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Kim P's Story

Hopefully this explains my rapid weight gain in 2.5 years...

It's a long story, so please bear with me...

I have been very depressed lately, all to do with my physical appearance and how it has changed so drastically over the past three years. After having numerous individual tests for many individual symptoms (thyroid, anemia, menopause, blood sugar), I finally googled all my symptoms at once and discovered something call Cushing's Disease. I faxed this info to my new, younger, female primary care doctor. She ordered the preliminary 24 hr urine test and when my #s came back high, showing higher than normal levels of cortisol (the stress hormone), she referred me to an endocrinologist. He was a real jerk - and at my first appointment said, "oh just by looking at you, I don't think you have Cushing's; you're just fat." And he said for other symptoms, I'd have to see other specialists - see below...

That is what the Doctors are pursuing now as a diagnosis. The first set of tests indicates I may have it. It is amazing how many of the symptoms I have...

In June, I went to a wedding in Florida. This was my 3rd friend to get married within the past year, and it is the 3rd time I have been so upset that I will not allow myself to have my picture taken. One of my symptoms is severe sweating. Not two seconds after getting ready for the wedding on Saturday and drying my kinky hair, I was completely soaked. I was so pissed and upset. I didn't want to go to the wedding and certainly didn't want to stay long at the Reception - and couldn't dance because I'd break out in a sweaty mess, despite being in an a/c ballroom.

It's so disgusting and I feel so disgusting. When I got back to the hotel, I did some more internet research on Cushing's and found a Support Group which posts photos and stories of people who have this. To see their photos and how distorted these people look and how I look - seeing the transition to getting Cushing's and then the "after surgery" photos, I am hopeful this is what I have and it can be corrected with surgery. First, they have to confirm that that is what I have. I cried so much seeing these photos and reading their stories.

The Endo ordered tests - urine and blood. Both came back suggesting elevated levels of cortisol. He had some of the tests repeated just in case the lab made a mistake the first time and for any possible redundancies. As a result of all these tests, he scheduled me for a CT scan of my adrenal glands.

I went to see the OB/GYN (to see if I was premenapausal - I am not); a Dermatologist (for my dry hair and sweating) and a Hematologist (for the bruising).

The Dermatologist is very aware of Cushing's - he had an aunt die from it because she went so long without being diagnosed until it was "too late to do anything about it". This is the second Dr. I've spoken to who had a relative die as a result of Cushing's (what is it about Cushing's that can cause death?)

I had 13 blood tests done ordered by the hematologist - no blood diseases, thank goodness.

However those results show that I now have low potassium, low zinc and high blood sugar. I can hardly move - my low back and hips and surrounding muscles are very weak and achy. From what I've read, these conditions, in addition to the high cholesterol and high blood pressure, are all results of having Cushing's. I have no energy and am tired all the time, no matter how much I nap. I've even tried going to bed earlier the last few nights, but to no avail.

The CT scan of my adrenal glands shows a benign tumor on my right adrenal gland. This is one of the causes of Cushing's Syndrome. Based on this and some of the blood tests, the Endo is running 9 more blood tests to determine which hormones are being affected and, from what I've read, these focus on pituitary involvement. And I had another urine test. This happened on Monday, Aug 20.

He has not officially diagnosed me as having Cushing's Syndrome, although from what I've read, I would think the tumor and my lab results confirm this.

From what I've read, I will have to have surgery to remove the tumor and/or the adrenal gland. Is this a correct assumption? I am hoping to have this done as soon as possible. I wrote down 18 questions I have for the Endo and make sure I cover my bases during my next appointment, scheduled for Wed, 8/29.

I hope to have some definitive answers soon.

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