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Cushing's: Is my cortisol high enough to be Cushing's?

By Anonymous April 15, 2011 - 10:18pm
 
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My afternoon (4 pm) serum cortisol was 21.4 ug/dl (the normal range was 3.1-16.7). Apparently, serum cortisol from one time point is not the best test for Cushing's, but is this high enough that I likely have Cushing's? Some background: I am a 29 year-old woman and have had most of the symptoms of Cushing's for years, including fatigue, weight gain (much of it abdominal), round face, big buffalo hump, easy bruising, irregular periods, many infections, poor wound healing, irritability, anxiety, muscle weakness, severe joint pain, poor memory/concentration, headaches, edema, abdominal pain, facial hair, dizziness, and many more. I also have a lot of white shiny stretch marks (some about 1 cm wide), but they are not purple (sometimes they're pink).

When my PCP called about my test results she said that everything was normal, and then I looked at the results online. Not only was the cortisol high, but my white blood cell count was high (I probably have another sinus infection),my Vitamin D was low, my TSH has increased (from 2.6 last summer to 3.3 now), and my alkaline phosphatase is high. She probably thought I had PCOS, but my free testosterone was near the low end of the range. I think I'm going to have to either beg or argue with my PCP to get a referral to an endocrinologist. I'm afraid that she is going to say that serum cortisol 30% above the top of the normal range is nothing, and that I am just depressed. Unfortunately, I've had this experience before when doctors just blew off my severe abdominal pain for 3 years, and were still insisting I was just depressed after my gallbladder had collapsed and I could barely walk. If they did that with something obvious, then what chance do I stand with getting a Cushing's diagnosis?

Add a Comment3 Comments

Found a few for you-- give them a call but if you don't like any, let me know and I'll look for some more.

Dr. Naila M. Goldenberg, MD
222 Piedmont Avenue
Cincinnati, OH 45219
Phone: (513) 475-7400

Dr. Ron J. Hsieh, MD
8041 Hosbrook Road Suite 200
Cincinnati, OH 45236
Phone: (513) 891-3664

Dr. Charles J. Glueck, MD
3200 Burnet Avenue
Cincinnati, OH 45229
Phone: (513) 585-7800

Keep us posted!

Rosa

April 17, 2011 - 5:25am
EmpowHER Guest
Anonymous

Thank you for responding. Yes, I would have preferred to have more tests run for Cushing's (as well as for other hormones in case they are a problem). The one afternoon serum cortisol test and the other few tests were what I could get the PCP doctor to do at first. The Endocrine Society recommends against any single time-point serum cortisol tests, instead suggesting the 24 hr UFC, but I am stuck with it. My PCP originally said that later she might do more tests, I guess if she thought the first ones warranted it. I have another appointment next week for follow-up. I am afraid that she is going to decide that nothing is wrong and then stop testing for anything else and not give me a referral to an Endocrinologist. I think I could go to an Endo without a referral, but then they might not take me seriously. Do you know of any good Cushing's specialists in the Cincinnati, Ohio, area?

April 16, 2011 - 10:14pm

Hello Anon,

Thanks for your question! Cushing's Disease is one very hard disease to diagnose. Other than this one afternoon blood test, have you been tested more extensively for Cushing's?

Here are some of the tests?
Tests for Cortisol Levels
24-hour urinary free cortisol level—urine is collected for 24 hours and tested
Late-Evening cortisol saliva/blood level—saliva or blood is collected around 11pm and tested
Dexamethasone suppression test—a synthetic cortisl called dexamethasone is taken by mouth; blood and urine samples may be taken overnight or over several days
Tests to Determine Cause of Cushing's Syndrome
CRH stimulation test
ACTH level
High-dose dexamethasone suppression test
X-rays and Scans
These tests may show whether there is a tumor in the pituitary or adrenal glands or another area of the body. Common imaging tools include:

MRI scan —a test that uses magnetic waves to make pictures of the inside of the body
CT scan —a type of x-ray that uses a computer to make pictures of structures inside the body
Chest x-ray —which may detect tumors in the lungs

Your doctor may not perform ALL of these tests on you, but I think given your symptoms you do warrant at least a few tests to rule out Cushing's. Your cortisol level was elevated, but it wasn't that far from the normal. However, the test is usually performed late at night for more accurate results.

You sound like an educated person, if you feel like your doctor is "blowing" you off, then I encourage you to seek a second (or third) opinion. If you need help finding a doctor in your area-- please let us know.

Hope you find the answer to your symptoms,

Rosa

April 16, 2011 - 7:01am
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