Tuesday, December 2, 2014
Well, what do I say? That is a long and complicated answer. I have been sick for decades. How do retell that long story? How much does she want to know? How much should I drop in the lap of an unsuspecting cousin?
Right that moment, I began to tap out a reply on my iPhone. I just wrote and wrote. I guess you tell your story by just spitting it all out. You just tell the whole thing -- without shame, without embarrassment. To know me is to know the story of my life. It is long and complicated but it is important. I am important. Sick or well, I am important.
I don't want sympathy. I don't need pity.
I only want compassion that is given freely to any other human. What about the ones you love as friends or family?! I only want the compassion that I give to be returned. I don't like Cushing's. I hate it, in fact. However, I know I love my life with true intentions. I give compassion more freely now that I have lived this life. I want people to not be afraid of me and to stop avoiding me because they don't understand my disease or my life now. For those reasons, I told my story with truth and honesty.
I had two tumors on a part of my brain called the pituitary. It hangs below the brain and controls all hormones or chemicals in the body. It is called the master gland. Well, I was very sick for at least a decade and didn't know why. In April 2007, I found the disease Cushing's on the computer. I read and read. I cried. Instantly, I knew I had this disease. So for the next seven years, I have been testing for diagnosis and re-diagnosis to convince the doctors and surgeons I indeed had this super rare disease where the pituitary hormone ACTH works with the hormone cortisol from the adrenal gland to respond to stress in a loop. We know now that Cushing's is not as rare but rarely diagnosed. I had my first pituitary brain surgery in June 2009. The neurosurgeon went through my nose to the center of my head where the pituitary sits. The tumor was removed but I kept producing the hormone cortisol in excess, and that hurt all my organs and kept me very sick. I tested again. I sought help from a Cushing's specialist in Los Angeles, CA after many friends online finally got help from him. My second pituitary brain surgery was in April 2011. Again, tumor and extra cells under the pituitary were removed, but I still felt sick and was not cured. I tested again to confirm cortisol excess in my body. Indeed, I still had Cushing's and my results kept getting higher each time I tested. In August 2012, I tried a medication ketoconazole to lower my cortisol. That did the job but it pushed the cortisol I needed to live every day too low, and I was bedridden and could not wake up during the day. I had to take Ritalin or a stimulant in the am in order to counter the effects of lowering my cortisol at night which left me little cortisol to get through the day. It was a daily struggle to take care of myself and my small child at home. Cooking, cleaning, and self care were impossible. I used every bit of energy to care for my child and I had little left to do anything else. I struggled with this every day until October 2013. I had enough. The Food & Drug Administration (FDA) put limitations on long-term use of Ketoconazole due to the prevalence of liver damage. The drug had already been outlawed in the European Union. I waited as long as I could but I couldn't wait any longer. Cortisol was destroying my life and my body. I began testing for excess cortisol in early November 2013, and my cortisol levels in urine, blood and saliva were the highest I had ever had and definitely proved that my body was flooded with cortisol. It was time to end cortisol production once and for all. On New Years Eve 2013, I had a bilateral adrenalectomy or BLA, the removal of both adrenal glands that produce cortisol. While this fixed my Cushing's disease, it gave me Addison's disease. I don't produce excess cortisol. Now I produce no cortisol. The body needs cortisol! You make it and don't even know about it! I will take medication daily for the rest of my life to replace the hormones not made by my damaged pituitary gland. I take medication to replace the hormones my adrenal glands make. If I forget these adrenal medications, I could die within 24 hours. The body must have cortisol to function. I must take my meds daily and at the same times. I have struggled hourly and daily to find the right amount of medication that matches my body's needs. I get blood tests often to check my hormone levels. It has been very difficult for me, my husband, and my young daughter, and even my parents who come from out of state to help when they can by staying a few weeks to a month to help my family with the daily things I can no longer do because of the damage that Cushing's and high cortisol has done. Then and now, I suffer from muscle weakness all over my body, bone pain, back pain, extreme fatigue, osteopenia, anxiety, depression and other mental disturbances, insomnia, and other things I can't even remember I suffer from because my brain is always foggy.
What I know for sure is that I am a fighter. I will continue to fight for myself and my family who supports me daily with hugs, love, and laughs. I am an advocate to help people get diagnosis and treatment sooner. I have maintained a blog since 2008 at http://cushingsmoxie.blogspot.com because back in those days, an internet search for Cushing's produced more results for dogs and horses than humans. Well, the blog is a success with over 600,000 hits total. Many patients have contacted me through the years, and we have gotten them to diagnosis and surgical treatment. I speak to hundreds of patients a week to answer questions about testing, surgery, and surviving a life and body flooded with cortisol. They learn from me and I learn from them. This disease is very complex, very nuanced. The story is different but the damage is the same. As patients, we take care of one another. We provide a safety net where none existed before. We are ill but united. As I move forward every day, I know I am doing my best. I take a set amount of cortisol and aldosterone replacement daily. If I get stressed, my body uses up that set amount and my body has no cortisol to run basic body functions. Therefore, I avoid stress at every turn. I don't watch the news. I stay away from people who bring me down. I am fighting to fill my life with more joy and less junk. I'm looking for a sort of bliss that comes after years of being in bed, not being myself, not doing what I wanted to do. My thoughts and actions focus only on that: BLISS.
