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Sherri (slfrese) date to be determined. She is not yet diagnosed with Cushing's but has several symptoms and is testing.
Debbie, To Be Rescheduled, 7:30PM eastern. She is not yet diagnosed with Cushing's but has several symptoms and is testing. She was diagnosed with Graves 15 years ago and has two VERY small nodules one of her adrenal glands.
Read Debbie's bio at here
Steve (sowens), date to be determined
Missaf, date to be determined.
Tammie (makeitgreen), date to be determined
Elisabeth (bethnaz), date to be determined
Kate (Katie O), date to be determined
Cindy (CindyRPT), date to be determined
Jo and Corrie, date to be determined
Traci H, date to be determined
Nicole B (Copacabana), date to be determined
Lisa (Ikho), date to be determined.
Judy's Sister, date to be determined.
LynziMarie, date to be determined.
Dr. William Ludlam, Neuroendocrinologist, date to be determined.
"I first started feeling like something was wrong with me about my Junior year in college in 2000. I started gaining quite a bit of weight, 40lbs in 6 months, and I was tired a lot. I also was getting a lot of infections, strep throat, mono, etc.
Around the end of my Junior year, probably one of the worst things that could have happened during my 8 years of illness happened, I had severe psychiatric symptoms at school, including psychosis, and was put on a “students in crisis” plan and sent home for a little while. Being diagnosed as a “psych patient” would delay my diagnosis for years, most doctors just considered me "crazy."
Prior to this time I had weighed approximately 125lbs, was a competitive swimmer, played intramural softball and water-polo, worked as an athletic trainer, attended a private college, and was preparing to go to medical school. I was living life in the fast lane, and it all came to a screeching halt, life would never be the same again.
During my Senior year I decided that it was not a good time to pursue medical school with everything going on, so I applied to Graduate School back home in Arizona. I moved back to Phoenix near my parents and went to school at night pursuing my Masters in Social Work, while working with Autistic children in the school system during the day.
During this time I ballooned up to the heaviest I had ever been 180lbs, and took constant criticism from my family about what I was eating and how much I was exercising. I got so tired of hearing “do you really need a second helping” , even though I wasn't eating any more than I used to eat when I was an athlete, that I hardly went to family dinners any more. I was still getting sick a lot. I caught every cold and flu, especially since I worked in the schools. I also struggled during this time with severe psychiatric symptoms, probably the worst ever in my life.
I saw multiple doctors during this time, sometimes due to changing insurances, and sometimes because doctors didn’t believe me or wouldn’t order tests. I was told many times that “nothing was wrong” with me, even though I knew that there was something seriously wrong with my body.
I then finished my Masters and went to work for Phoenix Children’s Hospital as a medical Social Worker. I loved my job and worked there for about 4 years, but it was long hours, and I was on my feet all day, which I paid for every night! The job was stressful, and emotional, but it was still a great fit for me.
Over time I eventually decided that it was time for me to reapply to medical schools, because working in the Children’s Hospital had reminded me of my love of medicine. I was accepted into the class of 2009 at the University of Arizona College of Medicine. At that time I was my heaviest weight ever, 205lbs, I could hardly do any of the activities I used to do. Sports were definitely out of the question, walking down the street was even difficult. I started out doing ok at school. But fairly quickly it was evident that I was not performing at the level I was used to. I couldn’t quite figure out why. I just thought I couldn’t “cut it” in Medical School, I would later learn that my failing memory and cognititive skills were to blame.
I was seeing the Campus Health doctor quite frequently, for respiratory problems, for infections, and finally I brought up my list of symptoms. She sent me to a Rheumatologist, they did a complete work up for lupus and everything was negative, so my doctor pretty much dismissed my symptoms. During my second year of school I had meningitis, and pneumonia twice during the same year, and was suffering from debilitating migraines.
At this time I had done some research on my own and had some things I had learned from school, and I had kind of come to the conclusion for the first time, that I might have Cushing's. I asked my doctor about this, and she told me that I “didn’t look Cushing's.” At this time I weighed about 235lbs, had a red, round face, had lost a lot of my hair, and had a laundry list of other symptoms. After weeks of asking, she finally did order one 8:00am serum cortisol test. It came back normal, so she told me I didn’t have Cushing's.
At that time, I made the very difficult decision to take a medical leave of absence from school. This gave me two years to return to school if I decided to, because they would hold a spot for me. However, finances got really tight paying for medical bills, because once the end of the term was over I no longer had insurance through the school. So I decided to go back to work.
I actually got a job with the College of Medicine on a grant project with the Family and Community Medicine program as a Social Worker for a clinic for adults with disabilities, which is where I am currently working. Since the job is with the College of Medicine I made an incredibly difficult decision to completely withdraw from medical school. Which means if I ever want to go back to medical school I have to start all over.
Well, I got new insurance with the new job, and since it is a state job it is really good insurance, so I got to try out a whole new set of doctors. The first one I went to came highly recommended, but one of the first things he asked me was not about my symptoms, but if he could call me “FAT.” Then after listening to my symptoms and to my thoughts about Cushing's he then proceeded to tell me that all I really needed was a “good psychiatrist.” I went home and cried and needless to say, I did not go back to him.
Prior to that time I had found the Cushing's Help-Support Boards, and I was steered towards making an appointment with Dr. F. I also found a new PCP at the clinic where I work that was amazing. I went to L.A. to meet Dr. F in the middle of January, and while I don’t have any of the test results back, I was so thankful for the opportunity. I felt so validated, and welcome there. Dr. F told me that he was almost 100% sure that I had Cushing's just based on my report of my symptoms, my medical records, and my exam.
I am still waiting for my MRI and lab results back from my trip, but now I am actually looking forward to the future with hope instead of dread. Even though I now weigh 250lbs, can barely walk, am fatigued all of the time, my cognitive abilities have severely declined, and my vision is poor, at least I am still able to work, and my psychiatric symptoms are pretty much stable and under control.
I am hoping that by this time next year I will be on the path towards recovery!"
Read Alicia's bio.
Listen to Alicia's Archived Interview from January 7, 2008
From Charlie's introductory post:
Here is my story.....
Approximately 18 months ago, I had 3 back to back sinus infections that did not respond well to antibiotics. A CT of my head was performed and he was found to have a bone spur in my sinus. One year ago, surgery was performed to remove the bone spur and, as a prophylactic measure, my tonsils and adenoids were removed as well. As you might imagine, recovery was slow. I was prescribed prednisone after the surgery and, after the initial discomfort from the surgery, felt better while on the prednisone.
Since then, I have had almost daily headaches, constant fatigue,muscle aches and has generally continued to be in poor health. I also developed depression around the time of my sinus surgery and which we attributed to not feeling well and having to close my business. My sleep has suffered as well, often sleeping only 3-4 hours at a time. While the snoring that he had prior to my nasal surgery had ceased, it began again approximately four months following the surgery. It was around that time that I also noticed my memory and concentration were poor.
In the past 12 months, I has seen an ENT, a cardiologist, a gastroenterologist, a dermatologist, a pulmonologist, a hematologist/oncologist, and an endocrinologist... Don't be afraid to buck the system to get to see those you have to. Rattle a few cages and make things happen.
I am looking forward to getting my life back, and I can assure you, once all is said and done, I plan on living every day to it's fullest.
Listen to Charlie's Archived Interview from July 10, 2008
Craven, Barbara, Ph.D., RD, LD
Barbara Craven, Ph.D., RD, LD is a licensed dietitian in Washington, DC. She currently has a practice treating patients with HIV/AIDS and teaching general nutrition. For many years she has had an interest in holistic nutrition and often uses natural therapies in her practice.
