You sound like you are taking the right steps and talking to the right people. I just had my 2mm tumor removed at UCSF yesterday and felt well enough to go home last night but they kept me for observation.

The medications work great for some and not so well for others. I started experiencing bad complications in April and it took till October to really find the right specialist. In November I scheduled the surgery, and had it yesterday.

My understanding is if your prolactin numbers are low enough it allows you to ovulate and both medication and surgery can get them down.

You are on the right path!

Sending Hugs

Hello! I agree with orangejuice...sounds like you've taken great steps and are definitely talking with the right people. It's been quite a few years since I've learned about my prolactinoma, but I experienced irregular periods to eventually no period when my PCP finally did blood tests that revealed a high prolactin level and an mri showed a tumor in the pituitary gland (I was 22 when I was diagnosed and I'm now currently 30). My endo initially started me on bromocriptine; however, I had terrible side effects with that med. I talked to my endo about it and he switched me to cabergoline, which had less side effects. Both meds reduced my prolactin level, shrunk my tumor to virtually nothing, and my period came back within 6 weeks, so surgery wasn't even a consideration for me.

Assuming you are otherwise a healthy person and don't have any other unrelated issues when it comes to fertility, you should have no problem getting pregnant once you get your prolactin level normalized. By the way, some people have to stay on the meds for a really long time...years. I have never felt like I've gotten a straight answer, but it sounds like this could potentially be a lifetime thing that you'll have to have checked out consistantly. You're endo might tell you differently, I've heard several things from multiple endos.

Oh, and after I started taking meds and my tumor shrunk, I went back to a solid exercise routine and got down to my lowest weight since early high school! Hopefully, simple meds will help you as well! My best to you! :-)

...BTW, lemme if you have other questions! It was a challenging road for me before I started feeling like myself again and wished I had someone who could relate, so don't hesitate to send me any questions or anything!

Thank you so much ladies!!! ... It really feels great when you can speak to others who have gone or are going through the same thing that you are. I will definitely let you know how everything has will be going.

Orangejuice: Did they remove your tumore through the nose cavity?

Singsweet: What type of side effects did you have with the meds?

Bromocriptine made me extremelly nauseaous and I had really bad reflux problems, to the point where I could barely eat anything or drink anything (even water)...I called it an "involuntary eating disorder" lol. It was awful. My endo told me that reflux wasn't a side effect, but as soon as I got off the meds the reflux and nauseousness went away. I also had a panic attack one day, which is not like me at all...never had a panic attack before and haven't had one since I got off the meds. The thought of ever having to get back on bromo makes me shudder. But please keep in mind that not everyone reacts the same to these drugs, so don't let this scare you! Your experience could be completely different!

With cabergoline (ah my good friend cabergoline) the side effects are generally fatigue and a slight headache the day after I take it. I just recently had a baby, so I'm not on the meds now, but when I would take it, I'd generally take it early in the evening (at least 4 hours before I go to bed) so that I can sleep through most of the side effects.

Yes, they took it through my nose. My left nostril is sore, but less bloody each day.

Hi,

I also was just diagnosed with a microprolactinoma (5mm) a month ago. Same thing, periods irregular, stopped, weight gain, high prolactin levels. I think i am still kinda in shock from all that. I am taking Cabergoline now. I started with Monday and Thursday 0.25mg at night. It has been interesting, to say the least. I have days of Euphoria, days where I am as low as low gets and all that as a result of the medication. Dopamine agonists are powerful. When you think about it, it is a neurotransmitter. It enhances everything. I like the positive side effects (euphoria, increased sex drive and the slight high when you take it), but i don't enjoy being groggy in the morning after i took it. My blood pressure is freakishly low (85/55mmHg) and my doctor changed my meds. So now i take mon, thu and saturday 0.125mg a night. Can't say it has changed the blood pressure but my mood is stable.
So, hang in there. After a month i am less drowsy and i think it may get easier as i get used to it. I know other people get nausea and all the other bad side effect....so let's hope it stays like this. I have a slight ringing in my left ear and my heart beats a lot faster. I found that working out helps a lot. And on the up side, i am dropping lots of weight.
I am still getting all sorts of test done. Looking at TSH, T3, Cortisol, Blood sugar, Cholesterol. I am thinking of having surgery, since i really dont want to take meds my entire life. I found out, the hard way, that alcohol and cabergoline is not a good mixture.
So for right now, no alcohol for me.
So, hope this helps, feel free to write back,

Chloe

Hi Acr4886, I was recently diagnosed with a 4mm prolactinoma. My endo happened to discover slightly elevated prolactin (approx. 28) and extremely low testosterone. I had initially gone to the endo because of suspected thyroid disorder, so I was extremely surprised to find out that my thyroid panel was normal, but I had pituitary issues. I had no symptoms (no irregular periods or lactation)at this point although a week before my bloodwork, i had started getting intermittent headaches. She sent me for an MRI and that's when they confirmed the 4mm adenoma. She said we could monitor or do dopamine agonist. After a few more weeks, we did more bloodwork and my prolactin was up to 37. She recommended I start meds ASAP.

