Cushing's Support & Research Foundation

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. And, curiously, no one in my family was diabetic. After several months, my general practitioner was not satisfied with my progress and wanted me to start injecting insulin. I was not convinced this was necessary, so I requested a second opinion, and was referred to Dr. Gunjan Tykodi, an endocrinologist at my HMO, Group Health Cooperative in Seattle.

I got to my appointment all fired up and ready to make my case against insulin. I was caught off guard when Dr. Tykodi asked me a bunch of peculiar questions about my skin, hair, weight, etc. As I left, she handed me a slip of paper and told me to go to the lab to collect supplies for a 24-hour urinalysis. I thought, "You want me to do WHAT?" (This was before I found out about cavernous sinus sampling...) When I asked why, she said she was testing for Cushing's Syndrome. "It's rare and you probably don't have it," she said, but she was suspicious enough to check. As soon as I got back to my office, I got on the internet and looked up Cushing's Syndrome. My jaw dropped - here was a list of everything that had been wrong with me for the past 10-15 years! Seven months later, after tests at Group Health and at the Pituitary Unit at Oregon Health & Science University (OHSU), I was given a firm diagnosis of pituitary Cushing's disease. Even then, the doctors were not certain exactly where the tumor was located.

Then an epic battle ensued with my HMO for a referral to OHSU's Pituitary Unit for the surgery. I finally had the surgery this past March. The tumor turned out to be on both sides - making me all the more glad I insisted on having the procedure done at OHSU by a skilled, experienced neurosurgeon, Dr. Johnny Delashaw. It was oddly gratifying to be told that the things that were wrong with me were not hypochondria or the result of a self-inflicted "lifestyle", but were caused by a real, live, removable tumor. Dr. David Cook at OHSU, one of the CSRF Board members, told me that during the recovery I would feel tired, achy and depressed. He was right. However, I have to bear in mind that this is actually what I want, since it is highly suggestive of a cure.

But it gives me the creeps to think how close I came to never knowing. Had I not balked at the prospect of injecting insulin, I would never have seen Dr. Tykodi. I am extremely lucky and grateful that she was conscientious enough to follow a hunch, and it is alarming to learn that 3%-5% of Type 2 diabetics actually have Cushing's and may not know it. So my particular interest is in reaching diabetics and the people who treat us.

In June, I staffed a table at the Diabetes Education Fair at Harborview Medical Center, the University of Washington's hospital. I got a chance to introduce Cushing's to a psychologist, a Somali medical interpreter, and vendors of products for diabetics, as well as diabetes patients. I chatted with the doctor who heads the hospital's diabetes program, who of course was familiar with Cushing's but was not aware that there was a support group with local members. Since I had fairly short notice, there wasn't time to get the CSRF booth to me, so I made do with leaflets and a few photographs. But once people got talking to me, there was no need for fancy graphics. As we all know, Cushing's Syndrome is fascinating, especially if it is happening to someone else!

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.

The year I turned 14, however, I knew something was drastically wrong. My weight went up and then I had gained 40+ lbs seemingly overnight - without changing my day to day habits. My menstrual periods were also irregular and I battled constant lethargy. My skin had also been problematic for a few years; severe breakouts were common. My skin bothered me the most, having had a flawless complexion thus far. The doctors told me it was part of puberty and that it would eventually go away. I was told to try various diets and drops from the naturopath. The Dermatologist tried antibiotics; my GP put me on the birth control pill, and then Accutane but nothing helped. I became fairly depressed.

In grade eleven I was tested for Polycystic Ovary Syndrome and Cushing's. I was told that everything seemed normal. After hearing the list of symptoms that I had, the physician diagnosed me with hypothyroidism and put me on Levothyroxine. My energy levels improved dramatically.

The beginning of the last semester of my senior year in high school, I became quite ill. I would do nothing but sleep for hours, and still feel exhausted. My brain felt foggy; my weight hadn't changed, and I was losing hair where I wanted it and growing it where I didn't. Weeks went by and my teachers wondered if I would graduate because I had missed so many classes. Finally with what little strength I had, I forced myself to get caught up and graduated with honors in June.