She received her Ph.D. in Food Science from Texas A&M University in 1980 and her RD in 1981. The first years of her practice, she taught at the University level, then went into private practice counseling weight loss and athletic nutrition. Several years ago she became interested in HIV nutrition and now dedicates her skills to helping the under served manage this devastating disease through diet and natural therapies. She is currently helping write an Evidenced Based Guide for Medical Nutrition Therapy in HIV/AIDS, is writing a cookbook for HIV/AIDS nutrition, is on the Ryon White Working Committee in Senator Ted Kennedy's Office, is Chair of the DC Area Nutrition Alliance and has been invited to speak on the latest developments in HIV nutrition at the National Ryon White Review Meeting this year in Washington, DC.
Barbara's link to us is that she has had Cushing's. Like many, hers was intermittent and symptoms accumulated over many years before she was diagnosed. In November of 2003 she underwent transphenoidal surgery and her entire pituitary was removed. Many of the symptoms you have experienced or are experiencing, she has also. Many of us met Barbara at the UVA Pituitary Days Conference in April, 2004.
Barbara will answer our questions about natural therapies and diet that helps alleviate symptoms and manage weight in Cushing's disease.
Read Dr. Barbara Craven's Guest Chat, October 27, 2004.
Crystal had pituitary surgery surgery 11/06 followed by a BLA 12/06. She also had a sinus excavation 2/06 and sinus surgery 5/07. Her last surgery was an internal hernia repair 8/07
Her blog is available at http://vinesqueen.blogspot.com/
Listen to Crystal's Archived Interview from March 27, 2008
Friedman, Theodore C, M.D., Ph.D.
Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome.
Dr. Friedman's career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the National Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.
Read Dr. Friedman's First Guest Chat, November 11, 2003.
Read Dr. Friedman's Second Guest Chat, March 2, 2004.
Listen to Dr. Friedman First Live Voice Interview, January 29, 2009.
Listen to Dr. Friedman Second Live Voice Interview, March 12, 2009.
Listen to Dr. Friedman Third Live Voice Interview, February 13, 2011.
Listen to Dr. Friedman Fourth Live Voice Interview, March 12, 2012.
Gracie (fatnsassy) has been dealing with Cushing's symptoms for about 14 years.
She began testing in California with Dr. Ted Friedman June, 2007 and she was diagnosed in May, 2008 with cyclical Cushing's disease. She saw Dr. Hae-Dong Jho just before this chat and arranged for her pituitary surgery in Philadelphia, Pa, in August, 2008.
Read Gracie's bio
Listen to Archived Interview from July 31, 2008
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 (www.montagestudio.com/cefca) 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 email@example.com
There is life after Cushing's Disease!
PAT GURNICK, CLC
Certified Lifestyle Counselor
Director,CEFCA Website Support
Jackie (samsmom) first started dealing with Cushing's in her family when her youngest child was born in 1999.
Jackie has appeared on the Discovery Health tv show pilot, Mystery Diagnosis, discussing her fight for a cure for her younger daughter, as well.
Later at the NIH, the gene (PDE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters.
Sam's doctor at NIH, Dr Stratakis has written several papers on Sam's case including one that was published in April, 2008. For more on PDE11A or iMad, please see A cAMP-specific phosphodiesterase (PDE8B) that is mutated in adrenal hyperplasia is expressed widely in human and mouse tissues: a novel PDE8B isoform in human adrenal cortex.
Jordan, Jackie's oldest daughter, has recently had her adrenals removed. She had one removed laparoscopically and the other was an open adrenalectomy. She participated in this chat as well.
Read Jackie's bio
Listen to Archived Interview from May 15, 2008
Jenn (StaceyJenn) has steroid-induced (Iatrogenic) Cushing's. She has taken steroids for secondary adrenal insufficiency. She has also been diagnosed with hypothyroidism, candidiasis, intestinal permeability and 22 latent food allergies.
Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds. Her doctor stopped practicing she and was transferred to his associate. The associate switched Jenn to medrol. Since then, Jenn has tried to wean off the steroids and has had further difficulties..
