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.
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Cushing's syndrome is all about the stress hormone cortisol. When your body makes too much of it, the excess hormone can throw off your body's other systems.April 20, 2018 - 2:33am
Hi Kim,April 14, 2011 - 6:14am
I am 38 and was diagnosed with Cushings Syndrome back in Aug '10. Take some of the advice above -- schedule an appt with an endo, write down a 3 - 5 year history of your medical issues and weight each year, bring pictures of yourself from the same time of year for the last 3 years (i.e. June 07, June 08, June 09) to show the changes. I did all of this and my endo tested me right away. If you don't like your dr. go to the next one until you find someone you are comfortable with and that will listen. I had an adrenalectomy in late October '10 and I feel fantastic now. Keep pushing, you'll find an answer!
Hi Kim,April 18, 2011 - 4:17pm
Thank-you for replying it means alot to me. I was diagnosed with Fibromyalgia in 2006 after my son was born. My body started falling apart it took a year for me to finally start working again. I struggled with this for along time and in Oct.20, 2010 I was in an accident where I hit my head and injured both neck & head. Was seen by a Neurologist and was given occipital nerve blocks cervical epideral injections. Last Injection was in late Jan., in late Feb. the symptoms started.I know that the injections cause these symptoms which confuses me. Does the steriods stay in your body that long? Again, Im lost!!!Is it Syndrome, disease, or peusdo cushing?Every bit of info. helps me better understand. It just seems like its takes forever to get into Drz. and the test they did (24hr.) was the most accurate test to determine Cushings, is that true?Did your shoulders and neck hurt, headaches, sharp-pains in my right side of neck to ear?
As you can see you are not alone with this disease. I strongly encourage you to check out Mary O's site. There you will find tons of information and support. I was diagnosed with cushing's in 2001. I had symptoms for about 10yrs before I finally received a diagnosis. I'm an RN and had no idea what was going on in my body. Having cushing's gave me an in depth understanding of our endocrine system. I had massive adrenal hyperplasia and had both my adrenal glands removed at the National Institute of Health in 2002. The first few yrs following were a struggle and I totally understand your depression, but I am now leading an active life and enjoying every minute of it. Wishing you all the best!!!April 12, 2011 - 7:42am
My 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 - 2:11am
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 - 10:28pm
Hi - I've known I've had Cushings for several months. Many serious health issues going on as a result. The MRI last week showed Pituitary thickening and a tumor. I'm hoping you can share the name of your Endo with me. The link in the following post no longer works. Thank you kindly :)November 12, 2013 - 8:02pm
Unfortunately, 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 - 8:17pm
Mary,June 6, 2011 - 8:30pm
I 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.
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
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 - 7:25am