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Shaw

ChattyCushie
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Status Replies posted by Shaw

  1. lise

    lise    Shaw

    Hi there ..Not sure if I wrote you .I am fairly new here and dont quite know where to go from here .. I am looking to talk to someone with cushings in my area .. I am 30 min fom ottawa .. I am sure you replied to one of my posts ..please try and contact me .. I am dying from this stupid cushings I am sure that is what I have .

    1. Shaw

      Shaw

      That's fantastic news! Life without Cushing's is so much more fun, and calm. Hopefully the wait isn't too long. I had surgery within 3 months of getting my diagnosis so it was too bad. I was put on ketoconazole (an anti-fungal medication that lowers cortisol levels) for the 3 months before surgery so that lowered my cortisol levels to closer to normal and I started seeing improvements then. I'm really really excited for you!

    2. (See 7 other replies to this status update)

  2. lise

    lise    Shaw

    Hi there ..Not sure if I wrote you .I am fairly new here and dont quite know where to go from here .. I am looking to talk to someone with cushings in my area .. I am 30 min fom ottawa .. I am sure you replied to one of my posts ..please try and contact me .. I am dying from this stupid cushings I am sure that is what I have .

    1. Shaw

      Shaw

      Having a high 24 hour cortisol is the best news for testing. For most people it's the hardest test to come back high but for me my other tests were normal except my urine test. I did many 24 hour cortisol tests and all were elevated so they really helped me get to surgery. The muscle weakness is the worst part, I used to tell my doctors it feels I'm trying to walk in wet clothes. The muscle weakness was the first and quickest thing that improved for me so here's hoping you can move along to treatment soon!

       

    2. (See 7 other replies to this status update)

  3. lise

    lise    Shaw

    Hi there ..Not sure if I wrote you .I am fairly new here and dont quite know where to go from here .. I am looking to talk to someone with cushings in my area .. I am 30 min fom ottawa .. I am sure you replied to one of my posts ..please try and contact me .. I am dying from this stupid cushings I am sure that is what I have .

    1. Shaw

      Shaw

      I used to have the most terrible brain fog; so I started writing down every symptoms everyday along with blood pressure and test results and even then I still forgot things all the time. I wish I knew of some good doctors for Cushing's in the Ottawa area but I'm from Northern Ontario. We have 1 endo here and he was useless so my family doctor really got involved in fighting for me. My ACTH was also normal; that's actually pretty common so don't be discouraged by that. Hopefully the 24 hr cortisol will show something that will finally get an endocrinologist to take this seriously

    2. (See 7 other replies to this status update)

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