Thursday, June 30, 2011

FDA Accepts Submission of New Drug Application for CORLUX for Cushing's Syndrome

MENLO PARK, CA, Jun 30, 2011 (MARKETWIRE via COMTEX) -- Corcept Therapeutics Incorporated (NASDAQ: CORT), a pharmaceutical company engaged in the discovery, development and commercialization of drugs for the treatment of severe metabolic and psychiatric disorders, today announced that the U.S. Food and Drug Administration (FDA) has accepted for filing the New Drug Application (NDA), which was submitted on April 15, 2011, for CORLUX, a glucocorticoid receptor type II (GR-II) antagonist, for the treatment of the manifestations of Cushing's Syndrome.

The FDA has indicated that this application will receive a standard review and that the Prescription Drug User Fee Act (PDUFA) goal date for completion of its review is February 17, 2012.

We are executing our commercial plans related to CORLUX for the treatment of Cushing's Syndrome based on the projected timeline for the FDA review of our NDA. This includes conducting market research and engaging third-party vendors to support distribution and other logistical needs for product launch, if CORLUX is approved by the FDA.

"Many patients with Cushing's Syndrome suffer debilitating manifestations of their disease, despite receiving the best available treatment," said Joseph K. Belanoff, M.D., Chief Executive Officer at Corcept. "In our Phase 3 study, CORLUX demonstrated its potential to significantly improve the clinical condition of these patients in a wide variety of important ways. We believe that CORLUX has the potential to provide a meaningful advance over the current standard of care for patients with Cushing's Syndrome and are gratified to receive the formal notice of the FDA's acceptance of the NDA for filing."

About Cushing's Syndrome

Endogenous Cushing's Syndrome results from prolonged exposure of the body's tissues to high levels of the hormone cortisol generated by tumors. Cushing's Syndrome is an orphan indication which most commonly affects adults aged 20 to 50. An estimated 20,000 people in the United States have Cushing's Syndrome, with more than 3,000 newly diagnosed patients each year. Symptoms vary, but most patients have one or more of the following: diabetes mellitus, high blood pressure, weight gain, a rounded face, increased fat around the neck, severe fatigue, weak muscles, osteoporosis, skin changes, infections, poor quality of life irritability, anxiety and depression.


Corcept's first-generation compound, CORLUX, also known as mifepristone, directly blocks the cortisol (GR-II) receptor and the progesterone (PR) receptor. Intellectual property protection is in place to protect important methods of use for CORLUX. Corcept retains worldwide rights to its intellectual property related to CORLUX.

About Corcept Therapeutics Incorporated

Corcept is a pharmaceutical company engaged in the discovery, development and commercialization of drugs for the treatment of severe metabolic and psychiatric disorders. The company has completed its Phase 3 study of CORLUX for the treatment of Cushing's Syndrome, and has an ongoing Phase 3 study of CORLUX for the treatment of the psychotic features of psychotic depression. Corcept also has a Phase 2 program for CORT 108297 and an IND-enabling program for CORT 113083. Both of these novel compounds are selective GR-II antagonists -- compounds which block the effects of cortisol but not progesterone. Corcept has developed an extensive intellectual property portfolio that covers the use of GR-II antagonists in the treatment of a wide variety of psychiatric and metabolic disorders, including the prevention of weight gain caused by the use of antipsychotic medication, as well as composition of matter patents for our selective GR-II antagonists.

Statements made in this news release, other than statements of historical fact, are forward-looking statements, including, for example, statements relating to the potential benefit of CORLUX for patients diagnosed with Cushing's Syndrome, commercialization plans for CORLUX for the treatment of Cushing's Syndrome, the timing of completion and outcome of FDA review of the NDA, Corcept's clinical development and research programs, the timing of introduction of CORLUX and future product candidates, including CORT 108297 and CORT 113083 and the ability to create value from CORLUX or other future product candidates. Forward-looking statements are subject to a number of known and unknown risks and uncertainties that might cause actual results to differ materially from those expressed or implied by such statements. For example, there can be no assurances with respect to the cost, rate of spending, completion or success of clinical trials, of the timing of completion of the FDA's review of the NDA for CORLUX in Cushing's Syndrome, that the results of FDA's review will be favorable or that Corcept will pursue further activities with respect to the development of CORLUX, CORT 108297, CORT 113083 or any of its other selective GR-II antagonists. These and other risk factors are set forth in the Company's annual report on Form 10-K for the fiscal year ended December 31, 2010 and subsequent SEC filings, all of which are available from our website ( or from the SEC's website ( We disclaim any intention or duty to update any forward-looking statement made in this news release.

INVESTOR CONTACT:Joseph K. Belanoff, M.D.Chief Executive OfficerCorcept Therapeutics650-327-3270Email ContactMEDIA CONTACT:Edie DeVine415-365-8543Email ContactFrom

Wednesday, June 29, 2011

Glucocorticoid- and Androgen-Secreting Black Adrenocortical Adenomas: Unique Cause of Corticotropin-Independent Cushing Sydrome

Glucocorticoid- and Androgen-Secreting Black Adrenocortical Adenomas: Unique Cause of Corticotropin-Independent Cushing Sydrome

Glucocorticoid- and Androgen-Secreting Black Adrenocortical Adenomas: Unique Cause of Corticotropin-Independent Cushing Sydrome

Journal Endocrine Practice
Publisher American Association of Clinical Endocrinologists
ISSN 1530-891X (Print)
1934-2403 (Online)
Subject Health Services, Medical Sciences and Endocrinology
Issue Volume 17, Number 3 / May-June 2011
Pages e73-e78
Online Date Thursday, June 23, 2011

Satoshi Tanaka, MD, PhD1, Akiyo Tanabe, MD, PhD1, Motohiko Aiba, MD, PhD2, Naomi Hizuka, MD, PhD1, Kazue Takano, MD, PhD1, Jun Zhang, MD3, William F. Young, MD, MSc, Jr.4

1Department of Medicine, Tokyo Women's Medical University, Tokyto, Japan
2Department of Clinical Pathology, Tokyo Women's Medical University Medical Center East, Tokyo, Japan
3Department of Anatomic and Clinical Pathology, Mayo Clinic, Rochester, Minnesota
4Division of Endocrinology, Diabetes, Metabolism, and Nutrition, Mayo Clinic, Rochester, Minnesota


Objective: To describe the unique association of corticotropin-independent Cushing syndrome caused by cortisol- and androgen-secreting black adrenal cortical adenomas with myelolipomatous change.

Methods: We report the clinical, laboratory, radiologic, and pathologic findings from 2 patients who presented with androgen excess and typical signs and symptoms of Cushing syndrome.

Results: Endocrine investigations showed high serum cortisol concentrations that lacked diurnal rhythm, undetectable plasma corticotropin concentrations, and absence of serum cortisol suppression after overnight dexamethasone suppression tests. Serum levels of adrenal androgens were elevated. Computed tomography of the abdomen revealed unilateral adrenal masses (largest lesional diameters 4.0 and 3.1 cm). On the basis of the plurihormonal hypersecretion and the imaging characteristics, adrenocortical carcinoma was considered as a possible diagnosis. However, histopathologic analysis in both patients revealed black adrenal cortical adenomas with myelolipomatous change. After surgery, adrenal androgens normalized, and the signs and symptoms of Cushing syndrome and androgen excess resolved. There was no evidence of recurrent disease at last follow-up.

Conclusions: A unique form of corticotropin-independent Cushing syndrome is described: cortisol- and androgen-secreting black adrenal cortical adenomas with myelolipomatous change. Although most patients with corticotropin-independent Cushing syndrome associated with androgen excess prove to have adrenocortical carcinoma, the clinician should be aware of the possibility of benign, black adrenal adenomas in this clinical setting.

Show References


Tuesday, June 28, 2011

Paternal deprivation prior to adolescence and vulnerability to pituitary adenomas

L. G. Sobrinho, J. S. Duarte, I. Paiva, L. Gomes, V. Vicente and P. Aguiar

DOI: 10.1007/s11102-011-0324-1

It has been reported that women with prolactinoma were exposed, early in life, to an environment characterized by an absent or violent father.

The present study was designed to evaluate whether paternal absence or violent paternal behavior were more prevalent in patients with pituitary adenomas (prolactinoma, acromegaly, non-secreting adenoma and Cushing’s disease) compared to a control population.

We conducted an observational case–control multicenter study. We interviewed 395 patients with prolactinoma (296 females and 99 males), 130 with acromegaly (87 females and 43 males), 237 with non-secreting adenoma (144 females and 93 males) and 68 with Cushing’s disease (61 females and 7 males) and 365 patients from the same clinics with nodular thyroid disease or lymphocytic thyroiditis with euthyroidism as controls.

Violent or absent fathers were significantly more prevalent in patients with prolactinoma or acromegaly than in controls (P = 0.001 and P = 0.002, respectively) but not in patients with non-secreting adenoma or corticotrophinoma.

Absent fathers in prolactinoma and acromegaly versus controls: P = 0.001 and P = 0.119. Violent fathers in prolactinoma and acromegaly versus controls: P = 0.069 and P = 0.001. The prevalence of absent or violent fathers was also significantly higher in prolactinoma and acromegaly when compared to non-secreting adenoma (P = 0.039 and P = 0.033, respectively).

Paternal deprivation before adolescence may be a risk factor for prolactinoma and acromegaly but not for non-secreting pituitary adenomas or Cushing’s disease.

Keywords  Acromegaly – Paternal deprivation – Pituitary adenomas – Prolactinoma

This study is conducted for the Grupo de Estudos de Tumores da Hipófise (GETH).