By the time I started College in the fall of 2002 I started feeling tired again. I had gone off of the birth control pill because it made me crazier than I already was (if that was possible). My weight had stayed the same, no matter what I tried I couldn't seem to lose it, and my skin was becoming progressively worse. I tried acupuncture, which worked for a time. My skin started healing and looking a lot better. But shortly before graduation in June 2003 it suddenly flared up again as badly as ever. Once again I went on the Accutane to keep it under control.

I spent the summer looking for work, and then working as a sales associate before returning to College in January of 2004. My poor health was becoming increasingly frustrating. I was an emotional roller coaster, crying at least once a day. None of the doctors I'd had over the years had been able to help me. They looked at me like I was crazy or making up the symptoms since they seemed to be unrelated and random. I would leave the doctor's office each time feeling belittled and stupid. I started to think that it was all in my head. I was beginning to second guess myself and think maybe I was crazy… Yet I knew that something was desperately wrong.

In the spring of 2004 I knew I needed to take drastic action. (It was around this time that I met my future husband). I was tired of being sick, and sick of being tired! I gave my GP a list of my symptoms, by now I had almost every textbook symptom there was, and demanded to see an endocrinologist. I had various blood tests, and a 24 hour urine collection was done. My blood sugar, cholesterol and cortisol came back elevated, or as my GP put it, "Slightly abnormal, but nothing to worry about". I was 20 years old. How was that not something to worry about? My physician and the endocrinologist put me on the birth control pill once again and told me to go exercise and lose the weight. That was it; I had been dismissed once again as being hormonal and obese. It's not like I hadn't tried to lose the weight, it just wouldn't come off! I was pretty upset at that point, but not ready to give up. I was stubborn; there was more to this than that.

A few weeks later my mother suggested that I see the doctor that she had been seeing at the midlife health clinic. Maybe she would have some clues as to what was wrong. So I went there and had more tests. My blood sugar was so high that I was now classified as insulin resistant, almost but not quite diabetic. I was treading on a fine line. The doctor put me on a different, high dosage birth control pill to regulate my hormones and prescribed Metformin to help with my blood sugar. She was undecided as to whether or not I had Polycystic Ovary Syndrome (PCOS), so she sent me to see a specialist in that field at the reproductive health clinic at Vancouver General Hospital.

After doing more paperwork and getting a referral for an ultrasound of my ovaries, the PCOS specialist did a physical examination, all the while asking me questions that I did my best to answer. She stopped at my stomach, then looked at me directly and asked me how long I'd had the purple stretch marks there. Not that long…maybe a few months. She looked at me and said, "I have a feeling that this is Cushing's".

Soon after, (January 9th/06), I was on my way to see a Cushing's specialist at St. Paul's Hospital. After answering numerous questions and undergoing an extensive physical examination, it was very clear. I had Cushing's. I needed brain surgery. I was stunned. Yet the prospect of not actually being crazy was fabulous! But brain surgery was the last thing I'd expected! Now, we had to determine where the tumor was; more tests. Once again my hormones and everything else was tested. Most were abnormal; some hovered precariously above abnormal. My urine cortisol, which should normally be between 28-276, was at 550.

So I was sent off to do a high and low-dose Dexamethasone Suppression Test. These would help distinguish between Cushing's syndrome caused by pituitary tumors and ectopic (non-pituitary) tumors. First I took an overnight 1 mg low dose of Dexamethasone, in which my hormones didn't suppress. Next I took an overnight 8 mg high dose of Dexamethasone; in this one they did. I almost certainly had a pituitary tumor.

Now I went for an MRI. The technicians had fun trying to find a suitable vein in my arm to inject the dye, but after bruising me several times they succeeded. Unfortunately, but not surprisingly, the MRI came back with everything "unremarkable". Now I got a referral for petrosal sinus sampling, (which is just about as fun as it sounds) - beware of any test that has "sampling" in it. The procedure was performed in the radiology department and only one doctor a St. Paul's Hospital does it. I understood that I'd be under mild sedation but he said no. So I asked him if it was going to feel like "snakes slithering up my insides". He said no, all I would feel would be like I had a bad headache. Boy was he wrong! I normally have a really high pain tolerance, but I felt every inch that catheter moved. When the catheter moved past my heart, I started to feel a fluttering sensation that made me panic. That eventually went away but as it moved up the vein in my neck, my arm suddenly involuntarily twitched. And then the crunching sounds I could hear and feel as it moved into position in my head. (I thought I was going to die!) Repeat blood samples were then drawn at 1, 2, 5, 10 and 15 minutes. Unfortunately my right catheter clotted at 5 minutes. Thankfully, I didn't have to redo the test, my hormone levels were through the roof.

