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The Patient Stories that appear on this web site have been published in the CSRF newsletter from 1995 to now. Each letter includes a code that you may use to request that the author of a particular letter email you. To do so, open the complete letter and click email this member.  An email screen will appear.  The CSRF will notify the author that you would like to be contacted. Please limit your requests to 5 per week.

 If you are a CSRF member and would like to submit a story for publication in our newsletter and posting on this website, please log in to the Member Services area.  If you are a CSRF member and do not want your letter posted, please click here

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Patient had/has the following:

Pituitary tumor Adrenal tumor
Bilateral Adrenal Disease Bilateral Adrenalectomy surgery
Ectopic Cushing's Cyclic Cushing's
Medication Induced Cushing's Not yet diagnosed

Age at diagnosis:

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Time since diagnosis:
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191 records found.
•  Spring, 2011 pituitary Code 992
Hi there. I have been a member I guess since 1995. I am Rita. I have written 2 stories about my journey with Cushing’s for the newsletter. I have been in remission for 8 years since my second session with this disease. I had the Gamma Knife twice at Univ. of Alabama in a 2 year period of time. Click to read the full letter...
 
•  Spring, 2011 still testing, Code 080309
I've decided to share my story; a story in which CSRF has a part. I was born April 28, 1956 in Jacksonville, the second child in what would become a family of six. Mother was always overweight and until adolescence so was I. Even in adolescence, though, I always had a bit of fat on the middle which no amount of exercise or dieting could get rid of. Click to read the full letter...
 
•  Spring, 2011 adrenal Code 111638
I was diagnosed with Cushing’s syndrome when I was 17-years-old. For 5 years I went to many different doctors and they couldn’t diagnose my symptoms: weight gain, high blood pressure, thin hair, depression and irregular periods. Click to read the full letter...
 
•  Spring 2011, ectopic, Code 111682
Don’t give up. Keep fighting. Believe. There is hope.

I am writing this story on behalf of my father, Ross, who was diagnosed with Cushing’s Syndrome a little over 4 years ago. Click to read the full letter...
 
•  Winter, 2010 pituitary – Code 080204
I have been resting, resting, resting for 7 months now after my recent health crisis with Cushing’s Disease. I had Pituitary Tumor Surgery 12/03 during which I had spinal fluid leakage that was patched up with a titanium mesh, a huge Macro Adenoma was removed, and a physical and emotional wasteland left behind. That type of surgery usually lasts about 4 hours, but mine was 9 due to difficulties. Click to read the full letter...
 
•  Winter, 2010 pituitary Code 101483
YOU! DO! NOT! HAVE! CUSHING'S!" My endocrinologist yelled after I requested more testing despite three negative 24 Hour Urine Free Cortisol tests and a below normal Low Dose Dexamethasone test. "YOU! CAN'T! PROVE! THAT!" I yelled back while my mind desperately reeled for more arguments, more statistics, more anything to get another test for Cushing's. Click to read the full letter...
 
•  Winter, 2010 pituitary Code 080357 - This is an update
Hello, my name is Carrie. About four years ago, I sent in a letter and a few pictures for the CSRF newsletter (fall 2006). I thought it was well written and truthful (it was) but something has been troubling me since then. I wasn’t what I had written, it was what I hadn’t written. Click to read the full letter...
 
•  Winter, 2010 adrenal Code 080806
My story is very similar to the others that you'll see here, with one notable exception; I'm a man! I find it interesting that the vast majority of experiences here are from women. I understand that Cushing's is more common in women, but not to this extent. I suppose men just aren't as comfortable sharing their experiences. Click to read the full letter...
 
•  Winter, 2010 - pituitary - Code: 101564
Our son, Hunter, has always been very active, enjoying playing baseball and football as a young boy, and more recently in high school. In retrospect, we noticed some changes when Hunter was 11 and was in 6th grade. But, he was feeling well and staying active, so we thought any changes we were seeing was just due to the normal time of puberty. Click to read the full letter...
 
•  Code 080066 pituitary – Spring, 2010
My battle with Cushing’s follows the basic pattern. My problems began long before I had ever heard of Cushing’s. I had a pretty good life…no, it was a GREAT life - married with 4 healthy active children. I wasn’t exactly a stay at home mom but my work always involved my children. I stopped volunteering at our children’s pre-school when our youngest was only 2. That’s when I moved from being a volunteer to becoming part of the pre-school staff. Click to read the full letter...
 
•  In Loving Memory of Kym - Spring, 2010
My sister Kym was a vibrant, loving and caring person. Active and busy, her life revolved around her husband and their 5 children; the youngest of whom is now in 6th grade. She was involved in all of her children’s activities-- the perfect example of a “Super Mom”! Click to read the full letter...
 
•  Code 080825 - Winder 2009
I believe it all started 15 years ago. I started seeing changes in my appearance, behavior and temperament back in 1995. Below is my history of the last 15 years and looking back now, when I feel I started to have signs of Cushing’s Disease. If only I knew then what I know now... Click to read the full letter...
 
•  Code 091053, Winter 2009
In reflecting on my journey, it all seemed to begin around my senior year in high school. I began to have irregular menses. It was nothing my doctor seemed all that concerned about at the time. What I remember next was when I was a sophomore in college. I was sprouting a moustache and I began having bad acne and cysts. Because I did not have health insurance, I did not see a doctor until I became very ill. Click to read the full letter...
 
•  Code 091183 - Fall, 2009
As I read stories others had written about their situations with Cushing’s Disease, I laughed, had numerous “me too” moments, and wanted to cry with you. Now I want to share my story, with the hope that it will encourage others and just maybe help someone get a correct diagnosis quicker than I did and get on the road to feeling better. Click to read the full letter...
 
•  Code 091029, Fall 2009
I always dreaded going to see a doctor for the first time, as I knew they would ask for my medical history, and I never knew where to begin… Click to read the full letter...
 
•  Code 091197, Fall 2009
This is a small glimpse into my life and my struggle with Cushing’s. I was diagnosed with Cushing’s syndrome when I was 13 y.o. We were in India at the time and there was very little known about Cushing’s or even the appropriate course of treatment for such a disease. Click to read the full letter...
 
