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  • Cushings? Test was neg, but symptoms there

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    Old 01-17-2009, 07:54 PM   #1
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    Question Cushings? Test was neg, but symptoms there

    Hey all... A little history on myself, I am diabetic, hypothyroid, lupus, and a few other things.. I recently saw a different endo than i usually see (its his partner), and he decided to test me for cushings. I had never heard of it, but after i went home i of course had to look this up.
    I have gained a lot of weight 100 lbs, in the past 6 years all very steadily. I dont eat a lot, and blamed it on my birth control pills. It is almost impossible for me to lose anything. I have a 'hump' (that term depresses me, as it is somethin that i am very conscious about..), various muscle pain especially in my shoulders and arms. My weight gain was all centralized in my mid section and what not. I have high BP, and am getting high cholesterol.
    They did a blood test for my cortisol levels, and then when i went back for my results. The Dr - the one i normally see - completely brushed off the results (they were negative,but still) and said that the previous Dr that had ordered them was no longer working there and was 'known for ordering unnecessary tests'.
    That was the end of that. They have since not even wanted to try to do another test. Just tell me to diet and exercise more. Its sooo frustrating.
    the muscle pain is horrible, ususally gets to the point where i cant do anything except sleep it off.

    Any ideas? should i track down the other DR that had ordered the tests? He would probably be willing to do more, if i were to go down the possible Cushings idea. The other Dr's have refused to consider it.

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    Old 01-20-2009, 06:01 AM   #2
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    Re: Cushings? Test was neg, but symptoms there

    I really feel for you. I understand the frustration you are feeling. I think these docs need to start taking this disease and their patients a little more seriously. When I first started having symptoms, they were few and far between. when I would go see a dr, they would brush it off and basically tell you it was all in your head. thank god I found my doctor I have now. I have been with him for 15 years and he has been absolutely wonderful. My only suggestion to you is when you find a doctor who is willing to listen and take this seriously then stick with them. It may take them a while to find what the problem is, but if you start documenting how you feel through out the day, this may help them find out what is wrong.

    Old 01-20-2009, 10:40 AM   #3
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    Re: Cushings? Test was neg, but symptoms there


    I agree with what rlpowers says. I think it could helpful to track down the doctor who did the Cushing's tests, or try to get another opinion completely. Since you have a lot of the symptoms I don't think you should give up on Cushing's just yet. Firstly, there are other tests besides blood cortisol to determine whether a person has Cushing's such as urine cortisol tests which can actually be more reliable. Also, there is something called Cyclical Cushing's. This is when the disease goes through phases of being 'active' and 'inactive'. When it is active, the tests are abnormal, but when it is inactive the tests are normal....this is why getting a diagnosis can be very difficult! It might be worth asking for the actual values of the tests carried out as it's possible that the cortisol could have been on the high side of normal, which your doctor may have dismissed.

    Good luck.

    Last edited by Joodles62; 01-21-2009 at 09:45 AM.

    Old 02-05-2009, 08:44 PM   #4
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    Re: Cushings? Test was neg, but symptoms there

    Not everyone with Cushing's can get a high UFC which is why some doctors test 17OHCS, which is the aftermath of high cortisol. Serum (midnight) and saliva are also used to test cortisol.
    Cushing's can't be ruled out by just one test. It usually takes many of the above listed test to get a dx. It also usually takes seeing several doctors before finding one that is helpful.
    Good luck and do a lot of research.

    Old 05-12-2009, 05:33 PM   #5
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    Re: Cushings? Test was neg, but symptoms there

    Hey all,
    Just an update.. Well, I not tracked down the original doctor who ordered the test, im not entirely sure if my insurance covers him... my doctor i do currently see, who wasnt concerned with the Cushings, still isnt concerned. I have been trying to lose the weight, however, with cutting calories and exercising 5 times a day, i still have only lost 10 lbs. in 7 months. i think that there is something a little off there. my rheumatologist didnt seem too concerned, and i swear they think i am crazy. Doctors dont believe that I am working out and watching my food intake, but I am. Sweating like crazy, craving salt, super tired all the time, my muscles still go through bouts of pain in the shoulders and arms.. So. i'm still at square one.
    Thank you for the input,
    I will keep looking for another endo though..

    Old 05-16-2009, 07:29 PM   #6
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    Re: Cushings? Test was neg, but symptoms there

    Hi all,

    I used to take corticosteroids and didn't taper them off when I stopped using it.
    I haven't got tested for Cushings yet, but I have most of the symptoms. Should I be taking calcium supplements in the meantime because I do have bone weakness and pain (knees, spine, arms, teeth, etc).

    Old 05-12-2010, 10:42 AM   #7
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    Re: Cushings? Test was neg, but symptoms there

    You are miserable ! This is your life! Find help - get a new doctor! There is always hope out there ! Keep copies of every test that has been done and diagnosis. Good luck !

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