I had Transsphenoidal pituitary surgery in January 2017 at the Mayo Clinic in Rochester MN. I have had Cushings Disease for 15 years. My cortisol withdrawal has been very difficult. 8 months out I am just at 25mg of hydrocortisone. I started at 40mg. I have just started to decrease to 22.5mg. the goal is to get to 15mg in order to stress my pituitary to hopefully wake it up and work on its own. My problem is the symptoms that I deal with everyday. I try pain meds for my joint pain, doesn’t do much, try to work out for relief but also does not seem to help. My flu like symptoms also are very hard to handle. The nausea, feeling like I have a fever, cold all the time, light headed. I also have just been diagnosed with depression.I am maintaining working but struggle through. I am just getting weaker as I continue to lower my hydrocortisone. Anyone have any suggestions on how to make it through this journey. It looks like I have a good year more of struggle ahead of me. Thanks, Beth
Hi Beth, I apologize for the delay in posting your request for suggestions.
My surgeries were never successful so I never experienced the wean off necessary HC after a successful surgery. I do know that most doctors want to bring you down as quickly but safely as possible, and it feels terrible. I was “lucky” in that my “job” was as a stay-at-home-mom when I got Cushing’s, went through treatments, and struggled out the other side. I don’t know what I would have done if I had not had the ability to let my exhausted body rest after all that. I hope you understand how amazing it is that you endured more than a decade of symptoms and have maintained your work! It’s also a relief to hear that you identified the symptoms of depression and sought help for that. I hope you get answers and healing soon.
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