Cushing's Disease?

Question

Do any of you have, or know someone that has Cushing's disease? How long did it take for you to get diagnosed, and how hard was it?

I don't need all that info, I can google it. What I want to know is what real people have been through.. did you know you were sick.. did it take a long time for someone to suggest it? Were you diagnosed with something else first?

I've been hearing lots about how long it took for people to get a diagnosis, and how many years they were sick before someone said something.

Answer 1

Someone close to me had Cushings for five years before she was diagnosed. She went to a wonderful Dr. whom specializes in Endocrinology. This is the type of Dr. you want to go if you have cushings!!!!! Anyway, she had the surgery on the pituitary gland and was cured of the disease and diabetes.

Answer 2

Cushing's syndrome is the name for what happens when your body makes too much cortisol. Cortisol is also sometimes called a "stress hormone" and is a natural steroid hormone that's like the "cortisone" in some medicines. Cushing's syndrome can be caused by the body making too much cortisol or it can be caused by taking too much cortisone-like drugs.Your doctor may start by asking you questions and doing a physical exam. If the cause is a medicine you are taking, no tests are needed. If your doctor thinks that you have Cushing's syndrome or disease, but no medicines are causing it, you may need to have some blood and urine tests.

You may be asked to collect your urine for 24 hours. Your doctor will explain how to do this test. You may also be given a medicine called dexamethasone before your blood or urine is collected. This tests your body's response to steroids.

At some point, you may need a CT scan or an MRI. These tests show a "picture" of your insides. Looking at these pictures, your doctor will be able to tell whether there are tumors on the pituitary gland or in other parts of your body.
If the findings of the history and physical examination suggest hypercortisolism and an iatrogenic cause (i.e., corticosteroid use) is not apparent, laboratory evaluation is warranted.1 An algorithm for the work-up of patients with suspected Cushing's syndrome is presented

When Cushing's syndrome is suspected, initial laboratory testing is usually directed at confirming excessive glucocorticoid production. This is best accomplished through analysis of a 24-hour urine collection for urinary free cortisol excretion.4,20 Normal values are less than 90 µg per 24 hours (250 nmol per day). Values more than 300 µg per day (830 nmol per day) are considered diagnostic for Cushing's syndrome. The reported sensitivity of this test in detecting cortisol excess is 95 percent; the reported specificity is 98 percent.4 Ideally, the urinary free cortisol value should be confirmed with one or two additional measurements.

Because of the difficulty in obtaining 24-hour urine collections in many outpatients, some physicians use a l-mg overnight dexamethasone suppression test. For this test, the patient takes l mg of dexamethasone orally at 11 p.m., and the plasma cortisol level is measured at 8 a.m. the following day (normal value: 5 µg per dL or less [140 nmol per L]). The reported sensitivity of this test is 98 percent; the reported specificity is 80 percent.

Obesity, chronic illness, chronic alcoholism and depression can cause false-positive results (pseudo-Cushing's syndrome) on the 1-mg dexamethasone suppression test and mildly elevated free cortisol values on the 24-hour urine collection.

If the result of the dexamethasone suppression test is abnormal or the 24-hour urinary free cortisol level is mildly elevated, a confirmatory test for Cushing's syndrome is needed. The 24-hour urine collection for urinary free cortisol excretion can be used to confirm the result of the l-mg dexamethasone suppression test. Normal findings on both tests provide strong evidence against the presence of Cushing's syndrome.4 However, when Cushing's syndrome is still strongly suspected based on the clinical findings, negative tests should be repeated; the tests should also be performed again in three to six months.4


Suggested Work-up for Cushing's Syndrome . Algorithm for the suggested work-up of patients with suspected Cushing's syndrome. (UFC = urinary free cortisol; DST = dexamethasone suppression test; LDDST = low-dose dexamethasone suppression test; CRH/DEX = corticotropin-releasing hormone and dexamethasone suppression tests; ACTH = adrenocorticotropin hormone; CRH stim = corticotropin-releasing hormone stimulation test; MRI = magnetic resonance imaging; HDDST = high-dose dexamethasone suppression test; IPSS = inferior petrosal sinus sampling)

Answer 3

i bet it is real hard