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Wow! I'm luckier than I thought...

A snippet from Pfizer Files With The FDA For Review Of Axitinib For Patients With Advanced Renal Cell Carcinoma

Each year, approximately 210,000 people worldwide are diagnosed with kidney cancer and nearly 102,000 people are expected to die from the disease. Within the last five years, great advances have been made in the treatment of patients with advanced RCC, the most prevalent form of kidney cancer. However, five-year survival rates for patients with advanced RCC remain low, at around 20 percent.

I've been NED for just over 5 years now...

I'm so glad that there are drugs coming out for kidney cancer now.  When I had my surgery, my surgeon patted me on the hand and said not to worry, that I'd just have the surgery but no chemo.  What he DIDN"T tell me was that, at that time, there was NO chemo that would knock this beast out.

I'm glad he didn't tell me the whole story then.  I was panicked enough.  But Im sure glad that people are working on new treatments, just in case.

Now, if they could get started on something better for Cushing's, too...

Saturday, June 25, 2011

Added to the Cushie Bookstore again...

Added to the Cushie Bookstore again:

MaryO'Note: I don't usually write, or post, book reviews, but I just love this book and I'm so glad to see it back in print. I've owned this before my Cushing's days, when I "just" had osteoarthritis - another disease I wasn't supposed to have, at least at my young age.  This book gave me such hope and inspiration when I felt I was so alone with my "stuff".  It still sits on my bedstand and I read it when I'm feeling down and helpless.

I've bought copies for everyone I know who might benefit from this - and that's practically everyone!  Because it's an older book, I got lots of copies at second hand book stores and gave them to all my friends.

So, I'm glad to see that it's listed on amazon again and anyone can get it brand new .

We Are Not Alone: Learning to Live With Chronic Illness by Sefra Kobrin Pitzele

chronic-illness Book Description
This is an essential layperson's guide to coping with chronic illness-- or the 50 million Americans who suffer from diseases such as arthritis, diabetes, and multiple sclerosis, and for the people who care for them.

With firsthand insights of one who has been there, Sefra Pitzele details every phase, from the frightening onset of disease through the process of readjustment to the successful adaptation to new norms. She addresses the issues that most concern the chronically ill: dealing with relationships; participating in sexual activities; helping your doctor help you; managing pain and depression; maintaining humor and dignity; more. She details adaptive living strategies from new ways to shop and cook to ingenious modifications at home and at work. There are nationwide listings of helpful organizations, support groups, products, and services. 44,000 copies in print.

About the Author
Sefra Korbin Pitzele is Secretary of the National Sjogren's Syndrome Association and serves on the Operations Committee of the Minnesota Chapter of the Lupus Foundation of America. She is co-founder, co-publisher, and Vice President of ADVANTAGE: A Magazine for People with Chronic Health Conditions. She is often the featured speaker at healthcare conferences and on radio and television shows.

New Video: Cushing's Syndrome vs. Addison's Disease

Wednesday, June 22, 2011

Check-Up: Cushing's Syndrome


I’ve been diagnosed with Cushing’s syndrome which my doctor says is the result of many years of steroid use for rheumatoid arthritis. 

Cushing’s syndrome is a disorder that occurs when your body is exposed to high levels of the hormone cortisol. As in your case it can be caused by taking too much corticosteroid medications. These drugs are used to treat chronic conditions such as rheumatoid arthritis and asthma. Other people develop Cushing’s syndrome because their bodies produce too much cortisol, a hormone normally made in the adrenal gland.

Causes of too much cortisol produced by the body include Cushing’s disease (in which the pituitary gland makes too much of a hormone called ACTH, which in turn promotes the production of increased levels of cortisol). Tumours of the pituitary gland, adrenal gland or elsewhere in the body may also cause high levels of cortisol.

I’ve put on an awful lot of weight, especially around my tummy and face. 

Most people with Cushing’s syndrome will develop upper body obesity while their arms and legs remain thin. Typically, the face becomes round and full. Skin changes are common with purple marks (striae) on the skin developing on the abdomen, thighs and breasts. The skin may thin and bruise easily. Muscle and bone changes may occur which can result in backache, bone pain and tenderness. There may also be a marked collection of fat between the shoulders. Women with Cushing’s syndrome may experience excess hair growth and menstrual cycles may become irregular or stop altogether. Men may experience a decrease in fertility, libido problems and impotence. Both sexes may suffer from depression, anxiety, fatigue, headache and high blood pressure.

Will I need a lot of tests to confirm the diagnosis? 

Tests to confirm the diagnosis may include blood and urine tests in addition to abdominal and bone scans. Treatment will depend on the cause. Cushing’s syndrome caused by corticosteroid use will involve slowly decreasing the drug dose (if possible) under medical supervision. If the medication cannot be discontinued, blood sugar, cholesterol levels and bone health will be closely monitored.

Cushing’s syndrome caused by a pituitary or other tumour that releases ACTH will be surgically removed. In some cases, radiation therapy may be required.

Following surgery, long-term cortisol replacement therapy may be required. Cushing’s syndrome due to an adrenal or other tumour will also be removed by surgery.

If the tumour cannot be removed, medications to help block the release of cortisol are prescribed.


Tuesday, June 21, 2011

Next Interview, Thursday June 23 at 9:00 PM eastern with Pat Gurnick

ry O'Connor

Listen to CushingsHelp on internet talk radio

The Call-In number for questions or comments is (646) 200-0162.


My name is Pat Gurnick. I had a Pituitary Tumor (Cushing's Disease) removed  (Macro 1.4 size) by Dr. Kelly at UCLA.

This has been a long journey for me. In 1990 I was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Fibromyalgia, and Environmental Illness/Multiple Chemical Sensitivities. I was a Needs Assessment and Referral Counselor at Charter Hospital. I than went to work for Brotman Hospital as a Drug and Alcohol Counselor, with their day treatment program for Chronic Mentally Ill Substance Abusers, but by 1992 I was so ill I went on disability. I could not read or write for over a year, so sick. I started a support group, WEBSITE ( and phone hotline in 1993, to give myself a reason to live. I had such cognition difficulties and fatigue, to name a few symptoms, that I don't honestly know how I achieved this!

In 1994 I thought I was in remission, little more functional and decreased Fibromyalgia pain; yet, I also went through premature menopause at that time, age 35 (I am 45 now), which I now found out was the cause and beginning of a Pituitary Tumor/Cushing's Disease! I was single and I had no children. My doctor figured this is when the tumor developed/high cortisol, to compensate for my crashed adrenals (HPA Dysfunction common to CFIDS Patients).

I tried so hard to lose the weight all those years, and the past few years people were always asking me when I was "due" for my stomach was so distended. In addition, I was anxious and depressed, experienced nausea most of the time, facial hair, moon face, hump/fat pads ,and many of the other Cushing's effects. The Rheumatologist just attributed this all to getting older and osteoporosis (which I had a severe case by this time due to Cushing's - little did I know!).

No one picked up on the Tumor situation until last October, 2003. I had other health problems, especially mold injury (from water damage in my home) and had to leave with basically the clothes on my back in August. My life was upside down. I was stressed and went to see a chiropractor to ease my tight neck. I knew something was wrong when the x-rays showed fat pads not bone as my old Rheumatologist had claimed.

By October 2003 a New doctor (been to so many through these years trying so many things to get well) wanted me to have an MRI done when I showed him my x-rays and told him of my concerns. I was not willing to give up and attribute it to old age! He stated he thought I had Cushing's disease and wanted to test me. The tumor was clearly seen on the scans, and Cushing's Disease confirmed. I had gained 40 pounds by this time, and looked totally different, as you can imagine.

After I was diagnosed, I went to many healers, tried holistic things, which didn't heal me, but got me in good shape for surgery a year later. Thank God it was a slow growing tumor, because it was close to my eyes and sinuses, and waiting any longer would have been detrimental to my health. I had surgery performed December 17, 2003, at UCLA with Dr. Kelly. He has been very kind and patient with me while I tried alternative treatment, knowing surgery would be eminent.

As for my hospital experience, 2x's I had adrenal insufficiency and was terrified. I had no idea what to expect, fainting on the floor, staff all around me when I woke up, going in and out of consciousness, frightened I would go to sleep and never wake up, wanting to throw up all the time, could not walk, dependent on oxygen mask (trouble breathing) and I.V., using a bed pan, and had a longer stay than anticipated. Plus, hurting from stitches on my stomach, and was told was used for fat during surgery; had cerebral brain fluid leakage and titanium mesh was placed in my head. Little did I know that was only the beginning. I did not understand the post-op situation (cortisol withdrawal symptoms, medication side effects, emergency bracelet, light headedness, to name a few).

So, I have been looking for answers and finally found you all! I am not alone! It is ONE DAY AT A TIME now, and I am looking forward to better days ahead.

Update: April 15, 2004

I am a wreck since surgery, going from depression to anxiety, hormones bouncing off the walls. hot flashes, cognition problems, incontinence (cortisol weakens muscles including the bladder), and sometimes crippled to the point I cant even stand to brush my teeth. I am struggling with continual weakness, edema, painful/swollen hands and body. Now, ailments are popping up as the high cortisol decreases in my body. I have a fatty liver and gallbladder disease (cortisol can do this), Rheumatoid Arthritis (Cortisol can do this break down the muscles and joints), heart irregularities, high cholesterol, to name a few. Cortisol can cause so much damage, and I feel like I am left in pieces all over the floor, running from doctor to doctor to patch me up. Having little energy but dragging myself all over town to find some relief; hoping for a solution.