•  Code: 2087, Spring 2009
I had successful surgery in May 2006 to remove a pituitary tumor. Following surgery I was informed that although 75% of my pituitary gland had been removed, it could still function normally. Click to read the full letter...
 
•  Code 080925, Spring 2009
Are you misunderstood? Have you been told, it is all in your head? You are fat, get over it. You are depressed; anti depression, medications will help you. Do people look at you differently? Click to read the full letter...
 
•  Code 080816, Summer 2008
Hi! My name is Donna and I am writing to you from Dallas, Texas. I am recovering from Cushing’s. I suffered with the symptoms for many years. I know I started showing signs of it in late 1999. I started gaining a little weight, not a lot but enough to show on my 4’11” frame. In Click to read the full letter...
 
•  Code 80395, Summer, 2008
It is December 2006, I am at the lab for a blood test, a different lab than I usually go to. Of course there is a long wait and in the chair next to me is the Readers Digest with an article that reads “Misdiagnosed”. I started reading and before I finished a couple pages I thought, “Oh my Gosh this is me !!!!!” I took it home for my husband to read and he agreed. Click to read the full letter...
 
•  Code 080678, Summer 2008
I was 28 years old, a newlywed, and in my third year of nursing school (my second bachelor’s degree), when I finally found a doctor that believed my feeling that something was wrong with me. I had spent nearly 7 years listening to my family doctor tell me that there was nothing medically wrong with me; his exact words were, "I know your family, everyone tends to gain weight when they get older. It’s just your turn now." Click to read the full letter...
 
•  Code 080676, Summer, 2008
I am a newbee. I hadn’t even heard of such a thing as Cushing’s disease until last year (2007). Pituitary? Beats me - must be some gland somewhere. What the pituitary actually DID was way beyond my scope. I was a 52 year old aviation photographer living in the Napa Valley totally ignorant that I had a life threatening illness. Click to read the full letter...
 
•  Code 091123, Fall 2009
I'm a new member of CSRF, and this is my Cushing's story! I had always been an active person. I danced, was in the marching band's color guard, participated in school musicals. I had lots of energy, and a very fast metabolism. I could eat whatever I wanted and at 5 feet 9 inches, stayed at 130 pounds. I slowed down a bit in college. They didn't have a marching band, and it was harder to get into the drama club. I gained the typical "Freshman 15," and then some. Click to read the full letter...
 
•  Code: 1165, Spring, 2008
I had an adrenal gland removed and like others, went through that awful waking up period. It took over 3 years for my remaining adrenal to take over. Part of this may have been my inability to successfully taper due to extreme body pain and pain syndromes that I went through about 6 months following surgery. Click to read the full letter...
 
•  Code 2052, Spring 2008
My name is Janet and I would like to share my Cushing's experience with you. In July of 2003, just before my 59th birthday, several events occurred in my life that were very emotionally upsetting. After handling each of them to the best of my ability, I found that several months later I seemed to be experiencing moments of anxiety. Click to read the full letter...
 
•  Code: 2128, Sping 2008
I use to wonder how many diseases it would take before I’d be placed into The Guinness Book of World Records. In nine years, I’d been diagnosed with clinical depression, high blood pressure, type II diabetes, PCOS, endometriosis, obesity, adult cystic acne, ocular hypertension leading to possible glaucoma, sarcoid uveitis, metabolic disease, and panic attacks. Click to read the full letter...
 
•  Code 1158 Fall 2007
GRATEFUL SURVIVOR There isn't a day that goes by when I don't think of my experience with Cushing's Disease. I have constant reminders that my body is not the same, such as my slightly protruding stomach and a few pounds of extra weight I still carry (the endocrinologist says it is as if I had twins), or the few hairs on my chin, times of decreased energy, and what I call 'brain spasms' which are moments when my mind short circuits. Click to read the full letter...
 
•  Code 2146 Fall 2007 - Updated April 2009
Never in a million years would I have dreamed I'd be writing a letter like this. All of my life I'd been an active, athletic girl who loved sports, working out, and being physically active. I was a big runner all throughout high school and never had a problem with my weight. In fact, if anything, I was probably too small and people would comment on how "tiny" I was. Click to read the full letter...
 
•  Code 2114 Summer 2007 CA
Monday, August 12, 1996 was another hot summer day in Los Angeles. We had just returned from Los Angeles Children's Hospital where my son, Dylan, had just had another MRI on his head. Because Dylan had to undergo anesthesia, he was feeling very tired. The phone rang. It was Dr. Thomas Roe, head of the endocrinology department, with whom we had spent the morning. Click to read the full letter...
 
•  Code 2120 Date: Spring, 2007 Washington
My Cushing's Story-Most of these stories start with, "I knew something was wrong, I just didn't know what". Not me - I thought I knew. I was diagnosed with Type 2 diabetes, and was given oral medication, along with annoying lectures about making "lifestyle changes" - diet and exercise regimens that, for the most part, I had been following anyway. Click to read the full letter...
 
•  Code 2119 Date: Spring, 2007 British Columbia
My story sounds like every other Cushing's patient's. I was a typical kid growing up; always healthy, slim, and moderately athletic. I participated in physical education class at school, took swimming lessons and went horseback riding. There was no history of obesity in my family. Click to read the full letter...
 
•  Code 2149 Spring 2007 GA
My oldest son Easton was diagnosed with Cushing's disease in December 2006. Easton has always been a very healthy, active boy. He has always been rather small, not abnormally so, just little. Click to read the full letter...
 
•  Code 2122 Date: Spring, 2007 Florida
My experience with Cushing's is very similar to many I have read. My entire adult life I had always been very active, working out every day and very conscious of the foods I ate. Click to read the full letter...
 
•  Code 2123 Date: Spring, 2007 North Carolina
Like so many of the other Cushing's stories, similarly my story starts with years of odd health problems, numerous doctors, no one believing there really was a problem, to finally gaining a great deal of inner strength to believe in myself. Click to read the full letter...
 
•  Code 2122 Date: Spring, 2007 Florida
It's been almost 8 months since my pituitary tumor was removed. I'm most thankful for my family support and the fact that we didn't stop asking questions until I was finally diagnosed. Click to read the full letter...
 
