Pituitary tumor

Hi! My husband had most of your symptoms, as well, prior to his diagnosis. After his transsphenoidal surgery, he now has to supplement cortisol, thyroid, testosterone, and growth hormones. The adrenal gland regulates function of other glands…his adrenal gland had been squished by the macroadenoma for so long, it didn’t resume function after the tumor removal. It has been four years of hormone and medication adjustments for depression, anxiety, sleep, and migraines, but his team of doctors at Vanderbilt have been so good. They are a wealth of information and help to us.
Your recovery may be much different, depending on what hormones resume, but I encourage you to keep asking for referrals, bring someone with you to appointments who can take notes for later reference.
This is really a broad answer to your question, but I hope it helps…let me know if there’s something more specific you’re wondering about. My husband was a pharmacist and I was a radiographer/sonographer, so being in medical fields helped us understand some of his health issues, but it was still so much to absorb and learn.
Praying your surgery goes well…take care of yourself and don’t be discouraged when/if things take some time to recover and heal.❤️

@lukekee
My daughter had a pituitary adenoma, , causing Cushing’s disease. She had most of your symptoms plus others.
After surgery, the symptoms disappeared.
Make sure you get a neurosurgeon specializing in pituitary tumors. Not all do.

@jill2021 Thank for your response and yes, it is definitely helpful.

@astaingegerdm Thank you. that gives me hope. Right now my quality of life is not very good.
I researched Neurosurgeons as soon as I got the diagnosis and found one that does specialize in pituitary tumors and has a good rating and I figure that is the best I can do. I’m just going to keep praying that I’ve made the right choice and that there is a normal life for me after this surgery. I just want to feel normal again.

@lukekee I forgot to ask was his a small tumor or a large one? Just wandering if it made a difference in his recovery.

@lukekee
I just want to add that the hospitals that have best success have a dedicated pituitary team, including specialized endocrinologists that will also guide you through the postop time. These hospitals also perform a large volume of these surgeries.
You may have to travel, depending on where you live.

@astaingegerdm Thank you. I will look into that to see if I need to go somewhere else.

I had Cushing's Disease and had a pituitary tumor removed in 2015. They believe I probably had CD for 5-6 years before diagnosis. I, too, was going through menopause at the time and the doctors cited that as the reason for my symptoms over the years. I had many of the symptoms you did. If you read about Cushing's, there are some very definite symptoms associated with it. I was finally diagnosed in 2015 and had surgery. The recovery can be a little difficult because your body has to adjust to the change in hormones. Once that was over, I felt great! I did do physical therapy because I had lost muscle from the disease.
I agree with some of the others in this post - an experienced neurosurgeon and hospital are very important (how many of these have they done?)
Let me know if you have any other questions. Wishing you the best.

@drs22 Thank you for telling me about your experience. I appreciate it and it gives me hope that I will someday day feel better.
I have a lot of symptoms but the two that seem to rule my life right now is the horrible sweating and zero energy. Also, I have a lot of joint pain which I have seen a rheumatologist for and have been diagnosed with fibromyalgia and chronic fatigue syndrome but I think all my symptoms are related.
Did you have bad sweating? I could maybe say some of the other symptoms were caused by other things but these two are what I asked for a referral to an endocrinologist for. After blood, saliva and 24 urine tests that showed my cortisol was really high was what led to the MRI that showed the tumor so then the other symptoms were attributed to the tumor also.
I just want to feel normal again.
Everyone’s response give me hope and I need hope right now.
Thank you.

@jill2021 Thank-you so much for sharing your story, it helped me alot today. I am experiencing the same horrible symptoms, after reading some other helpful replies I realize my province knows very little about these types of tumors. I think I have Cushings disease, I was never free from the symptoms you mentioned, ever after I was able to dissolve a pit tumor with medicine 5 yrs ago. It that has recently returned. I was always questioning the physician about my issues with being adrenal insufficient and immune system shut down. I had a MRI 6 mths ago that my Doc never revealed to me, I was 6 mths before a medicine specialist was going through my chart and called me with the news a little over a week ago. Still no talk of an endocrinologist yet, I'm thankful I least got the news and the medicine specialist was able to prescribe the medication. My prolactin has always been high since very young, I was never investigated into. I am learning alot from your message, I think I may have to visit the idea of going to the U.S . for help. My goodness it's alot on a body, I can't believe everyone's stories, so much knowledge for us all. I'm praying for us all and I thank you a million times for sharing, it did my heart good! You will overcome this, your so strong💪Warm regards, Jillian.🙏✝️🕊️🌍❤️