What med(s) do you take for Addison's/low cortisol?

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I have been tested twice now for Addison's and this second time the results were more clear. My endocrinologist is away now for the next week so I can't see her until next Wednesday to discuss meds. What do you take? Is prednisone the only answer? Are there other types of steroids or other meds or supplements that have worked for you? Do you also take a DHEA supplement? (My DHEA was <15.0 mcg/dL with a standard range of 30+; my base cortisol was 4.4 with a standard range of 6+).

Thanks for any insight and experience!

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  • Posted

    Well

    I take Fludrocortisone (you may have a different name for it) and Hydrocortisone. the former is to regulate your blood pressure, the latter for general metabolism, but also needed in much larger quantities when you have a bad virus, such as flu. I take 30mgs of Hydrocortison daily, but recently spent a day in hospital fighting a bad virus and had 600mgs by injection!! The Fludrocortisone is very powerful and one only take a small amount. I make executive decisions about how much I take and today and for now I am on 25 microgrammes, a quarter of a pill.

    Have you had the classic symptoms of low blood pressure and dark skin on the upper part of your body. Had you been diagnosed by any inability to fight a bad virus, that would be very bad luck indeed. In fact, you would probably not be here!

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  • Posted

    Thanks Patlon. I was kind of diagnosed by accident, I was having some female issues and my GYN put in a bunch of hormone tests to rule out PCOS. Turned out I had the opposite issue - not too much adrenal function, but too little. I don't have the dark skin but I do have relatively low blood pressure (80-90/50-60) but doctors always said that was a good thing. Not a good thing for me, though, when I am near passing out every time I stand up and have moments of weakness/lightheadedness/flushed etc most mornings in the late morning if I don't have enough of the right nutrients in the morning.

    But I did have a terrible winter last year, I was sick from November through April with various "colds," sinus infections, bronchitis and pneumonia. Every time someone sneezed near me I ended up in hospital. The pieces are beginning to come together.

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    • Posted

      When I had my first Addisonian crisis in the early 90s and was rushed in to hospital, my blood pressure was 80/50. I could not even sit upright in a chair. The blood pressure you cite is not normal. Looks like you had a lucky escape with your illnesses. If only they had given you boosts of Hydrocortisone. Of course, once Addisons is diagnosed and one gets such an virus, the first thing you tell them is that you have Addisons and, at the risk of telling them their job, that you need boosts of Hydrocortisone. In fact, when I had a mild occurrence of my recent bad virus, I just doubled my daily Hydrocortisone intake. The problem is with the bad viruses and whether, say, one would be advised to learn, or you partner or relative to learn, how to inject oneself. I am having an 'interview' in April and will learn more. A bit late in the day as it is the first time since I was diagnosed that the endocronologist sees fit to see me!

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    • Posted

      Wow. Thanks for the info. I wish I could talk to my Endo before next Wed! I'm traveling this weekend too and I'm a little scared. This is probably a silly question but should I pack some of the prednisone that I was on last summer (for swelling in my hands that they thought was RA, but was not; they aren't sure what it was) in case I start to feel sick? I asked my GP if she can do anything for me about this before my endo comes back and she said she can't. Probably wise of her to say so though.

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    • Posted

      If you don't have the skin darkening, you may have secondary adrenal insuffciency, and not Addison's.  Sounds like you have orthostatic hypotension, which is commone with SAI.  Do you by any chance have trouble with low blood sugar?

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    • Posted

      Christine yes, I think my issues in the late morning with near passing out/flushed etc are a low blood sugar thing; I have had a lot of blood work done in the last year or so, and one time my blood sugar was a bit low but the doctor didn't see fit to pursue it. I suppose I could ask about that again. I feel like I'm pushing for all these tests and they probably already think I'm a hypochondriac... Also my Endocrinologist looked at the results (above in my original post) and said it's still borderline, not full-blown Addison's, so she doesn't want to do any treatment, just re-test (ACTH stim test - for the 3rd time!) in April.

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  • Posted

    I was diagnosed with secondary adrenal insuffciency, not Addison's, but my DHEA was low, my testosterone was low, and my SHBG was high.  I was put on hydrocortisone, which is closest to what your body naturally makes, so, no prednisone is not the only choice.  Hydrocortisone is the preferred choice, but I am in the US.  I took DHEA for a while, and I used a testosterone cream, also.  I am not presently being treated, because of differenr doctros opinions.  I know I have a lot of the symptoms, but can't get anyone to test me again.  I was diagnosed with an ACTH stimulation test.

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