•  Code 749 Spring 2007 KY
"(The following letter, written in 1999, now includes an encouraging update); Since 1993 I have been through a lot of sickness; kidney stones, ulcers, high blood pressure, back strain, stress fracture toes, and sprained wrists that turned into Carpal Tunnel Syndrome. All of this leading into the biggest daddy of them all; "CUSHING'S SYNDROME". Click to read the full letter...
 
•  Code 2144 Spring 2007 Florida
Journey with Me-Hello everyone, would you like to take a journey with me? My name is Sharon Peacock and I am a 57 year old married woman, mother (Jeffrey - 35 years old) and grandmother of 3, Jordyn 7, Kacie 5, and Joshua 2. Click to read the full letter...
 
•  Code: 1108
I have what Dr. Stratakis at NIH describes as an "ugly little" 2 cm tumor on my right adrenal that he believes is functional. It was discovered 3 years ago after an episode of pancreatitis and has not grown significantly since then. Click to read the full letter...
 
•  Code: 1092
I was a very active young woman all of my life. Physical fitness was a big part of my life. Before I was married, I was an aerobics instructor aside from having a full-time job and I occasionally jogged on the weekends. All of my teenage years, I had many problems with my menstrual cycle. Click to read the full letter...
 
•  Code 2099 Date: Spring, 2007 Rhode Island
Cushing's Chapter of My Life "What was wrong with me?" Around 1995 my body was going through some kind of change. I felt mildly depressed at times, but I guess everyone experiences this some time or another in his or her lifetime. Click to read the full letter...
 
•  Code 2110 New Hampshire
Despite strict attention to my diet (about 1000) calories) and three or four days a week in the gym, I fought weight gain since my late 40s, the better part of 20 years. I was eventually told that I had hypothyroidism. Click to read the full letter...
 
•  Code 2115 Fall 2006
I am a 33 year old wife and mother of (2) beautiful daughters, ages 12 and 8. I celebrated my 14th wedding anniversary in March of 2006 right before I had my bi-lateral adrenalectomy. Click to read the full letter...
 
•  Code 1065 Fall 2006
I am a 52 year old woman who has been living on the Cushing’s rollercoaster of life. For three and a half years, I struggled with getting a diagnosis from eleven different doctors and as I dead ended with each doctor, though my symptoms were many. Click to read the full letter...
 
•  Code 880 Fall 2006
How about some good news for a change? I hope you believe in miracles, because I believe I’m living one right now! Click to read the full letter...
 
•  Code 2098 Fall 2006
My name is Bruce and I am an old timer when it comes to Cushing’s! In 1956 at the of 19, I was diagnosed with the disease. I was lucky enough to live in the New Haven, CT area where I had connections at Yale New Haven Hospital. Click to read the full letter...
 
•  Code 2094 Fall 2006
“What you don’t know can’t hurt you”. That phrase has never passed through the lips of a Cushing’s victim! You haven’t heard of Cushing’s you say? Let me introduce you. Click to read the full letter...
 
•  Code 2089 Summer 2006 Under 18 at diagnosis and adrenal tumor
How Do We As Parents Deal with Our Childrens' Cushing's? In August of 2004, our lives changed completely. I took our five year old son to his pediatrician for his check-up for kindergarten. Everything looked fine and all looked normal. Click to read the full letter...
 
•  Code 2079 Summer 2006
I had adrenal surgery on Wednesday, April 5 because I had Cushing's Syndrome. I am a reporter for the Cleveland Jewish News and shared my symptoms and experience with our many readers. Click to read the full letter...
 
•  Code 2006 Summer 2006
My name is Lee and I am 49 years old, living in rural Utah. I am married and have three daughters aged 28, 26 and 18. I am a self-employed painter with HMO insurance. Click to read the full letter...
 
•  Code 2087 Summer 2006
Like many other patients with Cushing’s, I am not certain when the disease started, but I had some symptoms for several years that may or may not have been related to Cushing’s. Click to read the full letter...
 
•  Code 2069 Summer 2006
I don’t know how long I’ve had Cushing’s Disease/Cushing’s Syndrome. In fact, I’m not even sure what brought it on and my doctors have never answered that question. Click to read the full letter...
 
•  Code 2088 Summer 2006
I really don’t know just how long I had Cushing’s before I was officially diagnosed. I started taking blood pressure meds in mid 2004 at the suggestion of my internist; this is about the same time I started retaining water and gaining weight. My internist told me it was just a condition of aging. Click to read the full letter...
 
•  Code 2035 Summer 2006
I am forever indebted to CSRF for the wealth of information and support they provide via the newsletter and website. Without this information and support I would not have gotten through this critical time in my life. Click to read the full letter...
 
•  Code 2077 Summer 2006
Most of what I have been through with my Diagnosis of Cushing’s Disease, successful transphenoidal surgery and entry into the recovery stage of the disease sounds much like many of the other letters that have been submitted. Click to read the full letter...
 
•  Code 2076
My name is Jože (29 years old). I live in Ljubljana, capital town of Slovenia (small country in Central Europe; part of European Union). I was diagnosed with a Cushing´s syndrome in March 2003 after a longer period of typical symptoms that presented already a year before that (weight gain, red stretch marks-striae, round face). Click to read the full letter...
 
•  Code 2066 Spring 2006
I am 52 years old, married with a beautiful daughter and absolutely adorable grandson. I teach Family and Consumer Sciences and also have a degree in Dietetics. Click to read the full letter...
 
•  Code 992 Spring 2006
Hi! I am an old member. I have been battling Cushing’s for years. I was first diagnosed in 1990. Click to read the full letter...
 
•  Code 2056 Spring 2006
I was diagnosed with Cushing's Syndrome "officially" in June 1997. The symptoms began in August 1996. Click to read the full letter...
 
•  Code 2061 Spring 2006
I am 64 years old and had an adrenal tumor removed in November of ‘04. I am having a hard time with coritsol withdrawal. Click to read the full letter...
 
•  Code 2051 Spring 2006
I am a 32 year old mother of four beautiful children. I was diagnosed with Cushing’s due to bilateral adrenal tumors in February of 2005. Click to read the full letter...
 
