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Deb33

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Posts posted by Deb33

  1. I am currently looking into what seems to be a limited study.

    Can i ask if any Cushies have been tested for Alpha 1 antitrypsin deficiency  and then where diagnosed with Cushing's.

    Or

    Were treated for Cushing's, now in remission but experiencing lung issues or found to have liver issues..... have since been tested for A1AD and found to be deficient?

     I am looking for any studies, papers, personal stories in this area.

    Any info would be gratefully accepted. :)

    • Like 1
  2. 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

    • Like 1
  3. I wasnt stressed and i was calm until they started telling me I was the cause of my high cortisol levels. Mind you this was AFTER they removed 95% of my pituitary gland. There cant possibly be another reason why my levels are still high, so IT must be ME !!! It eventually got to the point where i was stressed and i couldnt calm down as i was being blamed and i didnt know how to fix it. It did get to crisis point ! I'm almost too scared to go to my next appointment. Im sure my levels have dropped, but i thought that last time and they were still high. But if that doctor tells me again that its something im doing im going to scream at her. I stopped using moisturisers, my skin is so dry, i stopped using Powder after Baths/showers, i stopped using herbs in my cooking. I dont take anything over the counter, only my prescription meds that they told me to take ! I am 100% sure nothing im doing is causing my levels to go high....yet you get told enough time its your fault and it becomes your fault and then the crisis assessment team is at your house every second day checking to make sure your safe ! Not good !

     

    Doctors honestly could learn a thing or two about cushings thats for sure !

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