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  • Possible Cushing's ... Awaiting Test Results & Need Advice

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    Old 08-17-2016, 02:28 PM   #1
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    Jem412 HB User
    Possible Cushing's ... Awaiting Test Results & Need Advice

    After over a year of testing, it seems as though they're closer to finding out what's wrong with me. Long story short, the first endocrinologist I saw refused to do further testing other than my thyroid and I sought a 2nd opinion for a new endo after 8 weeks being on a synthroid that never helped me. The new endocrinologist did a full work up (re-tested my thyroid, tested my pituitary function and cortisol levels again). Previous cortisol levels have been high both times I was tested. My prolactin was a little high, TSH still slightly elevated... I've just finished a 24 hour urinary free cortisol and creatinine test this morning. The waiting process is brutal to find out the results...

    Weight Gain (Almost 30 pounds in 8 months without trying. Weight gain is primary in my upper thighs, stomach, upper arms, round face, and in between my shoulder blades at the base of my neck)
    Crave Salty/Sweet/high Carb Foods
    Excessive Thirst
    Difficulty Focusing/Concentrating
    Difficulty Controlling Emotions
    Loss of Short Term Memory
    Decreased Sex Drive
    Boughts of insomnia (at night) and extreme exhaustion (during the day)
    Random Bruises
    Muscle Weakness/Exercise Intolerance.

    Anyway, for those that DO have Cushing' accurate is the 24 hour urinary test? I've felt sick for so long, and now that it's getting worse, people in my life are starting to notice...especially the weight gain. Does anyone know how to control the weight gain caused by hormonal issues?

    I'm just praying for answers soon so that I can get my life back. I'll consider any advice someone has to offer.

    Last edited by Jem412; 08-17-2016 at 02:46 PM.

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    Old 10-05-2016, 10:39 AM   #2
    Houstongirl's Avatar
    Join Date: Oct 2016
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    Houstongirl HB User
    Re: Possible Cushing's ... Awaiting Test Results & Need Advice

    The 24 hour urine is the first test they did to see if I had cushings. They followed up with blood tests, MRI, and scanned my adrenal glands. Within 2 weeks I had a definitive diagnosis of Cushings. Now they swab your mouth to test for Cushings as well. Good luck.

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    Old 10-18-2016, 09:52 AM   #3
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    Location: PA
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    Re: Possible Cushing's ... Awaiting Test Results & Need Advice


    My name is Sandi, and I was diagnosed with Cushings Syndrome in March 2014.
    I fell and injured my back, and had an MRI where they discovered massive tumors on both of my adrenal glands.............the start of "my journey".

    I was terrified, and posted part of my radiology report for friends and family to see. Lucky for me, a dear friend and my Niece are both Veterinarian's, and told me that I had Cushings.

    Trying to find an Endo that believed this diagnosis and a treatment plan was beyond frustrating!!
    Out of frustration, I searched current clinical trials and found my fabulous physicians at the National Institute of Health (NIH) in Bethesda MD. They were my lifesavers! All of my care at the NIH was FREE and state of the art.

    I had a bilateral adrenalectomy in 8/2014 and I am doing ok.

    From what you posted, it sure sounds like Cushings to me. My Drs. told me that the 24 hr urine collection is the most accurate.

    Please let me know how you are doing.

    Take care

    Sandi K.

    Last edited by Administrator; 10-18-2016 at 06:00 PM.

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