusing to give Solu cortef, refusing to read/ disregarding the crisis letters from my doctors. Some refuse to take patients back quickly to check blood pressure, and instead leave them in the waiting room for hours. ER staff thinks you have the flu or a bad stomach but when you vomit uncontrollably, or they label you a drug seeker. 


    There is no reason besides ignorance and stubbornness for them to treat us like that.

    The *one* safeguard we have is to save ourselves by keeping the shot with us at all times and ensuring those closest to us can administer that shot to us. Some lose consciousness with adrenal insufficiency, while many get very confused and can't manage to do the shot themselves.

    I have not met 85% of you, I know. However, I would be devastated if we lost any of you.  I will tell your family to sue the doctor if you die. Not giving a BLAer an emergency shot is a malpractice suit waiting to happen. Try telling the doctors that. 

    While I will tell your family, that's just a lot of tears and worry for me and your family!  Please I ask you to insist on getting an injection with refills and stay alive. 

    Don't make me stress dose with my Solu cortef actovial 100 mg injection."

    Friends posted this letter from the National Association for Rare Diseases for care in emergency rooms (link) as well as a letter to doctors who refuse to prescribe the Solucortef medication. This can save a person's life.