Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
Hey all. It's been quite awhile since I have been on here, because I THOUGHT I had gotten better. However, things were recently crushed and I am really hoping someone can give me some insight because my doctor has been.. well. not so helpful.
I was diagnosed 10 years ago with a Prolactinoma that was about 5mm x 7mm on the right side. It caused mostly just production of breast milk, along with some emotional issues. It went largely untreated because at the time I was in school and could not tolerate the medication I was on.
Fast forward to December 2012. I was now out of school and in a position working from home so It seemed like the perfect time to go see an Endo. I was producing after-all. I went. Had blood work done and an MRI. Start the confusion. MRI showed no tumor. Prolactin was still high so I went on Cabergoline with no real explanation. Production stopped. I went off.
July 2013, I started producing again. Another MRI showed no tumor. Went back on Cabergoline until right before Thanksgiving. Up until about midway through Feb I was completely symptom-free.
I started producing again a few weeks ago. Upset, I went to my Endo for a same day appointment. Got another MRI, but he didn't order blood work. MRI showed no tumor. Now here is the kicker:
I went to my GP a few days after the Endo for my annual checkup. While there she tested my prolactin just to see. I had not started Cabergoline.
Blood showed prolactin in normal range. MRI shows no tumor.
What.. the..hell...is..wrong..with..me
Please help. My doctor has given me no explanation at all as to what might be going on. I am scared and confused.
I was diagnosed 10 years ago with a Prolactinoma that was about 5mm x 7mm on the right side. It caused mostly just production of breast milk, along with some emotional issues. It went largely untreated because at the time I was in school and could not tolerate the medication I was on.
Fast forward to December 2012. I was now out of school and in a position working from home so It seemed like the perfect time to go see an Endo. I was producing after-all. I went. Had blood work done and an MRI. Start the confusion. MRI showed no tumor. Prolactin was still high so I went on Cabergoline with no real explanation. Production stopped. I went off.
July 2013, I started producing again. Another MRI showed no tumor. Went back on Cabergoline until right before Thanksgiving. Up until about midway through Feb I was completely symptom-free.
I started producing again a few weeks ago. Upset, I went to my Endo for a same day appointment. Got another MRI, but he didn't order blood work. MRI showed no tumor. Now here is the kicker:
I went to my GP a few days after the Endo for my annual checkup. While there she tested my prolactin just to see. I had not started Cabergoline.
Blood showed prolactin in normal range. MRI shows no tumor.
What.. the..hell...is..wrong..with..me
Please help. My doctor has given me no explanation at all as to what might be going on. I am scared and confused.
My prolactin has been showing slight elevation, so my neurosurgeon told me I should see another endocrinologist who can test prolactin with the hooke effect kept in mind. The hook effect is when your prolactin shows relatively close to normal, but in actuality it can be way above normal. I'd ask someone about this.
There is some sort if dilution that needs to be done do the blood.
@KatesGram. The MRI showed no tumor so I'm confused how this could be an indicator of it bending the pituitary on its stalk. Also, because the MRI showed all structures to be normal.
I really appreciate you guys responding so much