I have only lost 5 pounds but my mustache is gone, which is good news. Plus, my osteoporosis has gotten better and is now osteopenia status; in such a short amount of time. Taking out that tumor saved my life!

Update: December, 2004

It has been a year since my pituitary surgery. I have lost almost 40 pounds. I think more clearly and feel more confident. Look like a real woman again! Sure, I still have my mood swings, cortisol still low (but off cortef now), have phsycial pain (decreased 60% due to Lexapro antidepressant), fatigue (limits me on some days), and need to monitor my stress level or my immune system goes down quick and I get sick. My body is not the same. I am way more sensitive. But, I changed my lifestyle to fit my needs. I moved from Los Angeles to Boulder, Colorado, for the slower pace and beautiful mountains. My adrenals are not strong, and I have to be careful to take it easy or I have symptoms of adrenal burnout. However, I am so glad to be alive, mentally functioning, and taking walks again in nature!

Dr. Kelly at UCLA was fantastic, and I will always be grateful for his excellent expertise in ridding me of the tumor. I have a new chance in life. I do look over my shoulder, ever reminded that it can come back, having tests every 6 months for years to come. But, I have learned from this experience that really life is to be lived one day at a time anyhow. Appreciate each day as it comes, living in the moment, making the best of the time I have.

I look at life and love differently now. I left a stuck relationship, moved to a place that will bring me more peace and joy, empowered myself, being my best friend, having more fun and laughter in my life. I plan on continuing with my goals, which were stopped by the tumor, doing what matters to me instead of being co-dependent. I am important. I deserve the best. I have been given a 2nd chance and I will take it for all it is worth!

Update: September 16, 2007

There isn’t a day that goes by when I don’t think of my experience with Cushing’s Disease. I remind myself that I don’t have the tumor anymore, than I look out at the sunshine lighting up day and take in a breath of fresh air, so grateful to be alive.

Yes, I catch myself from wandering back to the Cushing’s memories: when I felt like a Cherub, blown up and uncomfortable in my own skin, emotional, feeling like my blood was racing in my veins, breaking my toes, pimples like a teenager, and the dark mustache I knew everyone could see! I still look for those returning signs, relieved that they have not come back. I was told by my surgeon, Dr. Kelly, that the tumor would not return. When fear grabs me, during infrequent times of fatigue and a rush of anxiety, I reassure myself that these are only aftereffects not the tumor returning. I have my cortisol levels tested every year to confirm this fact, and my levels are normal. However, I went through ‘Post Traumatic Stress Syndrome’ from all the medical trauma I endured! It took 8 years for the doctors to finally diagnosis this disorder! You can imagine all the ailments they told me I had or that it was all in my head. I was running around to doctors begging for answers but feeling so discouraged, hopeless, and helpless. I tried many medications hoping for a solution, but none came. I did many holistic treatments, to no avail. Little did I know that I suffered from Cushing’s Disease/Pituitary Tumor!

One day I walked into a Rhumatologist’s office, Dr. David Hallegua, seeking help for my Fibromyalgia and Chronic Fatigue Syndrome, and the doctor exclaimed I also had Cushing’s Disease because of the obvious physical signs I exhibited. This is all a memory today. The once obvious ‘fat’ humps on my shoulders and neck are gone. I dropped most of the weight, my face structure is visible again, my hair healthy as is my skin, my moods finally balanced from the ‘bipolar’ roller coaster of emotions I previously tried to control - time healed this (I am not on any antidepressants), and my hormones are balanced without hormone replacement therapy. I know how lucky I am, believe me, I am thankful!

Yes, I have realized this illness has also given me an amazing gift, one of appreciation for every bird in the sky, every flower that bloomed, every whiff of baked bread, everyday I could walk by the Boulder Creek with vigor, and how I gradually was able to retain information to the point that I could multi-task again! Each little thing has been a blessing. I have much gratitude for being alive, remembering the days when I had Cushing’s but didn’t know it and negotiated with God dark agreements...looking back I am glad that I didn’t follow through. What lesson’s has this teacher left me with? I live in the moment now, present, not running to the past or the future, just appreciating today. Ah, I have today to live! I have come back into my body, proud of my curves, my soft skin, my long hair, my searching eyes, feeling the calm peacefulness that rests in my heart, and the relaxation in my body. It feels good to experience positive sensations, wanting to walk again around the block, to go shopping for clothes, taking a swim in the heat of the summer, all dressed up going to a dinner party with friends, taking meditation classes at the Boulder Shambhala Meditation Center. I have a social life again! For so many years I hid in my house, heavy, unhappy, and discouraged. I didn’t know I had an illness, and all I thought was, “who would want me like this?”. Yet, there was a sliver of hope, for I never stopped trying to figure out what was wrong, desperate to find a solution, knowing all along that I was NOT just fat and growing older, at the age of 35! My body was betraying me, that was clear. The lesson, to not give up, to have faith. My warrior came out in me. I became a stronger woman through all of this, and moved through the challenges that were dropped in front of me, bomb by bomb. I came through the surgery with flying colors, hard but I did it! Winning round one! Round two, dropping pound after pound of fat. Round three, learning how to walk and breathe easy again. Round four, winning the grand prize, learning how to relax, and to be happy that I am alive.

I was able to provide counseling services again , and opened my Psychotherapy practice in Boulder, Colorado, older and wiser. I specialize in helping those who are challenged by Chronic Illness, by phone, in person, or in the client’s home if they live in the Boulder area. I can always be reached at 303/413-8091 or

There is life after Cushing’s Disease!

Certified Lifestyle Counselor
Director,CEFCA Website Support


Pat's photos:


The only picture I have after Cushing's, a number of years ago, gained 25 more pounds since then. [Photographer: Pat's family]

Picture of me and my sister at Thanksgiving - right before surgery. [Photographer: Pat's family]

Picture of me at home, right after surgery, with my kitten sleeping on my stomach. [Photographer: Pat's family]

Picture of me with my Cat JACK 4 months after surgery.
You can see my face has gotten thinner, but my body is still Cushy. [Photographer: Pat's family]

April 2006 [Photographer: Pat's family]

Glad to be alive!!! September 2007[Photographer: Pat's family]


Recovery_from_Cushings.doc Download this file Watch on Posterous

Listen to CushingsHelp on internet talk radio

The Call-In number for questions or comments is (646) 200-0162.


Monday, June 20, 2011

Do You Blog About Your Health?

Tufts University Medical School: Patient Blogging Survey


Thank you for taking part in a Tufts University School of Medicine graduate research project to examine patient blogging.

Purpose of the Study: The purpose of this study is to examine the use of patient blogs.

What will be done: You will complete a survey, which will take 10-15 minutes to complete. The survey includes questions about your blogging history. We also will ask for some demographic information (e.g., age, marital status,education level) so that we can accurately describe the general traits of survey participants.

Confidentiality: Your responses will be kept completely confidential. We will NOT know your IP address when you respond to the survey. We will ask you to include an e-mail address when you complete the survey so that we can enter you in the drawing for the gift certificate. However, your e-mail address will not be stored with data from your survey. You will be assigned a participant number, and only that number will appear with your survey responses.

Benefits of this Survey: You will be contributing to knowledge about patient blogs. In addition, you will be entered in a drawing for one of two $25.00 gift certificates. After we have finished data collection, we will conduct the drawing. Winners will receive the gift certificate via e-mail.

Risks or discomforts: No risks or discomforts are anticipated from taking part in this study. If you feel uncomfortable with a question, you can skip that question or withdraw from the study altogether. If you decide to quit at any time before you have finished the survey, your answers will NOT be recorded.

Decision to quit at any time: Your participation is voluntary; you are free to withdraw your participation from this study at any time. If you do not want to continue, you can simply leave the survey site. If you do not click on the "done" button at the end of the survey, your answers and participation will not be recorded. You also may choose to skip any questions that you do not wish to answer. If you click on the “done” button at the end of the survey and enter your email address, you will be entered in the drawing.

How the findings will be used: The results of the study will be used for scholarly purposes only. The results from the study will be presented in educational settings and at professional conferences, and the results might be published in a professional journal.

Contact information: If you have concerns or questions about this study, you may contact the Principal Investigator, Dr. Libby Bradshaw, (617) 636-6946, Co-Investigator, Pamela Ressler, RN, MS-PREP candidate (, or faculty preceptor, Dr. Lisa Gualtieri ( If you have questions about your rights as a research study subject, call the Tufts Medical Center and Tufts University Health Sciences Institutional Review Board (IRB) at (617) 636-7512. The IRB is a group of doctors, nurses, and non-medical people who review human research studies for safety and protection of people who take part in the studies. Federal law requires the IRB to review and approve any research study involving humans.

By beginning the survey, you acknowledge that you are at least 18 years old, have read this information, and agree to participate in this research, with the knowledge that you are free to withdraw your participation at any time without penalty.


Take the survey here

Saturday, June 18, 2011

The newest book in the Cushie Bookstore

Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World

Battling a chronic disease can often be a lonely and frustrating ordeal. It doesn’t have to be. Alone in My Universe, compiled by Wayne Brown, presents a series of writings from patients suffering from acromegaly. Based on actual personal experiences, these narratives provide a primer of understanding for others dealing with this chronic, debilitating disease that affects many of the body’s systems. This collaborative effort, written by real people touched by acromegaly, attempts to raise awareness of this low-profile disease. Each patient tells his or her story as it relates to the disease and its complications.

