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In April 2002 I visited my internist complaining of weight gain. I had been exercising for several months but still continued to gain weight. This was attributed to a changing metabolism (i.e. getting older), which I think was partially the case. However, at this time I was diagnosed with high blood pressure and put on Paxil because he felt this was due to stress that I had been experiencing in my personal life for the past 2 years. After a few weeks he put me on a diuretic for the high blood pressure. In less than a week I was in the ER with numbness in my hands and arms and chest pain. They found that I was seriously low on potassium.
By September 2002 I was noticing 2-3inch pieces of broken hair on my sheets. I had always had fairly long, thick hair. Plus my hairdresser was saying "your hairs a wreck what are you doing". Back to the internist who ran several tests for thyroid and autoimmune diseases and then referred me to a dermatologist. Also, about this time I noticed that my skin broke and bruised easily, I thought possibly this was from the blood pressure medicine.
In March 2003 I went to my gynecologist thinking that it must be female hormone related. I explained all of my previous complaints and added that I felt my face was puffy. He has known me for years and agreed that my face was puffy. He gave me a potassium-sparing diuretic and told me that this would get me back to my old self. A week latter there was no change in my face so I stopped the diuretics. He set up an appointment for me to see an endocrinologist in May.
In April 2003 I was back to my internist for a checkup and asked him if we could change my blood pressure medicine because my face was getting so puffy and I felt it had to be due to something since I had been dieting and exercising since January and had lost 30 pounds (the amount that I had gained) but my face was still puffy. I think at this point he was pretty sure something was up. I did a 24-hour urine test and two days latter he told me I probably had Cushing's disease and referred me to the same endocrinologist that my gynecologist was referring me to. I had never heard of Cushing's. I can remember rushing back to my office and looking up Cushing's disease on the Internet. At first all I could find were articles pertaining to the disease in dogs. I thought oh great I have a dog disease. Thus the beginning of my long and continuous search to find out everything I can about Cushing's.
Upon my visit with the endocrinologist in May 2003 her examination noted temporal fat pads, which I had contributed to gum chewing, and supraclavicular fad pads, which I had not noticed at all until she pointed it out, then I contributed it to working out. I was not buying in to this yet. I felt way too good and had too much energy to have a disease or syndrome. Over the next few weeks she conducted more urine tests that again showed excess cortisol, she then did additional testing to determine the cause of this. An MRI confirmed a small tumor on the right adrenal.
I work at a hospital but there weren't any surgeons at the facility or within the affiliation who had experience with removing adrenal glands. I had researched on the Internet and decided that I wanted it done laprascopically if possible. My endocrinologist and I worked together to find a surgeon and medical center that we both felt comfortable with. The surgeon had performed 97 laparoscopic adrenalectomies so I felt good about that and he was located only 300 miles from me. The procedure was preformed on June 9th 2003. I spent the night and was released the following morning.
Three months post op in September 2003 I started experiencing severe body aches, bone and joint pain and stiffness and muscle weakness. At the time I was just getting out again and working in the yard and lying in the pool so at first I contributed it to overexertion or too much sun. My internist ordered several tests for autoimmune diseases, etc. and nuclear bone scans to rule out any additional conditions. He concluded that these pains must be related to the Cushing's condition
My last ACTH stimulation test was in March 2004. Still not much going on with the adrenal and at this time was diagnosed with hypothyroidism. I am curious as to whether this was caused by my current hypoadrenalism. At almost a year post op I feel I am doing fairly well, my only complaint being my body aches and stiffness. A few months back I started yoga and neuromuscular massages, this has seemed to help.
I am convinced that Cushing's is what God came up with to teach some of us patience. This seems to be the Cushing's motto "be patient". Unfortunately for me this has never been one of my virtues so this has been the hardest part. I am glad I found CSRF. I am an avid Internet user so I don't know why it took me so long. Also, now I am disappointed that I could not diagnose myself by using the Internet. I did hours of research on the Internet prior to my diagnosis searching such things as broken hair and puffy face and never hit upon Cushing's. Of course, it is all so obvious now. My story would not be complete without mentioning a few folks who have helped me through this. My family…………. they have not faltered, they have supported me, never questioned my decisions, put up with me and most of all prayed for me. I am a lucky woman.
I hope to hear from you.
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