Medical Breakthrough -- Obese from Secret Disease

vinesqueen · September 22, 2006

Medical Breakthrough -- Obese from Secret Disease hair growth, severe acne, depression and stopped menstruating. But it took five years before she found a doctor who recognized the symptoms of this mystery disease. "I felt validation because I had friends and family that didn't believe me. They're just thinking, 'Oh, you're sneaking Oreos at night,'" she says.

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Miper70 · September 23, 2006

This sounds just like me! I'm in the middle of having all of my hormones checked, but they only did blood cortisole, so I may have to try and find a different Endo. How do you go about finding one that specializes in Cushings? I've almost been through all of them around here to get my hypothyroid diagnosis. I think my next step will probably be mayo Clinic.

Thanks!

Michele

vinesqueen · September 23, 2006

From my Cushing's board, The mayo clinic seems to be stuck still on insisting that folks have stria (dark purple stretch marks) as the definitive mark of Cushings.

Cushing's help site http://www.cushings-help.com/intro.htm will have a list of helpful doctors in your state, or country, that can help.

NIH, the National Instiitue of Health at http://endocrine.niddk.nih.gov/pubs/cushings/cushings.htm is also a good resource.

Poodles · September 23, 2006

How do they test for cushings?? I have been diagnosed with PCOS, but some of the symptoms sound similar.

vinesqueen · September 24, 2006

Testing for Cushing's involves 24 hour urine tests to measure the total cortisol released in your system during a day. Blood tests, that measure cortisol blood serium and ACTH are also measured. Midnight salivary tests are done to see how much extra cortisol is in your system at midnight. (this is done by chewing cotton plugs. I've never had a high midnight salivary number).

Your system normally should have high amounts of cortisol in the morning, and none at midnight. Blood tests are done to meausre how much hormones are in your system.

Dex tests are also done. Dex is a steroid. Whenever I take it, it shuts off my tumor, so I never supress.

Most recently I had a Picc line installed so I could do blood draws every four hours to test my serium cortisol and ACTH levels. Not a lot of sleep happens, but I'm always on a High, so I"m not sleeping during these tests anyway.

Unfortunately, Cushing's is very complex. There is no single test that will definately rule it out. If you get High results on tests that doesn't mean that you have it, it just strongly suggests that you need more testing. Any doctor that says any one test is definate proof is a fool and doesn't know a thing about Cushings.

Miper70 · September 25, 2006

I need help finding someone to help me. My Endo. , bless his heart is trying, but I truly don't think he knows much about Cushings. I mentioned it to my new PCP the other day and he said "with Cushings, you have definite visible symptoms." Ummmm. I have major facial hair, hyperpigmentation on my face, upper body obesity.....etc. I'm beginning to think I'm screwed on this. I don't know where else to turn. The only thing they checked as far as cortisol goes was just the regular cortisol blood test.

HELP!!! I'm still not losing weight. If I do, I gain it back within a week.

vinesqueen · September 25, 2006

sorry, I have to laugh.

major facial hair (check)

hyperpigmetation of the face (check)

upper body obesity (check)

Round face? (check I can see it from your avatar)

do you have a hump or subclavial fat pads? (I look like I have lemons sitting on my collar bones)

Do you have stretch marks?

Ask your doctor if he diagnoses patients with high blood pressure or diabetis by simply the way they look. It's the same difference.

Go to the Cushing's help site in my signature. Sign up for the board. We will help you find someone there. Send me a PM with your phone number and we'll see what we can do. I will be heading to OHSU in Portland again tomorrow morning so I'll be gone all day tomorrow, and most of this afternoon, but we will get you sorted out.

I'm Vinesqueen on the Cushing's board too. I will be there for you, I am here for you.

Strength and Courage