Topics include the following:

• Handling pre-diagnosis frustration

• Dealing with fears of medical treatment and surgery

• Managing family issues and work issues

• Talking with children

• Managing negative energy

• Coping with good and bad days

• Living life each day With sympathy, empathy, and mutual support, Alone in My Universe shares the heartfelt stories of those suffering from acromegaly to show others that they are not alone in their battle.

MaryO'Note: This book is great for anyone with any orphan disease - it's not only for acromegaliacs!

Friday, June 17, 2011

Familial Pituitary Tumor Syndromes

Journal Endocrine Practice
Publisher American Association of Clinical Endocrinologists
ISSN 1530-891X (Print)
1934-2403 (Online)
Subject Health Services, Medical Sciences and Endocrinology
Pages 1-16
DOI 10.4158/EP11064.RA
Online Date Wednesday, May 25, 2011



Vladimir Vasilev, MD1, 2, Adrian F. Daly, MB, BCh, MSc1, Patrick Petrossians, MD1, Sabina Zacharieva, MD, PhD2, Albert Beckers, MD, PhD1

1Department of Endocrinology, University of Liège, Belgium
2Clinical Center of Endocrinology and Gerontology, Medical University, Sofia, Bulgaria


Objective: To summarize current knowledge on the clinical and genetic characteristics of familial pituitary tumor syndromes.

Methods: This review is based on comprehensive literature search through the English-language literature using "familial", "pituitary" "adenomas" and "tumors" as search terms.

Results: Familial pituitary tumors are rare and comprise approximately 5 % of all pituitary adenomas. Currently, there are four recognized inherited syndromes that involve pituitary tumorigenesis - multiple endocrine neoplasia type 1 (MEN 1) and type 4 (MEN 4), Carney complex and familial isolated pituitary adenomas (FIPA). MEN 1 and CNC have been known for several decades and their clinical and molecular characteristics have been comprehensively studied. Many familial cases of pituitary adenomas can be attributed to mutations in MEN1 and PRKAR1A genes. The recently defined MEN 4 is extremely rare. Familial pituitary tumors that are not associated with MEN 1 and CNC have been united under a new term introduced in the 1990's: FIPA. About 15-25% of FIPA patients harbor mutations in the AIP gene.

Conclusion: Although rare, familial pituitary tumors present an opportunity to study inherited molecular and genetic mechanisms of pituitary tumorigenesis. A comprehensive understanding of their characteristics may provide basis for better diagnosis and management of affected patients.

pituitary adenoma, multiple endocrine neoplasia type 1, Carney complex, familial isolated pituitary adenomas, FIPA

Show References



More about Zebrafish

The original article, Targeting zebrafish and murine pituitary corticotroph tumors with a cyclin-dependent kinase (CDK) inhibitor

Zebrafish And Cushing Disease - New Model Taps Tiny, Common Tropical Fish For Large-Scale Drug Screening To Combat Cushing Disease

A common, tiny tropical fish plays a key role in a new model for Cushing disease, giving researchers a powerful tool to conduct extensive searches for effective treatments for this serious hormonal disorder, testing up to 300 drugs weekly.

The model - published online on May 2 by the Proceedings of the National Academy of Sciences -- was created in the laboratory of Shlomo Melmed, MD, dean of the medical faculty at Cedars-Sinai, by his research team led by Ning-Ai Liu, MD, PhD.

They introduced into striped zebrafish - the freshwater translucent tropical Danio rario -- the "pituitary tumor transforming gene" discovered in Melmed's lab in 1997. This caused the zebrafish to develop features of Cushing disease including: high levels of the stress-related hormone cortisol; diabetes; and heart disease. These zebrafish then were bred with fish that bear green fluorescent markers, allowing researchers to visualize in the resulting hybrids how drugs interact with the Cushing's disease pituitary tumors.

"This new model for Cushing disease means that we can more rapidly and effectively identify drugs that could be successful in fighting these tumors," Melmed said. "With no current drug therapies and limited options available to Cushing patients, it is our hope that our research will enable medical advances that will revolutionize how this disease is treated."

Cushing Disease often is caused by a pituitary tumor that triggers overproduction of a hormone, which, in turn, stimulates the adrenal gland to overproduce cortisol, affecting nearly every area of the body including the regulation of blood pressure and metabolism. This leads to serious health problems, including diabetes, hypertension, osteoporosis, obesity (especially with a distinctive moon face and fatty tissue deposits in the midsection, upper back and between the shoulders) and cardiovascular disease.

There are no approved drugs that effectively target the pituitary tumors that frequently cause the disease. "Because the tumors can be too small to be detected by MRI and a complete tumor resection by surgery can be difficult in some cases, this leaves few treatment options for many with the disease," said Dr. Liu, an endocrinologist at Cedars Sinai.

In the initial test of the zebrafish model, researchers studied five drugs, including R-roscovitine, a drug in phase two trials to treat esophageal and non-small cell lung cancer. This drug was found to effectively suppress levels of hormone secreted by the pituitary tumor, as well as the level of cortisol and could be a potential treatment for fighting tumor growth.

The study was supported by a National Institutes of Health Grant and the Doris Factor Molecular Endocrinology Laboratory.

Cedars-Sinai Medical Center


Tuesday, June 14, 2011

Rest In Peace, Sarah!

Sarah recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing's Disease.  She died on June 13, 2011 after a brief illness at the age of 28. 
More information will be provided when it becomes available.

Sarah F's mom posted this: "we will be setting up an account at the royal bank tomorrow afternoon for sarah. we are planning on having a bench put in her name at transfer beach in ladysmith after we get her home. if you would like to help you can make a donation instead of sending flowers. we will post when we have everything set up. thank you everyone for your support and kind words for sarah....."

Cushing's Tips

Things I've learned and wanted to share

By LindaP, with a little help from other Cushing's Message Board members. This is a continuing list, if you want to share.

I have learned so much on this Cushing's journey, much of it from all of you and this site. I wanted to share those learnings, in the event that it helps anyone else.

Obviously - my own opinions here!

My best wishes to everyone on their Cushing's journey.



1. Trust your instincts.

2. Trust your instincts some more.

3. Do your research – read everything you can, talk to people, use this website and the message boards. Slog through research papers. Not all of it will make sense, but it is amazing how much you can learn, and how much it will help you on your diagnostic journey.

4. Not everyone will have every one of the “typically described” symptoms of the hump, moon face, straie, and central obesity. Some people get them all, some people get some, and others don't develop these signs.

5. While substantial weight gain is very common with Cushings, there are some people who have only mild or moderate weight gain. What seems to be the common thread, however, is the inability to lose it in spite of diet and exercise.

6. You don't need to test positive on every single test, or test positive on every type of test, to have Cushings. There is substantial variation in how we present with the disease, and in which tests will identify the excess cortisol in our bodies. Do not let a single negative result on any one test, or negative results on a particular type of test, prevent you from aggressively pursuing a Cushings diagnosis if there is strong suspicion. For example, it is possible for an individual to have proven Cushings without ever having a positive on a ufc or dex suppression test.

7. Do not waste time, energy and financial resources on unhelpful doctors.

8. Whenever possible, get to a true Cushings expert as soon as the disease is suspected.

9. When seeing a new endocrinologist, don't be afraid to ask:

a. What is your opinion on cyclic or intermittent Cushings?

b. When and how might you diagnose a mild or early case of Cushings? Do you recommend treatment in those cases?

c. Do you believe it is possible for someone to have Cushings without all or some of the commonly associated stigmata (straie, hump, moon face, substantial weight gain)?

d. What is your diagnostic criteria for Cushings?

i. Lab tests

ii. Physical symptoms

iii. Imaging

e. How many patients have you diagnosed with Cushings?

f. What surgeon(s) do you recommend and work with for your patients with tumors that are causing Cushings?

g. If Cushings is suspected, how can we work together to maximize testing to give us answers as quickly as possible? How can I most easily get my test results from your office?

10. Make sure your doctor is willing to support the amount of testing that may be necessary to allow you to begin to distinguish between high and low periods. Make sure your doctor is also willing to support multiple types of tests to appropriately rule in/out Cushings.

11. Create a binder and get copies of every single test. (Make additional copies of test results so that you have extra available to perhaps send in advance to a new doctor, or to be able to readily provide a copy during your appointment as necessary). Get copies of clinic notes as well. Organize them into the binder. My binder has the following tabs:

a. Spreadsheet that summarizes most relevant test results

b. Current medical history/summary of symptoms

c. Imaging reports

d. Cortisol test results (serum, salivary, ufcS)

e. Other lab results (including EKGs and other relevant tests)

f. Eyes (visual field tests, letter from eye doctor, etc)

g. Clinic Notes

12. Research tests. It is not uncommon for a test to be ordered or interpreted incorrectly.

13. MRIs are only tools. They can be interpreted differently by different people and they may not accurately identify the extent or location of a tumor.

14. Create a spreadsheet, or use a journal, to track symptoms daily. Log test results so that you can begin to see patterns. Symptoms may be as subtle as canker sores, or cracked lips or skin, a single pimple, or may be more obvious such as severe swings in mood and energy levels, insomnia, bad acne, etc. Write it all down and track it.

15. Test whenever you feel different.

16. Symptoms of a high for you may or may not match what is typically described for a high. You may experience a high differently. For example, achiness is frequently described as a low symptom, but it may occur during a high in your case. Tracking symptoms and correlating test results help to identify patterns of a high.

17. Start testing your own blood sugar to identify any possible blood sugar problems and to look for possible correlation between episodes of high blood sugar and high cortisol levels. This won't apply to everyone, and may not be useful in your case, but it was very helpful to me. A very good Walgreen's brand glucometer is only $20.

