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  • Am I the only one?

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    Old 10-02-2016, 04:18 PM   #1
    Houstongirl
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    Red face Am I the only one?

    I have secondary adrenal insufficiency because of two pituitary re sections to remove a tumor. I was initially diagnosed with cushings disease prior to the operations.

    Here is my problem: I literally have adrenal insufficiency that comes and goes. Crazy, I know. I can rock along feeling fine for 3 months and then "bam" I end up in the hospital because of an adrenal crisis.

    So I get back on hydrocortisone and I am ok for a time. Then all of sudden I feel like I have Cushings disease again because of the steroid. It does not matter if I take a low dose of hydrocortisone.....I feel like I need to wean myself off. When I get off hydrocortisone I feel awesome. I may go another 6 months and feel fine without hydrocortisone. The cycle continues over and over.

    I have failed 3 ACTH stimulation tests and passed 2 tests. My doctor thinks I am manipulating my hydrocortisone before the tests, but I would swear on a stack of bibles that I follow her directions to the tee.

    My doctor says there is no such thing as adrenal insufficiency that comes and goes. My husband believes me because he sees the up and downs.

    So....anybody out there like me? Maybe I am an anomaly, but this is driving me crazy.

     
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    Old 01-18-2017, 10:42 AM   #2
    Dragonfly Wings
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    Re: Am I the only one?

    Hey there how are you going now? Is there any way what so ever to keep you on a continual low dosage of steriods to try and stop the blow outs which I can only assume can be/are extremely dangerous and detrimental to your quality of life.

    It is a little unusual to be up and down but I would assume maybe it's due to the on going cycle of being on and off medication all the time?

    I'd be interested to know if you have any further answers from your doctors

    All the best!
    K.

     
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    Old 01-30-2017, 07:45 PM   #3
    Diefen
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    Re: Am I the only one?

    Why would anyone manipulate their adrenal tests, and why do it only some of the time? Tell your doctor you don't do this, and if she says it again, get another doctor.

    Last edited by Diefen; 02-08-2017 at 02:35 PM.

     
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    Old 07-13-2017, 07:59 AM   #4
    Babsspart
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    Re: Am I the only one?

    I have similar responses but primary adrenal w straight addisons...I can talk but really believe in staying as low dose meds even w swings. ..I'm just coming out of a crisis myself

     
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    Old 07-14-2017, 04:56 AM   #5
    Houstongirl
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    Re: Am I the only one?

    Right now I am on about 6.5 mg of hydrocortisone. I had a ton of tests recently because they were concerned about another issue. Yes, I am staying on low dose steroids and have not had another adrenal crisis. My stamina is much better too. I guess the low dose is what I needed. My doctor tells me I am an unusual case but I have read some recent studies where low dose is better over the long term. I really think I need to wean down to 5 mg per day but I have agreed with my doctor to reduce by 1 gram in a month.

     
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