Originally from Friday, October 3, 2008
I am 24 years old.
Last year my life changed. In less than 3 months I gained 39 kg or 85.8 pounds in less than 4 months. I am constantly tired no matter how much I sleep. I suffer on/off insomnia, my skin is fragile and thin, my hair on my head is falling out in droves and is not growing fast at all. I suffer severe migranes, have horrible stretch marks across my body, have lost my shape, have a swollen (moonface?) face, have extra hair growth on the body and I am bruising easily.
I have little concentration, am very irratible and have noticed personality changes. I get heatrashes in the middle of winter across my face, yet my hands will be frozen. My bones ache and I have lost so much muscle strength. I am so depressed, have a low libido, have no period and lately I am having problems with my eyes.
My normal doctor knows there is something wrong however none of the endo’s I have seen do anything. One told me it was all from depression. Another told me I stuff my face too much. This especially hurt as I was living on 2400 Kilojoules a day, barely surviving, exercising like crazy and still putting on a kilo a week.
My blood tests show my cortisol is high, my platlet level is getting higher and higher, I am constantly showing signs of infections/inflammation, I have hypothyroidism.
In Australia, the only way to diagnose cushings is with a 24hr urine test, yet mine was only “moderately” high. It is affecting everything in my life and I just want to know what it is. One of the hardest parts is the not knowing.
Everytime I eat, people stare and you can tell they think I’m gross. People make nasty comments about my weight and say I should exercise. I don’t do much anymore because I just can’t manage it, but even when I did, nothing positive would happen. Its affecting my friendships and relationships. I feel like such a winge, but I can’t help how hopeless it feels.
I am so grateful for this, for being able to vent with others that actually understand what its like.
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Jul 20, 2016 @ 15:33:20
I am just about where you are. Right now I waiting on the results of my 24 hour urine test. I can’t even stand to look at my self in the mirror. I hope to find out something soon. My primary care doctor fussed at me for gaining so much weight. Even though I told him I wasn’t eating any more that usual. I not sure my endocrinologist is taking me seriously. Help. Someone please understand.
Jul 26, 2016 @ 23:03:17
I just replied to wanda so see if the post shows up. try to look up Theodore Freidman from UCLA. he is a specialist in cushings and hormone imbalances. people travel from all over the world to see him. because he warns that most times this disease can go untreated for lack of knowledge and not combining records by the physicians you have previously seen. a specialist is neccessary. There are many sites , hit them all. you will see over and over the frustration of patients like ourselves . Some relate it took 26 years to get the diagnosis but we have tools to insure it does not take that long. still it requires some patience and a lot of pushing. One site even has a mock visit with a endocrinologist saying over and over as the patient tells her positive test for cushings and he says no you don’t have cushings because it is a rare disease. Whatever you do have does deserve a intense search and a correct diagnosis .Push hard for answers.
Jul 29, 2016 @ 17:24:27
All my tests ended up negative (24 hour urine, MRI, dexamethasone) don’t know if to go with this or not. I was diagnosis with hypothyroidism. We’ll see but it doesn’t account for all my problems. Have to have my picture made tomorrow. I really don’t want to. Oh Well One of the many challenges of life. Guess I will face this one too, Faced many others.
Sep 22, 2017 @ 18:07:18
Hi Rebecca, just wondering if you were finally diagnosed with Cushing’s?