Post Adrenalectomy

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I had a benign non producing adrenal tumor removed 5 months ago.  My endocrinologist has tested blood cortisol levels twice since surgery and believes remaining gland is working properly.  I have had dry skin on my face since surgery that I cannot seem to balance out.  I also have joint and muscle pain, fatigue, muscle twitches, and have started retaining water.  Any advice would be greatly appreciated.

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  • Posted

    Are you retaining water? or is it putting weight on? Can you tell me? I'd not know the difference between one and the other. The symptoms you mention seem to fit into the hypothyroidism list except for the muscle twitches. Retaining water, do you mean swollen ankles? That is also a typical hypothyroidism symptom. (I've having that problem from 2015). Which kind of cortisol tests have you had? have you seen the results? Where they blood tests? 3 times/day?  I am trying to help only, not to be difficult... Are you taking hydrocortisone of any other type of steroids? Because if you are not taking any steroids you can then have a saliva test (probably you'll have to pay). They are not expensive and they are very accurate; they check the cortisol 4 times a day. I wish I could have them now, but I have been taking hc since 2015. I hope my information is helping you...

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    • Posted

      I think it is both.  I have continued to gain weight since the surgery.  I think some days I am also retaining water.  My fingers and ankles swell usually in the morning and return to normal a few hours later.  I have had 2 8AM blood cortisol tests with results 10-13.6 mcg/dl.  My TSH and T4 also came back with in normal range.  I have not been on any steroids.
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  • Posted

    Hello, I had the same surgery like a month ago. I feel terrible.  How did you feel ?  If your other adrenal gland is working  , you  are probably off steroids by this time. What do you mean by  retaining water? My fingers are swollen I blame hydrocortisone which I'm on high dosage 40 mg a day. I have all the rest symptoms you mentioned but I blame withdrawal from cortisol.  I would appreciate if you tell me what was your hydrocortisone dosage right after surgery.  Thank you 

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  • Posted

    Hello, I had the same surgery like a month ago. I feel terrible.  How did you feel ?  If your other adrenal gland is working  , you  are probably off steroids by this time. What do you mean by  retaining water? My fingers are swollen I blame hydrocortisone which I'm on high dosage 40 mg a day. I have all the rest symptoms you mentioned but I blame withdrawal from cortisol.  I would appreciate if you tell me what was your hydrocortisone dosage right after surgery.  Thank you 

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    • Posted

      I felt great the first month after surgery compared to now.  I was not on any steroids after surgery.  My urine test is the only one that came back with high levels presurgery.  My fingers/ankles swell from time to time and then return to normal.  I have not been able to recognize any diet or activity connection.  Are your doctors giving you any guidelines of when your symptoms will end, or any ideas to alleviate symptoms.
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    • Posted

      Yes, I saw endo today.  She says to stay on 40 mg a day for now and try to taper it in couple weeks.  She says pains are normal due to cortisol withdrawal.  Thanks for response 
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