New to the group. Just a few questions.

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March of 3/2017 had my left adrenal gland removed, tumor producing excessive Cortisol benign, was diagnosed with Cushings now Adrenal Insufficiency. My right gland is sleeping and I am currently on 25 mg of hydrocortisone. Cushing was horrible and i am pretty sure it started somewhere around 2005, when I had half of my thyroid removed, then 2015 the other half removed, down hill ever since. Currently on 99 mg of Armour. I feel pretty good I have Adrenal Insufficiency and other than just having a crappy day every now and then I really can’t complain. My Cortex when removed was half the thickness of a normal one. I am terrified of an Adrenal Crisis because of everything I have read, I never take a stress dose because I am afraid that it will delay the healing of the other one. Plus I’m not sure what that means, my Endo isn’t very helpful or I am expecting to much not sure which. I’m not loosing anymore weight or gaining, lost 50 pound before and after the operation. Is there a chance that it will never wake up, and the stories that I have read about a Crisis just seem to affect certain people. I get light headed, low BP, from time to time, sodium doesn’t seem to be an issue how can part of it work and the other part not work, and how long does it take to wake up. I’ll thank you in advance.

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  • Posted

    So the fact that sodium is fine is very good. 

    This hopefully means your aldosterone is fine and this is just a cortisol issue.

    If it is just a cortisol issue then its likely because the ZF is underactive following the years of Cushings. It will hopefully adapt and increase production, from ACTH stimulation.

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  • Posted

    Do bear in mind that if you had perfectly functioning adrenal glands, they would boost your cortisol levels naturally in response to increased physiological stress. Because you don't you have to do this yourself - indeed if you don't do so, you significantly increase the risk of an adrenal crisis. Unless your endo has specifically told you otherwise, I really can't see why this would delay your recovery.

    You say you are scared of having a crisis well then you need to do all you can to avoid having one - so get your retaliation in first!

    Sooner or later you will have a crisis but it doesn't have to mean ending up in A&E. Make sure your friends/relatives/colleagues are briefed on what to expect and ideally know what to do. Early intervention means that you can get up and get on with your day. Have you made contact with the Addison's Society?

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    • Posted

      Wow, physiological stress I didn't realize that was even a thing. It does make sense. I go back the the endro next week guess it would be a good idea to have that discussion.  Your reply was very helpful I do have a few stressors going on in my life nothing more than everyday stuff. Thanks just nice to talk to someone without the deer in the headlights kind of look.

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    • Posted

      I'm happy to help. When it was all new to me, I got advice from the old lags so now it's my turn.

      "Physiological stress" just means illness and also trauma - like a traffic accident or slicing your finger instead of the onion! i.e., not how most people use the word "stress" - a hard day at the office :-) 

      So ask about "sick day rules", emergency hydrocortisone, etc. Also see the Addisons association web site.

      PS, I hope you worked out that "Because you don't you have to do this yourself " is missing a comma after "don't". (I should have written "Because you don't [have natural cortisol], you have to do this [take replacement cortisone] yourself "wink.

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