Read Jenn's bio
Listen to Jenn's Archived Interview from April 3, 2008
Joselle writes in her bio: "I am a 48 year old female recently diagnosed with Cushing's Disease caused by a pituitary adenoma. It's taken a few years to finally come to this diagnosis. I had a series of symptoms which were indicative of a variety of disorders. However, I don't present as the "typical" Cushing's patient as I don't have the "moon face" or "buffalo hump". Fortunately, I have a primary doctor who didn't give up and ultimately orderd the cortisol suppression test. He then referred me to an endocrinologist. I had an MRI this past week. I have an appointment with a neurosurgeon in a week. It's a bittersweet diagnosis; I am a little scared about the surgery, but THRILLED that I am not crazy.....and maybe I'll actually be able to stop SHAVING my face !!!!!!"
Read Joselle's bio
Listen to Joselle's Archived Interview from September, 2008
Kate (Fairley) has had symptoms since 1991. She has had two pituitary surgeries and another recurrence. She is not yet cured and her current diagnoses are Idiopathic Intracranial Hypertension, panhypopituiarism and a CSF leak.
Kate writes in her message board signature:
- 1991 - Symptoms began
- Oct. 4, 2006 - Testing begins with Dr. F
- Dec. 24, 2006 - Dx of Episodic Cushing's Disease
- Jan. 5, 2007 - 1st pit surgery with Dr. J in P'burgh
- April 3, 2007 - Confirmation of path-proven ACTH-secreting adenoma
- June 18-22, 2007 - Testing with Dr. L for recurrence at Swedish in Seattle
- July 13, 2007 - Dx of Recurrence of Episodic Cushing's Disease
- July 26, 2007 - Dr. McC @ MD Anderson confirms existence of recurrent tumor on right side
- July 27, 2007 - 2nd pit surgery with Dr. J in P'burgh; removal of tumor from right side of pit
- Oct. 10, 2007 - CSF leak repair surgery
- March 2008 - recurrence suspected but cannot test due to cortisol-lowering narcotics for suspected osteonecrosis of left hip.
- Idiopathic Intracranial Hypertension, panhypopituiarism, CSF leak, and, for now....
- No cure for me. :(
Pituitary Cushings: Kate and Dr. Ted Friedman on National Geographic TV were featured on the National Geographic channel. The show, called the Science of Obesity, has a segment on Cushing's syndrome.
Today, 127 million adult Americans are considered overweight, but few reach the extreme proportions of the exceptionally obese. What are the physical stresses of weighing more than 500 pounds and what steps can reverse it? NGC provides an understanding of what happens inside the bodies of these massive people & why a person can pack on hundreds more pounds than those with typical weight challenges. The show explores the genetics behind weight gain & medical advances available to help prevent it.
I hope that all of you can watch this. Please consider contacting your local media about doing your story! There is still much work to do to increase Cushing's awareness.
Discuss this TV show.
More about Dr Ted Friedman
Read Kate's articles:
Listen to Kate's Interview on July 17, 2008
Katie's short bio:
Symptoms started in 2002 at age 22, or before.
Jan. 2008 - 2 mm. area of differential enhancement on right pituitary and 11 mm. pineal cyst identified by MRI
Jan. 2008 - DX - hypothalamic amenorrhea
Mar. 2008 - DX - pituitary adenoma, hypogonadism - female
Katie will be an officer in the upcoming Cushing's Help Organization
Listen to Katie's Interview on July 24, 2008
Leiana was diagnosed with autoimmune adrenal insufficiency back in 2009 and put on 30mg of Cortef for the rest of her life. Her cortisol levels were below normal of -1. She has been trying to wean off the steroids with no success.
She had a 3.9 adenoma on the right adrenal gland removed in Sept 2010 is waiting for the left adrenal gland to kick in. She is extremely skinny and bony and eats around 3000 to 4000 calories a day.
