What does cortisol withdrawal after BLA feel like?

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i am scheduled for my surgery Feb. 1 and preparing for the aftermath of how it will feel. Everyone's experience is so different. How much time off work, exhaustion levels, nausea, headaches, any feedback is welcomed. 

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  • Posted

    Hi Shianne, Sorry I wont be of much help as I still have my adrenal glands smile. However i have done a lot of reading and chatting to other cushies who have had adrenalectomies. As you said everyones experience is different. But the general consensus has been that the recovery wasnt that bad. Most were out of hospital by day 3 post op. The range of time off varied from a couple of weeks to months, so a bit hard to say. My own personal story post pituitary surgery, took me a good 13 months post surgery to get back to work on restricted duties. I have been back at work for 8 months and i am doing 33 of my normal 38 hrs. So hopefully will be back to normal early in the new year.

    The best advise i can give you is to listen to your body. If you need to rest then rest. The good thing about laparoscopic surgery is it does tend to have a shorter recovery period than the old open surgery smile

    Good luck and keep us informed

    Deb

     

  • Posted

    Hi Shianne,

    I had Cushing's Disease and had a pituitary tumor removed in 2003.  I was very ill and took off work three months before surgery.  I had very severe symptoms.....diabetes was really bad and I was very weak.

    I was able to go back to work three months after surgery.  I was still very, very sore and not feeling great...but my endocrinologist thought it would be good for me to get back to work.

    i weaned off the prednisone quite aggressively and my pituitary gland started to work on its own and fully within 2 months post-op.

    After surgery, my worst complaints were severe nausea and extreme muscle soreness and stiffness.  My body was going through withdrawal from the incredibly high levels of cortisol that my I had for so long.

    i also had tachardyia of my heart for a couple of months after surgery.  My resting heart rate was very high.

    it took about a year and a lot of Aleve before the sore, stiff muscles started to improve.  My diabetes and high blood pressure went away fairly quickly.

    its been over 12 years now and I am in complete recovery.  

    The disease certainly took a toll on my whole body....but I am feeling a million times better now.  The Cushing's Disease really knocked me down very hard.  I never, ever thought I would feel normal again.  But, I do feel normal now and I get MRI's regularly and do all the testing fairly regularly to make sure I don't have a recurrence. 

    Everyone is different when it comes to recovery. Listen to your body and take care of yourself. I was in my mid 30's when diagnosed and must have had the disease 10 years before being diagnosed.

    i wish you much success and a full recovery after your surgery. 

    There is a very good chance that you will rid yourself of this horrendous disease and start to feel much better.

    I am extremely blessed that My Cushing's is gone now. Hang in there and be patient....life can be normal again for you! 

    If you have any specific questions, just let me know.

    keep us posted on your progress.

    thinking of you and prayers are sent your way for a successful recovery.

    karen smile

    • Posted

      Hi Karen. I know it's been awhile but your post interest me. You said you suffered aches and pains. Mine started at 3 mo post op and Im now 5 mo post op. Body aches are very bad now that Im down to 5mg daily of Cortef. I think I'll ride out on 5mg until the pain reduces some since it so bad. I walk like Im 100 and sleeping is painful since my entire body aches. Aleve helps some. My question is did this all go away at 2 mo when your pituitary worked?

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