Cushings Disease- cortisol withdrawal?

Posted by whitsue03 @whitsue03, Mar 1 2:48pm

I was diagnosed with Cushings in early 2021 (pituitary adenoma). Before I could have transphenoidal pituitary resection to remove the adenoma, found out I was pregnant. In July 2021, at 18 weeks pregnant, I underwent my first surgery. My cortisol dropped and I experienced adrenal insufficiency 2 weeks post-op. My symptoms subsided and I had a healthy baby girl. Two years later Cushings symptoms returned and labs showed very high cortisol again. I underwent a 2nd pituitary surgery in December 2023. While there was no actual adenoma found, my neurosurgeon removed more suspicious pituitary tissue. Post-op cortisol levels remained high and symptoms continued...along with a plethora of other symptoms that I didn't have before (hypothyroidism, zero estrogen, etc.) After discussing cortisol reducing medications and pituitary radiation, it was determined that a 3rd pituitary surgery was my best option for a cure. I underwent the 3rd pituitary surgery in November 2024. Recovery was absolutely terrible. Cortisol levels remained high for about a month, but I experienced a crash in mid-December. It seems like since then my cortisol levels have fluctuated quite a bit, but I have also been on and off with hydrocortisone. The past 2 times my levels were checked though, with no hydrocortisone, they have been right in the middle of normal range. My question is- has anyone experienced cortisol "withdrawals"? I have been having horrible episodes of racing heart, extreme temperature fluctuations, paralyzing anxiety, feeling like I am literally going to lose consciousness, nausea, headache, body aches, etc. Many of the same symptoms as adrenal insufficiency, but my labs do not show this. I just had my first appointment at Mayo Clinic and met with a wonderful endocrinologist and she mentioned that I might be experiencing cortisol withdrawals (waiting on more lab results to confirm this). But I am just curious if anyone else has had this and what your symptoms were. How did you cope? Do the episodes eventually stop? I think it would even help just to know that there is an end in sight! Any help or advise is greatly appreciated!

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You seem to have a lot going on. Adrenal, pituitary and thyroid gland issues (all part of the endocrine system). I am sorry that you’ve had to endure three pituitary surgeries. It is good that you’ve found a Mayo Endocrinologist. I know this sounds corny, but all problems on earth do eventually pass. The waiting is tough. Hopefully other members who have similar experiences will chime in soon. Congratulations on your little girl.

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Oh I forgot to Welcome you to Mayo Clinic Connect. You will find good compassionate people here.

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@cehunt57

Oh I forgot to Welcome you to Mayo Clinic Connect. You will find good compassionate people here.

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Thank you!

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@whitsue03
I’m so sorry to hear what you have been through.
My daughter had a pituitary adenoma removed 15 years ago at age 27.
Her postop experience was similar to yours.
Pain was her biggest problem- she was able to find an excellent pain specialist who helped her through the worst time.
She also suffered from constant nausea and occasional vomiting.
She also had to learn how to balance her hydrocortisone- adding some when she got sick with a virus for example.
You will feel better! It takes time, but your body will function normally again.
The body was exposed to high cortisol levels for a long time, affecting many systems- blood pressure, blood sugar etc,- and it will take a while to get back to normal.
Hang in there!

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