Read Leiana's bio
Listen to Leiana's Interview on March 21, 2012
Kennedy, Judy and Jessica
Judy (judycolby) and her daughter Jessica (Llama3234) both answered questions about what it was like to have two siblings with Cushing's issues
Both Jess and her brother Justin are preparing for pituitary surgery. In mid-May, the family will travel to Houston, where the siblings will have the tumors removed from their pituitary glands. This is expected to resolve the hormonal imbalances, Judy Kennedy said.
Read Jess and Justin's Newspaper Article
Listen to Judy and Jess' Archived Interview from January 17, 2008
Jayne Kerns is a Cushing's patient who had pituitary surgery and a bilateral adrenalectomy before finding the true source of her ectopic Cushing's.
Jayne also had a miracle baby despite her illness, which usually makes women infertile. She was featured in her local paper.
Jayne has seen several potential Cushies and spoken to them. Many have contacted their doctors and turned out to have Cushing's Syndrome. She was also instrumental in setting up the first Cushing's Awareness Day and continues to provide Cushing's Awareness tables at local health fairs.
One of the patients Jayne urged to check out Cushing's is Laura Zastrow. In an article about Laura, the credit for Laura's Cushing's diagnosis is given to Jayne.
Topics discussed in the Archived Interview:
Q: What can you tell us about your symptoms, diagnosis, and treatment with Cushing's? And why so many MRIs?
Q: And your miracle baby - was it harder to be pregnant with Cushing's than it was with your first child?
Q: How are you doing now? What has happened since your last surgery for Cushing's?
Q: I know you will walk up to people in the street that you think have Cushing's and start talking to them about it. How do you get the courage to do this? Are people mostly glad you did or are some hostile?
Q: Besides dealing with all your Cushing's symptoms, surgeries and two young children, you also are a fierce Cushing's Advocate. I know you were instrumental in getting our first Cushing's Awareness Day passed. How in the world did you accomplish that?
Q: Besides your letter-writing, phone calls and locating patients in your local stores, you also set up health fairs for Cushing's Awareness. How does one get started doing that? What kinds of things do you do? I know others are interested in setting up tables at health fairs locally, too, and they might be able to use some tips from you.
Read Jayne's newspaper article Baby boy is miracle to mother with Cushing's disease.
Read about a patient Jayne talked to about Cushing's who later had surgery: After years, mystery ills diagnosed
Listen to Archived Interview January 31, 2008.
Lamberts, Robert, M.D. aka "Dr. Rob"
Dr. Robert Lamberts aka "Dr. Rob": Dr. Robert Lamberts, aka "Dr. Rob", write the amusing and insightful Musings of a Distractible Mind. He also is the "father" of a lobster named Zippy who travels the world seeking a cure for pediatric cancer.
His profile in his blog reads:
Doctor, Blogger, Goofball. Yes, that is me. Dr. Sid called me the "Dave Barry of medical blogging," but I like to think of myself as the "Hulk Hogan" of the Medical blog world. It just makes more sense to me. Anyway, I author "Musings of a Distractible Mind" as other dabblings. I like llamas for no other reason that the word starts with to l's.
I am a practicing primary care physician in the Southeastern US, caring for patients of all ages (Board Certified in both Internal Medicine and Pediatrics). This blog covers a wide variety of issues, including the following: What it is like to be a physician, dogs driving cars, what troubles are in our system, toddlers with flame-throwers, what would it take to fix that system, llamas, death and dying issues, mutants, and accordions. Maybe I need to write about mutant dying accordions with flame-throwers. Hmmm....I feel a post coming. Anyhow, I like variety. Life is always lived with both laughter and tears. If you are a regular reader of this blog, it is also filled with nausea and nightmares. Thanks for stopping by. -Dr. Rob
About Dr Rob reads:
Hi! I am Dr. Rob.
I am a primary care physician from the Southeastern United States. Yes, I am a real doctor. Here are some other facts about me:
So sit back and enjoy the blog. I hope you grow from the experience. I know I haven’t.
- I am a father of four children.
- I am board certified in Internal Medicine and Pediatrics.