•  Code 2027 Spring 2006
I have worked out 5-6 days a week since I was 16. I always had a very physical job and went to school. I dieted, I tried high carb/low protein and high protein/low carb. Click to read the full letter...
 
•  Code: 716 1996
Age 46. Married. One daughter in 5th grade, another in 10th. Working in a high stress job 4 ½ days a week. Busy all the time. I started gaining weight and would eat dinner then head for a box of crackers even though I was already full. Click to read the full letter...
 
•  Code 2055, Fall 2005
Hi, I am Tim Turner, from Seattle, WA. I had ectopic Cushing’s caused by a lung carcinoma. Click to read the full letter...
 
•  Code 2050, Fall, 2005
My story is a bit different from most of the articles I have read in these newsletters. Like all Cushing's patients I suffered a great deal but I did not suffer for very long because I was very lucky to have been diagnosed early on Click to read the full letter...
 
•  Code 2054, Fall, 2005
I wish that I had had someone to reach out to me during my ordeal with Cushing's. I wish I had known about the Cushing's Foundation to help me get through my nightmare. However, I am thankful that now I may be helpful to someone else. Click to read the full letter...
 
•  Code 880: Summer 2005
My name is Bob. In 1995, I began having health problems. The doctor I was seeing at the time insisted that nothing was wrong with me. Click to read the full letter...
 
•  Code 2045, Summer 2005 Virginia
Hello! I have been on your website for the past year and wanted to share my story and pictures. I hope it can help someone going through what everyone with Cushing’s understands. Click to read the full letter...
 
•  Code: 1175, Spring 2005
When I look back on things, I first noticed a problem with weight gain in the winter of 2000. I continued gaining and began filling out more in my face and middle through that summer and into winter 2001. During that time I also started having sleepless nights regularly. Click to read the full letter...
 
•  Code: 2014, Spring 2005
I weighed about 100 lbs. up until I was 20 (1997), when I started showing symptoms of Cushing’s (typical weight gain, moon face, striae, excess facial and body hair). A year later, I had put on probably 25 lbs. Click to read the full letter...
 
•  Code: 1197 Spring 2005
I remember one afternoon my son came home from his first day of first grade and said to me….”Mommy, what does “chubby” mean? Immediately, my heart sunk…already at the age of six my son was learning the cruel reality of how society views overweight individuals, even young children. Click to read the full letter...
 
•  Code 2013: Spring 2005 Wyoming
My name is Maryann and I am a Cushing’s victim. At the age of forty-four, I noticed something was going on with my body, and like most other Cushing’s people, I had no idea why my body and mind were changing. Click to read the full letter...
 
•  Code 1083, Winter, 2005
This letter is written not only to tell my 'Cushing's' story but to officially thank Louise Pace for organizing the Cushing's Foundation to provide support and promote awareness of this very dreadful disease and for helping me in particular by guiding me to the proper treatment that saved my life. Click to read the full letter...
 
•  Code: 2005, Winter, 2005
I'm not quite sure when this all really started. I remember being a junior in college (1999-2000) surviving dorm food, moving to an apartment and eating healthier foods, yet I was gaining weight. Click to read the full letter...
 
•  Code 1190, Winter, 2005
My story seems to be much like that of many others that are suffering from Cushing's disease. Since the early 90's, it appeared that my health was declining. Click to read the full letter...
 
•  Code 1165 Kansas
In April 2002 I visited my internist complaining of weight gain. I had been exercising for several months but still continued to gain weight. This was attributed to a changing metabolism (i.e. getting older), which I think was partially the case. Click to read the full letter...
 
•  Code 1008, Winter 2005 Florida
A Long Road To Diagnosis! The first time I really realized that I had a serious problem was March, 1999 on a flight home from Salt Lake City where we had been skiing with friends. Click to read the full letter...
 
•  Code 2009, Winter, 2005
Hi! I'm hoping you can help me! I am a black female in Atlanta GA, a medical/surgical nurse, and recovering from Cushing's syndrome. I was finally diagnosed in February 2003 after going through at least 8 doctors to get the correct diagnosis. Click to read the full letter...
 
•  Code: 1151 Fall 2004
My story is very much like that of so many of you. I'm a 56-year-old wife, mother, and grandmother. I work in a public school and tell students that their stories must have a beginning, middle, and end. Click to read the full letter...
 
•  Code: 253 Fall 2004
Hi, my name is Joanne and I just had to write a letter about my recent experience with growth hormone. Click to read the full letter...
 
•  Code: 1142 Fall 2004 Pennsylvania
Pieces of a Puzzle- "Oh no, not again!" Sherry, my friend, shrieked on that memorable evening in July, 2002. "Remember what happened last year? Your skin graft? You need to see a wound care doctor. Click to read the full letter...
 
•  Code: 263 Fall 2004 California
It has been approximately 10 years since I found out I have a left adrenal tumor. Since I was seeing an Endocrinologist for hypothyroidism, he agreed to treat me for Cushing's. Click to read the full letter...
 
•  Code: 901, Date: June, 2004
My Mother's Story: At age seventy-seven, my mother, Mary Monderine Tursi passed away on November 28th, 1998 after suffering many years from Cushing's syndrome. Click to read the full letter...
 
•  Code: 1158 June 2004
My name is Pat. I had a Pituitary Tumor (Cushing's Disease) removed 12/17/04, (Macro 1.4 cm or 14mm size) by Dr. Kelly at UCLA. This has been a long journey for me. Click to read the full letter...
 
•  Code: 1013 Date:June, 2004
I would like to thank the CSRF for keeping in touch with your newsletter; it is very comforting. My story is like many others. My symptoms started in 1996 and I was not diagnosed until 1999. Click to read the full letter...
 
•  Code: 1174
My third daughter, Sam was born five weeks early on March 22, 1999. While she was only 5 lbs. 11 oz, and 19" long, the startling thing was that her cheeks seemed to be three times larger than normal newborns. Click to read the full letter...
 
•  Code: 1146
I wanted to thank all of you for your help and information about Cushing's. I was diagnosed with Ectopic Cushing's, Kulchitsky neuroendocrine tumor, carcinoid of the lung. Click to read the full letter...
 
