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Looking for others with Pituitary Adenoma

Brain Tumor | Last Active: May 31, 2022 | Replies (79)

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@sandysdoves

Hello It will be three years this May that I was diagnosed with my Pituitary tumor. It was discovered after my gynecologist ordered bloodwork and found that my Prolactin levels were very elevated. She immediately sent me to an Endocrinologist who ordered an MRI and an Ultrasound of my Thyroid because she felt nodules. The MRI came back positive for the Pituitary tumor, and I was referred to a Neurosurgeon. It took me time to find one as the one she referred me to didn’t take my insurance. Once I found one he explained to me in more detail what was going on. He told me there are only three instances where he operates, one if it continues to grow, two if it starts to affect my vision and the third is if I started having other symptoms. He also informed me that he saw something else on my MRI and asked if I had previously had any other scans of my brain. I told him two years prior I’d had a CAT Scan to make sure all of a tumor had been removed from the base of my skull. It was to make sure all the cancer had been removed. I was able to pull the films up on my IPad. He said the same spot was on the CAT Scan. At my six month MRI appointment he informed me I also have a Meningioma.Fast forward to my November appointment with the Endocrinologist my labs were all abnormal and I started having symptoms. The Endocrinologist ordered more bloodwork. One of the test was the glucose suppression test to check my growth hormones. Had to get the test done twice because the lab did it wrong the first time. The Endocrinologist warned me it might happen. In the meantime I had my appointment with the Neurosurgeon he said that the Pituitary and the Meningioma tumors are both stable. When I mentioned my recent lab work and symptoms he said if the lab work came back abnormal it would be time to discuss removal of the tumor. All my labs came back fine except my Prolactin levels are going back up. The Endocrinologist changed my medication dosage for the fifth time and said if it doesn’t go down she will repeat the glucose testing. If there’s a change in the Glucose Test then she will recommend to my Neurosurgeon to move forward with removal of the tumor. I go in two weeks get my Prolactin levels checked.

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Replies to "Hello It will be three years this May that I was diagnosed with my Pituitary tumor...."

Hi, Sandy I hope you are doing well. I dont know where you live but, University of Miami and Jackson Hospital took care my husband Dr kargi endocrinologist and Dr Bienveniste neurosurgeon are mu husband doctor . My husband spend 5 years under treatment and when he started showing signs blood pressure, sugar level rising, weight gain and and not improving he decided have surgery, it has been 8 months seems his surgery and he has been taken off all medicines. He is doing great and I hope maybe you can go see his doctors for a second, third or fourth opinion it's all worth it. May God be with you and I will put you in my prayers.

I have been told that mine is small and they keep checking my levels also. I still have
Guillian Barre Syndrome and still have memory loss and depression and hurt all over
and have sever headaches at times.