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Had cushiness disease and am still sick after treatment

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naandy91764
naandy91764

In 2008 I had surgery to remove a tumor on my pituitary gland. The doctors say it was a success. After recovering for 18 months, I started to feel better, and just like that, all at once I started gaining weight very rapidly, and my symptoms were back. My doctor told me it was just depression. I tried to tell him I was still sick but he wouldn't listen. I went to two different endocrin doctors after that and they did a 24hr. Urine test, which was normal. Since then, I went to another doctor who said my cortisol was on the high end of normal. A tumor didn't show up on an MRI, so he said he couldn't do surgery. He said he would test me with the 24hr. Urine collection every 2months. Meanwhile I am so debilitated that most days I'm in bed most of the day, sleeping and in a lot of pain. I have headaches  regularly and often they are so bad i have to go to the med. center for treatment. I have a tough time thinking and so I watch a lot of TV. I have gained 65lbs., and weigh what I weighed before the surgery. I have fluctuations in my cortisol. I have had to treat myself with steroids on some days, with symptoms of severe nausea and headaches. On other days I take cortisol lowering supplements that the doctor recommended. I am taking more because he only had me take two at night and it wasn't helping. After trying hard to lose weight for several months, I have only lost 5ibs. I had been steadily gaining  weight for the 4 years, even after going on a 1200-1500 cal. Diet. 

0 likes, 3 replies

3 Replies

  • dambudzo
    dambudzo naandy91764

    Posted

    i suggest that you go onto the website of the pituitary foundation. they have details of a nurse helpline. She is very kind and she would be able to advise you further eg how to manage symptoms, what your next steps should be etc.

    best wishes. 

  • deb3313
    deb3313 naandy91764

    Posted

    I had my Pituitary gland removed last march and im still having problems and the doctors havnt got a clue what to do ! I found this web site pretty helpful for advise and support smile    http://cushings.invisionzone.com

    Check it out.

  • lorraine30848
    lorraine30848 naandy91764

    Posted

    Hi Naandy,I know excactly how you feel....I've been feeling like sh*t for 5 years now,the muscle weakness,fatigue,gained 40 lbs.,hump back,fat red face and wird bruising ect...All the signs of cushings,I kepted going to the docs and he sent me to a g.i. doc went through testing,and I was told I had ulcerative colitis which I don't have then I was told it was gluten,dairy,my drinking vodka.Then fianally in April 2014 my eye sight went in my right eye,come to find out i had a huge tumour in my  putitary gland.I went to Boston and had 90% of it removed and the week after I felt amazing then crashed again.So now I have to all that testing again for cortisol levels,my last saliva came back elevated fianally so now I'm having that dextro somthing test Monday and hope it comes back right....I just want to just give up and the thing is no one really understands how aweful i feel.I have lost 35 lbs since surgery though but I just want to feel good!Lorraine
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