My name is Nicole, currently 19 years old. I’m a student at The Juilliard School in New York studying Dance. I don’t know why it’s taken me so long to reach out to this community, I have certainly been stalking and researching this disease for months now… I guess I’m ready now to share my own story, especially since I feel more hopeless and alone than ever before.
July 2015— It all started about two years ago. I was only 17 and very much in peak-performance shape. I looked and felt like an athlete training to be a professional ballet dancer. I prided myself for my toned body, which is very very important in the dance world. I think I weighed about 103 lbs at a height of 5’4″.
But that summer I noticed it became increasingly difficult for me to fall sleep at night. I would sometimes stay up until 3 or 4 AM when I knew I had to be up at 6 or 7 AM for a full 8 hour day of dancing. I started to stress eat a lot as well and by the end of summer I blamed myself when I had gained back all the weight I had worked to lose the previous year, plus some. I think I was about 114 lbs by the end of August.
Around this time I also sought out a Naturopathic doctor for the first time at the suggestion from a friend to help me treat an underlying anxiety disorder. I was given supplements, and for a while my health improved considerably. I felt more calm and sane than ever before in my entire life. But that didn’t last long. I continued to steadily gain weight during my senior year, always going on extreme fad diets to try to maintain. Sometimes it worked, sometimes not.
March 2016– By the time Spring rolled around I was really starting to notice a difference in my appearance. My face had begun to swell and I began to wonder if maybe my weight was out of my control. Maybe there was an explanation for my struggles and failed efforts. So I began researching hypothyroidism, since it runs in my family, and I went to my primary care doctor to ask for the first tests. Little did I know this would be the beginning of a long and defeating marathon.
My doctor initially treated me like I was crazy. Saying that if anything I was still underweight and that I should be concerned about my primary amenorrhea (I had still never had a period). But he did the tests and the results came back suggesting hyperthyroidism. I was confused because all my symptoms suggested otherwise. Nevertheless I was shipped off to an endocrinologist who was of little help to me throughout the summer while I continued to dance and went away for a summer intensive in Chicago.
June 2016– While in Chicago my weight just ballooned even more. I admit I did gain muscle but that was thanks to the rigorous amount of training I was doing at the time. I definitely didn’t look right though. My muscles were buried under a layer of fat, no tone was visible, and my puffy face made me look like a stranger to friends when I returned home. I tried various thyroid replacement hormones at low doses, desperate to get my body back.
August 2016– I had returned to my Naturopath in the hopes she could finally diagnose me with hypothyroidism. She did, and in fact she discovered I have Hashimoto’s, which explained the fluctuating levels. She put me on NaturThroid before saying goodbye as I departed for my Freshman year of college at The Juilliard School.
September 2016– My health improved a short while. I lost some of the puffiness on my face, dropped some weight, but settled around 117 lbs. This only lasted about a month.
October 2016– By October things turned for the worst. I felt only weaker the more I pushed myself each day. My muscles weren’t allowing me to dance at the same capacity as I once had, I was embarrassed by my short comings, especially being surrounded by so many talented individuals. My weight started rapidly increasing now. I regained the puffiness around my face and neck, and my weight went from 117 to 126 in a matter of a month.
I was referred to a Reproductive Endocrinologist who thought I had PCOS and put me on metformin. To her credit, I did fit the profile. I complained of rapid weight gain, I had slightly elevated testosterone, and I had a few small cysts on my ovaries. But there were also things that didn’t fit the bill. Like my apparent lack of Estrogen, which is usually elevated in PCOS. And that I had never had a period before. I also showed no signs of pre-diabetes.
January 2017– After winter break I really could no longer put a stop to my weight gain. No matter what, it just went up. I tried cutting carbs, sugar, and calories to below 1,200 a day, all while dancing 6-8 hours a day and my weight only went up.
Metformin didn’t work. Repro. Endo. put me on estrogen and progesterone for a while, but I stopped seeing her eventually because she didn’t listen to me and ignored my qualms about weight.
I also grew very very depressed around this time and began to wonder if this was the end of my dance career. I was starting to look like a joke in classes. I mourned my body. I didn’t recognize myself in the mirror.
May 2017– After months of research I began to wonder if I might have Cushing’s disease. I had the stretch marks on my butt and thighs, the filling in of fat around the collar bone, neck and jawline. Rapid weight gain, fatigue, depression, angry outbursts, and flushed cheeks. I do not have central obesity, but my weight has always tended to go to my butt and thighs. Though for the first time ever I begin to form a muffin top and fat on my arms. Cellulite appeared everywhere when I stretched my skin even a little bit, very odd to see cellulite on your knees! I had swollen legs too.