Started on Cabergoline almost 4 weeks ago. Started with .25 mg per week for first two weeks then bumped up to .5mg per week. My experience on this drug has been interesting. The first couple of days I felt fabulous, no day-after side effects, great energy level, super focused and productive. After day 3, I started feeling low energy, groggy, brain fog, overall dragging feeling. This is how I was feeling on and off prior to taking the meds, so I chalked it up to the med dosage not being high enough to counteract the prolactinoma symptoms. The second week, the effects were the opposite. I felt low energy for the first few days after my dose and then after day 3, my energy was up again and I felt ok.

The back and forth between high and low energy, symptomatic and non-symptomatic has continued into week 4. I am wondering if this will level out at some point? Also, I had no nausea until I bumped up my dose in week 3. However, the nausea didn't kick in until about 6 days after my bumped up dose of .5mg which surprise me because I assumed that the nausea side effect would happen within a day of my dose.

For people who have been on caber long term, how long did it take for your tumor to become undetectable on MRI's? Also, once your prolactin dropped to normal and your tumor was gone, did you lower your dose of caber or keep at the same level?

I have been reading that approx. 20 to 30 percent of people can go into long term remission after normalizing their prolactin. These people can be weaned off caber and don't have recurrence of tumor or symptoms.

Extracare10--I started on bromo which was the initial drug that brought my prolactin levels down to normal and virtually shrunk my tumor to nothing. It's been a while, but I think it took a few months to get there. I stayed on the same dose of bromo for at least a year or so until I switched to cabergoline. During my time on bromo, I lowered my dose, but my prolactin started going back up immediatly. AFter about 4-5 years on caberg, I was done taking the normal dosage each week and started reducing it on my own and then stopped taking it on my own (not the docs recommendation) and made it almost a year until my prolactin started going back up. This past year I got pregnant, so I've been off meds for about a year and a half. I'm breastfeeding my son now and my endo won't check out my levels or anything until 3 months after I stop breastfeed b/c my hormones are out of wack anyway from the baby. I'm keeping my fingers crossed that this is the end of the tumor and elevated prolactin levels. Only time will tell.

in april i found out i had a 3mm tumor because i was suffering from engorged breasts (tons of milk), headaches, nauseous, etc. oddly enough my prolactin levels were completely normal! i finally saw a specialist at stanford who said many woman only lactate at nightime...anyhow, i have been taking caberlogine since april but am still gaining weight and lactating some. i was thinking of having the 3mm adenoma removed but thought it was too small to remove. i am reading someone had their's removed of 2mm....would love to know more. hale'

Hi

I was diagnosed with a macroprolactinoma approx 2 years ago. It was 28mm when I was first diagnosed with prolactin levels of 24,900. I went on Cabergloine after diagnosis and this soon reduce my prolactin levels to 59. I've had 2 MRIs since and all of them are encouraging - last one Feb 2009 - showing that it had reduced to 8mm. I haven't had a period since and I would really like children, but there is help available. I currently attend a hospital in London to help me conceive.

I hope that this helps a little, good luck with everything

Xx

I am new here, too. Just got the news today of my tumor and am shocked. I don't know what to expect, but so far is helpful to read other experiences. I am seeing a neurosurgeon tomorrow, but am not excited about the prospect of being 'out' for upwards of 4 weeks! Is it normal to jump right to surgical removal or can I start with medication first? I'm open to advice and anything anyone can offer.

As an update, my symptoms have dramatically subsided. I have been feeling virtually symptom free for 10 straight days. This is after 4 weeks on caber. For the first few weeks on caber, I was having intermittent symptoms (brain fog primarily) and was wondering when things would finally level out. I had been experiencing mild side effects from caber up until the last dose. Now I have no nausea whatsoever and no symptoms. I'm keeping my fingers crossed that this is the 'leveling out' I've been hearing about. I have bloodwork scheduled in a couple of weeks. Looking forward to seeing my numbers. My last test showed prolactin to be at 37.

Hello there, I got diagnosed ten months ago with a prolactinoma pituitary tumor. It has been very hard for me. There has been alot of testing, waiting, and side effects from the medication. It helps to have a great support system in place through the treatment stages. Hang in there, and good luck. If bromocroptine makes you sick, you can change medications. It made me VERY ill. Take care...

I am new to this site, just found it today. I've had prolactin issues since I was in my 20's. I am now 49 and finally my doctor decided to put me on meds for it because he ruled out it was my low thyroid. I am to take the dose of cabergoline one pill a week cut in half. I read if you cut it in fourths it will cut down on the side effects. This should not affect it's potency right? I mean I would think this would be a better idea. Has anyone done this? Also I read too much estrogen (estrogen dominance) can cause these adenomas to increase in size. I was told my level went up from 88 to 175! Emotional havoc I tell you.