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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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I 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 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 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 ReactionsHello @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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