18. Get a blood pressure cuff and start checking your own bp at home. Look for patterns there as well.

19. Summarize test results for your doctor (PCP, endocrinologist, or even surgeon). Create a simple table that shows your relevant test results over time.

20. Collect photos that illustrate how your physical appearance has changed.

21. When researching surgeons, learn as much as you can about the different techniques and approaches. Some may seem similar, but there are differences that are important to understand.

22. When interviewing surgeons, the following questions may be helpful (mostly pituitary focused):

a. How will you approach the tumor?

b. What instruments are used? Endoscope? Microscope? Both?

c. What incisions are made?

d. Do you need to clear any kind of path within the nasal or sinus area for your instruments? How will you do that?

e. What stitches will I have?

f. Do you use a “fat plug”?

g. Do you use a lumbar drain?

h. Will there be any nasal packing?

i. How will my head be immobilized during surgery? (Is a “halo” used?)

j. Do you use Doppler to localize the carotid arteries? (not necessary in fully endoscopic procedure as I understand it)

k. Describe your approach to locating any tumor seen on the MRI, and what you will do to find any other tumors that may be in, on, or around the gland.

l. Under what circumstances might you find it necessary to remove either part of the pituitary gland, or all of it?

m. How many of these procedures have you done?

n. How long have you been performing this particular procedure?

o. What are some typical complications that occur with this procedure? How do you manage those complications?

p. Based on my MRI, is there anything in particular that might suggest greater risk of diabetes insipidous or other long term complications with this surgery?

q. Tell me what to expect in terms of post-operative pain and how it will be managed.

r. Is an ICU stay typically necessary?

s. How long can I expect to stay in the hospital?

t. Do you give steroids intra-operatively?

u. When do you test post-op cortisol levels? What is the cortisol replacement therapy protocol? If my endocrinologist is out of state, who will be monitoring that part of my testing and prescribing cortisol replacement as necessary?

v. When can I travel to return home?

w. What restrictions will I have once discharged? (Lifting, noseblowing, how I sleep, driving, exercise, etc)

x. How do I contact you if I should have any problems or concerns once discharged?

y. How will you communicate with my endocrinologist regarding the results of my surgery?

z. What is your protocol for following up with patients post-operatively?

aa. What is your rate of post-operative sinus infection?

bb. What is your rate of post-operative diabetes insipidous, both temporary and long-term?

23. These questions for your endocrinologist may be helpful once surgery is planned:

a. How will you determine my post-op cortisol replacement needs?

b. At what point will you recommend that I begin tapering my dose? What are your guidelines for each step in the weaning process?

c. Based on my case and your experience with other Cushings patients, what might I experience during the recovery period? How long before I feel "better"? What restrictions will I have?

d. When and how will you determine if other pituitary functions should be tested post-op? How will you test other pituitary functions post-op?

e. Do you provide a prescription for emergency injectable hydrocortisone?

f. Do you provide written instructions I may carry for Emergency Room staff in the event that I have an adrenal crisis?

g. How long should I expect to be off work?

h. How will you follow up with me post-op?

i. What is the best way to reach you if I have any questions or concerns after surgery?

24. Participate on the Cushings Boards to support yourself and others through the Cushings diagnosis and treatment journey. (You'll also make some new friends.)

Pituitary Surgery Observations

From Kate, one week post op:

Hello, my dear friends,
It is strange to be writing to you from the other side of surgery (well, at least this time somewhat coherently, as my prior post-op posts have been, let's say, lubricated nicely by some very nice pain pills). It seems not too long ago, I was writing my introduction post back in August, then posting questions about testing, months of which are now thankfully over.
Some of you may remember my first posts, and I can't believe that it's only been 5 months ago that I was telling my story and searching for answers. Today, I post both because I learned some things through the surgical process, which I wanted to share with those of you who may be doing this after me. But I also post because this is my denouement...the post-climactic events in my Cushing. (Don't worry, though -- I'm not going to leave!)
Go see the surgeon in advance of surgery. If you can afford to actually go see the surgeon face-to-face ahead of time, I recommend it. This is brain surgery. Yes, it's an additional expense for travel, but if you can, make it happen. You will thank yourself, and you will walk out of that consult with a clear confirmation whether the surgeon will perform your surgery or whether there may be additional tests, labs, reports, referrals, etc. needed prior to that agreement.
Because I'd been fortunate to have this consult, by the time I reached the surgeon on Wednesday (before the Friday surgery) to drop off my films, he basically said, "We already met, and I have nothing to add to our prior conversation, but I'd be glad to answer any questions you may have at this time." The appointment lasted about 2 minutes. Seriously. I think having met the surgeon and him having already agreed to do my surgery meant that no questions were left to be answered -- by either of us -- by the time I went for the operation.
2. INSURANCE: Make sure your insurance is in order. You probably need a referral to the surgeon for "evaluation and treatment"; this referral comes from your PCP to the surgeon. Most surgeon's offices will handle the preauthorization with your insurance company for you. Mine did. Still, for my own peace of mind, I checked with my insurance company more than once to make sure that they had the preauthorization approved.
A. LABS - Even if you've had a pre-surgical consult, or even if you've mailed your labs ahead of time, PLEASE do yourself a favor and go to surgery with your paperwork in perfect order. This means even if you have your films and labs already in the hands of the surgeon, ALSO bring a copy of your labs with you!
B. REFERRAL - This next one is non-negotiable: HAVE A REFERRAL FOR SURGERY BEFORE you arrive for surgery. If possible, have a copy of this written referral in your hands. You can arrange this by having your referring endocrinologist copy you on the referral letter/email. Just print it out and make it part of your folder. You cannot self-refer for surgery. You MUST have a referring endocrinologist confirm your diagnosis, the basis for the Dx, and put in writing his recommendation and referral for surgery. If you do not have this, then do not expect to pass go or collect $200. Them's just the facts.
C. PRE-SURGICAL PHYSICAL REPORT - You will have to have a pre-surgical physical. There will be bloodwork, and EKG, possibly a cardiac workup (if necessary), a chest X-ray, and whatever else your surgeon and PCP feel may be necessary to ensure your safe release for surgery. Once all of these tests are completed, it is then necessary to ensure that the report actually makes it to the surgeon's office. I learned this the hard way because I'd coincidentally had a pre-surgical physical for the cancelled IPSS, which had been scheduled as the same day I had surgery instead. Although I'd anticipated that my physical report would therefore wind up at UCLA (where the IPSS was scheduled) instead of Pittsburgh (where surgery was scheduled), and even though this did in fact happen, it only took a couple of phone calls to make sure my surgical clearance report finally made it to the surgeon's office. Two days before surgery, or more (if you have more notice than I did), just sit down for an hour or two and make phone calls to make sure everything is in order and where it needs to be.
D. SELF-CREATED SURGICAL PACKET - Once all of the above is accomplished, the most helpful thing you can do for yourself is to put together a packet to take with you to the surgeon:
  • Labs
  • Concise list of labs (listing all high numbers, dates, times categorized by test type)
  • Referral letter from your endocrinologist with the diagnostic basis for your referral
  • Films (Originals AND/OR on CD -- I brought both)
  • Pre-Surgical Physical report from Primary Care Doctor
I put my referral letter on top, my own synopsis list of labs under that, then the labs, then the physical report, and I had the clipped together and handed to the surgeon's staff upon my arrival. Maybe some of it was duplicitous, but that way, they had everything they could need at their fingertips.
4. PACKING: Pack well, but lightly. You won't be wearing a lot of clothes, and there are only so many nightgowns you can wear. Take two sets of clothes and two nightgowns, a robe and some slippers with outdoor-type soles, and then slog around in those slippers even after surgery when you are back in clothes and traveling. My sweetie husband bought me some UGG slippers with shearling insides and rubber soles, and I haven't taken them off since I got out of surgery -- even wore them to the doctor yesterday, the lab for draws on Tuesday, and plan to wear them until I am feeling like my feet don't need the comfort of something soft and warm again.
I think Mary printed my packing list in one of the recent newsletters, but I just wanted to confirm YOU DON'T NEED TO TAKE MUCH STUFF. I didn't feel like reading, playing cards, or even really watching TV. So unless you are going somewhere where they do a traditional rather than endoscopic approach (meaning you will be in the hospital more than overnight), skip the toys and such. Every other need you have will be met by the hospital.
5. PRESCRIPTIONS - Get your regular med AND post-surgical meds filled prior to leaving your hometown, if possible. This includes cortef AND injectable solucortef PLUS syringes. Not all pharmacies stock this stuff, so plan ahead a couple of days so they can order it if necessary.
6. BUY A PIK-STICK - This is a thing with a handle on one end and pinchers on the other, which will help you retrieve things off the floor post-op. Trust me, this is a good purchase. $15 at your local pharmacy or Walmart, etc.
7. PREPARE YOUR ENVIRONMENT FOR POST-OP - Get your house clean. Hire someone if you can't do it or don't have family to help. I've never had help, and this was the best thing I did for myself. I came home to a spotless house, which relieved a lot of stress.
Plan where you will sleep upright after surgery. A recliner or a chair with ottoman and pillows both work well. Gather bed pillows to prop under legs. Have a small table next to whereever you will sleep/spend the day. Put lip balm, a coaster for drinks, Puffs Plus with lotion tissues on it, and anything else you think you will need close at hand.
Make arrangements for who will help care for you post-op. You will need intense care for at least a week, and maybe two. Don't be shy to ask people for help, and tell them to bring food rather than flowers. I have enough soup in my freezer for a month, and I don't have to worry about cooking for my husband....nice!
8. SAY GOODBYE TO WORK FOR A WHILE - Don't do what I did and take work to the hotel with you. If you had appendicitis, they would live without you. No one is indespensible. This used to bother me; this week, I am appreciating the revelation. Tell everyone you need limited contact, few visitors if any and NO STRESS after surgery.
1. LOCATE THE ROUTE TO THE HOSPITAL IN ADVANCE - Find your way to the hospital before the day of surgery. Or, do like I did and arrange to stay in a hotel near the hospital that has a shuttle service. Then, arrange for the shuttle to pick you up half an hour before your appointed registration time. If going to Pittsburgh, I cannot recommend enough staying at Springhill Suites in Northshores, 1 mile from Allegheny Hospital. They took us everywhere we needed to go, including downtown to a pharmacy. For free.
2. MAKE A LIST OF PHONE NUMBERS TO CALL AFTER SURGERY - Take a list of phone numbers for your family members to call when you are out of surgery. You won't feel up to it yourself, but they will be delighted to let your friends and other family know how you made out. I confess my list was developed from my cell phone call log after I was already registered and waiting to go down to anesthesia....which is only to say if my mother didn't call you after my surgery, it does NOT mean you are not my dear friend -- it only means I couldn't quickly access your number from my call log in order to give it to her. I wish I'd written the list out in advance, though, because it relieved me to know people knew the outcome as I knew they were waiting to hear.
3. CHILL OUT, THE SYNTHETIC WAY (IF NECESSARY) - If you are like me -- someone who has not done a lot of surgery, and also hasn't taken a lot of tranquilizers -- I HIGHLY RECOMMEND GETTING TUNED IN by some Xanax, Valium, Ativan or the like immediately after registration. Now, of course I had to arrange for this medication prior to surgery, and I did this through my PCP who thought it was a great idea to have something for anxiety. Then, I did not take it until I had cleared it with the surgical team after admission to the hospital. If you talked to me on the morning of surgery as I waited to go down, you probably had a good laugh. I'm a real hoot on 2 mg of Ativan, as Robin may attest!
The net effect of the tranquilizer was that by the time they wheeled me down to anesthesia, I was not only ready for surgey, I was okay with it, not scared, kind of excited to be moving forward after all of the waiting, making funny small talk with the hospital staff, etc. Maybe you won't need this, but for me, drugs....mmmmmmmm, mmmmmmm, goood!
4. TEE TEE BEFORE CHANGING INTO HOSPITAL GOWN - Use the bathroom BEFORE putting on the surgical gown. I had gone before leaving the hotel, and since I hadn't eaten or drank anything, I thought I wouldn't need to go. Then I found myself in a 2 hour wait down in the anethesia area, and suddenly I had to tinkle. It was, I'm sure, a pretty sight to see me hobbling down the hallway in that surgical gown, in those ugly socks (that are not shaped like feet, by the way), all zonked out on Ativan and waving at people. tongue.gif
Where I had surgery, they did NOT use a catheter, by the way.
5. WARM BLANKIE WHILE WAITING FOR SURGERY = GOOD STUFF - Tell them you are cold, even if your temperature is just right. That warm blanket was so comforting. Made me feel all snuggly and nice. A pre-surgical hug, if you will.
6. PREPARE INFO FOR SURGICAL TEAM - Tell your anesthesiologist/s EVERYTHING about yourself. Mine was a complicated case because of my sleep apnea, which is (was?) severe. They had prepared to intubate me while awake, if necessary. By the time I had the Versed, I truly, truly would NOT have cared!!! I was so ready for surgery by the time they wheeled me in and gave the Versed, I would have pushed the tube down for them if necessary. But because anesthesia is a risk in and of itself, be SURE to tell them about ANY breathing problems you have, even asthma, some congestion from a lingering cold, apnea, whatever. I wound up in ICU -- briefly -- after surgery, just as a precaution.
7. VERSED: THE POINT OF NO RETURN - Watch your mouth after the Versed. It will give you loose lips!!! Who knows what gems may have come out of my mouth....the one thing I remember was trying to hook up Dr. D with Robin's daughter, Sarah Beth. I do think I also told him he was Dr. D -- for "Dreamy." This was right before he told me he was married, and then the next thing I knew, I was in recovery.
8. SURGERY WAS NOT THAT BAD!!!! Mine lasted 2 1/2 hours. I had it endoscopically by Dr. J, who I am convinced is a world-class surgeon. It went "perfectly," according to my surgeon. Although I had a wicked headache and a nosebleed every time I stood up, it really was not that bad. Kind of like a migraine plus a low-grade flu, and the pain meds hooked me right up. I was doing so well that by 8 a.m. the next day, they had released me from the hospital. I elected to stay until 12, though, to get my last dose of pain meds before adiosing the hospital.
For those who asked, my tumor was 5mm on the right side, had grown down into and around my septum, had been there for years to have grown in that fashion, was not recognized by the radiologist who initially read my MRI, was seen as curiously small on film by the 3 surgeons who did recognize it, and had a 3mm extension/second tumor on the left side of the pit. Dr. J and Dr. D assured me that they felt they got it all and that they had even milked the gland afterwards, though I don't know what that means.
My tumor stained positive for ACTH, and there was plenty for pathology. I have not received the official report, but at 6 a.m. the morning after surgery, Dr. D gave me the truly overwhelming news that I had pathology-proven Cushing's. I wept, pumped his hand up and down, called my husband at the hotel, and according to my mom, my husband met her for breakfast with tears streaming from utter relief and validation at this news.
P.S. Have been told that my gland was preserved and that I may be able to get pregnant. After all this time. Despite Dr. W, my repro endo who for seven years never tested me for Cushings and told me I had PCO.
NOTE FOR THOSE INTERESTED: Remember that Jan. 9th appt. I'd scheduled back in the fall with Dr. W, the one they were really reluctant to schedule? I got a call on Jan. 8th at 8 a.m. from the office manager for the fertility practice informing me that Dr. W retired on Jan. 1. Veddy, veddy interesting. I think my malpractice attorney will find this news to be interesting as well.
9. STAY IN THE HOSPITAL TWO NIGHTS IF YOU WANT TO! I wound up staying back at the hotel the night after surgery, but it would have been nice to have been in that hospital bed, having a nurse bringing me Sprite Zeros and soft, nuggety ice and helping me to the bathroom. However, most medical professionals will agree that it's best to get out of the hospital as soon as you really safely can -- there's a lot of sick folks and germs in that place, after all!
10. P-BURGH = EXCELLENT CHOICE - If you choose to have surgery in Pittsburgh, you will be treated like royalty at every step of the way. Top-notch facility, private room with a stunning view of the city, comfortable bed, constant attention, true compassion from staff, support for your family as they wait for news of your successful procedure.
1. TRAVELLING AFTER SURGERY - Zonk up on pain meds and suck it up and do it. Home is better than hotel, and you won't remember much of the trip if you are on meds and have help from family to do it right. If travelling by car, take pillows and snuggly blankets.
2. PAIN - For me, there wasn't a lot. Then again, I chose to spend the first three days cross-eyed and drooling on Percocets before realizing I didn't really need them. I am still taking one at night to sleep or if I get a headache. But we are talking normal headache now, not the hatchet kind.
3. CONGESTION - You will have some, but keep in mind some of that is surgical swelling and not congestion. I learned this at my PCP yesterday who said she could see the tissue swelling. Mucinex works wonders for getting packed mucus to drain, but then expect some coughing as it tickles the throat. Some folks have used humidifiers, hot bowls of water with salt and a towel over the head, throad lozenges, saline sprays and mists, nose pots to rinse the sinuses. I've done the hot bowl of water twice, and hot showers. It's been one week, and the congestion is pretty much over.
NO: Nose blowing, snuffing up, hocking loogeys, back-swallowing. Also, no bending, reaching down, straining to get up or have a bowel movement (or, as I discovered last night, doing the long cat-stretch while making the cat-stretch noise - OUCH!)
YES: Drinking hot tea, following list above, laying your head back and letting it drain down your throat, sucking it up and realizing it is temporary. LET OTHERS DO FOR YOU. This is not the time to be superwoman.
4. MEDICATIONS - Buy a seven day pill box, then fill it with what you need for the day.
Set up "Crisis Central" with your crisis letter from your endo to take to the ER if necessary (also give this to your PCP ASAP), your solucortef injectable WITH syringes, instruction sheet on how to give the shot, etc. Take your medications on time. Make sure they remain filled and call early to refill.
5. AVOID STRESS - No work. Very few phone calls. Limit internet for at least one week, maybe more. No arguing or debating with anyone about anything. Let others take care of you, even if you've never done this before in your life.
6. SLEEP A LOT. Your body needs it to recover.
7. SNUGGLY BLANKET = BEST FRIEND after surgery. I got a microfleece blanket from Target, and it has been across my lap during the day and draped over me at night. It feels like being enveloped in warm marshmallow cream, or Cool Whip. Very good $29.99 expenditure. Added bonus if you have a sweet lap dog to curl up with you.
8. LISTEN TO YOUR BODY - Mine, at least, has been telling me things: hunger, pain, stress, anxiety, fatigue, weakness, energy, etc. Respond accordingly: take pain meds for pain, eat healthfully and in small amounts when hungry (or else nausea will ensue), take meds on time, don't be afraid to take Xanax or the ilk when stress comes on. I am managing some of these meds with my PCP, who thinks keeping things on a very even keel is a good idea. Since this is new to me, Ms. Intensity, I'm having to ease through this medicinally. Deep breathing exercises work, too.
9. SHOWERING - helps break up congestion and is a good way to perk up if you are feeling low. Just, be careful showering if you are weak. I take my cortef, then shower 45 minutes later when I have some energy. Then settle back down and be quiet. Your body needs stillness and quiet to heal.
10. DON'T PUSH IT. For me, post-op has been pretty much a breeze. No intense pain, only moderate nausea, pretty good adjustment to cortef. I do note I am emotional and somewhat unable to process simple stressors. For instance, even going over to the in-laws for a simple meal was too much last night, one week post-op. So I am doing things like letting the answering machine answer for me, etc. Build a cocoon, then live in it for a while. After years of Cushing's, YOU DESERVE IT (ME, TOO!)
Kate's Top Ten List of Pituitary Surgery Observations (In No Particular Order)
  1. Presurgical jokes referencing your brain tumor as the cause for your apparent failing memory should be used judiciously; I only got two laughs out of at least a dozen tries.
  2. One-size-fits-all hospital gowns actually come in two ranges: Regular Folks...and Great Big Ma'ama Jamma!!!! (Even that one swallowed me, and I'm a big 'un!)
  3. Cost of red plastic hospital bracelet on which the nurse clearly wrote, "Allergic to latex, bandaids and adhesives": $2.50. Cost of roll of adhesive tape subsequently used in mass quantities on inner elbow by same nurse after serum draw: $4.00. Bic pen used by mother of patient, after pulling off tape and noting angry rash, to write on patient's inner arm funny frowny-faces and long arrows pointing to residual rashes: Priceless.
  4. "Your surgery will be mid-morning and should last about two hours." Translation: "Register promptly at 7:15 a.m. and then plan to wait twelve hours before seeing your family again."
  5. When the lady in recovery keeps calling your name and telling you she needs you to wake up, this is NOT the same thing as when you were a teenager and your mom threatened to get a glass of water while you turned over to go back to sleep. They really mean that s*&% when they say they want you to wake up!! tongue.gif
  6. "Hey, what'reyou in here for?" = not a great opener when striking up a conversation with guy moaning next to you in recovery.
  7. Two words upon standing, post op: Nose bleed!
  8. Time between requests for beverages: 30 minutes. Time between trips to the bathroom to tinkle: 60 minutes. Time between doses of pain meds: 240 minutes. I know, because I counted! cool.gif (like, for the past 24 hours!)
  9. Never again will you so carefully examine your boogers and snot for evidence of the dreaded clear fluids (indicative of CSF leak). "Hey, Mom, does this look pink or red to you?"
  10. Transnasal transsphenoidal endoscopic pituitary microadenectomy: as close to drive-through brain surgery as you can get!