- I am bad at bowling, but would like to be better.
- I have lived in New York, Pennsylvania, Indiana, and Georgia.
- I don’t like mushrooms. They are just too slimy for me.
- I play multiple musical instruments, including Piano, Cello, and Guitar.
- I started college as a voice major.
- I am an early adopter of Electronic Medical Records and have been awarded for our implementation of them in our practice. I have given talks about this subject across the country.
- I don’t have psychic powers - I am not that Doctor Rob.
- I have been diagnosed with ADHD. My staff agrees with this diagnosis.
- I don’t like to write about politics. It just gives me the heebie-jeebies.
- I recently had my gallbladder out. It wasn’t that bad, but the scars kind of look like bugs.
- Llamas and goats have mysteriously become an important part of my blog. I am not sure who invited them, but they keep showing up.
- I accidentally deleted this page, so had to rewrite it. I do stuff like that sometimes. Still, I think I am a pretty good doc. I have never deleted a patient by mistake.
- My feet are size 10.5
- I am the recipient of far more grace than I deserve.
- I have very little patience for those pesky muskrats.
Join Dr Rob, October 2, 2008, 8:00PM
Ludlam, William, M.D.
Dr. William Ludlam: Dr Ludlam is a Neuroendocrinologist currently at Swedish Hospital in Seattle, Washington.
His Clinical Interests are: Acromegaly, Complex Prolactinomas, Cushing's Syndrome, Neuroendocrine Disorders, Pituitary Tumors
Dr. Ludlam attended Medical School at Albert Einstein College of Medicine, NY performed his residency at Oregon Health & Science University, OR and his fellowship at Oregon Health & Science University, OR
Read more about Dr. Ludlam.
Join Dr Ludlam, date TBA
Mar (mrsb91986)'s signature:
6/04 DVT Deep Vein Thrombosis -diagnosed with Antiphospholipid syndrome & Lupus Anticoagulant
6/05 Rhuemy told me I "most likelly" have Sjogren's Syndrome
7/06 All normal Endo tests, except for the Saliva which was lost but a low IGF-1 at 77
4/9/07 Tests in Seattle 2 relatively high Midnight serums 7.2 & 8.8 IGF-1 86 + 7 x 6 mm tumor
4/07 to present Still testing
9/07 Phone consult with Dr. L semi-high saliva's 4.7, 4.9 and 36.1 !!! He said to continue testing selectively and will go to Camp Cushie 11/12/07
11/07 Camp Cushie
11/13 12:15 a.m. ACTH 10 Cortisol 11.1, 12:30 a.m. ACTH 10 Cortisol 8.5, 4:00 a.m. ACTH 45 Cortisol 22.2, 8:00 a.m. ACTH 8 Cortisol 9.3, 12:00 p.m. ACTH 11 Cortisol 13.3, 4:00 p.m. ACTH 8 Cortisol 5.8, 8:00 p.m. ACTH 11 Cortisol 6.9
11/14 12:15 a.m. ACTH 15 Cortisol 12.5, 12:30 a.m. ACTH 10 Cortisol 8.3, 4:00 a.m. ACTH 26 Cortisol 17.2, 8:00 a.m. ACTH 15 Cortisol 16.5
Random IGF-1 70 Final result of stim test: 71 L (101-267) Two midnight (11:59 p.m.) saliva's 7.4 & 4.9
Listen to Mar's Archived Interview from August 14, 2008
Middleman, Dori, M.D.
"DrDori", Dori Middleman, M.D. is a Psychophamacologist and a Certified Gestalt Psychotherapist in private practice seeing adults, children, and families in the Philadelphia area.
She also co-leads workshops and training at the Pennsylvania Gestalt Center and is Founder and Director of the Center for a Healthy World, a volunteer-driven psychotherapy and training cooperative. Dori is a board-certified psychiatrist in private practice seeing children, adults and families.
