I am a 34 year old woman, not yet diagnosed, but suspect Cushing’s.
When I came across this website, it was like other people writing my life story.
I was diagnosed with hypothyroidism 15 years ago, with depression about the same time. Once on thyroxine, I improved.
About 8 years ago, I started gaining weight, especially around the stomach. Then as time passed, other symptoms appeared. The depression was coming back worse than ever, despite increased doses of anti-depressants. I suffered with extreme fatigue, joint and muscle pain, shortness of breath and rapid heart rate.
I had tests for Rheumatoid Arthritis, Lupus, Fibromyalgia, Latex sensitivity, ECG and echocardigram, stress echocardiogram, chest X-ray, lots of blood tests. The only thing abnormal was low iron. I tried iron supplements, which do not agree with my stomach, so had to abandon.
Since then, I have pretty much struggled with further symptoms, the latest being the red stretch marks, the buffalo hump, fat on my shoulders (makes it hard to carry shoulder bags – they just slip off!), red, hot, puffy face, excess sweating, even in cooler weather, night sweats, pins and needles in arms, cramps in legs, high blood pressure, bruise easily, sores slow to heal – and that’s just the physical symptoms.
I am so depressed and low on self-confidence that hardly go out anymore, don’t have many friends, and had to stop working as nurse, which is the job I love.
I finally got my local doctor to send me to an endocrinologist in March this year. She did an ultrasound of my thyroid (showed a tiny nodule) and ordered a 1mg dex supression test. When the dex test came back negative and I went back to see her, I just cried my eyes out. She referred me to see a psychiatrist, and said she was done with me. The usual – you can’t have Cushing’s, its too rare. No urine tests, nothing.
I called the Pituitary Foundation in my state who are really helpful, and gave me loads of information. The lady mentioned cyclical Cushing’s. But they can’t tell you which doctor who can help you, it is different in Australia because you need to be referred by your local doctor, and they have no idea who can diagnose Cushing’s or what tests to order. So now I have really lost hope of getting a diagnosis, it like fighting everyone all the time, just to be taken seriously.
There are days when I have no fight left in me, and wonder how bad it is going to get, will I get diabetes, heart disease?
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Sep 03, 2013 @ 04:51:00
Hi Leah I’m in Aus to. My local gp is the one who diagnosed me after 18 months of test after test. I did a 24 urine test then did the dex suppression test to confirm it. I would just tell your gp you want to be tested for it.
Good luck!
Jul 29, 2017 @ 10:39:40
Did you find help?? It sounds lovely me cushings. Ask for an MRI to check if there’s a small tumor in the pituitary.
Please look up Dr. Daniel Kelly in Santa Monica California. USA…they have a whole unit devoted to understanding pituitary and types of surgeries for it too.
Best to you!
RWilde
Polkadotmoms@yahoo.com
Sep 16, 2017 @ 08:51:28
I was diagnosed with Cushing’s two years ago after having a severe kidney stone. The X-ray that they took when they found the kidney stone revealed a large tumor on my left adrenal gland. I was actually diagnosed by my urologist. After he saw the kidney stone which was the first one I’ve ever had in my life, my stretch marks, excess hair on my body, and probably my depressed mood, he ran a urine test. It was just like that. I had suffered for 13 years through three different doctors still being undiagnosed. The kidney stone turned my whole life around. Three months after the kidney stone incident he performed an adrenalectomy and removed both my adrenal gland and my tumor which was benign. Ivan suffered from Addison’s disease for which I have just finished up daily prednisone doses. I’ve lost 70 lb, regained my energy, but still have problems with carpal tunnel and tendonitis and pain in some joints. I am telling you my story, and hopes that it reveals some other options for you. Best of luck, don’t give up! The urine test that they ran cost approximately $100 and had to be run by the local hospital Laboratory. If you’re really ready to pay, tell the doctor that that’s what you want to be run and that you will pay for it. At that point it’s your “money lost” in their eyes, so what have you got to lose? A urine test will tell you if you have Cushing’s even if you don’t know yet if it’s a tumor on your pituitary or on your adrenal gland. It’s also enough evidence for them to move forward with finding it. Just remember you may have to take three or four tests, as sometimes Cushing’s cycles. – Lisa in Colorado
Oct 11, 2020 @ 03:38:17
i have been on high doses of prednisone for over a year and have all the symptoms of exogenous cushing syndrome but have been made to feel like i;m going mad. they have not diagnosed me as having this. i get so depressed with the pain sometimes and feel like they are only interested in the original condition not the side effects. i too have lost a job i loved people i worked with financial independence and any interest in seeing anyone