Monday, June 13, 2011

Packing Suggestions for Surgery

  • MRI Films (originals plus a CD)
  • updated medical records. Anyone who goes for surgery needs to have a back-up set of records with them. Some doctors like a list all of labs on a spreadsheet with dates, results, etc. on them to make it easier for them to go through. However, Most doctors want to see the actual test results. Have both forms, if possible.
  • nightgowns
  • robe, slippers
  • extra pillow, if needed
  • microfleece blanket
  • book or magazines Adrenal people: you may have trouble resting things like books on your stomach post-op so magazines or paperbacks are a better choice than hard cover
  • Sudoku / crossword puzzles
  • shampoo, conditioner
  • comb, brush
  • toothbrush, toothpaste, deodorant
  • lip balm
  • lotion
  • Puffs Plus with lotion
  • underwear
  • maxi pad/tampons
  • cool max sports injury gel pack
  • medications Note: Check with your doctor - the hospital may not allow you to take meds from outside.
  • Crisis letter
  • medic alert bracelet
  • an iPod/charger or some CD's and small player
  • pants with a loose elastic waist are good, or a long, loose dress.
  • cell phone and charger Note: Check with the hospital. Many do not allow the use of cellphones.
  • list of cell phone numbers of people to call from the hospital
  • change of clothes to wear home. Adrenal people: pants with a loose elastic waist are good, or a long, loose dress.
  • digital recorder so that you can record any instructions if need be after surgery
  • huge, cuddly teddy bear
  • mints for dry mouth
  • Buy a COOL GEL SPORTS INJURY PACK (Walmart or Walgreens) and wrap it around your head and back of your neck when you have a head-ache or are feeling bad. The cool settles your tummy, relieves the pain and swelling in the tissue around the head and neck that is irritated from surgery.
  • Take advantage of the moisture-ventilator that they give you in ICU and be sure to request or demand that they let you keep it after you get to your room. It releived the dry pain that my nose had and made the whole thing WAY less painful than others have said it was for them. ALSO...if you buy one of those $30 cool water humidifiers from Walmart/Target for you upon your return will LOVE the moisture it gives you and it will make your nose feel MUCH better, MUCH faster!
  • New! Autumn adds: "Can I add a couple items to the list that turned out to be LIFE-SAVERS for me? My husband went to Wal-mart and got a gel ice pack that is made to wrap around an arm or leg for sports injuries...The gel pack goes in the freezer and then in ...a sleeve that velcros. It is the perfect size to go around your head and it is sooooo helpful for headaches and swelling! LOVED IT and used it for a couple months after surgery!!!! A great $10.00 purchase!" 
Optional, if used:
  • nightguard for teeth
  • cpap and oracle mask
  • Growth hormone and supplies
  • camera
  • deck of cards
From, elsewhere on the boards, and MaryO's personal experience

    Sunday, June 12, 2011

    Interview with Robyn Y (2ndtimecushie), Recurrent Pituitary Patient, June 15, 2011 at 5:00 PM eastern

     Robyn was diagnosed with Cushing's Disease in 2004 and had 2/3 of her pituitary removed.  This was after 8 years of going from doctor to doctor and thinking she was going to go crazy.

    She writes: "Anyway, after my surgery in February of 2004 I had probably a good three years and then I slowly started feeling bad again.  I am now going through what I did 8yrs ago.  My endocrinologist doesn't think that the Cushing's is back because of my tests being borderline.  He told me that he thinks I am obese and I need to have stomach surgery.  I seriously cried for days and told him that I disagreed and I wasn't going to give up...I need support in following through with the tests that I need to.  Like I said I have been putting them off because subconsiously I am so worried that they will tell me that I don't have the Cushing's back and I will have to live like this the rest of my life.  Tired of being so heavy and uncomfortably large, sweating to the point of dripping, aching all over and not having any desire or motivation to do anything.

    I'm praying the tests come back showing that the tumor is back and they will go in and take the rest of the pituitary out."


    Read Robyn's complete bio

    This interview will be archived and available through Cushing's Podcasts on Posterous,   BlogTalkRadio, or through iTunes Podcasts

    Monday, June 6, 2011

    Drugs that might interfere with Cushing's testing.


    Investigational drug improves symptoms of Cushing’s disease

    BOSTON — Phase 3 data from the PASPORT-CUSHINGS trial show significantly reduced cortisol levels and improved quality of life in patients with Cushing’s disease who were assigned to pasireotide.

    The investigational somatostatin analogue (SOM230, Novartis) targets cortisol production in Cushing’s disease. Currently, there is no approved medical treatment for the disease; most patients undergo surgery or radiation therapy. Now, researchers said these latest data support the potential use of pasireotide “as the first specific pituitary-targeted treatment in this disorder.”

    The randomized, double blind PASPORT CUSHINGS trial enrolled 162 patients with Cushing’s disease from 18 countries. The majority of patients (n=135) had persistent or recurrent Cushing’s disease after prior treatment; 27 had new-onset disease but were not eligible for surgery. Researchers randomly assigned patients to twice-daily pasireotide injections of 600 mcg or 900 mcg. The blinding treatment was lifted at 6 months or at 3 months if patients did not respond to therapy. Months 6 to 12 were open-label, and nonresponders received a higher dose, if needed. The primary endpoint was urinary free cortisol levels at 6 months without dose titration. Lack of response was demonstrated by increased levels of urinary free cortisol or a urinary free cortisol level more than two times the upper limit of normal. Annamaria Colao, MD, from University of Naples, presented data on 103 patients during an oral session.

    Of the patients assigned to the 900-mcg dose, 26.3% achieved normal urinary free cortisol levels at 6 months and 25% maintained normal levels at 12 months. Nearly 15% of patients assigned to the 600-mcg dose met the primary endpoint at 6 months and 13.4% at 12 months. Most patients with uncontrolled disease could be identified within 2 months, based on urinary free cortisol levels, the researchers said. Reductions in serum and salivary cortisol levels and plasma ACTH were also observed.

    As urinary free cortisol levels decreased, symptoms of Cushing’s disease improved, including significant reductions in body weight, blood pressure and LDL cholesterol. The researchers also noted improvements in quality of life.

    “The safety profile of pasireotide is similar to that of other somatostatin analogues,” Colao and colleagues said. Adverse events included transient gastrointestinal comfort and hyperglycemic events (reported in 70%). Elevations in fasting blood glucose and HbA1c levels were seen soon after pasireotide initiation. Thirteen (8%) of patients had an adverse event of hypercortisolism that the researchers said was responsive to dose reduction.

    Endocrine Today previously reported phase 2 data from the PASPORT CUSHINGS trial.

    Disclosure: The research was supported by Novartis. Dr. Colao reports no relevant financial disclosures. Other researchers report relevant ties to Novartis, Ipsen, Otsuka, Pfizer and Corcept Pharmaceuticals.

