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Pituitary adenoma rediagnosed: They're not sure now

Posted by hmcmillian @hmcmillian, May 1, 2022

I have been having horrible breast pain and cysts for about 3 years. Dr's did a total hysterectomy, said that would stop my pain. It worked for about 6 months. The pain is back and I still have breast discharge. My headaches are horrible. After getting an MRI, I was dx with a putiary tumor. Then I had a 6 months follow up mri. Now they say they have no idea what it is. Then I started getting terrible joint pain in my hands. Now it's also in my feet and both knees. My prolactin levels were high, but have been up and down. Seeing a group of Mayo Dr's next month. I'm hoping to get some answers. Has anyone else had any of these problems? I'm desperate. I hurt everyday. I will add I am a 44 year old female with 2 children. Thank you in advance.

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fierybeacon | @fierybeacon | Oct 24 4:23am
In reply to @barbiejk "Have you had a MRI? Non-functioning pituitary glands can produce a host of problems/symptoms. I had..." + (show)
@barbiejk

Have you had a MRI? Non-functioning pituitary glands can produce a host of problems/symptoms. I had a pituitary adenoma removed 9 years ago. Before removal and follow up treatment I thought I was slowly dying.

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I’m so sorry you experienced that. That is exactly how I feel now.
I go back in 2 weeks to have an mri to check and see if the pituitary adenoma is gone.. I’m assuming not, because I am still lactating. What is the surgery like, if I may ask? Did yours respond to Cabergoline at all? Did you have migraines also or worse ones? did you have any psychological symptoms, mood changes etc? I do not think mine is responding to the Cabergoline and I have a host of symptoms. I can’t even perform my job in customer service anymore.

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Colleen Young, Connect Director | @colleenyoung | Oct 31 3:32pm
In reply to @fierybeacon "I’m so sorry you experienced that. That is exactly how I feel now. I go back..." + (show)
@fierybeacon

I’m so sorry you experienced that. That is exactly how I feel now.
I go back in 2 weeks to have an mri to check and see if the pituitary adenoma is gone.. I’m assuming not, because I am still lactating. What is the surgery like, if I may ask? Did yours respond to Cabergoline at all? Did you have migraines also or worse ones? did you have any psychological symptoms, mood changes etc? I do not think mine is responding to the Cabergoline and I have a host of symptoms. I can’t even perform my job in customer service anymore.

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Hi @fierybeacon, I'm tagging @barbiejk to make sure she sees your questions to her.

I hope the MRI gives you answers about the pituitary adenoma and you can get effective treatment.

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