Just stopping the steroids....

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I was diagnosed with adrenal insufficiency bc of multiple cortisol levels < 1. After a long, and subsequent hospital stays, my MD has me on hydrocortisone 5mg bid, although my ACTH tests are still abnormal. I don't like the steroids, whether it's prednisone or hydrocortisone. It's not a large dose anyway... Could I just stop taking them?

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  • Posted

    Long hospital stays, multiple low cortisol levels, abnormal ACTH , I would imagine you don't feel too well? Why would you want to stop taking a medication that 1. Would make you feel better and 2. Probably save your life, as if not take this medication an Addison's crisis you could well be heading for? You are one of the lucky ones who has had a diagnosis and medicated. Read this forum..... Sooooo many poor people feeling desperately ill and literally dying for a diagnosis. Sorry to sound harsh but your doctor /endocrinologist knows what is best. Don't stop taking the steroids abruptly whatever you do!!

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  • Posted

    i was diagnosed with adrenal insufficiency too. i was taking the steroids, and like you, got very tired of them. i one just decided to stop taking them and it worked out pretty well for me, i dont take them anymore and feel perfectly fine. but i dont recommend this because i could have just as easily gone into adrenal crisis. just stay on the steriods, its whats best for you.
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    • Posted

      Hi I am baffled? You we're diagnosed with adrenal insufficiency and given steroids. I assume you felt pretty awful before medicated. Why were you fed up of taking them? The are only replacing what you are depleted it? And yes if your diagnosis is correct you are a walking adrenal crisis two steps away from an A&E department!!

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  • Posted

    Hi!

    Under no circumstances should you stop taking the steroids as you are replacing those which your system is not producing. In full Addison's - if it were to develop - you would need to replace a higher levei of steroids. If you were to get a serious infection like the flu you risk being in trouble.

    You say you don't like steroids - why is that?? They are easily taken - in my case with a cup of tea, they don't taste badly, though they might give you a bit of indigestion if taken late in the evening. You may have read of problems with steroids - yes, there are plenty but they happen, by & large, to people who have a normal Adrenal function. From what you say, yours is not working fully.

    Alternatively your dose might need adjusting now, as it is difficult be be exactly precise at the start of treatment.

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