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.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

hopefulmama | @hopefulmama | Feb 12 7:03pm

In reply to @gatorz "@reilly3 Were there any side effects from the medication ?" + (show)

@gatorz please would you let me know name of the medicine. My son has been diagnosed with it and doctors in Calgary doing wait and watch approach. It had bled in brain once. Please let me know the name of the med. Hoping your daughter feel better soon

gatorz | @gatorz | Feb 11 5:48pm

In reply to @reilly3 "My daughter diagnosed January with pituitary adenoma (macroprolactinoma) prolactin level at 500. Cabergaline (sp?) dopamine agonist..." + (show)

@reilly3
Were there any side effects from the medication ?

Colleen Young, Connect Director | @colleenyoung | Oct 31, 2024

In reply to @fierybeacon "I’m so sorry you experienced that. That is exactly how I feel now. I go back..." + (show)

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.

fierybeacon | @fierybeacon | Oct 24, 2024

In reply to @barbiejk "Have you had a MRI? Non-functioning pituitary glands can produce a host of problems/symptoms. I had..." + (show)

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.

fierybeacon | @fierybeacon | Oct 24, 2024

In reply to @hmcmillian "I'm very interested if any one else has had symptoms like mine? Thank you all." + (show)

I’m sorry you went through this . I see that this post is from 2 years back.. but yes, I am going through the same thing now. My symptoms are psychological as well as physical. Due to a massive fibroid, I had a hysterectomy in January 2024(left 1 ovary). I was diagnosed in august 2023 with the fibroid and macro adenoma with prolactin levels near 125. I have taken the Cabergoline as best as possible when ADHD don’t cause me to forget , I haven’t missed many doses . It seems to be doing nothing for me and my inability to think, along with pain all over my body and especially my joints and migraines w aura is getting worse all the time. go back for an mri in 2 weeks and I don’t even know what to have them look for.

barbiejk | @barbiejk | May 31, 2022

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.

hmcmillian | @hmcmillian | May 4, 2022

In reply to @astaingegerdm "@hmcmillian - I understand how upset, confused and even scared you are now. I just want..." + (show)

Thank you for your support. They removed my ovaries when I had my total hysterectomy. I am really looking forward to seeing the Dr's at the Mayo clinic. It sounds like from everyone the will give me the answers I desperately need.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | May 4, 2022

@hmcmillian - I understand how upset, confused and even scared you are now.
I just want to offer my support- you are going to see excellent doctors and they will have answers for you and plans for making you well.
Hormones can cause such unusual symptoms.
The hormones that cause problems with your breasts and ovaries are programmed by a small gland within the pituitary gland. If the pituitary gland is malfunctioning, then your breasts and ovaries are going haywire.
At Mayo Clinic they understand the process and know what testing is needed. Once they have a diagnosis, they also know how to treat you.
Try to rest up before your visit and think positive!

hmcmillian | @hmcmillian | May 2, 2022

In reply to @colleenyoung "@reilly3, I'm so glad that your daughter's treatment is shrinking the tumor and that you took..." + (show)

My gynecologist never did any lab work to confirm my prolactin levels. This was done by a new pcp I got after my total hysterectomy. The gynecologist thought my breast pain and drainage was all hormonal related. Clearly it wasn't. Nothing seems to help with my headaches. I've tried many things. My joints now are so painful.