My name is Kim an I am 32yrs. old, I am currently being tested for Cushings Syndrome. I am experiencing all symptoms from weight-gain, buffalo hump, thinning limbs,moon-face, you name it. I am very depressed an spend most of my time at home due to my physical features which kills my self-esteem. Reading similar story's of what I'm going through has help me to better understand what to expect with this syndrome. I many questions, if anyone could help me, I would appreciate the support.
Kim S.
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Hi Kim,
April 7, 2011 - 4:23pmI can truly understand how you are feeling right now. Though I was not diagnosed with Cushing's syndrome, I was diagnosed with a neuroblastoma that mimicked many of the same symptoms. I appreciated your depression and hesitation to go out in public. An altered self-esteem and lack of control over the changes in your body like weight gain and moon face are something that others try to understand, but really cannot.
Here is the link to the Cushing's Disease page:
http://www.empowher.com/condition/cushings-disease/definition
You may find the information and article helpful. There is a link on that page which gives you the opportunity to create a group. Please take a minute to check it out and return if we can be of any further help.
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Hi, Kim - I had Cushing's and pituitary surgery in 1987. There are lots of other people with Cushing's on the message boards at http://cushings.invisionzone.com/index.php
If you're interested in my diagnosis/surgery, it's online at http://www.cushings-help.com/maryos_story.htm
Best of luck to you! If I can help in any way, just let me know!
MaryO
April 8, 2011 - 10:53amBTW, today, April 8, is Cushing's Awareness Day. Please wear your Cushing's ribbons, t-shirts, awareness bracelets or Cushing's colors (blue and yellow) and hand out Robin's wonderful Awareness Cards to get a discussion going with anyone who will listen.
And don't just raise awareness on April 8. Any day is a good day to raise awareness.
April 8, 2011 - 10:56amToday I went to PCP and my results from urine was 17, she said it was too low. She doesn't feel like there is anything wrong with me. But, things seem to be getting worst swelling on my right side which really hurts. Headaches, limbs are thinning fast with ugly purple marks.What do I do now??Please help???
April 11, 2011 - 6:32pmUnfortunately, most PCPs can't diagnose Cushing's - you need lots of specialized tests from an endocrinologist, preferably one who has diagnosed Cushing's patients before.
In my experience, it can take quite a long time of testing and retesting to get a diagnosis.
I know you don't want to hear that but it's very true. If you truly believe that you have this, you have to keep pushing and advocating for yourself.
Many people find that photo timelines help the doctor to see how you've gained weight over the years.
Best of luck to you!
April 11, 2011 - 8:17pmMary,
June 6, 2011 - 8:30pmI went to Endo. today an was told that my urine tests we're normal. He said there was no reason for me to be hurting an he cant do anything else. Oh, he also said I just need to excercise an over time everything should get better. I walk in his office in so much pain he didnt want to hear it. I have eveything except Diabetes and I have other symptoms groin pain,period for 3weeks,lumps on side of neck,dry mouth, all my joints are hurting so bad I can do so much.I live in Phoenix,az does anyone know of a good doctor here. I have crappy insurance maybe thats why dr. didnt want to persue. Any info. will help me an my family so much.
Thank-you,
Ksanchez
Unfortunately, lots of people have "normal" test results. Often, that means that they have a cyclical form of Cushing's and if they test again (when you have high cortisol) the numbers will change for you.
This means that more than one UFC has to be done, as well as other bloodwork and salivary testing.
There are 3 doctors in Phoenix who have helped other Cushing's patients and one may be able to help you. They're at
http://cushie.info/index.php?option=com_sobi2&catid=22&Itemid=21
So many of us have trouble with local doctors and we find that we have to travel to find one to work with. The best doctors seem to be in Seattle, WA and in California although some others are popping up on the East Coast.
Best of luck to you. I know that this is a very hard journey!
June 7, 2011 - 7:25amMary,
June 8, 2011 - 5:19pmThat you so, much for helping me with the info. I called an got an appt. right away hope they can figure out whats going on. You are my Angel,,,,,,I have severe joint pain in my ankles and wrist is that related to Cushings?
Thank-You,
K.sanchez
Everyone is quite right - it takes a lot of testing to come to the final conclusion that you do have Cushings. Keep pushing and testing and you will get there in the end. Non Cushings friends and family found it quite bizarre that I celebrated when I found out I actually had a tumor on my pit gland!. I felt there was light at the end of the tunnel and I could focus on the surgery ahead. We are unique but we are not alone.
April 11, 2011 - 10:28pmMy endocrinologist told me that Cushing's is one of the hardest endrocrine diseases to diagnosis. He told me it is alot of testing but there is a light at the end of the tunnel. I felt like a pin cushion. The 24 hour urine collection jar was my new best friend and I swore I glowed in the dark after all of the MRI's, PET Scans ETC. Hang in there! Be an advocate for your self. Find another doctor. There are alot of us that have been through this so please feel free to lean on us. But keep fighting, you are worth it. It does get better. I am not sure where you live but maybe someone can recommend there dr in you area. Good Luck!
April 12, 2011 - 2:11amHeather
Cushing's 2009