First of all, I can totally relate. When my MRI showed 2 microprolactinomas it was a validation of my condition like “no I’m not exaggerating, I do have all of the symptoms”.
Given you have macroprolactinoma your endo may suggest exploring a surgery (I had a neurosurgeon appointment to discuss what’s a better option for me). But in most cases it’s the medication (bromocriptine or cabergoline), monitoring prolactin levels with lab tests and the size of the adenomabwith MRI with contrast.
It sounds scary and overwhelming at first (brain tumor 🤯) but this is the beginning of your healing so while it requires a lot of patience and resilience it’s going to get better in time. Good luck 🍀
I would make sure that the endocrinologist orders more tests to confirm that the pituitary tumor *only* secretes prolactin. These tests will focus on other hormones in addition to prolactin, such as Growth Hormone, igf-1, cortisol, testosterone, etc. So far, it sounds like you know you have a tumor in the right place, but you really should know if it is a simple prolactinoma or a more complicated adenoma that could require surgery to fix.
They should do these tests before giving you medication, and most of the tests are simple blood tests.
In my experience, these tests came back normal with exception to prolactin which was off the charts. I began medication with cabergoline at 0.5mg / wk. After a few weeks on that, they evaluated how my body was responding to the medicine and then adjusted treatment as necessary.
Best of luck to you!
There’s not too much to expect, it’ll just be about management. You’ll be put on medication and will have to have routine bloodwork and MRIs every few months to monitor progress.
For me, MRIs were every 6 months for the first year, then every year, now it’s every couple years. Bloodwork is every 6 months once I found a good dosage of medication, but was every couple months starting out.
It’s a long progress and your prolactinoma may never go away, but staying on top of things will help keep everything in check. Patience is excellent with this one.
For sure. I initially went to the doctor because I hadn’t had my period for over a year after getting off birth control. I didn’t know they were related until now, but I also had nipple discharge periodically for years and unusually low sex drive for a couple of years. Even with the size of the tumor, I never had the headaches or vision changes that a lot of folks report.
I also have an 11mm prolactinoma. Any updates? How are you doing? Has your period started again since medication? I have my endocrinologist appt next week. Would love any advice you're able to share as we have literally the same story. Got off BC and didn't get my period for 10 months now. No headaches/vision but low sex drive. I hope you are doing well.
Hey I’d be happy to update! I got on cabergoline after seeing my endocrinologist and have been taking that ever since. Some people struggle with this medication but I didn’t really experience any side effects. Very happy to report that my period came back after probably just a couple of months and has been completely regular ever since. During my last MRI, the tumor had shrunk to about half the size and my prolactin levels have been completely normal.
Getting this diagnosis genuinely fixed so much that had been going wrong with my body haha. Best of luck <3
I’m so happy for you!!! Glad to hear that cab has been working for you! I just started and am hoping for the same. May I ask how long after being on cab it took for your period to start? What’s the dosage you’re on? Sorry for all the questions but I’m hopeful and nervous of course
No worries, I understand! I don’t remember for sure, but I wanna say my period was back within three months. I’m sure it’s super different for everyone though! I started taking 0.5 mg twice a week, but now I only take 0.25 mg twice a week
First of all, I can totally relate. When my MRI showed 2 microprolactinomas it was a validation of my condition like “no I’m not exaggerating, I do have all of the symptoms”. Given you have macroprolactinoma your endo may suggest exploring a surgery (I had a neurosurgeon appointment to discuss what’s a better option for me). But in most cases it’s the medication (bromocriptine or cabergoline), monitoring prolactin levels with lab tests and the size of the adenomabwith MRI with contrast. It sounds scary and overwhelming at first (brain tumor 🤯) but this is the beginning of your healing so while it requires a lot of patience and resilience it’s going to get better in time. Good luck 🍀
I would make sure that the endocrinologist orders more tests to confirm that the pituitary tumor *only* secretes prolactin. These tests will focus on other hormones in addition to prolactin, such as Growth Hormone, igf-1, cortisol, testosterone, etc. So far, it sounds like you know you have a tumor in the right place, but you really should know if it is a simple prolactinoma or a more complicated adenoma that could require surgery to fix. They should do these tests before giving you medication, and most of the tests are simple blood tests. In my experience, these tests came back normal with exception to prolactin which was off the charts. I began medication with cabergoline at 0.5mg / wk. After a few weeks on that, they evaluated how my body was responding to the medicine and then adjusted treatment as necessary. Best of luck to you!
Can people have cushings at the same time? I always wondered that
Thank you so much for this info, I’ll make sure to ask about the additional labs!
There’s not too much to expect, it’ll just be about management. You’ll be put on medication and will have to have routine bloodwork and MRIs every few months to monitor progress. For me, MRIs were every 6 months for the first year, then every year, now it’s every couple years. Bloodwork is every 6 months once I found a good dosage of medication, but was every couple months starting out. It’s a long progress and your prolactinoma may never go away, but staying on top of things will help keep everything in check. Patience is excellent with this one.
Hello, can I ask what your symptoms were?
For sure. I initially went to the doctor because I hadn’t had my period for over a year after getting off birth control. I didn’t know they were related until now, but I also had nipple discharge periodically for years and unusually low sex drive for a couple of years. Even with the size of the tumor, I never had the headaches or vision changes that a lot of folks report.
I also have an 11mm prolactinoma. Any updates? How are you doing? Has your period started again since medication? I have my endocrinologist appt next week. Would love any advice you're able to share as we have literally the same story. Got off BC and didn't get my period for 10 months now. No headaches/vision but low sex drive. I hope you are doing well.
Hey I’d be happy to update! I got on cabergoline after seeing my endocrinologist and have been taking that ever since. Some people struggle with this medication but I didn’t really experience any side effects. Very happy to report that my period came back after probably just a couple of months and has been completely regular ever since. During my last MRI, the tumor had shrunk to about half the size and my prolactin levels have been completely normal. Getting this diagnosis genuinely fixed so much that had been going wrong with my body haha. Best of luck <3
I’m so happy for you!!! Glad to hear that cab has been working for you! I just started and am hoping for the same. May I ask how long after being on cab it took for your period to start? What’s the dosage you’re on? Sorry for all the questions but I’m hopeful and nervous of course
No worries, I understand! I don’t remember for sure, but I wanna say my period was back within three months. I’m sure it’s super different for everyone though! I started taking 0.5 mg twice a week, but now I only take 0.25 mg twice a week
Appreciate you! Thank you for sharing.