Naturally, her other significant credential is having had Cushing's Disease herself! She has had both pituitary surgery and two gamma knife radiosurgeries. Her topic in the first guest chat was Psychiatric Issues with Cushing's Disease.
Dr. Middleman was recently interviewed on a Philadelphia-area public radio talkshow, Voices in the Family, and spoke about Cushing's Disease and how to make meaning out of illness and adversity. The show is available for listening online by going to Listen here »
Read Dr. Dori Middleman's article How To Have Fun With A Brain Tumor.
Read Psychiatric Issues of Cushing's Patients
Read "DrDori", Dr. Dori Middleman's First Guest Chat, Psychiatric Issues with Cushing's Disease, April 14, 2004.
Listen to Dr. Dori's Archived Interview from June 12, 2008
Monica was diagnosed with Cyclical Cushing's. She had pituitary surgery in November 2006. An 8mm encapsulated pituitary tumor was removed.
Since there was no post-op crash, she also had a BLA in December 2006. Both surgeries were in Seattle. She is now free of Cushing's and am on the road to recovery!
Monica is a professional violinist.
Monica's husband Kevin, April 24. Talking about Cushing's from the spouse/caretaker point of view
He is also Monica's producer/ manager. He has been a tour manager and sound engineer in the music industry his whole life and has worked with many of the greats in the industry.
For the two years during Monica's diagnosis and surgeries he worked from home as a computer programmer so that he could take care of Monica.
Monica and Kevin were married two years ago, just before Monica's pituitary surgery. Monica and Kevin spent their honeymoon in Portland at OHSU doing one of her several "camp cushie" trips.
Read Monica's bio
Listen to Monica's Archived Interview from March 27, 2008
Listen to Kevin's Archived Interview from April 24, 2008
Shauna Nelson has dealt with a very rare, unusual form of Cushing's. Instead of a tumor, she has ACTH hyperplasia, meaning her ACTH cells are spread all over her pituitary.
Shauna had to make a big decision: either have her entire pituitary removed, have radiation or have both adrenal glands removed.
In 2001 Shauna had an unsuccesful pituitary surgery followed by a BLA in 2002. Following the BLA she lost all Cushing's symptoms and weight and went from 245 pounds to 110.
Shauna has suffered through several Adrenal insufficiencies and shared some of her experiences on our 911: Adrenal Crisis! pages. She is an active member of the message boards, helping everyone out, whenever possible. Shauna says:
"If anyone is considering a bilateral adrenalectomy, I would tell them that I'd do it again tomorrow. I have horrible days but I also have extremely wonderful days. And the horrible days are still not as bad as how I felt when I had Cushing's. In fact, I never knew how bad I felt with Cushing's until I was on this side of it. Life has never been better, and I appreciate good health now much more than I ever would have without having Cushing's.
I'm glad I went through Cushing's, when it's all said and done. It made me a more compassionate, caring person. Some of us don't learn life's lessons until we're smacked upside the head with them. I've learned. I will never take for granted a day that God has given me. I will always value, respect, and love my family and friends. Without them and the support from this board, I wouldn't have made it though to be the new person I am now. Some of us are very lucky people in this life, and I credit my experience with Cushing's for shaping me into the person I am now."
Read Shauna's Bio
Read Shuana Nelson's First Guest Chat, June 9, 2004.
Karen Nolan: Karen's disease started when she was a little girl (7) and she finally got a diagnosis in 2005. She had cycling Cushing's, Thyroid disease, GH deficiency, and Auto immune Alopecia. She believes she is cured after two Pituitary surgeries.
A doctor didn't advise Vermont's Karen Nolan (Rooon on the boards) that she might be one of the scant 3.5 per million people diagnosed annually with Cushing's disease - another Cushing's patient did. After reading Nolan's post on an Internet message board, another patient suggested Nolan's lab results and symptoms could indicate pituitary disease and that help might be found more that 3,000 miles away at Oregon Health & Science University.
Read Karen's newspaper article Patients Fighting Cushings Disease.
Read Karen's bio.