•  Code: 984
I developed Cushing's at the age of twelve and was not diagnosed until almost fifteen. A relative I had not seen in quite some time noticed I was rather obese and had poor growth in height. Since my physical changes had occurred so gradually, my immediate family had not realized the outward appearance had been altered. Click to read the full letter...
 
•  Code: 777 Date: Spring, 2003
It was 6 years August 15th since my adrenalectomy. Click to read the full letter...
 
•  Code: 1107 Date: Winter, 2003
I began having serious health problems in my mid twenties. High blood pressure, kidney stones (twice), weight gain, big tummy, small arms and legs, headaches, blurry vision, broken bones, ripping skin, and infections in my body without breaks in my skin. I finally went to an endocrinologist and was diagnosed with Cushing's. Click to read the full letter...
 
•  Code: 1141 Date: Winter, 2003
I am 55 and am three years past successful transsphenoidal surgery. I am originally from France, lived in Quebec, Canada for a number of years and moved to the US in the late 90's. Click to read the full letter...
 
•  Code: 938 Date: Winter, 2003
Five years after having recovered from Cushing's Syndrome, I have finally regained full confidence in my health. I was diagnosed with Cushing's at age 29 in April 1997, caused by an adrenal adenoma which I believe I had for about five years. Click to read the full letter...
 
•  Code: 721 Date: Fall, 2002
This is the third time that I've had a letter printed by CSRF. My first letter was during my diagnosis and the many tests and operations from the doctors here in Rochester, NY. They even sent me all the way to Portland, OR for a PSI test, which was "all inclusive", just like all the other tests, but they couldn't find my tumor! Click to read the full letter...
 
•  Code: 866 Date: Fall, 2002
Last September 18, was three years since my pituitary surgery. At first it was thought that I had Cushing's for about five years, but now I think it started in high school which was over twenty years ago! Click to read the full letter...
 
•  Code: 160 Date: Fall, 2002
My story has been in the working for over 10 years. It's much like yours, weight gain, swelling around the neck, blurry vision, lethargy, loss of taste, sounding familiar? After two years of being misdiagnosed and referred for psychiatric help, I haunted the library and ended up diagnosing myself! Click to read the full letter...
 
•  Code: 1092 Date: Fall, 2002
It all began right after Mary, my second daughter, was born in January 2000. I thought I had post-partum depression and my doctor gave me a vitamin regimen to follow. Click to read the full letter...
 
•  Code: 777 Date: Fall, 2002
My story began sometime in 1995 and after numerous visits to various doctors I was finally diagnosed by my family physician. Click to read the full letter...
 
•  Code: 823 Date: Fall, 2002
My Cushing's diagnosis came about eight years after I started feeling sick. In 1997, because of a change in insurance, I saw a new doctor. Click to read the full letter...
 
•  Code: 1037 Date: Winter, 2002
It was a nightmare during the years of not knowing what was wrong with me. One doctor told me to see a psychiatrist. I was so depressed. Click to read the full letter...
 
•  Code: 1057 Date: Winter, 2002
My story may read like a lot of others you have heard. It is amazing to me to open each newsletter and see all the similarities. Click to read the full letter...
 
•  Code: 1129 Date: Winter, 2002
Hi, my name is Kim and I am a 30-year-old who was just diagnosed with Cushings Syndrome in May. They found a tumor on my left adrenal gland and I underwent a laproscopic surgery on June 22, 2001 to remove both the tumor and adrenal gland. Click to read the full letter...
 
•  Code: 1070 Date: Summer, 2001 Undiagnosed
I am currently 37 years old. I think my Cushing's probably started while in High School. My menses started at age 10 and were never regular, and I was given medication to correct it. Click to read the full letter...
 
•  Code: 844 Date: Summer, 2001
My first surgery was in February of 1992 in Oklahoma City. It was a prolactin adenoma about the size of a quarter. Within two years, I felt like my body was falling apart with more Cushing's symptoms. Click to read the full letter...
 
•  Code: 716 Date: Summer, 2001
I was diagnosed in 1997 with Cushing's Disease after about six months of symptoms. I had my first transsphenoidal surgery in Hartford, CT. Although no tumor showed up in the pathology report, I was cured for a year. Click to read the full letter...
 
•  Code: 848 Date: Summer, 2001
I cant' believe it's only been three and a half years since my surgery! Click to read the full letter...
 
•  Code: 928 Date: May, 2001
I have had this letter in my head for a while now but not until recently was I able to even think about actually writing it. I am a 17-year-old senior in high school. I had Cushing's Disease and had surgery at NIH in March of 1999. I am recovering and looking forward to a complete recovery! Since I know that you have heard many stories, I will spare you of hearing yet another. Click to read the full letter...
 
•  Code: 1055 Date: May, 2001
I was very unwell with various symptoms for a long period of time with weight gain, mood swings, depression, thinning of the hair, dry scalp, stretch marks, spotty skin, high blood pressure, and hot flashes. Click to read the full letter...
 
•  Code: 838 Date: May, 2001
We seem to think our story is different because it happened to us. I was diagnosed with Cushing's in September of 1997. I was 26 years old. Click to read the full letter...
 
•  Code: 1058 Date: May, 2001
Looking back, I am quite frustrated with "the system" and how uninformed the doctors were. Because I was pregnant, my doctors were not concerned about the purple stria, high blood pressure, acne and moon face. Click to read the full letter...
 
•  Code: 1005 Date: May, 2001
I am a 46-year-old housewife, mother and office manager at my husband's dental practice diagnosed in April of 2000. My main symptoms over the past three years were hypertension, weight gain and a puffy face. Click to read the full letter...
 
•  Code: 1161
I am the luckiest man alive. I'm writing this letter after almost losing my life. Cushing's has changed me as a person. My life will never be the same. Click to read the full letter...
 
•  Code: 1000
Hello All! My name is Janice McCarrick. I was diagnosed with Cushing's in late1999 and my surgery was in March of 2000. My Cushing's letter is on the web page under Code 1000. Click to read the full letter...
 
