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Advice on recovering from cushings.

Posted , 5 users are following.

cmugs123
cmugs123

Hello, I was diagnosed with cushings in November and had my Adreanal glands removed on December 11th. For the past 3 months I have been battling the symptoms of cushings and the withdrawal from the cortisal. I started out a 60 mg a day, and worked my way down to 25. I did have a cortisol crisis so I had to go back up to 60, quicly worked my wat back down to 30 mg a day. What I am having the most trouble udnerstanding write now and battling with my husband is why do I have such highs and lows still? There are days that I can't get out of bed, but then others that I am "ok". I have pain all the time. He is trying to tell me that this is all mental. Is it?

0 likes, 11 replies

11 Replies

  • jazzyanne
    jazzyanne cmugs123

    Posted

    following the post x
    • jazzyanne
      jazzyanne cmugs123

      Posted

      it means am interested to see if anyone comments on the post,  as i am interested but i will only see notifications if i comment x
  • carolyn80777
    carolyn80777 cmugs123

    Posted

    I don't think it's mental. It takes the body and mind a long time to readjust and recover from the effects of raised cortisol.It's early days for you, as your op was only 3 months ago.I don't know why you have such alarming swings, perhaps due to having both glands removed?You will have to contact your consultant and if he/she doesn't know get them to discuss it with other Endocrinologists.Take it easy, plenty of rest.xx
    • cmugs123
      cmugs123 carolyn80777

      Posted

      Thank you for taking the time to respond. I am dong my best to take it easy and not worry. 
  • vicky61456
    vicky61456 cmugs123

    Posted

    Hi,  I am not really contributing to the forum now but couldn't let you think it was anything mental wise.  Your body has had a very very rough time and you are now experiencing the withdrawal etc.  You will have highs and lows for some time yet but don't worry.  If you want to rest do so, if you feel okay do what you can.  Your hubby will have to understand that the op was not an instant cure.  Take care.  Vicky
  • bap84000
    bap84000 cmugs123

    Posted

    What medication is this dosage? Prednisone or hydrocortisone? My experience with Cushings was fairly severe bipolar symptoms. My case was severe and it took me 1 year to taper down. If you are on 25mg of hydrocortisone the lower you get the better you tend to feel IMO. I am an adult male, 6'4" and i figured that 12mg was "replacement" dosage for me. I got a virus and had adrenal crisis rushed to hospital and was given 150mg of hyrdocortisone and tapered back down. High dosages of steroid isn't good, to the lower you can get the better you feel, (IMO). 
    • cmugs123
      cmugs123 bap84000

      Posted

      I am on hydrochrtisone. I am trying to taper down to I believe 10. Currently we are cutting back 5 every two weeks. I did have a crisis on Feb 25th and they put me 100 every 8 hours. I did have a set back and so I left the hospital back up to 60. I was able to work myself back down pretty quickly (about 3 weeks). 
  • vicky61456
    vicky61456 cmugs123

    Posted

    The usual dosage for life is 20mg a day.  I take 10 in the morning and then 5 at lunch and 5 at tea.  It does vary but that is presumed to be the ideal dose.
    • cmugs123
      cmugs123 vicky61456

      Posted

      Thank you for responding. My dr said 10?, but again I really do not think that any of them have a had a cushing patient before. I am just anxious to get down to a dose where I can lose weight, exercise and not be in pain anymore. Hope and praying that this is possible. 
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