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Guest Kenz

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I got my lab work done.

I have all the symptoms of cushing’s Disease, from the buffalo hump and obesity to the easy bruising and the muscle weakness. 

My cortisol levels came back normal, and I haven’t gotten the results of my ACTH yet. 

Has anyone had normal cortisol levels come back and still had cushing’s Disease? 

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  • Chief Cushie

Absolutely!  I had to do weeks and weeks of UFCs before I was finally diagnosed.

Best of luck to you, Kenz.  I hope you join the boards so you can get access to all the info and here.

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  • Chief Cushie

I asked some of the other Cushies I know.

One said:  "I was dx with dex suppression test. Normal levels in AM, normal 24 hr urine."

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  • Chief Cushie

Unfortunately, this is one of the reasons it's so hard to diagnose Cushing's - far too many normal results and endos stop testing. :(

 

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  • Chief Cushie

Jen, why did they test you at all since you had normal labs?  Did they go by symptoms alone or something else?

Congratulations on having surgery!

 

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Yes it was all due to my symptoms and how I looked.  The surgery only worked for about a month and then all symptoms came back. The surgeon never saw an adenoma  but lab kept saying tissue was abnormal so he took my whole right side and sent for pathology and it came back as corticotroph adenoma so next step is seeing another surgeon on September 5 to discuss bilateral adrenalectomy.  My DHEAS is always high also. 

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  • Chief Cushie

Jen, you were very lucky getting a doctor to test on symptoms alone.  Most will only look at lab work :(

Best of luck with your next appointment for a BLA.  Ask him/her about the possibility of Nelson's, which can occur sometimes if you still have a pituitary tumor after your BLA.

 

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