I now weighed 135+ lbs.
June 2017– When I got home for summer break my mom and I saw Neuro Endocrinologist Dr. Kevin Yuen at Swedish Pituitary Center. He listens to me, the first doctor to really listen! And he began testing.
Four 24/hr urine, 4 midnight salivary cortisol, 1 dexamethasone suppression test, 1 dex-CRH test, 1 Pituitary MRI.
July 2017– (current weight = 147 lbs) After a visit with Dr. Yuen and weeks of speculation he concludes there is only a 50/50 chance I have Cushing’s. Test results are as follows:
-2 mildly elevated 24/hr urines
-2 normal 24/hr urines
-3 elevated midnight salivary cortisols
-1 completely normal midnight salivary cortisol
-normal response (suppressed) after low dose dexamethasone
-normal response to Dex-CRH
-normal MRI
I’m disappointed to say the least that there is not more resounding evidence that I have this disease. I feel so certain that I have it. My body and mind are changing so rapidly I just want to cry every day. It’s so bad I don’t think I can return to school in the fall. I may have to take a year off of dance if I don’t get my body back in shape by the fall. And a year off of training could ruin me!!
Dr. Yuen suggests doing a hospital stay at Swedish to conduct further testing, particularly midnight serum cortisol, to see if more positive results might outweigh the normal results. I guess he wonders if I did something to mess up the cortisol response in some of the tests, though I don’t see how I could have! I’ve barely done anything this summer, definitely nothing exciting. I’m home-bound because I feel so depressed.
I don’t go to ballet classes anymore because it’s too painful to see myself in the mirror and try to dance in a fat suit. None of my clothes fit anymore. I just don’t feel like a young attractive woman like I used to. Not to mention my energy is out the window.
I haven’t quite given up yet! I eat a very limited paleo diet that omits grains and sugar (except those naturally occurring). I try to swim at least every other day and keep up with my pilates and stretching. It’s not the same though.
I might give up if after the hospital stay, the tests come back normal and I’m told I do not have Cushing’s, when I don’t see how it could be anything else!
I just want my life back.
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Aug 08, 2017 @ 03:59:06
My story is so similar to yours (though I’m not a dancer). All of the same symptoms but I haven’t convinced a doctor to even give me an MRI. I’m on my 3rd endocrinologist and he will be testing me for Hashimotos (I have been suspecting Cushings for over a year. Some info I learned is that there’s something called “cyclic” cushings, so maybe that explains your fluctuating tests? It can come and go at different times. Apparently Cushings can sometimes take years before someone is diagnosed, and thought it so depressing because I can’t get diagnosed either. I have the hallmark buffalo hump, large stomach from weight gain (it looks like I’m pregnant), and irregular periods. I also have Celiac disease, so it may be worthwhile to see if you have any other autoimmune diseases. I’m still piecing together pieces of my health puzzle as this has gone on for 2 years for me. I hope you find answers and please share if you do. It seems like it’s coming down to finding the “right” doctor who is willing to spend time and perform tests repeatedly instead of chalking it up to “you’re just depressed, take an antidepressant.”
Sep 12, 2017 @ 20:01:50
Your story sounds very similar to mine (although I am a runner). I saw Dr. Yuen and worked with his group for a few years. Went through all of the Cushing’s tests, and some were concerning in the beginning and over time they went down to normal. My problem was years of restrictive dieting and excessive exercising. I have taken time off from training and focused on eating enough to support my body. I am feeling much better, have more energy, and my body seems to be beginning to recover. I can’t get the weight off yet, but I’m optimistic that it will soon follow. I am regrowing hair and eyebrows that I had lost and didn’t even realize it until they it was growing back.
Given your history of strict dieting and loads of activity, I would look at that before you endure further testing for a very rare disease.
Sep 18, 2017 @ 17:30:01
My name is Paige and am 51. I don’t want to discourage you but I am dealing with the same issues! This has been going on about 8+ years for me. I was thin muscular and now 206 lbs I am just starting thyroid Med’s. Labs all over the place. Have you been exposed to mold? My labs showed toxicity and a Natro has me on binders but almost all my docs think I’m crazy. I am unrecognizable to old friends and my kids were shocked the last time they saw me. I feel for you and all I can say is to be persistent and keep trying new docs. Keep all your records.
