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CUSHINGS DISEASE - help - anyone else had problems getting diagnosed??

(4 Posts)
dionneangel Tue 03-May-05 15:38:04

Hi this is my first time here. Please can someone help me, I am being tested for Cushings Disease and because it is rare my doctor doesn't know much about it and therefore tried to tell me there was nothing wrong with me when in actual fact I have a load of symptoms which makes me seem like I'm lot older and I am only 22! has anyone else had this disease mentioned to them by their doctor or has anyone actually been diagnosed with it, I am very keen to talk about this to someone as my family seem to think it is a big joke because it seems so unreal. Thanks so much

noddyholder Tue 03-May-05 15:45:18

what are your symptoms?I had a kidney transplant in 1985 and at the time the doctors told my mum they thought I may have had this.I know it is either over or under production of certain steroid hormones I have a friend with this so may be able to ask her for you

bundle Tue 03-May-05 15:49:53

cushings disease is where you have too many steroids (produced by your body, not taken as a drug) and because of the wide range of symptoms it can often take a while to get a diagnosis

dionneangel Tue 03-May-05 15:57:42

thanks for getting in touch.it is when the body produces too much of the steriod hormone cortisol which is linked with stress.did they never look into you having it then? my symptoms are:severe headaches,loss of short term memory,lack of concentration,no energy at all,high blood pressure,high cholesterol,weight gain esecially around the top half,rounded face,purple stretch marks,blurred vision sometimes,fatigue,depression,back ache,bruising easily,hump that has grown on the bottom of my neck between my shoulder blades (they say it is a buffalo hump).The list can go on forever and my bad memory makes it hard to list them all...the doctor got me to do a 24 hour free cortisol urine sample but said the results were clear, why then am I still having all of the symptoms of the disease. I am just concerned that they are going to push me about from pillar to post diagnosing me with things that I don't even have as was the case of a girl in the same situation.it would be great if you could ask your friend which test I should ask for as there are loads of different ones and most of them can give false results so if I can demand they give me a good test then I can finally start getting some answers from them and start sorting this out. make me angry when they have not got a clue about certain things thanks so much

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