•  Code: 989 Date: August, 2000
My name is Kathy and I'm 50 years old, married with 2 daughters and 3 granddaughters. About three years ago, I started having problems of high blood pressure, swollen feet and ankles, bruises, weight gain in face and mid-section, sleeplessness, hair loss, fractures and memory loss. Click to read the full letter...
 
•  Code: 965 Date: August, 2000
I WAS GETTING MARRIED IN 6 MONTHS AND HAD LOTS OF WEDDING STRESS! My daily intake was around 800 calories and even though I exercised every day, I was gaining weight. Click to read the full letter...
 
•  Code: 884 Date: April, 2000
I was diagnosed with Cushing's Disease when I was ten years old in fifth grade. The years before I was diagnosed were terrible! I was teased all the time about my weight. My doctor kept telling me that I was just a big girl. He didn't seem to worry that I wasn't growing and that I kept gaining weight. I barely ate anything and I exercised excessively. The foods I ate were healthy, not junk food. Click to read the full letter...
 
•  Code: 1027 Date: April, 2000
I am a 51 year old mother of five who had always been actively involved with my children and community. Eight years ago I started getting bruises the size of softballs on my legs. Tests showed nothing. My blood pressure started to rise and my eyes were giving me trouble. Click to read the full letter...
 
•  Code: 893 Date: April, 2000
At 45 years old, I was finally diagnosed as having a pituitary tumor. My weight had been steadily increasing over about 14 years from 168# to 204#. Click to read the full letter...
 
•  Code: 992 Date: April, 2000
My symptoms came at an early age, possibly at birth. As a child I was very nervous with tremors. I would perspire profusely and was bigger than other children until I was twelve. Click to read the full letter...
 
•  Code: 1000 Date: April, 2000
I am a 34-yr-old homemaker! In January of this year, I was diagnosed with Cushing's disease. My diagnosis finally came from an endocrinologist after many years of visits to my primary care physician and my gynecologist. Click to read the full letter...
 
•  Cyclic Cushing's - Code 2093
During a diagnostic work up for Cushing's Disease, I was challenged, as are many others, in determining when to test for elevated cortisol levels. I used a spreadsheet to capture a variety of symptoms on a daily basis and to help identify patterns that represented a "high". I learned to track everything, and to test when I felt "different". Some of the things I tracked included headaches, heart symptoms, fatigue and energy levels, sleep disturbances, wooziness, blurred vision, face flushing, GERD symptoms, leg, feet and ankle swelling, increase in facial hair, irritability, achiness, and blood sugar levels. Click to read the full letter...
 
•  Code: 908 Date: November, 1999
I am 43 years old. I was diagnosed with Cushing's Disease in July 1998 after two years of complete misery. Click to read the full letter...
 
•  Code: 980 Date: November, 1999
My story begins a lot like yours. After my 5th child was born, I lost little of the weight. A few months later, my cheeks started turning red. I went to a dermatologist who first thought I had windburn, then dry skin, and finally rosacea that didn't respond to treatment for two years. Click to read the full letter...
 
•  Code: 895 Date: November, 1999 MALE
I was diagnosed by Dr. Govier, urologist, at Virginia Mason Medical Clinic, Seattle WA in March of 1992, because of lack of sex drive pointed out by my wife. Click to read the full letter...
 
•  Code: 927 Date: November, 1999
I am a 42-year-old white female, 5"4", 127lbs., married 21 years with one 17-yr. old son. After the birth of my son, I started noticing course hair growing on my stomach. When I started driving the bus, we were required to have a yearly physical. Click to read the full letter...
 
•  Code: 861 Date: August, 1999
My story starts the same as most of the rest: weight gain, memory and concentration loss, bruising, buffalo hump (how did they miss that??) and lots of non-productive doctor/chiropractor/massage therapist/accupuncturist visits. Click to read the full letter...
 
•  Code: 910 Date: August, 1999
I had one adrenal gland removed in March of 1999 due to a tumor that was causing my Cushing's. Click to read the full letter...
 
•  Code: 811 Date: February, 1999
I had surgical removal of a pituitary tumor in September of 1992 at the Mayo Clinic in Rochester, Minnesota. Click to read the full letter...
 
•  Code: 1016 Date: February, 1999
I was diagnosed with Cushing's and had a pituitary tumor (4 mm) removed by transsphenoidal surgery in November of 1993. Click to read the full letter...
 
•  Code: 848 Date: February, 1999
I was 47 years old and most of my friends were going through menopause or post menopause. They thought I was too. My husband thought something was up but attributed my weight gain to over eating. Click to read the full letter...
 
•  Code: 1145: Date 1999
I was a 30-year-old successful businessman with a small chain of flower shops in Northern Virginia. The very first symptom I noticed was a decrease in my ability to maintain my balance. Click to read the full letter...
 
•  Code: 818 Date: December, 1998 Undiagnosed
I am 44 years old, and have been suffering from what many doctors initially say is "classic Cushing's" for about 15 years. Click to read the full letter...
 
•  Code: 841 Date: December, 1998
In 1996 when I was 16, I was diagnosed with Cushing's Syndrome. Before being diagnosed I was seeing a dermatologist for a severe acne problem. The dermatologist noticed that I had a more than average amount of facial hair and he and my mother assumed it was due to me having some Mexican heritage. Click to read the full letter...
 
•  Code: 821 Date: December, 1998
I am a 37 year old mother of two small children. In March of 1996, I went on birth control pills and at the same time went on the popular Cabbage Diet. Click to read the full letter...
 
•  Code: 750 Date: December, 1998
It all started in 1977. I was 47 years old, the mother of five children and actively involved with church, schools, colleges, etc. I started having problems and went for a check-up only to be told I was probably going through the change. Click to read the full letter...
 
•  Code: 869 Date: December, 1998
Here's an update on what's been happening with me. After 3 1/2 years it appears that I am "cured". So much has happened since I was first told I had Cushing's in December 1994. Click to read the full letter...
 
•  Code: 756 Date: December, 1998
I have been a member for about 2 years now. I have had a failed pituitary surgery and apparently, radiation two years ago. I do not know of anyone in this area with Cushing's and the doctors don't seem to know much about it either. Click to read the full letter...
 
