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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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  • rachel_36939
    rachel_36939 irene64333

    Posted

    Yes I did too felt so bad head was banging it took about two weeks to feel better I think it’s normal but check with surgeon and Endo doc. X
    • irene64333
      irene64333 rachel_36939

      Posted

      I will see surgeon on Thursday.  They probablywill tell me if it's normal to feel this way. Blood pressure dropped to 115 over 90, which is good I guess.  Thank you Rachel. 

  • cool_catalan
    cool_catalan irene64333

    Posted

    Dear  Irene

    Look, you can tell you that taking  up to 20 mg/day is within the physiological dose. Perhaps it is too low. Try to phone the endocrinologist in Easter things have slowed down very much. It is crazy. I have not had  the  surgery you have had. I can only reassure you that 20 mg is not dangerous. Whether it is enough or not... Call the endocrinologist again.

    Thinking of you

    monsie

    • irene64333
      irene64333 cool_catalan

      Posted

      Hello there.  I take15 in the morning and 10 at night.  I think its the dose they usually prescribe.  Maybe my body reacts to lower dose of cortisol.  I have heard withdrawal of cortisol is hard. I have to talk to endocrinologist.  Thank you, monsie.
    • cool_catalan
      cool_catalan irene64333

      Posted

      yes, how could have forgotten about the Emergency department in the Hospital? But I did. Go to them. I have done it for me and for my partner. They are very good... at least you will have some tests. Important new information about your health. Asking for second opinions has proved to be a waste of time, but Emergency Department is not a waste of time.
  • cool_catalan
    cool_catalan irene64333

    Posted

    Look 15 in the morning and 10 at night is 5 more than taking 20 which is the safe dosage. Yes, it is difficult to withdraw from hc, for that reason, the less you take the better; and the shortest  period of time... a few months if that is possible in your case. Make a list of the things to ask the doctor. You know what it is when one goes there, it is difficult to remember what to say because they throw new things at you or do not say enough... be relaxed but well prepared it is a very important visit.
  • courtnay26
    courtnay26 irene64333

    Posted

    I wish you felt better Irene

    Don't hesitate to go to emerge if you have to

    I wouldn't up my hydrocortisone dose

    If anything , you want to eventually taper off

    Your hydrocortisone gradually

    When you start to feel nauseous and have a headache

    I would go to the hospital

    Explain you just had surgery

    • irene64333
      irene64333 courtnay26

      Posted

      Yes, that's exactly what I read yesterday.  It's probably withdrawal reaction, my only concern is blood pressure.  Suddenly drop can be a sign of crisis. But anyway I am going to see surgeon tomorrow.  Hopefully they will have explanation for me. Thank you for your time. And definitely I'm not going to up my dose,though I felt like doing it last night  but didn't.  

  • Roddy999
    Roddy999 irene64333

    Posted

    1. After any kind of trauma [and an operation is a trauma], working adrenals would pump out extra cortisol (= "organic" hydrocortisone). Cortisol is a natural steroid and anti-inflamatory. In an average day, an averagely well person produces 20 mg a day, with demand regulated by the pituitary (and hypothalmus). After trauma, that would shoot up.

    2. If you have "adrenal insufficiency" (meaning your adrenals aren't doing that [item 1]), then the docs have to compensate by giving you the cortisol/cortisone that you aren't making - otherwise you get an "adrenal crisis" and [if you still don't get HC] you die. 100mg/day is quite normal pre- and post-op, reducing to maintenance dose of 20mg/day as and when you feel better. Thereafter, double dose when unwell is mandatory.  This is just mimicing what would have happened naturally if you didn't have adrenal disease and were eg getting your appendix out.

    3. "Weaning people of hydrocortisone" does not apply to people with primary or secondary Addison's.

    4. Steroids are natural! A body produces lots of them for different tasks. Abuse [taking them when there is no  deficiency (or no longer) - e.g., body builders and testosterone] is a big problem.

    So relax and give it time. It seems to me more likely that you aren't getting enough HC than too much!

    • courtnay26
      courtnay26 Roddy999

      Posted

      Roddy

      Are you a healthcare professional?

      Going over 20 mg of hydrocortisone

      Is not recommended., unless maybe

      During an adrenal crisis

    • cool_catalan
      cool_catalan Roddy999

      Posted

      Abuse when there is no  deficiency (or no longer). That brings me to the following question: In my case, I have been taking 30 mg/day of hc for two and a half years. Would that  have had damaged the (I forgot how it is called now) say the ACTH, pituitary, axis, sorry I cannot explain it better, I hope you can understand what I mean. Doctors tell me that my cortisol is now low because I have been taking hc for so long and above 20 mg/day at times (up and down all the time because I was not feeling well).  I have been suffering from untreated/undiagnosed hypothyroidism for years and many of my symptoms were due to that, but I thought it was due to the adrenals. I had a saliva test in March 2015 showing very low levels of cortisol. In June 2015 I was diagnosed Addison's disease in a hospital in Australia where I live. Later on the doctors told me I had no Addison's disease (sometimes with the short Stim test, other times just 'by looking at you I can tell you do not have Addison's disease'. I am weaning of hc now. I am on 14mg/day. I am very interested in what you have to say.

    • courtnay26
      courtnay26 irene64333

      Posted

      Just a thought Irene

      You could maybe try to drink caffenated drinks

      Like coffee or tea to see if it helps your cortisol levels

    • irene64333
      irene64333 courtnay26

      Posted

      Can coffee affect cortisol level??? I drink one big cup in the morning.  But since surgery my systolic BP is 110 which is low for me.  It used to be 150 before surgery.  If  25 mg of hydrocortisone is too high for me  my BP would be higher if I'm not wrong.  So I think I have withdrawal problem. I have Cushing, my cortisol level was high.  Now when they brought me to normal dosage , I think I have trouble adjusting it

    • courtnay26
      courtnay26 irene64333

      Posted

      110 seems like a good bp level

      Like 110 over 80

      Adrenals is complicated and I am not an expert

      Or know enough

      Coffee raises cortisol which would mean

      That you might not need as much hydrocortisone

      The key is not to feel nauseous , but I do not take them and I possibly have

      Secondary adrenal insufficiency

      If you have primary adeenal insufficiency

      Hydrocortisone is more crucial to have

      Hopefully the endo or your doctor will help you

    • courtnay26
      courtnay26 irene64333

      Posted

      I heard cortisol withdrawal can be difficult

      But since you just had surgery

      Your adrenals have to recover

      I just dont want you to overdose on

      Hydrocortisone since your adrenals

      May already be making enough cortisol

    • irene64333
      irene64333 Roddy999

      Posted

      Hello, you were right.  They just double the dose. If it doesn't work they will increase it again.  They made a mistake.  It was too soon for me to be on 25  (((

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