Cushing's Info

I have hypothyroidism, central sleep apnea, diabetes 2, high blood pressure, high cholesterol, rosacea, Sjogren's Syndrome, and occasional Reynaud's. I had a fever of unkown origin for 6 months in 2006. During that time my fever was at 40 degrees (C) for one week, during which time I was in hospital and they packed me in ice. Blood tests and procedures showed nothing conclusive. I had hepatomegaly and splenomegaly. A liver biopsy showed the beginning of fatty liver disease. I vomited and had diarrhea throughout this time period. My face was red and my hair fell out (almost one third). I felt as though every bone in my body was broken. My toes turned bright blue and I had to put them in hot water to get feeling back in them. It was painful. Shortly after this, in the same year, I began to have dry eyes and dry mouth. The acrid taste in my mouth woke me up at night. My eyelids started sticking to my eyes and I developed corneal scratches. I had my gallbladder removed in 2007.  My sleep apnea was found in 2008. In 2009 Sjogren's Syndrome was confirmed, although I am serum negative. I diagnosed myself with hypothryoidism last month after going on my own to get my TSH and T4 levels checked.

Almost everything I have was self-diagnosed because doctors (in the US) assume you are a chronic complainer if you have lots of symptoms. They don't try to find the answer or explanation for why you feel bad. They blame you for your illness and think you are making everything up to get attention. I have never been an attention seeking person. I am shy, humble, and prefer not to be in the spotlight. Only after years of pushing them did they order a sleep test (I stopped breathing 40 times per minute in the test), the salviary gland biopsy and Schirmer's Test (for Sjogren's), and a diabetes test. I probably had sleep apnea for 20 years before finally getting a sleep test.

My face began to blow up in 2009. I began to have a wildly racing heart with episodes lasting several minutes. Tachycardia runs in the family and I'd had ti before, but this was worse. My hair was still falling out. I continuned to have diarrhea and was told it was because I don't have a gallbladder. They said I had IBS. The rosacea worsened and I didn't want to go out of the house for the embarrassment. I had, and still have, daily headaches. My head feels as though it would explode. I began to have constant dizzyness and balance issues.

Last January I developed large fat pads in the supraclavicular fossae.  They continue to grow larger. The fat now extends into the arm pits. My arms are thin and don't have the strength they used to have. I have gained 25 pounds. I have been thin all my life, no matter what I eat. I am 5 ft 4 inches and now weigh 145. My eating habits have not changed so I don't know why I gained 25 pounds. I have no energy and can't go  up a set of stairs without being exhausted. I had pulmonary function tests done and they are basically normal (slightly abnormal, but not enough to warrant treatment). My hair is very thin now and it breaks easily. My fingernails and toenails are thin and crack easily. I bruise easily. I get spontaneous bleeds in the whites of the eyes. My stomach looks like I'm pregnant. I have diarrhea almost always.  I walk a lot for exercise but nothing makes me feel healthier.

I feel bad all the time. In spite of having lowered my sleep apneas to less than 5 per hour each night, I still wake up all night long and I never feel rested. I could stay in bed all day. As for my outlook on life, I feel flat, as though I've been lobotomized. Nothing excites me or gives me a reason to feel happy about life. I am flat flat flat. This is different from being depressed, which I have been before so I know how that feels. For example when I had a baby that died at birth, I was sad and depressed. This is different. I just feelt flat, like life is really nothing to get excited over and basically that life has no point. I want life to end because I don't see the point in anything. This is hard to explain--how it's different from being depressed or suicidal. I am just flat. I have no hopes, no expectations, nothing to look forward to. I guess it feels like the joy of life is gone.

I got blood tests done for hypothyroidism and that's how I found out I'm hypothyroid. Here in Mexico, where I live, a person can just walk in a lab and ask for blood tests. So that's what I did. I then started myself on 50 mg of thyroid medicine (Eutirox). My next step is to get scans of my head, chest, and thryoid, and more blood tests to determine cortisol and ACTH levels. Yesterday I went to a thyroid doctor here and I brought him all my blood tests. He confirmed hypothyroidism and said I needed the scans done and the other blood tests. I'm through with going to doctors in the US. They don't listen to you unless you are on the verge of death. Why do I have to wait another ten years before I get diagnosed with Cushing's? By that time I'll have lost whatever little bit of hair I still have and will probably weigh a hundred pounds more and have permanent heart damage and god only knows what else.

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