•  Code: 739 Date: December, 1998
I was diagnosed with Cushing's Syndrome in Jan 1997, after my family doctor suggested that my uncontrolled high blood pressure could be due to an underlying disease. Click to read the full letter...
 
•  Code: 190 Date: December, 1998
I was 59 years old when I began to gain weight for no known reason. I never had a weight problem before because I was so active. I tried to flatten my stomach with sit-ups, but nothing worked! Click to read the full letter...
 
•  Code: 849 Date: July 1998 New York
I don't know how long I had Cushing's disease. I feel so different since the surgery that I can't tell. In February, 1997 my menstrual cycle stopped. Click to read the full letter...
 
•  Code: 849 Date: July, 1998
I don't know how long I had Cushing's disease. I feel so different since the surgery that I can't tell. In February, 1997 my menstrual cycle stopped. Click to read the full letter...
 
•  Code: 160 Date: July, 1998
I remember....... I was afraid to lift the baby. Our grandson was born January 22, 1992 and by then I was very ill. During the latter part of the 1980's, "things" began to happen to me. Click to read the full letter...
 
•  Code: 290 Date: July, 1998
I am not sure how I got on your distribution list, but I would like to say "Thank You". I just wish that when I was sick, I would have had a support group like this one. Click to read the full letter...
 
•  Code: 938 Date: January, 1998 New Jersey
received an issue of The Cushing's Newsletter in spring of 1997 after being diagnosed with Cushing's syndrome in April of 1997. It was very helpful then to know that I was not alone, and it was reassuring to read letters by others which could have been written by me! Now that I have some perspective on my illness and have had an almost complete recovery, I'd like to share my story. Click to read the full letter...
 
•  Code: 724 Date: January, 1998
A prolonged use of a steroid cream caused a severe case of Cushing's syndrome. My appearance changed hideously. I became hump-backed with a bloated face and belly. Click to read the full letter...
 
•  Code: 270 Date: January, 1998
I was a classic textbook case of Cushing's and still doctors didn't recognize it. I had acne over most of my body, facial hair, tight curls on my head, a moon face, dark areas on knees, elbows and finger joints. Clothes would be loose on me in the morning and skin tight by supper time. Click to read the full letter...
 
•  Code: 433 Date: January, 1998
I am a 49 year old white female and employed as a technician at a local hospital near were I live. I was gaining weight anywhere from 145 to 187 pounds about three times a year and then returning to my normal weight. Click to read the full letter...
 
•  Code: 253 Date: January, 1998
After my son was born in 1973, I went into a depression. Everyone thought it was postpartum blues after having a baby. The depression lasted a long time. In the meantime I was getting heavier and gaining more weight, especially in my stomach and trunk of my body. Click to read the full letter...
 
•  Code: 938 Date: January, 1998
I received an issue of The Cushing's Newsletter in spring of 1997 after being diagnosed with Cushing's syndrome in April of 1997. Click to read the full letter...
 
•  Code: 105 Date: January, 1998
I have just received my application for membership which I am sending in immediately. Thank goodness there is finally a support group for Cushing's. Click to read the full letter...
 
•  Code: 782 Date: Fall, 1997 MALE
I was diagnosed in April, 1997 and had transsphenoidal surgery on April 23, 1997. Click to read the full letter...
 
•  Code: 739 Date: Fall, 1997
I just finished a book called "Coping with Prednisone" by Eugenia Zukerman and Julie Ingeltinger, MD, who is a doctor at Mass. General. Click to read the full letter...
 
•  Code: 783 Date: Fall, 1997
MY PARENT HAD CUSHING'S. Hi! I'm 15 years old and I thought my life was about to end. Click to read the full letter...
 
•  Code: 776 Date: Fall, 1997
After ten years of doctors' appointments and many strange symptoms, I was finally diagnosed with Cushing's in 1989. I was scared but relieved to know that I was not losing my mind, since Cushing's does affect our hormones and so many emotions. Click to read the full letter...
 
•  Code: 774 Date: Fall, 1997
I was diagnosed with Cushing's in May of 1997. On July 7, I had an adrenalectomy that was done by the laparoscopic procedure. Click to read the full letter...
 
•  Code: 730 Date: Summer, 1997
I am 54 years old and was diagnosed in May of 1996. I had been suffering with a lot of different illnesses, such as high blood pressure, weight gain, broken bones, muscle weakness and much more. Click to read the full letter...
 
•  Code: 260 Date: Summer, 1997
I am 83 years old and my adrenalectomy was performed in 1951 when I was 38 years old! Click to read the full letter...
 
•  Code: 771 Date: Summer, 1997
At age 21, my pituitary tumor was removed. I had been diagnosed by my dermatologist who noticed the hump on my back. Click to read the full letter...
 
•  Code: 727 Date: Summer, 1997
I hurt my back in 1990 working in retail as a manager. Since that time, it seemed like everything went wrong. Click to read the full letter...
 
•  Code: 728 Date: Summer, 1997
I have been extremely active with the Pituitary Tumor National Association when I found out about CSRF on the Internet. Click to read the full letter...
 
•  Code: 721 Date: Summer, 1997
I have a brand new granddaughter and plan to fight this disease so I can spend time with her!! I have had Cushing's for over 20 years. Click to read the full letter...
 
•  Code: 415 Date: Summer, 1997
When I saw pictures of Christopher Reeve falling from his horse and learned that he was paralyzed from the neck down, I was stunned. "What will he do?", I wondered. What a tragedy! A handsome, talented, successful movie actor unable to move. How could he bear it? Click to read the full letter...
 
•  Code: 748 Date: Summer, 1997
I saw the article on Cushing's in the Boston Globe and called to get the newsletter. As you'll see by my story, things went differently for me. Now that I realize how difficult things can be with Cushing's, I wanted to share my "success story". Click to read the full letter...
 
•  Code: 766 Date: Fall, 1997
I was born and raised in a small town in SE Alaska, where my twin boys and my daughter were also born. Click to read the full letter...
 
•  Code: 337 Date: Spring, 1997
As a young girl from Southeastern Kentucky, my dream was to play basketball for the Kentucky LadyKats, however, the master plan for my life turned out to be much different. Having Cushing's disease and three surgeries, made me see that my childhood dream was gone forever. Click to read the full letter...
 
