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Feeling horrible after adrenal surgery

Posted , 5 users are following.

irene64333
irene64333

5 days after surgery I feel horrible.  Very weak, nauseous, headache.  Does anybody know if it can be side effects  from hydrocortisone which I am on 15/10  a day. Maybe it's too low dose for me . I thought I would feel better but I don't.  I tried to call endo.  She didn't even call back. If anyone has this experience please respond, I feel desperate. 

0 likes, 25 replies

25 Replies

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  • courtnay26
    courtnay26 irene64333

    Posted

    Irene

    There is always a possibility you

    Are taking too much hydrocortisome

    So hopefully the doctor can help you

    Figure out ypur symptoms

  • courtnay26
    courtnay26 irene64333

    Posted

    Just because I dont take steroids

    I am not saying to lower or not take steroids

    I have read just like Monsie

    To not go over 20 mg

    Just take time to recover

    and know we want you to get better

  • cool_catalan
    cool_catalan irene64333

    Posted

    Irene, go to hospital. It is better for you than seeing the endocrinologist. They will give you blood tests, in your case perhaps a  MRI or ultrasound, they will check you. Do wait...

    monsie

  • irene64333
    irene64333

    Posted

    Here is the thing.  The doctor made a mistake.  They decreased the initial dosage of hydrocortisone 100mg, starting Thursday . They were tapering it everyday.  I was instructed to take 50 on Friday, 40 on Suturday, and 25 mg on Sunday, and keep it that way. Of course I felt awful.  They called me today and told me to go on 50 mg a day because I was close to crises.  BP dropped to 94 over 70.  Hope 50 will be enough for me.  I read that after surgery patients should be on 80 or 60 for 10 to 14 days . Tapering should be done slowly and carefully. I wish someone who had adrenal removal shares the experience of how much hydrocortisone the were sent home with. Thanks for reading 
  • irene64333
    irene64333

    Posted

    . Tapering of Cortisone following either bilateral adrenalectomy or a single Cortisol secreting adrenal tumor, especially when it is successful, results in profound hypothalamic pituitary adrenal suppression. The reawakening of this axis may take six to nine months, sometimes longer. In the interim, patients need to be replaced with Glucocorticoid therapy. There is an additional confounding problem and that is when you have Cushing’s, your body gets used to higher doses of Glucocorticoids coids and these doses need to be continued above replacement doses immediately after surgery and then slowly tapered. Right after surgery we replace with Hydrocortisone 60 to 80 mg a day for two weeks and start a taper, diminishing 10 to 20 mg every 10 to 14 days, until you are down to physiologic, which is in the neighborhood of 15 to 20 mg per day. This information is according to csrf.net 

  • cool_catalan
    cool_catalan irene64333

    Posted

    I am lost for words...  I do not know what to say, it is very difficult for you. I can just imagine how you must have felt... I know how bad I feel and my situation is not comparable to yours. How are you feeling now that you know all this?
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