u/Good_Research8368

Hi everyone,
I have a question for those of you who are also taking hydrocortisone or other steroids.
I’m about six months post pituitary surgery and currently still taking 50 mg of hydrocortisone per day. My endocrinologist told me that my ACTH level is unexpectedly high. It is currently 35 (so around the middle of the normal range), but according to my endocrinologist, ACTH would normally be expected to be much more suppressed while taking this dose of hydrocortisone.
For those of you taking hydrocortisone: What are/were your ACTH levels while on treatment? Has anyone else had normal or relatively high ACTH levels despite taking hydrocortisone? If so, did you ever find out what caused this, and did it have any consequences?
Does anyone know what a non-suppressed ACTH level while taking hydrocortisone might indicate?
Thanks so much for sharing your experiences!

I was diagnosed with Cushing’s disease about a year ago. My lab results were strongly consistent with Cushing’s, and a pituitary adenoma was found. The adenoma was removed in December.
At first, my cortisol levels did not drop after surgery. However, in April they suddenly decreased into the normal range. They were never below the normal range, but they were much lower than during active Cushing’s.
Since then, I have had severe glucocorticoid withdrawal symptoms: extreme fatigue, weakness, muscle soreness, dizziness, fainting episodes, and feeling generally unable to function. I was put on hydrocortisone, but I am still having a very hard time reducing it, even though my own cortisol values are actually normal.
Has anyone experienced something similar?
I am also wondering whether, in cases where the body is producing enough cortisol but still feels as if it lacks cortisol because it was used to much higher levels, other non-hydrocortisone medications could help during tapering. For example, has anyone discussed or tried stimulating medications or wakefulness-promoting medications to manage the severe fatigue and weakness while the body adjusts to lower cortisol levels?
I am not asking about replacing necessary cortisol in adrenal insufficiency, but about whether any supportive medication has helped with glucocorticoid withdrawal symptoms when cortisol levels are technically normal. I would of course discuss this with my endocrinologist, but I would really appreciate hearing about others’ experiences.

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

Hi everyone,
first of all I really appreciate this sub as it has given me hope to believe in an afterlife… However, right now I am having a severe existential crisis and i am super scared there are fully brain-based explanations for all of this… Please let me know what evidence you think there is that shows that the brain-based explanations can’t explain an afterlife/ spirituality/ NDEs (especially the fact that the brain continues to show activity patterns for minutes after assumed death and the release of chemicals prior to death) please also feel free to guide me to older posts discussing this and please be honest if you think brain based explanations are actually plausible and can explain this . I appreciate all kind of evidence I am just so scared right now that there are brain based explanations and there is no afterlife… Also if you have any tips how I can gain personal reassurance (that goes beyond just watching YouTube videos, please let me know!!) thank you so much everyone in advance!!

Hi everyone,
first of all I really appreciate this sub as it has given me hope to believe in an afterlife… However, right now I am having a severe existential crisis and i am super scared there are fully brain-based explanations for all of this… Please let me know what evidence you think there is that clearly shows that the brain-based explanations can’t explain NDEs (especially the fact that the brain continues to show activity patterns for minutes after assumed death and the release of chemicals prior to death) please also feel free to guide me to older posts discussing this and please be honest if you think brain based explanations are actually plausible and can explain this . I appreciate all kind of evidence I am just so scared right now that there are brain based explanations and there is no afterlife… Also if you have any tips how I can gain personal reassurance (that goes beyond just watching YouTube videos, please let me know!!) thank you so much everyone in advance!!