•  Code: 729 Date: Spring, 1997 MALE
I am 15 years old and would love to talk to someone my age. I have spent hours researching and reading about Cushing's after being diagnosed in January of this year. Click to read the full letter...
 
•  Code: 418 Date: Spring, 1997
At age 14 my roller-skating days came to a quick stop. I began to bruise without any reason and experienced joint pain. I was very irritable and depressed but kept to myself and didn't share my feelings with anyone. I was diagnosed with ADHD but it became increasingly more difficult to concentrate and to keep up my grades. Click to read the full letter...
 
•  Code: 436 Date: Spring, 1997
I was diagnosed at the age of 15 by a nurse practitioner who noticed my moon face and hump back. I had lost a lot of hair and wasn't eating hardly anything. I didn't want my Mom to find out I wasn't eating, but I kept gaining weight. For about a year I had trouble sleeping and skipped my period for six months. Click to read the full letter...
 
•  Code: 731 Date: Spring, 1997
I am a nurse, age 53, and have had Cushing's for about two years. Click to read the full letter...
 
•  Code: 716 Date: Spring, 1997
My symptoms were tiredness, weak legs and arms, heart palpitations, and trouble getting words out . Click to read the full letter...
 
•  Code: 723 Date: Spring, 1997 MALE
Prior to the onset of Cushing's, I led a very healthy and active life and was by all accounts sound in mind and body. Click to read the full letter...
 
•  Code: 869 Date: Spring, 1997
I had two unsuccessful transspehnoidal surgeries, radiation and finally had both of my adrenal glands removed in October. Click to read the full letter...
 
•  Code: 743 Date: Spring, 1997
At age 40, I was a picture of good health, never been hospitalized, taught aerobics three times a week, and took vitamins! Click to read the full letter...
 
•  Code: 244 December 1996
Hi! I am 31 years old, a Marine wife, and I was diagnosed with Cushing's syndrome in February, 1990. Click to read the full letter...
 
•  Summer 1996.
I was diagnosed with Cushing's in 1961 at age 14. At that time I had radiation to my pituitary, which was effective for 5 years. In 1965, I had a bilateral adrenalectomy, followed by a transsphenoidal removal of my pituitary gland in 1972. Overall, the results have been very good. Click to read the full letter...
 
•  Code: 869 Date: Summer, 1996
In January of 1995 I had transphenoidal surgery to remove a pituitary tumor. Click to read the full letter...
 
•  Code: 169 Date: Summer, 1996
I was first diagnosed with Cushing's in 1981, and had transsphenoidal surgery to remove the tumor. Click to read the full letter...
 
•  Code: 175 Date: Summer, 1996
I was diagnosed with a pituitary tumor which was supposedly removed in 1992. Click to read the full letter...
 
•  Code: 194 Date: Summer, 1996
I was diagnosed with Cushing's and had transsphenoidal surgery in 1991. Click to read the full letter...
 
•  Code: 126 Date: Summer, 1996
I had transphenoidal surgery in August of 1988 at UCSF. Click to read the full letter...
 
•  Code: 208 Date: Summer, 1996
I had transphenoidal surgery in 1988 to remove a 3mm tumor. Click to read the full letter...
 
•  Code: 1143 Date: Summer 1996
I was finally diagnosed with Cushing's due to a pituitary tumor at age 35 in 1991. Click to read the full letter...
 
•  Code: 271 Date: Summer, 1996
In 1970, I had an adrenal gland removed due to a tumor that was causing Cushing's. Before that, repeated visits to doctors resulted in a diagnosis of eating too much and ulcers. Click to read the full letter...
 
•  Code: 225 Date: Spring 1996 California
I am 3 years past successful pituitary surgery and almost a year off cortisone. Yet even with all of the continuing symptoms, lack of strength, and days of chronic hurt and depression, I'm considered "cured!!" Click to read the full letter...
 
•  Code: 733 Date: Spring 1996 Massachusetts
Many of you are aware that it has been 3 years since my surgery to remove one adrenal gland. I thought I would wake up and be myself in a few weeks. How wrong I was. I was a recluse in my home for almost a year. I had a puffy face, extended abdomen, and thinning hair. Click to read the full letter...
 
•  Code: 157 Date: Spring, 1996
In 1986, I had to have my pituitary gland completely removed. My MRI showed a "tumor", but during surgery, they found a vacuum pocket, so the whole gland needed to come out. Click to read the full letter...
 
•  Code: 209 Date: Spring, 1996
I had transsphenoidal surgery in 1994 to remove a 5mm pituitary tumor. Click to read the full letter...
 
•  Code: 93 Date: Spring, 1996
In May of 1991, I had a tumor removed by transspenoidal pituitary surgery, with excellent results. Click to read the full letter...
 
•  Code: 225 Date: Spring, 1996
I am 3 years past successful pituitary surgery and almost a year off cortisone. Yet even with all of the continuing symptoms, lack of strength, and days of chronic hurt and awfulness, I'm considered cured!! Click to read the full letter...
 
•  Code: 196 Date: Spring, 1996
I too am a Cushing's survivor, and this is my story. Looking back, I think my symptoms started shortly after I was married in 1986 at the age of 29. I had been skinny all my life and suddenly started gaining weight. Click to read the full letter...
 
•  Code: 733 Date: Spring, 1996
Many of you are aware that it has been 3 years since my surgery to remove one adrenal gland. I thought I would wake up and be myself in a few weeks. How wrong I was. Click to read the full letter...
 
•  Code: 145 Date: Spring, 1996
I had surgery to remove my right adrenal gland in November of 1992. At 65, I am 3 years old in my second life! My GP physician was aware of the tumor, but shrugged off my complaints as a neurotic female. Click to read the full letter...
 
•  Code: 114 Fall, 1995 Arizona
I had Cushing's Syndrome due to non-pituitary-dependent bilateral adrenal hyperplasia. Rather than immediately recommend a bilateral adrenalectomy, my doctor put me on ketoconazole, a drug that inhibits steroid synthesis. Click to read the full letter...
 

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