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Guest Kwren

Is Cushings worth looking into?

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Guest Kwren

Hi there, I have had ongoing health problems for most of my adult life. I am a 53 year old female. Recently got diagnosed with sleep apnea and am using cpap. It's helping maybe a little with my unrelenting fatigue. Symptoms over the years have included anxiety, fatigue, depression, dizziness, change in appetite, weak, shaky,  lack of mental focus, and more. The reason I'm here on this board is because of two things I have that may indicate Cushings. One is fat pads on my shoulders above my collarbone. It is NOT a hump behind my neck. They are unsightly and also a bit tender - all this time I've assumed it's muscle tension. The other is that I did a saliva test for cortisol last fall to see if I had adrenal fatigue. The 11pm level was above range, at 1.6 ng/mL. The range was 0.4-1.0. However, a urine test in the winter had my 11pm cortisol right in range. So, based on what I've told you, would it be worth talking to my doctor about Cushings, or do these things not really stand out as symptomatic?

Thanks for any advice on this!

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You said you did a urine test; was that a 24 hour urine test? What can happen with Cushing's is you have high cortisol levels at night but very low ones during the morning/day and if you do a 24 hour urine sometimes these almost cancel each other out and your result is a completely normal urine test.

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Guest Kwren

I did a saliva test last fall. Morning, noon, and afternoon were in range. Night was high. However, in the winter I did a urine test that uses dried urine samples. In that one, morning was low but the other three were in range. 

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The dried urine isn't really going to be helpful for looking into Cushing's. You'd be better off doing a 24 hour urinary cortisol if your doctor will order one.

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I've never heard of a test that uses dried urine.  All the testing I've ever done has had a day's worth of urine in one container (sometimes 2).  The whole thing is kept refrigerated, then whisked off to the lab.

I don't know where you're from but someplace in the world may have something with dried urine but it's definitely not a standard test.  Not yet, anyway.

Definitely talk to your doctor about Cushing's.  If you can see an endocrinologist who is familiar with Cushing's, even better.

Best of luck to you and keep us posted!

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Guest Kwren

Thanks for reply. I'm wondering - does Cushings make people feel awful? Because I wouldn't say I feel awful. I feel pretty blah and low energy all day and then feel more alert and calm in the evenings. My symptoms also seem to be very cyclic. 

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I think it's different for everyone, like all this Cushing's stuff seems to be.

I think some of the symptoms are progressive, too.  At the beginning, I didn't feel awful but felt pretty bad at the time of surgery.  When I started reading people's bios I realized that others felt even worse than I did, which was amazing to me.

Cushing's can be very cyclic - and that makes it all the harder to diagnose since everyone's cycles vary (and even your own might)

Best of luck to you!

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Guest Lise M

Hi Marie Ô I have read the 24 hour urine test has to be refrigerated ! I did one last week  and did not refrigerate it ..they put some kind of acid in the jug but didn't tell me to refrigerate ..will I have to do another one ? Have you heard of non refrigerated urine test ?

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That shouldn't be a problem at all.  

Different labs have different procedures.  Some refrigerate and some use acid.

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Hi,

Sorry I'm late responding. I have only recently returned to the boards.

I have a couple of things to say about fat pads over the collar bones. First is to make sure they are fat pads.

You say they are tender, to make sure its not swollen glands, hunch your shoulders up to your ears and feel inside your collarbone for any hard lumps.

If this test shows no hard lumps then it most likely is fat pads.

One of the most common reasons for fat pads over the collar bones is stress. Cortisol is our stress hormone. So it certainly wont hurt to have cortisol levels checked.

24 hr Urine, with Midnight saliva test followed by an early morning Blood cortisol and ACTH test should give a good picture of if it is cushing or something else.

Just know that one test in the normal range does not rule out cushings, just as one abnormal result doesnt confirm cushings. It takes a range of tests over several months to get a diagnosis.

Because the treatment is pretty serious, your medical team will want to make sure what they are doing is right for you.

I know it can be frustrating lol it was for me. But I have learnt that my Medical team does have my best interests at heart, even if they did consider that I was somehow making myself sick !! I proved them wrong :)

 

For me.... If you think there is something not right, go with your gut and get it checked out. You know your body and every body is different :). So one scenario is not going to be exactly alike :)

 

Good luck

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