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...
Hello everyone!
I just revceived a call from my doctor about an abnormal MRI after having high Prolactin in my blood test. I had been reading up on it since that's what it seemed like they thought it might be. The nurse told me "It was an abnormal MRI so we are consulting a neurosurgeon and we will get back to you." I asked her what exactly she meant and she said I had a "microadenoma" that was about half an inch... I've done my reading... half an inch is a macroadenoma. I'm hoping she meant half a cm and not that she said micro when she should have said macro.
Anyways, I was wondering if it's normal for them to consult a neurosurgeon. I was under the impression that especially with microadenomas, they send you to an endocrinologist?
What are your experiences? I'm a little freaked out by the neurosurgeon thing, but I'm glad to know what's been going on. My husband and I have been TTC for about a year with no luck, so I'm hoping that getting this taken care of will mean we will have a little one on the way shortly. I've also experienced headaches, fatigue, and messing my words up a lot... anyone else have this and had it relate to the prolactinoma? Or am I just losing my mind?
Thank you!
I'm not a doctor but that sounds like similar symptoms that I had before being diagnosed with a prolactinoma. They sent mine to a neurosurgeon at first too which was a waste of time because they almost always try and treat them with medicine first before even considering surgery. So it was like a month of waiting for the neurosurgeon appointment and then two weeks waiting to get into an endocrinologist. The neurosurgeon basically just repeated everything I had already looked up on the internet. Also the neurosurgeon prescribed bromocriptine at first which is a terrible drug to take and the endocrinologist immediately switched me to cabergoline. 8 months of cabergoline though and my levels went from 250 down to 57 but still not in the normal range unfortunately. I hope you have better success and are able to have a baby. They say every case is different in terms of fertility with a prolactinoma so try not to worry too much. Hope this helps.
I have been looking for a support group for so long, I am so pleased to see this group.
I was diagnosed in August 2013 at UCSF, they are very well known for treating Prolactinomas- they have a whole floor dedicated to it! It's great! When I was diagnosed I was 24.
I was diagnosed with a prolactinoma the size of a golf ball, about 1.5". It has spider legs that go off and wrap around my optic nerve on my right eye, causing me a few blind spots. And the length of me having has caused my ovaries to stop producing estrogen and progesterone. Because of these legs, the prolactinoma is inoperable and I will be taking cabergoline for the rest of my life. And I get mri's every 6 months alpng with blood panels and doctor visits.
This was so discouraging at first, I had always wanted to have lots of children and now this was hindered by this stupid thing in my head, that I am constantly reminded of by my lack of period, the dizziness and dark spots of my eyes, the sythetic hormones, the severe migraines and constant doctor visits.
But with taking the cabergoline- it has worked wonders!!! I have been taking 3 pills, twice a week for the last 4 years and I took estrodial and progesterone for about a year. I just had an MRI two weeks ago and the latest results show microscopic amounts of the tumor in there and I have had a period for the first time in 9 years! It's so exciting!
The tumor is maintained and I will continue to take the meds to keep it down. And it only has a 12% chance of growing more in its maintained state.
It's weird how you can forget what's normal? I don't remember feeling like this, and what I do remember was so long ago. Now the next step is trying to be pregnant. Wish me luck!
You will be ok Kate, though it is so unreal and terrifying at first, the doctors will help you through this. I honestly believe that my body responded so well to the meds was because I was trying both modern medicine and more natural approaches at the same time, like acupuncture and diet/detox.
Sorry for the long post, it just helps me to hear the process. If you are at all in California, I would try to get into UCSF, Blevins and Kunwar. They are amazing and their treatment was great!
Best wishes.
I hope that my doctors will be as wonderful as yours have been!
Thanks for the encouragement!