Prolactinoma Support Group

Hi....My Endo ordered a test to look for MACRO PROLACTIN...this tells u exactly if the tumour is functioning or not. I never had fertilty or no periods...but have had hormonal problems on and off for a few years..am on treatment and have breast milk...not everyone is the same and it can take just a small change to still make you feel really horrible...

Yes--I would definitely think it could be something besides a prolactinoma. My levels were around 100 initially and some doctors aren't convinced mine is a prolactinoma. It could be a non-functioning tumor. My neurosurgeon told me that they won't know for sure unless they were to remove it and test the cells. Bromo lowered my levels and my tumor has shrunk a little. So, I am fine not knowing exactly what kind of tumor I have since I don't want surgery.

Hi, you can have different tumors on your pit that will make your body secret a little extra prolactin but may not be a prolactinoma. has your doc tested any of your other hormones such as your cortisol and growth hormone? Sometimes though a prolactinoma may not make you secret as much prolactin as it may someone else.30 is still above normal levels. We are all different as CaronLee said. It is important that you communicate to your Endo and that you feel he is informed and giving you as much info as he can aswell.

I know that a prolactinoma is a slow growing tumor. When they found mine they felt it was about 8 years since it first started growing. You could just be lucky and they caught it early. But these days if you have good pituitary Endo they will check all your hormone levels to be sure.

When I was diagnosed with a Prolactinoma in Nov 08, my prolactin level was 59.6 mg and was scheduled for a MRI at the end of Dec. It showed a 4mm tumor. I was on 2.5 mg of bromo since Jan 09, but recent blood results showed my prolactin had jumped to 103, not lowered. Now I am on 5 mgs of bromo a day and I tell you I feel like crap. They have tested the other brain chemical levels, but I haven't heard anything back about them, yet. I have been referred to see a different endo who does specialize in pituitary, in the neighboring province as the endo in the province that I live in is a quack, by my own Drs standards. They feel I have had my slow growing tumor at least for 14 -15 years.It does explain alot of problems over the years from 90 lb weight gain within 8 months, to hypothyroidism (which I may add mysteriously cured itself within 2 years of the diagnoses), to lacating breasts, prolonged periods to none what so ever, lack of interest in sex, hair growth in places I'd never imagined to loss of hair on my head, nevermind bones aching all the time, stiff joints, swelling up 10 lbs and losing it the next day, well there's more to say here but I don't want to cause eye strain lol. I do have to say that I have had a 24-7 headache that pulsed from inside to out for at least the last 2 years, which I wrote off to being stress related as I was dealing with my only child having 3rd stage Hodgkins. Needless to say my family Dr and the endo have said that the headaches were a sign of the tumor starting to grow again. Still have the headaches but not as prominent and am not sure if it's the tumor or the bromo. Anyways a tumor is always to be taken seriously, don't make any assumptions because your levels are lower it doesn't mean it isn't affecting you and your day to day life, our bodies react to things differently and some people are more senstive to when things in their body aren't functioning properly. I am hoping the new endo can shed some light on the increase not decrease with the bromo.
Are you on any medication yet?

Jennehle,
They started me on the bromo also, they even worked me up to 6 pills a day. With no impact on my tumor or levels. It was horrible . Once they switched me to the Dostinex (cabergoline) I saw result really fast. Sound like the same deal for you. Try to push them to switch your meds.

My prolactin levels have been jumping around. But at its highest it was 47. The last test that I had, my prolactin was at 23, which is apparently normal.

They don't really know what mine is, but I'm hoping to try some meds to see what will happen.