A few months after meeting my surgeon, (one of Vancouver's best), and giving him the "go ahead", I had a surgery date of June 27th/06. My husband's birthday was on the 30th. I was scared half to death. After the list of complications that I'd been read, what if something went wrong?

Everything went as smoothly as it could have. My surgeon and endocrinologist were extremely pleased with the outcome. He had successfully removed the entire tumor. My cortisol dropped to barely registering; my cholesterol/blood sugar was now normal, and any residual lunacy must have been there to begin with!

As a Cushing's patient I realize how debilitating this disease is and how it has affected every aspect of my life. I hate what it has done to my mind and body. I don't like to go anywhere or do anything, due to the way I look and feel. My husband never said a word about my weight or how tired I was all the time, and he still doesn't. But some days are harder than others. In some cases the recovery is just as hard as having the illness. I have osteopenia; and have had diabetes insipidus since about eleven days after surgery. My cortisol is still extremely low - 41, as of May.15th /07 and it has been up-and-down. I've been to emergency a few more times than I'd like because of it. All of my joints ache and I feel like I'm ninety when I get up to stand! But it could have been so much worse. They could have told me the tumor was cancerous, that I had six months to live, to put my house in order. I'm lucky compared to so many of you that have suffered longer, and some that are still suffering. I'm thankful for the man that stuck with me through the worst of it, who is now my husband. To all of you still out there, don't give up. There is light at the end of the tunnel.

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. In fact, I had gotten quite in shape my first year of college, dropping 40 pounds and becoming frightened of gaining weight to the point of obsession with staying slim. I always had minor Cushing's symptoms such as hair loss, irregular cycles, etc. - but I had been told as a teenager I had polycystic ovaries.

I stayed very active and remained a size 6 or 8 until about 2 years ago, when I began to notice I was gaining weight and had a lack of energy for exercise. I had mistakenly left a job I loved and had new stress in my life, so I figured I just needed to eat healthier and cut back more on food. This made no difference, however, and I grew increasingly moodier and unhappy about the fact that I had gained some weight. As more months passed my condition grew worse. As I noticed my stomach becoming quickly distended, I thought it could be possible that I was pregnant. I thought that might explain the purple lines beginning to develop on my abdomen. When I learned I was not pregnant, I became convinced that I had a hormonal imbalance, and decided to visit a doctor to have a blood test. By August of this year, my whole face looked puffy and I felt unrecognizable to myself when I looked in the mirror. I was depressed, anxious, and very weak. I had one doctor tell me to calm down and that being 30 now, my metabolism had just slowed down. Another shared her weight gain story with me and told me the South Beach Diet would work. I thought that I just had to try harder. By now I was down to 1000 calories a day, no more than 500 mg of sodium, and walking 3 to 4 miles each night after trying to get through what was now an exhausting day. (I had to stop working out due to fatigue and muscle weakness.) Finally, after being told I did not need to see an Endocrinologist, I got a referral due to some abnormal findings in a basic hormone test. I did not give up because I know my body, and I knew something was not right.

By early October, the first Endocrinologist had determined that I had Cushing's - and I was a classic case having nearly every symptom. Believing that I could just take a simple pill to regulate my hormones, I was extremely upset when I began to research this disease. For a person who is overly concerned with their weight and staying in shape, Cushing's disease feels like a cruel and ironic sentence. I had gained nearly 40 pounds, and felt like I had all but lost my happy, energetic, fit self.