Sep 28, 2017 @ 21:27:43
You can have Cushing’s with an ectopic tumor which can be why your suppression test was normal- that one tests the pituitary function/activity of the tumor. You can have a tumor on your pituitary but it could be inactive and there could be another one somewhere else in your body that is causing the response to the adrenal glands (lungs or stomach). I struggled for years to really get to the bottom of it all and also have been diagnosed with PCOS but I also fit that profile and often times this runs along side Cushing’s. But in the last 2 years the weight gain, moon face, acne, hair loss, irregular cycles, etc have gotten worse and worse and the fatigue became so debilitating this past spring that I couldn’t work anymore. The last 6 months have been most awful. The depression and irritability have gotten really bad along with the list of symptoms growing. I am finally having surgery next month after 6 months of testing and doctor visits and evaluations. I am being treated at the university of va pituitary center by dr. Mary Lee Vance who has led the research in this and many other pituitary disorders. It is also possible that you could also have a different pituitary disease. I would highly recommed asking you curent doctor for a referral to uva. Dr Vance and their team is wonderful.
https://med.virginia.edu/neurosurgery/services/pituitary-tumor-program/
You are not alone. Don’t give up!
Dec 02, 2017 @ 22:47:48
Hashimoto can have hypo and hyper symptoms. Go do celiac test, lactose intolerance test, milk and grain allergy tests.
No matter what answers are, after tests go on gluten and dairy free diet and have enzyme suppliments, amino acids, quality multimineral and vitamins.
If you really want to heal and have your life back, start vegan raw food diet. Get Victoria Boutenko green smoothie book or her website to get started. Also book raw food made easy, is great book. It is beautiful life style, yammy foods and heals your body.
It will change your life.
Jan 09, 2019 @ 13:26:29
Your case is every similar to mine. I wasn’t a dancer but I did play multiple sports in high school and played college basketball. I saw doctor Yuen at Swedish as well and many more doctors as well. I have never got my case or my symptoms solved. Over 4 years of doctors and testing. They found I had a pituitary tumor and mildly high cortisol in my 24 hour Urine test with high levels of testostine. Along with a extermly high test for exposure when they injected the steroids in my at a clinic and took samples of my blood to see my reaction. Let me tell you that test was horrible most people will get injected and there body will adjust to it and level out mine didn’t. I can’t remember the name of this test. Getting that high test that’s when finally I got my MRI and the tumor was found. But nothing has happened since no dignosis no help in any form. I gave up in looking for help with all the specialist bills I could no longer afford to keep looking. One of my last stops was with doctor yuen and I did the over nights Cushing camp after finding the tumor. It was horrible. It might have just happened to my by coincidence but all my blood samples went bad. They were supposed to put them on ice for 3 day and never did. I spent so much money on this testing and was furious with the office said that I would have to pay for all of the testing and I could have a free trial again. But it never happened they never did anything after they messed up. So I went to university of Washington to hopefully get help. I sent in my huge file of testing and they sent me straight to a surgeon. I though finally this is the end and when I met with him he told me I just had pcos. Which a very long story short I have seen many ob’s and gyno’s since I was 12 and have had my uterus and ovaries ultrasound scanned and nothing was found. All my test result never said pcos along with all the other doctors ruling it out. If you have any luck with doctors or new testing let me know and I would do the same since it sounds like we are in the same area. I think I have cushings. Also, my thyroid is what got me in to see all these endro’s from the beginning of the cushings testing but never have been diagnosed with anything or received any help besides being crazy and given many different kinds of antidepressants and anxiety medication. (Which all makes me feel worse) Good luck to you and hope you get some answers.
Mar 03, 2019 @ 04:28:30
I saw your case on searching against dexamethasone yours and others sound so similar to the person who I care for who has been so affected by what we see as steroid induced cushings, and many other associated problems, while neither ENT nor endocrinology not her MDs are on top of the situation at all yet we continue to see a diverse range of specialists all treating discrete issues, prescribing steroids, anti depressants, and things to deal with discrete symptoms while not going to the root cause, and not surprising no progress is being made. I have the additional difficulty of dealing with the irritability and rejection of help the situation is so bad. I am quite desperate and do not know where to turn, but I have just made a list of the people and organisations to approach to try and find the right help. You just have to keep on searching til you get to the bottom of it and get the right help which I hope you do.