Listen to Karen's Archived Interview from February 21, 2008
Listen to Karen's Part 2 Archived Interview from March 20, 2008
"MaryO", Mary O'Connor is the founder and webmaster for Cushings-Help.com and related sites. She is also a Piano Teacher and web designer in northern Virginia. She started having Cushing's symptoms in early 1983 and finally had pituitary surgery at the NIH in November, 1987, Mary is a 25+ year survivor of Cushing's Disease.
Due to her Cushing's experiences and the lack of websites for people with Cushing's, Mary founded the Cushings-Help website in 2000 to help others who were dealing with the rigors of testing and surgery.
MaryO, as she is fondly called by the members of the support board she runs in conjunction with the website, has been instrumental in educating thousands of people about Cushing's. Through the use of her website and support boards, these same folks have been able to garner support and information invaluable to their diagnosis and treatment.
Mary is a survivor. Not only has she survived, but she has enabled so many others of us to survive, also.
She has been recognized in Forbes Magazine, many newspaper and journal articles, and is a speaker at Cushing's Awareness events. She is married to Tom and has a grown son, Michael.
Read Mary's bio.
Listen to MaryO's Archived Interview from January 3, 2008
MaryO was Interviewed in The Coffee Klatch, August 10, 9:00PM eastern http://www.blogtalkradio.com
Steven (sowens) is from Ohio
Steve was diagnosed with HyperBeta Adrenergic Syndrome in August, 2005. Doctors thought he might have a pheo, now they're checking for ACC cancer.
Steven also has a newspaper article written about him.
Steve's daughter may also have Cushing's.
Read Steve's bio.
Read Steve's newspaper article.
Listen to Steve's Archived Interview from April 10, 2008
Sheryl (sherylr) talked about what it's been like living with Addison's after a BLA - for over 30 years.
Sheryl writes in part:
"I was diagnosed with Cushings Syndrome of the adrenal glands in September, 1973. I underwent a bi-lateral adrenalectomy in January, 1974, 30 years ago.
"I'm sure some things have changed since then; I was in the hospital for 3 weeks post-op. I had all of the symptoms listed on this site. I originally was in the ER for what turned out to be a kidney stone. While there the doctors noticed a few oddities. For me the symptoms had been coming along so gradual that no one really noticed. The kidney stone was one result of Cushings. From the ER I was sent for many tests. MRI was not available then, and a test was done by threading a catheter into the groin area artery and shooting dye into it in order for the doc. to see the tumor(s). I tried to find it interesting and it was except every time they pushed more dye into me it was painful and eventually passed out.
"By that time I had entered the hospital knowing surgery would happen and that was the final test to make sure exactly where the tumors were. The surgeon told me afterwards that each adrenal had a huge tumor-benign-fortunately-each one the size of a grapefruit. The surgical incisions were made in my back, one on each side of the spine, in a sort of half moon shape. They are quite large because the tumors were so large. The replacement therapies required are hydro-cortisone and florinef. Because everyone is different you may have a different dose than I do. It took quite some time for my body to really become adjusted to the replacements. At least 5 years for me. I would hope for you newcomers that medical progress has considerably lessened that time!
Read Sheryl's bio
Listen to Archived Interview from August 7, 2008
Long time pituitary Cushing's survivor.
Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her Cushing's Disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital.
She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. She had to be on a lot of antibiotics and narcotic pain relievers.
In Sept 2005 the surgeon removed infection from one area, make another area clear to allow for better drainage, checked her bone and found one area okay but took bone for culture from another area. Terry has had an infection requiring a post-op PICC line.
Listen to Terry's Archived Interview from April 17, 2008
Ferol started noticing irregular symptoms in her late 20's, but more developed since 2001, and rapidly more chronic as time went by.
Finally at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushings'. She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnoses. An MRI confirmed the tumor involvement and pituitary surgery was performed 09-30-05.
Read Ferol's bio.
Listen to Ferol's Interview on May 8, 2008
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