And It's About Time There Was Some Support For Cushing's!
I started feeling really bad in January, pcp sent me to an endo who tested my cortisol level, which was very high (1001 with normal 4-50).
Did a mri which showed a 1 cm pit adenoma on right side of pituitary.
Dr. now says see you in 3-6 months because I had a 2nd 24 hr urine test which was low/normal. Trying now to locate a new endo so we can get to the bottom of this!
I've probably been having symptoms for years, but I only noticed that there was something very wrong in Jan 2004. Over the years I had spells where I would feel like I was on "adrenalin", I just wanted to move constantly, would cook everything in the house (my husband never went hungry!) and just cleaned like a mad women (definately not my norm!)
I suddenly developed weakness, heart palpatations, dizziness in the fall of 2003. The cardiologist couldn't figure out what was causing the problem. In January I was having profound weakness, dizziness, memory loss, my hair started falling out, as did my eye lashes, I had gained about 40 pounds, and laughingly called my fat cheeks "chip munk" cheeks. My abdomen got very large as well, and I was waking up every 1 1/2 hrs at night and just wondering the halls. About this time my heart rate went down to the upper 30's lower 40's and the cardio dr. talked about putting in a pace maker. My skin got extremely -more than a little dry and I was urinating more than normal, and my skin looked like all the water was sucked out of it. A year earlier my blood pressure had sky rocketed and had to add extra blood pressure meds daily.
When I went to my PCP he did labs and found my TSH was low. He did a 2nd one a week later and it was lower than the first and let me see an Endo. The Endo immediately said I had the looks of someone with Cushings and did labs. My first cortisol was 10 x the normal amount (1001 with normal 4-50). He then did a MRI which showed a 1 cm pit tumor with possible hemorrhage. Shortly after that I changed Endo's (I had problems with his nurse) and the 2nd Endo agreed that surgery was warranted. He felt I only had insulin resistance and did not have Cushings. I had a 2nd MRI and it still showed a possible hemorrhage but the Dr thought it was just a cyst since it hadn't changed any in 4 months.
I finally had my surgery here in OKC in Oct 2004 and everything went so well. My tumor had been hemorrhaging (3 mm hemorrage area) and I didn't have any post surgery complications. My tumor did stain with ACTH and the surgeon felt I had Cushings (even tho the 2nd Endo doesn't) But all is well. Since the surgery I have been able to lower my blood pressure to 1/4 of what I had been taking, to nothing. And I've been able to loose about 35 pounds since my surgery 4 months ago. I know I have been very blessed and I am thankful that all went so great for me.