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Guest LizzyJC

Normal Cortisol tests

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Guest LizzyJC

My GP has suspected Cushings for a while now. I have the extreme fatigue, muscle weakness, round face, facial flushing, Buffalo hump, weight gain right in midsection - all the alleged tale-tell signs. However, I’ve had to urine tests and one blood test and they are always normal. I’m seeing a third endo now and she agrees with my GP and plans to do another series of blood tests. I guess my question is has anyone else out there ever had initial normal cortisol test results only to later find out it’s Cushings? 

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Lizzy, I had normal tests for the longest time.  Of course, no one would believe me that I had Cushing's despite my symptoms.

It was finally my spontaneous bleeding that got me to a hematologist/oncologist and he was the first one to get the diagnosis from a 24-hour UFC.  Of course, he couldn't do anything but I got referred on to someone who wouldn't give up and got me into the NIH for final testing and surgery.

Please keep us posted and best of luck to you! 

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Guest LizzyJC

Mary - Thank you for your response. Quick follow up question if you don’t mind...what do you mean by spontaneous bleeding? I’m only asking b/c I have pretty severe anemia but we can’t find a cause. We’ve been treating it as totally separate from everything else. I’ve had iron infusions to correct it but I’m wondering if maybe it should be part of the overall picture as well. Thanks!

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I had a lot of unexplained bruising.

Around New Year's Day, I started bleeding by my ankle.  My doctor wasn't available so my husband used a magic marker to draw a circle around the area of the bleed, then made more circles as it spread out.  The size of the area with the rings are what alerted my GP to send me to the hematologist for more testing.

Previously, I had told him, my gynecologist, a (new during Cushing's) foot doctor, a neurologist that I was sure I had Cushing's - all said it was too rare.  I couldn't have it.

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I asked some other Cushies I know and got this answer so far:

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I had the same symptoms mentioned and an MRI confirmed a 5mm pituitary tumor and still had varying tests-normal then elevated. Endocrinologists (military) had to run tests for six months. He then requested Inferior Petrosal Sinus Sampling and levels were off the chart. Then finally diagnosed as Cushing’s disease.

 

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Guest LizzyJC

Thank you so much for this information! I, too, have been told it’s too rare for me to have, but everything lines up except the tests for cortisol. My new endo is having me tested again, and running other tests b:c she’s sure it’s what I have. We’ll see. But thank you again for your help - I just can’t to you how much I appreciate it!!!

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Here's another answer I got:

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I have a confirmed Cushing’s recurrence but have had two 24 hour urine cortisol tests that come back normal because of my diet. Are you on a diet when taking the tests?

 

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Has anyone suggested Cyclic Cushing's to you?  That's where tests cycle normal/abnormal but no one knows how long a person's cycle could be.  That's even harder to diagnose due to the constant fluctuations and some endos don't believe in it, although I don't understand how a doctor can't believe in a disease.

 

Here are the bios of some Cushies with Cyclic Cushing's:  https://cushingsbios.com/category/cyclic/

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And more:

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I have normal
Quite often as I was diagnosed cyclical Cushings. Had surgery 4 years ago and am back to testing again. I did get a high 24hr but need more to confirm they say.

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It took me 2 years to confirm!!!!

 

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More responses:

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Meeee! I had the surgery was great for a year. Then slowly symptoms returned... all test negative and finally 3 years post surgery and full Cushing symptoms I have a new tumor. Why don’t they believe us! We know what we feel!!

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It took me 2 years to confirm!!!!

And

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I have normal
Quite often as I was diagnosed cyclical Cushings. Had surgery 4 years ago and am back to testing again. I did get a high 24hr but need more to confirm they say.

 

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