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Voices from the Past: Leah (Lele), Undiagnosed Bio

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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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Candy (Candybar11), Pituitary Bio

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pituitary-surgery

 

I was diagnosed with Cushing’s in 1997.

I had never heard of it before my doctor said he thought I might have Cushing’s. I went right to the library and read about the disease, they literally could have used a picture of me to display the physical characteristics.

After some testing I went to the NIH to verify I had a pituitary tumor. After it was confirmed I was scheduled for surgery. My surgery was successful to a point. They said a small part of my tumor could not be removed. My recovery went fairly well!

I began to lose weight and a lot of my symptoms went away. However it has been a long road. I still have some symptoms that never went away, I still sweat a lot, body aches and pains (now I have RA, fibromyalgia) memory not great, never lost all my weight either. My labs all say most of the time I am in normal range but I do not feel cured! But new doctor says numbers are fine you are fine.

I have been disabled since 1993, I had a lot of health issues that later were all related to Cushing’s. This disease in my opinion is never cured!

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Gabby (nielk), Steroid-Induced Cushing’s Bio

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steroids

 

I have been diagnosed with rheumatoid arthritis in 2013. I have been on methylprednisolone for about a year and a half now and have all the symptoms of Cushing’s Syndrome.

My doctor wants to get me off the steroids but so far none of the other RA medications that I have tried have worked. It has been pretty frustrating.

I can’t get off the steroid but it is making me sicker in other ways.

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