My first round of tests showed the problem stemmed from a Pituitary tumor, but one was not found in my MRI. I had a very strong feeling that the MRI was wrong, but went through with yet another round of tests. I even dreamt that they had missed it; I know now to always pay attention to your instincts. The next step was an MRI of my Adrenal Glands. A small "nodule" and thickened lining was found on my left adrenal gland, and I was ready immediately to get it out of my body. But my Endocrinologist at that time told me that he was very confused; my test results still pointed to a tumor elsewhere besides my Adrenals. He recommended I visit a colleague of his in Miami who had treated more cases of Cushing's. I was very lucky that he persisted in helping me, and he got me in with a brilliant Endocrinologist named Dr. Karl at Jackson Memorial Hospital in Miami. Dr. Karl was convinced that I had a pituitary tumor, and ordered a dynamic MRI. The day my husband and I were told that I did in fact have a small tumor on my pituitary gland, I cried tears of joy that we found the source of what, I felt, was stealing my identity. After MANY tests and re-tests, 3 MRI's, an X-Ray, 2 CAT Scans, 3 doctors, 40 new and un-welcome pounds, losing my hair, losing my ability to concentrate, and struggling just to get through routine physical activities, I had found my source.

I quickly learned that with Pituitary Cushing's, it is crucial to find the best Neurosurgeon you can. His or her experience in removing these tumors is directly tied to ensuring that they get it all out. My husband and I joked about it, but it's true - this is your brain. I was blessed to be referred to Dr. Jacques Morcos, also at Jackson Memorial. On January 5th of this year, I was given a surgery date of Jan. 24th. I underwent Transphenodial Surgery via the upper gum line to remove my tumor, and thanks to my excellent surgeon my Cortisol dropped to below a 1 shortly after my surgery. They found that I actually had 2 small tumors that had grown together, and I am so thankful that my doctors were as aggressive as they were in surgery. I did develop Diabetes Insipidus that seems now to possibly be permanent, but it is easily controlled and a small price to pay for hearing that you seem to have been cured of Cushing's disease.

I am currently about 2 months post-op, recovering slowly but surely. I have weaned down from 60mgs a day of Hydrocortisone to 20mgs. I am learning a great deal about my views of myself and my self worth; that my identity was not just what I looked like on the outside but a smile, being kind, and having a sense of humor. The scale seems determined not to budge, but I can see my waist again, and every day I see more of my old face in the mirror. And yes, you do cry the first time you are re-united with your self! Of course we loathe what Cushing's does to our bodies and minds, but we must try to keep it from breaking down our spirits. It's not easy. I remind myself that in most cases Cushing's can be cured, and there are many diseases out there that do not come with that gift. I do admit that I still have fears and insecurities, but I am very fortunate to have an amazing husband, parents, family and friends - and a job that supports me and gives me all the time and space I need. I was also helped tremendously by a member of this support group, Christine Greco, and if I can be a friend to anyone going through Cushing's then I would love to help.

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. My ankles and legs were swollen 75% of the time. I'd go home at night and my legs looked like sausages. My hair was getting so curly, usually you lose your hair, but not me. I also bruised easily, really easily. I was gaining weight, must stop eating! Symptoms were moving slowly. Five years went by, boy, this menopause is for the birds! I was 52 years old and still having my period. I have an identical twin sister (DNA proven identical) who was a teacher and enjoying her life and menopause (as much as you can!), why wasn't I?

I started seeing a doctor and was put on Prozac in 2001. It helped, but I still had all the swelling, moodiness, weight gain, and depression. I went back and forth to my Internist for a couple of years not feeling well. I knew something was wrong besides menopause. You know your own body. Try telling some doctors this! It got so bad, my sister insisted that I see my doctor, and she went with me. I couldn't even handle the office visit. I looked terrible, old, and felt it!! She had had it! I thank her for making me realize I needed help. Being identical twins, there is a certain bond. She was hurting deeply for me. We've cried together a lot of times through this time in my life. I thank God everyday for her!!
My Internist (no help to me in all this by the way), had her doubts since all regular tests on me came back normal. However, she had me see an Endocrinologist she knew and I have a feeling indicated to him about her doubts that anything was wrong with me, except for menopause. From day one with me he was disrespectful to me and treated me like a case number instead of an individual. A very intimidating person. He sat down with me after a few minutes and asked me why I was in his office. (Needless to say, that was the last time I went by myself to see him.) He agreed to give me some tests but said he did not expect to see me again.

One month later, I received a phone call from him. I forgot who he was, because I was getting nowhere with this. He said he was shocked that I had a very, very and dangerously high cortisol level. I had to get some more tests done and soon! I let him know that he made me feel like a hypochondriac in his office. No apologies from him, just stated that that's what he was there for, to check things out. No kidding!! MRI tests revealed a pituitary tumor and I also had a mangianoma (benign tumor on my brain lining). I had Gamma Rays about 6 months ago for the benign tumor.

