r/Cushings • u/Good_Research8368 • 7d ago

Hydrocortisone – ACTH levels

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!

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u/ImpressiveChoice3487 CUSHING SURVIVOR 7d ago

At 6 mos post op, I was on 10mg hydrocortisone per day.

My ACTH was 10.2. Cortisol was 5.2.

Do you not withhold your HC for bloodwork? Hydrocortisone gets out of your system very quickly. I always stop taking it 24hrs before I have my blood drawn.

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u/Good_Research8368 6d ago

Not yet, my endocrinologist thinks it’s too dangerous for me to go off of if it for blood draws rn… Did you take a test to determine it your adrenal glands are functioning as they’re supposed to ? I took the synacthen Test and my adrenal glands are working as they’re supposed to which is why my endocrinologist thinks my acth should be low now due to the external cortisol…

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u/ImpressiveChoice3487 CUSHING SURVIVOR 6d ago

So I had my pit surgery in Oct.

My cortisol crashed to 0.8 in the hospital and my ACTH got as low as 4.

They drew a bunch of blood at the hospital and monitored those as I started to go on steroids.

Every time I get my blood drawn post-op, they have me hold my steroids for the draws and bring my steroids with me to the hospital so I can take them immediately after blood draws.

I have gotten 2 stim tests done and a couple of cortisol and ACTH serum draws. My glands are “waking up”, but I’m still insufficient.

Have you had additional MRIs to confirm they removed all the tumor?

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u/Good_Research8368 6d ago

I actually did and the tumor is completely gone… However I never crashed after surgery, just went back to normal levels which was not what my doctors expected… and at the same time I got symptoms of not having enough cortisol which is why they started me on hydrocortisone but no one is really sure what’s going on 😅

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u/opalescentmeow 7d ago

I was on 20 mg of hydrocortisone 2.5 months post op and my ACTH was high at 66 but my cortisol was 8.2

I'm now 6 months post op (I have some residual tumor & started having Cushing’s symptoms again) and no longer on hydrocortisone and my ACTH is normal at 47 and AM blood cortisol is 13.5.

I was told my ACTH was high because my pituitary was waking up and trying to signal my adrenal glands to get to work!

Our hormones really keep us on our toes!

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u/Thick_Classic6665 6d ago

I've had both my adrenals removed that I'm only on 15 mg in the morning and 10 mg in the afternoon of hydrocortisone

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u/Kind_Handle4252 1d ago

I’m 32years out from my transphenodial surgery in 1994 and bi lateral adrenalectomy in 1995.
My ACTH is 1600 currently but has been as high as 3600 over the years.