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Pituitary adenoma rediagnosed: They're not sure now
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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Hello @hmcmillian and welcome to Mayo Connect. As I read your post, I certainly felt the frustration you must feel at getting so many contradictory messages from your doctors and having continuing painful symptoms.
I'm really glad to know that you have an appointment at Mayo Clinic to get to the bottom of this problem. Mayo specializes in hard-to-diagnose problems and they have research that allows them great treatment modalities.
If you are comfortable sharing more, what type of specialist will you be seeing at Mayo?
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1 ReactionMy daughter diagnosed January with pituitary adenoma (macroprolactinoma) prolactin level at 500. Cabergaline (sp?) dopamine agonist meds reduced levels from 500 to 21 in 3 months and tumor has begun shrinking from 19 x 11 mm it was in January.
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2 Reactions@reilly3, I'm so glad that your daughter's treatment is shrinking the tumor and that you took the time to offer reassurances to @hmcmillian. It helps to hear from others.
@hmcmillian, you can read more about Reilly's daugther's situation in this discussion:
- Teen daughter 2cm x 1.1 pituitary tumor: Any advice? https://connect.mayoclinic.org/discussion/teen-daughter-2cm-x-1-1-pituitary-tumor/
They also got a second opinion from Mayo Clinic and can share their experiences.
@hmcmillian, may I ask what they thought you had and why the hysterectomy was hoped to be the solution? It must be confusing to get a diagnosis of a pituitary tumor and then for it to be retracted. The symptoms you shared here could be related to an endocrine-active pituitary tumor. It will be good to get a second opinion as you are doing.
How are you managing your headaches and staying comfortable until your appointment?
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1 ReactionI am getting labs done and another brain mri done 1st. Then I will be seeing Dr. Michael Pham rheumatologist and then Dr. Aditi Kumar endocrinologist. I then follow up with Dr. Bernard Bendok via zoom. I pray that they have answers for me. Day to day activities are getting more and more difficult for me.
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2 ReactionsI'm very interested if any one else has had symptoms like mine? Thank you all.
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.
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1 Reaction@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!
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1 ReactionThank 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.
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1 ReactionHave 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.
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.