Wow, I was devastated!! Found this out at work. I felt like I was losing control and went into even more of a depression. Thank God for sisters, my husband, family and friends from this point on. I couldn't mask my pain, I'm no good at that. I always wore my heart on my sleeve. Everyone knew something was wrong with me. They wouldn't ask me, but they would ask my husband and sister. Well, a year of tests (one test was $22,000.00 to locate the exact place of the tumor). Later, I had brain surgery on 9/1/04. I couldn't imagine brain surgery! All my life, I was always in the best of health! I was in the hospital for 10 days, Intensive Care for 6 days, it was suppose to be only 2 or 3 days. My levels were constantly changing, up and down.

I switched Endos after two post-surgery visits. He was so intimidating and with no sympathy or empathy at all. It is a rough recovery. I found out later by other doctors that I wasn't the first to note this and change doctors. My Endo today, Dr. Dominic Corrigan is my guardian angel and has helped me tremendously through my recovery! A sweetheart!

I'm on my way to a better life and to me now, "Life is great!" I'm a different person now. If I can end with two pieces of advice after all this, they are;

One -You know your own body, you're the only one that can tell there is something wrong with it. Have perseverance, you're not "spinning your wheels", it may seem like that sometimes, but stick to it.
Two - Make sure you have the best endocrinologist. You're going to be spending a lot of time with him. Best to all and please, I am here to help anyone else who may need it.

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. Looking back now at pictures from over 10 years ago, we can now see when Cushing's Disease started for me. In my early 20's, previously having always been so thin, I gained small increments of weight and never could get it off, plus my blood pressure seemed to be elevated at times. My face was more rounded and it took longer to heal even from a simple scratch, not to mention I bruised if someone looked at me wrong. All of my symptoms started off small and unnoticeable to doctors, and I, too, passed it off as effects of aging, even though I was so young and previously so healthy.

After eight years, and the birth of our first child, I started becoming increasingly ill. We had no idea I was really sick, or my husband and I would never purposefully tried to have had a child at that time. We know now that infertility is yet another Cushing's symptom, so the mere fact that our son is here, and healthy, we know is truly a miracle and a blessing. By this time, I was so sick, I was no longer able to be the kind of mother I promised God and my Mom I would be. If it was not for the miracle of our son, I may not have pushed doctors for answers. It was then that my fight for answers began.

Four Endocrinologists later, I finally found a caring soul, Dr. John Phipps, Jr., who was willing to say, "I don't know" when my symptoms were weird and fought for me to receive the medical treatment I needed. After 16 months from the first time I heard the term "Cushing's Disease," I was FINALLY going to UVA for my transsphenoidal pituitary surgery. For me it was a totally new chance at life.

I understood the risks, the chance for reoccurrence, and lengthy recovery, but there was no other choice, except to get worse. Thankfully, June 2, 2005, Dr. Edward Laws gave me a new chance at living. Now, do not mistake my gratefulness to my recovery as being an easy road. That is far from the truth, but with the help of my Dr. Phipps and his nurse, Melissa, and Dr. Mary Lee Vance, I made it through continuous challenges until now ~ complete remission!! No kidney stones, no braking my ribs sneezing or coughing, no naps, no sleepless nights, no racing heart, no round face or buffalo hump or rounding of my rib cage, no high blood pressure, no depression, no anxiety from knowing something was wrong and no one would believe me, no weakness in my legs, no constant back pain, no red face or scratchy voice,. . . just me! The REAL me! Now I can be the mother, wife, daughter, volunteer, and friend God wants me to be.

Although this may have not been the road I would have purposefully chosen, I have been given so many blessings through this extremely long, emotional, and life-altering journey. I have learned to believe in myself. Plus, I have met so many others going through this "rare" disease. Cushing's has personally showed me the beauty that does exist in every day life, and the power of prayer. For me, I liken it to a "near-miss." Yes, my experience was very traumatic, yet, it could have been so much worse. Having Cushing's Disease, I had the chance to have a surgery that could totally eradicate all my problems. Rarely can such a devastating disease be altered so drastically with one surgery. I knew the risk, and I know it can return. The difference now is that I would KNOW what was wrong and the capable, caring doctors to see. So, for all the devastation it has brought to my family and me, I am determined to see the bright side of the journey. I am strong and I know anyone else who experiences this will find that they, too, can make it through with shining colors and a smile to share.

