Pituitary surgery recovery
Hi everyone,
I would really appreciate some advice or hearing from people who may have experienced something similar.
I originally had no symptoms at all, but my blood work was extremely indicative of Cushing’s disease. A pituitary adenoma was found and surgically removed.
However, after surgery, my blood values initially did not change at all. Then, around 4 months later, things suddenly shifted. My hormone levels started dropping significantly, and my cortisol eventually fell into the normal range very quickly. My doctors suspected possible glucocorticoid withdrawal syndrome / adrenal insufficiency-like symptoms, and I was started on hydrocortisone (50 mg/day).
Since then, my symptoms have been fluctuating a lot and I honestly feel very confused about whether I am under-replaced, over-replaced, or dealing with something more complex related to pituitary recovery.
Current symptoms include:
- Severe insomnia
- Resting heart rate often over 100
- Sweating / hot and cold flashes
- Dizziness and circulatory problems
- Diarrhea
- Severe fatigue and weakness
- Muscle pain (especially back and legs)
- Tingling / numbness in hands and feet
- Nausea
- Anxiety, inner restlessness and depressive feelings
- Episodes of feeling freezing cold and unable to get out of bed
At higher hydrocortisone doses I felt extremely overstimulated (racing heart, sweating, hunger, insomnia), but when reducing the dose I sometimes crash into severe exhaustion, coldness and weakness again.
Has anyone experienced something similar after pituitary surgery or during glucocorticoid withdrawal/recovery? How long did it take until things stabilized for you? And did anyone have similar fluctuations between apparent over- and underreplacement symptoms? Or has anyone had such a delayed drop of blood values after the surgery ? I don’t really know what to do anymore and am feeling increasingly desperate….
Any advice or experiences would really mean a lot right now