    For more information:


    NIH Adrenal Clinical Trials Updated 6/6/2011

    Rank Status Study
    1 Recruiting Trial of Vasopressin and Epinephrine to Epinephrine Only for In-Hospital Pediatric Cardiopulmonary Resuscitation
    Conditions: Cardiopulmonary Arrest;   Cardiac Arrest
    Interventions: Drug: Vasopressin;   Drug: Epinephrine
    2 Recruiting Test Predicting Adrenal Insufficiency in Volunteers Under Prednisone Treatment
    Condition: Adrenal Gland Hypofunction
    Interventions: Procedure: adrenal insufficiency testing;   Drug: prednisone
    3 Recruiting The Bupivacaine Dose Sparing Effect of Intrathecal Epinephrine
    Condition: Spinal Anesthesia
    Interventions: Drug: Placebo;   Drug: epinephrine 25;   Drug: Epinephrine 50;   Drug: epinephrine 100;   Drug: Epi 200
    4 Recruiting SPARTACUS: Subtyping Primary Aldosteronism: a Randomized Trial Comparing Adrenal Vein Sampling and Computed Tomography Scan.
    Condition: Hyperaldosteronism
    Intervention: Other: Ct-scan or adrenal vein sampling
    5 Not yet recruiting Intranasal Injection Versus Topical Administration of Epinephrin During Endoscopic Sinus Surgery
    Conditions: Hypertension;   Hypotension;   Tachycardia;   Bradycardia;   Arrhythmia
    Interventions: Drug: Epinephrin (Intranasal injection);   Drug: Epinephrin (Topical administration)
    6 Recruiting Adrenal Insufficiency in Septic Shock
    Conditions: Septic Shock;   Acute Adrenal Insufficiency
    Intervention: Drug: Corticosteroid
    7 Recruiting Performance of 18F-Fluorodeoxyglucose Positron Emission Tomography (FDG-PET) in the Diagnosis of Indeterminate Adrenal Tumors on Conventional Imaging: A French Prospective Multicentric Study
    Condition: Adrenal Gland Neoplasms
    Intervention: Other: FDG-PET scan
    8 Unknown  Prospective Study on the Incidence of Adrenal Crisis in Patients With Chronic Adrenal Insufficiency
    Condition: Adrenal Insufficiency
    9 Recruiting Adrenal Function in Critical Illness
    Condition: Adrenal Insufficiency
    10 Recruiting Adrenal Vein Sampling International Study (AVIS Study)
    Condition: Hyperaldosteronism
    11 Recruiting Epinephrine Inhalation Aerosol USP: For Evaluation Of Efficacy And Safety In Asthma Patients
    Condition: Asthma
    Interventions: Drug: Epinephrine inhalation aerosol;   Drug: Placebo;   Drug: epinephrine inhalation aerosol
    12 Unknown  Adrenal Insufficiency in Critical Emergencies in Digestive Diseases
    Conditions: Digestive Diseases;   Adrenal Insufficiency;   Gastrointestinal Bleeding;   Variceal Bleeding;   Acute Pancreatitis
    13 Not yet recruiting Prevalence Study of Adrenal Suppression After Corticosteroids During Chemotherapy.
    Condition: Adrenal Suppression
    Intervention: Other: Prevalence study only, no study intervention
    14 Recruiting Adrenal Hyperplasia Among Young People With PCOS
    Conditions: Adrenal Hyperplasia;   Polycystic Ovarian Syndrome;   Oligomenorrhea;   Obesity;   Hyperandrogenism
    15 Recruiting Low-Dose Epinephrine Infusion Tests in Adolescent and Pediatric Patients
    Condition: Congenital Disorders
    Intervention: Drug: Epinephrine
    16 Recruiting Evaluation of Molecular Markers in Adrenal Tumors
    Condition: Adrenal Gland Neoplasms
    17 Unknown  Adrenal Function After Living Kidney Donation
    Conditions: Addison Disease;   Hypoaldosteronism
    Intervention: Procedure: Laparoscopic hand-assisted donor nephrectomy
    18 Recruiting Adrenal Tumors - Pathogenesis and Therapy
    Conditions: Adrenal Tumors;   Adrenocortical Carcinoma;   Cushing Syndrome;   Conn Syndrome;   Pheochromocytoma
    19 Not yet recruiting A Pilot Study of F-18 Paclitaxel (FPAC) PET for Evaluating Drug Delivery of Solid Tumors in Breast, Lung, Renal, and Adrenal Cancers
    Conditions: Breast Cancer;   Lung Cancer;   Renal Cancer;   Adrenal Cancer
    Intervention: Drug: F-18 Paclitaxel (FPAC)
    20 Not yet recruiting The Hemostatic and Hemodynamic Effects of Adrenaline During Endoscopic Sinus Surgery
    Condition: Chronic Sinusitis
    Interventions: Drug: 1% lidocaine with 1:100,000 adrenaline;   Drug: 1% lidocaine with 1:200,000 adrenaline


    21 Recruiting Study of Intracameral Adrenaline for Pupil Dilation Without Topical Mydriatics in Refractive Cataract Surgery
    Condition: Cataract
    Intervention: Drug: adrenalin
    22 Recruiting Study of Adrenal Gland Tumors
    Condition: Adrenal Gland Neoplasm
    23 Recruiting The Effects of Epinephrine in Endotoxemia in Normal Volunteers
    Condition: Immune System
    Interventions: Biological: Endotoxin, Lipopolysaccharide, LPS;   Biological: Endotoxin, Lipopolysaccharide, LPS /Epinephrine
    24 Unknown  Does Topical Steroid Treatment Impair the Adrenal Function?
    Conditions: Hypothalamus-Pituitary-Adrenal Axis Assessement;   Topical Steroid Therapy in Chronic Skin Diseases
    25 Recruiting Combination Local Anesthetics
    Condition: Perioperative Pain
    Interventions: Drug: 1% Lidocaine with Epinephrine;   Drug: 0.25% Bupivacaine with epinephrine;   Drug: 1% Lidocaine + 0.25% Bupivacaine with Epinephrine;   Drug: 2% Lidocaine + 0.5% Bupivacaine with epinephrine
    26 Recruiting Study Comparing Peri-articular Injection of Bupivacaine With and Without Epinephrine
    Condition: Osteoarthritis
    Interventions: Procedure: Peri-articular injection of marcaine/epinephrine;   Procedure: Peri-articular injection of marcaine alone
    27 Not yet recruiting Gluing Lacerations Utilizing Epinephrine
    Condition: Lacerations
    Intervention: Drug: LET - Lidocaine Epinephrine Tetracaine
    28 Recruiting Use of Local Analgesia With Epinephrine During Total Hip Arthroplasty (THA)
    Condition: Arthroplasty, Replacement, Hip
    Intervention: Drug: ropivacaine, physical serum and adrenalin
    29 Recruiting Relative Adrenal Insufficiency in Preterm Very Low Birth Weight Infants With Shock
    Condition: Adrenal Insufficiency
    30 Unknown  Adrenal Insufficiency in Cirrhotics With Ascites. Effects of Hydrocortisone on Renal and Haemodynamic Function
    Condition: Cirrhosis With Ascites
    Interventions: Drug: hydrocortisone;   Drug: dextrose solution 5%
    31 Recruiting Bronchiolitis, Optimal Treatment in Infants and Prognosis
    Condition: Bronchiolitis
    Interventions: Drug: Racemic adrenaline;   Drug: Isotonic saline
    32 Recruiting RAD001 in Pheochromocytoma or Nonfunctioning Carcinoid
    Conditions: Pheochromocytoma;   Extra-Adrenal Paraganglioma;   Non-functioning Carcinoid
    Intervention: Drug: RAD001
    33 Not yet recruiting Hypoglycemia Associated Autonomic Failure in Type 1 DM, Q4
    Condition: Type 1 Diabetes
    Intervention: Drug: epinephrine
    34 Recruiting Effect of Epinephrine/ Phenylephrine for Preventing the Postreperfusion Syndrome During Reperfusion in Liver Transplantation
    Condition: Hypotension After Reperfusion in Liver Transplantation
    Interventions: Drug: phenylephrine;   Drug: epinephrine;   Drug: placebo control
    35 Recruiting Safety Study Evaluating the Adrenal Suppression Potential of Product 0405 in Pediatric Subjects With Atopic Dermatitis
    Condition: Atopic Dermatitis
    Intervention: Drug: Product 0405
    36 Recruiting Merits of Continuous Paravertebral Block in the Management of Renal/Adrenal Surgery by Laparotomy
    Condition: Patient Scheduled for Renal and/or Adrenal Surgery
    Intervention: Procedure: Continuous Paravertebral block
    37 Not yet recruiting Adrenalectomy Versus Follow-up in Patients With Subclinical Cushings Syndrome
    Condition: Adrenal Tumour With Mild Hypercortisolism
    Intervention: Procedure: Adrenalectomy
    38 Unknown  Role of the Protein Osteoprotegerin in the Bone Health of Women With Congenital Adrenal Hyperplasia
    Condition: Adrenal Hyperplasia, Congenital
    39 Recruiting Gene Polymorphisms Influencing Steroid Synthesis and Action
    Conditions: Disorders of Sex Development;   Congenital Adrenal Hyperplasia;   Congenital Adrenal Hypoplasia;   Adrenal Insufficiency;   Mineralocorticoid Deficiency;   Intersex
    40 Recruiting Adrenal Function and Use of Intralesional Triamcinolone Acetonide 10 mg/mL (Kenalog-10) in Patients With Alopecia Areata
    Condition: Alopecia Areata
    Intervention: Drug: Triamcinolone Acetonide 10 mg/mL (Kenalog-10)