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. Cushing's was mentioned in passing about 15 years ago, but there was no follow-up. During that period I would gain some weight, maintain it for months, and then gain some more. I began to feel fatigue and general malaise.

Then about three years ago I began to add weight at an alarming rate. I went to a dietician and really followed a rigid diet. The weight gain continued. My primary physician, as usual, advised eating less and exercising more. He never really believed that I was maintaining a strict diet. After all, I was getting older and it is to be expected to find it difficult to maintain weight. I had wild mood swings. My hair began to fall out, and I developed a skin rash and blemishes all over my body. They itched like mad. My face became puffy. No one yet noticed the hump on my back. I was exhausted, and having trouble walking. I labored to walk up stairs, despite the fact that until recently I had worked out 30 minutes, three or four days a week, on an elliptical and another 30 minutes on a treadmill. I began nightly episodes of vomiting, even when I didn't eat that evening. That likely resulted from Barrett's Esophagus, which is spillage of gastric juices into areas where they don't belong. Excess pounds on the upper body are probably not helping matters. Undetected was a return to anemia, which had been borderline condition for a number of years. I'm currently undergoing tests to find out where I'm losing blood, since I depleted my body's entire store of iron. I'm on iron therapy until the situation is resolved.

Along the way, my primary care physician advised that I see a psychiatrist. Like a dutiful daughter, that's precisely what I did, even though I felt frustrated, not depressed. The sessions didn't help. Friends advised gastric bypass surgery, standard and esoteric diets, natural herbs and who knows what all. Finally, I went to a physician who specializes in weight management. After a month of diet supervision, she announced that she has a sister who has Cushing's and there was every indication that so did I.

She sent me to an endocrinologist, who tried several drugs to no avail. Then he, too, mentioned Cushing's, and saw to it that I had an early appointment at the Lahey Clinic in Burlington, MA. For the next six months I underwent a battery of tests, and on May 11, 2006 I had 50% of the left side of the pituitary and 25% of right side removed. There was not tumor, but there were considerable amounts of abnormal material to warrant their removal.

The operation went well, and I was home five days later. I was put on high doses of cortisol, which, over time, was reduced somewhat. I'm currently taking 15 mg in the morning and 10 mg at night. I've lost 20 pounds, but few recently. I still watch what I eat, and often do not feel hungry. The rash, vomiting and mood swings have recently returned, but I have more energy than I've had for years. I've been going shopping, much to the horror of my husband, who, by the way, is my hero for the way he has always taken care of me. Overall, I'm feeling better than I have for years.

I also must acknowledge the extraordinary outpouring of help from our church and local community. For the first six weeks following surgery, there was not a day that passed without somebody dropping by to chat, prepare meals, or just be there for me. I'm still in awe of their love and concern.

While doling out kudos, I'd be remiss if I didn't mention that the staff at the Lahey Clinic is wonderful. My endocrinologist, the lead player on my medical team, returns calls within a day, even at night. I feel very well informed by all members of the team, and without exception, each takes time to keep me well informed of my medical situation.

My goal, first and foremost, is to fix my body. I'm making progress, but there's along way to go before I feel normal again. But I also want to educate the local medical community about Cushing's Disease so that others do not have to go through the misery I did before a proper diagnosis is made. Along the way, I'd like to be able to share my experiences with other Cushies, and perhaps lend them a hand.

Cushing's Disease is a strange and debilitating affliction. It changes our outside appearance and raises havoc with our insides. But in my case, there is a positive side in that the love and understanding and care I received from my husband of 48 years, and my friends, was simply wonderful. I never knew anyone cared that much about my well-being.

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. It took numerous years and many hard and daunting times to get through, but I am slowly improving and glad to be alive!

I know these photos are somewhat dark....I really still don't like my photo taken! I felt that there is a noticeable change in my look though and I wanted the readers to not give up on their journey for their health answers. It's so important to keep asking until your gut tells you, you have the
right answer!

CSRF Members' Letters - Pituitary Tumor