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...
I diagnosed with 3mm prolactinomia 12 years ago. I have been managing my tumor with meds ,annually Dr appt, and blood work. O thought I had adjusted well. No major complaint. This were my story gets complicated. I have always had very serious headaches. But lately my headaches have gotten worst. I thought about attending my primary care doctor but she would probably refer me to the endocrinologist . My endocrinologist always that the tumor was too small to be causing any symptoms . I decided to make an appointment to see an opthamologist . She ran many test and was very concerned with my vision. I already was legally blind in the right I due to a head injury when I was 3 months old. So I depend on my left eye. Doctor says that now I am losing vision in my good eye. She is referring me to a neurologist. She is very concerned and questioned me why I don't have a neurologist. I don't know why. I guess someone drop the ball. I just have so many questions. Such as what to expect at the neurology appointment. Is the tumor effecting the vision in the good eye ? She told me I have lost peripheral vision in my good eye. I though I had done well with the vision field test. I guess not. I am concern with what will happen next. How did this happen I thought I was doing everything right. My blood work has been fine. What should I expect next?
Haley
I'm glad you've found better dr's and are getting MRI's again, as they are how we can see what is going on with our tumors. Normalized Prolactin levels do not mean the tumor is gone. I know you wrote you wanted to keep your post short, but I'd love to hear what else you learned. I'd also like to hear about your pancreatic lesion, as I have something going on with my pancreas now. I'm getting an abdominal CAT scan tomorrow. Please keep us posted. You're definitely on the road to receiving some answers. All the Best :)
It's interesting your dr said that it's rare for the tumor's to grow, since we all have different sized tumors and some people's start to grow back again. I wasn't told by a dr that mine grew during that time I was undiagnosed, that's what I believe because of how I felt. I went from having head nausea every now & then to having constant pressure/pain everyday... so I figured it got much bigger.
I've since read a woman's blog who wrote down her timeline & in March 2008 her tumor was 7mm, then in Oct. 2009 it was 1.2 cm. I thought that was quite an increase. I also thought these tumors were slow growing ... who knows. She did go off of her meds during some of that time to have a baby.
I'm curious about tumor growth. I've heard they 'don't grow' but have also heard that the prolactin serum level is directly related to tumor size - and mine has increased (and therefore grown). So I want to know from these doctors - do they grow or don't they? And if they do (it seems they sure can!) then under what circumstances? I've also read a lot of medical journals and information that indicates there is often 'regrowth' upon discontinuing medication (which again goes against the 'no-growth' statements).
I'm curious about the head shaking too - I get this but only at a certain point in the day (after I've just awakened - regardless of the time - and only if I go back to sleep again) at random intervals (it can be months in between episodes). When it happens I'm 'paralyzed' and can't move or speak. Is this what you all experience?
Thanks to you all. Best wishes for a FULL recovery.
From what I understand, in the beginning (before med) when we're first diagnosed, our elevated prolactin levels do correlate to the size of our tumor. However, I don't think it works quite the same way in reverse. For example, after 7 pills my prolactin went from 447 to 12, but now 12 does not reflect the size of my tumor. I was confused when I first got this great blood work result & thought, "Wow, is my tumor gone, has it shrank back down to nothing! ?" I was so excited!!
My Endo explained that the tumor shrinkage lags way behind this new number so you can't tell it's size now by prolactin level, you've got to see at next MRI. She did say it should be shrinking if prolactin is normalized but the rate at which people's shrink is different. She also mentioned there are times when the shrinkage plateaus for a while before it shrinks again. Maybe some tumors shrink to a certain size & don't reduce any further... I'm not sure. Hope this is helpful.
Please let us know if you find out more regarding tumor growth. I would think they can grow... how else can they get larger?
My head shaking is at night when I lay down to sleep. It's been going on for years & it's every night. I've not had the "paralyzed" feeling or inability to speak. That must be a little scary. Have you asked your doctor about it? If so, what did he/she say? If I get any answers when I see the Neurologist next month, I'll post it for everyone.
Best Wishes to you & Everyone as well!!
There's a strong tie between Prolactinoma and PCOS (Polycycstic Ovarian Syndrome). Considering the tie, also, with hypogonadism...such as what I suffer as a sidebar to my tumor...nothing would surprise me about the pancreas as well...seeing that it is the largest Endocrine gland in the body.
I have sugar spikes when I eat and I have no doubt that my illness plays a part. The Autoimmune system plays a role as well, I have no doubt.
The liver filters so many things...and the 5HIAA test may or may not be a good indicator of MEN1 or 2.
Discovered recently that my pancreatic enzymes are low & I'm wondering if tumor/pituitary gland is affecting it. I'm thinking it is, as I've never had any digestion problems before the tumor. Makes me realize how intricately interconnected & delicate the endocrine system & our bodies are! Sorry to hear you suffer from hypogonadism.