Wednesday, October 29, 2014
SAVE THE DATE
You are cordially invited to attend Pituitary Network Association's Gentle Giant Award Dinner. Join us in honoring Dr. Daniel Kelly for his exemplary accomplishments in the field of pituitary medicine. Dr. Kelly is a long time supporter and trusted adviser to the PNA. Dr. Kelly, a board certified neurosurgeon, is Director of the Brain Tumor Center at Saint John's Health Center and Professor of Neurosurgery at John Wayne Cancer Institute. Considered to be one of the top neurosurgeons in the US and a recipient of the Patients' Choice Award for the last 3 years, Dr. Kelly is internationally recognized in the field of minimally invasive keyhole surgery for brain, pituitary and skull base tumors. As a practicing neurosurgeon for over 20 years, he has one of the world's largest series in endonasal surgery with over 1600 procedures performed including over 700 endonasal endoscopic surgeries, and over 1600 craniotomies for brain and skull base tumors. His current surgical practice encompasses the full spectrum of brain and skull base tumors, both benign and malignant, treated with minimally invasive and conventional approaches.
Friday, January 30, 2015
Registration begins at 5:30
Cocktail Reception 6:00 - 7:00
Dinner Seating 7:00
Gentle Giant Award Dinner
Loews Santa Monica Beach Hotel
On Saturday January 31, 2015, please join the Pituitary Network Association and Saint John's Health Center for a series of pituitary and hormonal patient education seminars presented by some of the top physicians of pituitary and hormonal medicine. The symposium faculty will share the most up-to-date information and be available to answer your most pressing questions. You won't want to miss this unique opportunity.
Saturday, January 31, 2015
Loews Santa Monica Beach Hotel
1700 Ocean Avenue
Santa Monica, CA
Registration is available for both events. The Award Dinner is $50 per person or $80 for two (bring a friend or loved one and receive a discount of $20 on the purchase of 2 tickets). The patient symposium registration fee is $30 and includes continental breakfast and lunch.
Preliminary agenda, more details to follow.
Opening remarks – Dr. Daniel Kelly
Pituitary Disorders and the Effects on the Family – Robert Knutzen
Epidemiology of Pituitary Tumors – Dr. Sylvia Asa
Defining Clinically Significant Pituitary Disease – Dr. Shereen Ezzat
Hormones: A General Presentation – Dr. Pejman Cohan
Treatment Options: Endoscopic Pituitary Surgery – Dr. Daniel Kelly
Patient Advocacy – Learning To Be Your Own Best Advocate –Sharmyn McGraw
Question and answer session with Symposium faculty
Closing Remarks – Dr. Daniel Kelly
Monday, October 27, 2014
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.*
TESTED MY CORTISOL
12/2007. First diagnosis -- pituitary surgery; delayed while I tried to become pregnant.
09/2008. Darling baby arrives.
06/2009. Pituitary surgery #1.
TESTED MY CORTISOL
04/2009. Pituitary surgery #2.
TESTED MY CORTISOL
07/2012. Started ketoconazole.
TESTED MY CORTISOL
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
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
Abstract- See more at: http://istart.org/startup-idea/consumer-goods-life-sciences/handheld-cortisol-sensor-for-ptsd/24000#sthash.tIzmUwin.dpuf
Ask me! I'll participate. I have over 100 friends who have no adrenal glands. Let us test the device with you.
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: a recent update.
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.
PMID24723204 [PubMed - in process]
PMCIDPMC4179985 [Available on 2015/10/1]
Related CitationsShow all
- Recent advances in cortisol sensing technologies for point-of-care application.
- Mediator and label free estimation of stress biomarker using electrophoretically deposited Ag@AgO-polyaniline hybrid nanocomposite.
- A low-cost miniaturized potentiostat for point-of-care diagnosis.
- A sensitive direct enzyme immunoassay for cortisol in plasma and saliva.
- Classic and recent etiologies of Cushing's syndrome: diagnosis and therapy.
- 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.
Wednesday, October 1, 2014
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
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:
- 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
- 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
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.
Page last updated September 24, 2012
Monday, September 15, 2014
Hollywood has it wrong: I'm a teenager with an illness, and it's not glamorous at allhttp://www.washingtonpost.com/opinions/hollywood-has-it-wrong-im-a-teenager-with-an-illness-and-its-not-glamorous-at-all/2014/09/12/b9154a7e-38f9-11e4-8601-97ba88884ffd_story.html