I’m titrating my hydrocortisone but feel lousy. Need feedback from others

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Had pituitary adenoma removed Feb 9th.  Cortisol level day after surgery was 1.6.  Started on 20 mg hydrocortisone am & 10 mg pm.  March 1 started decreasing by 5 mg every week.  Just completing 15& 5 and will start 10 & 5 tomorrow. How did others do during titration?

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6 Replies

  • Posted

    Seems really fast. How are you feeling? I weaned in 8 months. Only cut my dose 2.5mg each time. Would wait 2 or 3 weeks to see how I was feeling and cut again. Slow and steady and always listening to my body. Never had a crisis.
    • Posted

      Yes it does seem soon as well as fast.  I have a cortisol draw Monday and am sure it will be low.  Very weak legs and absolutely no stamina which is pretty much how I felt before surgery 
  • Posted

    Hi I would agree with the others.  The titration has to be slow.  Your body has been living with so much Cortisol that it needs to adjust slowly.  I took several months and now 5 years on still have to take 10/5/5/ a day probably for a long time.  Others come off it altogehter as the other replies have said.  Be patient you are on the road to being the old you again!
  • Posted

    I basically turn into a zombie & become very dizzy, nauseous & faint when my levels drop or when I miss a dose. I'm too far gone to notice this so my family generally tells me because it becomes very obvious and I stop talking. I started at 20 & 20mg because my cortisol levels before surgery were 1742 & my case was considered severe. I'm now down to 5mg & 5mg and doing okay. I can't do some of the things I could before on the higher doses. I used to be able to run, even after surgery but now that's impossible. Your case sounds like a VERY fast titration. My levels only change every 6 weeks at minimum. If your body can't tolerate this pace that's okay, scale it back if you're feeling really lousy & ask your doctor about it. I know I have permission to take extra if I have an 'episode'.

    • Posted

      From what I understand there is what is known as the "sink bed rule" whereby if you feel lousy enough to just want to go to bed you may take extra Hydrocortisone.  I do especially when I am going for an op or a dental procedure.  You would have to check with your Endo.  I am still on 10/5/5.  If you have these episodes there is a lady on the forum called Cyclic Cushings.  I hope she will respond as she may be able to help you.

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