Home

Nicole, Undiagnosed Bio

4 Comments

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.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Annette S (Annette), Undiagnosed Bio

2 Comments

undiagnosed3

 

43 yr old female- trying to get diagnosed
I have about 41 out of 42 Cushing Symptoms
Have been diagnosed as insulin resistant and as of recent was told I am not insulin resistant
Have had one Dex Suppression test – negative and 2 – 24 hour urine negative
I am at a complete loss- Can I have Cushing’s and these test come back negative?

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Melissa, Pituitary Bio

Leave a comment

golden-oldie

 

From August 12, 2007

I am 32 yrs old. I started having sxs after my 3rd daughter. I started to have face numbness and weight gain after my hysterectomy in 2004. I have had depression since the birth of my daughter in 2003. I had face swelling on and off.

I had started a diet (Chicken, fish, turkey burger, veggies and rice) February 2007. High in protein and low in sodium. I had gained about 30-40 pds since my daughter but then again it was 3rd child. I had lost 24 pds, but was not loosing in my face, upper body and still looked 4 months pregnant after loosing weight. Within weeks I had hypertension, hair all over my face, swelling redness of face, headaches, etc. Ended up in the ER still with no diagnosis and everything related to stress.

I work at a OB/GYN as a medical assistant so I knew something was wrong. One of the doctors I work with kept saying I had Cushing’s Disease but I kept putting her off. I had read about it in school but wasn’t hearing it. I finally did a 24hr urine and to my surprise it was over 1100.

My life had changed since I was dx with this. I did the 5 day suppression twice, (lab messed up the first one). Did 2 MRI’s.

Finally in July 2007 they finally found it!!! I had surgery done July 18th. Still currently on medical leave. Surgery went so well no bruising on my “moon face”. Levels did not drop as expected next morning but ok. 2 days postoperative they did drop in 1/2. Yah!! I’m cured. Have felt pretty good, just tired. Two weeks did 24hr urine, blood work cortisol, and ACTH. Still producing all three. Repeated 1 week later less dexamethasone even. Guess what still producing all 3 but now increasing.

Doctor’s suggest I go off of the steroids now (no point of being on them) and we are going to do more testing. Possible ectopic has been suggested. The surgeon does not want to do radiation or removal due to my age.

I am ready to get on with my life now, and I am confused. I would love to hear from someone with any advise or just to have someone talk to who is going through this.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Emily, Undiagnosed Bio

2 Comments

undiagnosed2

 

Hello, my name is Emily. A few months ago I was “diagnosed” with Cushings Syndrome as I had very high levels of cortisol.

I was sent to a ENDO Dr. & most tests came back saying I have it. But two tests, like the salvia midnight test said the high cortisol dropped a little bit at night which indicates I don’t have it, and the surpression pill test also dropped my cortisol level. But the 24hr urine test and regular blood tests at 8am (done severl times, on different days), says I have extremely high levels of cortisol, which “stumped” the Dr. In the same sentence he told me I have Cushings (on paper), but by looking at me, I don’t have it at all and would be the first case he’s ever seen that had Syndrome but don’t have the physical signs (eg., I don’t have purple stretch marks but have some white stretch marks on legs, I’m average slim build but just recently have gained some* belly midsection weight that I can’t loose, I have only some* facial chin hairs but not a lot yet).

I do have most other symptoms of Cushings including changes in menstrual cycles, night sweats, fatigue, anxiety for no reason and never had problem with that before, have fractured two ribs easily in the last year, weak muscles at times etc. In my initial blood work, it also showed I had no estrogen which the ENDO Dr. didn’t investigate.

My last phone call with ENDO; he basically said it appears I have it on paper, but not by looking at me and therefore his conclusion is I don’t have it, and nothing can be done at this time.

Have any of you on here experienced anything like this? I’m getting a second opinion at the Stanford Hosptial in the Bay Area of California, and driving a good 4 hours to get there. Hoping I get better results.

Also…I’m not a heavy drinker, don’t smoke, never had a problem in past of depression which can also lead to Cushings. I’m 33 years old and although usually healthy, I’ve been experiencing these symptoms for maybe 2 years?? Not as persistent until recently though. What got me to go see a general practioner to begin with was no menstrual cycle at all, or very irregular, nausea at times, night sweats, loosing some hair, breaking out on face, fatigue.

Any help or anyone that went through something similar & can help in knowing what to do, will be greatly appreciated.

Thank you!

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Elara, Undiagnosed Bio

Leave a comment

undiagnosed3

 

I had a low level dexamethasone test done 3 months ago. Not bad. Only 67 mm/ol.

But this time, 3 months later, my blood test showed 367 mm/ol.

I wonder if I have pseudo Cushings due to my daily high alcohol intake or do I have the real thing.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Ryan C (Awesomenatious), Pseudo Cushing’s and Chronic Fatigue

5 Comments

undiagnosed2

 

I am trying to find help and an answer. I have had urine tests and a suppression test using Dexamethasone. This text was done twice because the first time I still had high cortisol. The second time a larger dose was given and suppression occurred.
Interestingly for a couple of days after the test I felt great. But then I crashed and felt terrible and then levelled out again at my usual fat, sweaty self.

No investigation to my pituitary, no further tests other than a picture of my adrenal gland (which was taken because I was being treated for diverticulitis and issues with my digestive tract.

So here I am. No doctor is willing to take on my case, I still have hyper cortisol levels. But I’ve been told it’s because I’m fat. And

I’ve also been told that high cortisol causes weight issues. So currently I feel like I’m being told I’m fat because I’m fat. How is that helpful?
I have been to the dietician like I was advised. Weight loss occurred but was super super slow.

I have been to CBT cognitive behavioural therapy because that’s apparently something you HAVE to do when diagnosed with Chronic Fatigue.

So here I sit with a Pseudo Cushings and chronic fatigue diagnosis and no help and STILL high cortisol levels.

I did visit an Osteopath, who said he though I had Adrenal Fatigue. And adrenal supplement under his supervision for a few months which helped slightly but I had to stop because it’s dangerous to use for prolonged periods.

But hey, isn’t Having excessive cortisol for a prolonged time even more dangerous ?

I just don’t understand why I have to become an expert in cushings and hypercotisol before any GP doctor will listen to me and help me.

I felt frustrated and let down.

Ryan

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Julie B, Adrenal Bio

Leave a comment

adrenal-medulla
Hello, 47 year old female with two adrenal adenomas. Gaining weight like crazy, feeling tired, can not sleep, pitting edema in legs, bruise easily, pain in side, back, joints….and many other things.
Frustrated….had two 1mg dex suppression test that both came back high levels of cortisol. Had two 24 hour urinary cortisol that came back fine. Now on my 3rd doctor as I keep getting refered out.

Having a 2 mg dex suppression test Monday along with saliva test which I have now read that with adrenal adenoma saliva test may come back negative.

Everything in my life is changing and I am tired of feeling bad along with how long the process is to get a diagnosis.

Any support and information would be greatly appreciated.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Older Entries

%d bloggers like this: