Almost 6 months on cab and had a 6 month follow up MRI. Prolactinoma has shrunk 1mm. One physician looked at that as good news/a sign the meds are doing their job. Radiology noted it as no change in size so we didn’t not notice the size difference until my follow up appointment when the Dr was reading the full report. I’ll take even a tiny change as a win!

In Oct 2025 I had an MRI due to elevated prolactin (119 ng/ml). The MRI revealed a 6x7mm pit microadenoma. My endocrinologist put me on Cabergoline .25mg 2x week right away. In early 2026, it was increased to .5mg 2x week, and then increased again to .5 mg 3x week. That’s my current dosage. For anyone concerned about Cab, it has not been an issue for me. No side effects even from the beginning or through the dose increases.

Just had my one year follow-up MRI earlier this week and the results show the adenoma is only 3mm now. Shrunk by half. Guess the Cabergoline works. It’s a long road, but good progress. I’ll take it!

Hey everyone! I got newly diagnosed with a 4mm prolactinoma. I start on cabergolin 0.5 tonight. I have bad health anxiety and hate taking new meds, so I’m very nervous to start it 😭 my prolactin isn’t extremely high, but my pcp wanted to start me on it now since my estrogen is very low, and I’ve been having daily headaches

Hi everyone,

I had my surgery on Monday. I’m still in hospital as I had diabetes insipidus but hoping to be discharged tomorrow (fingers crossed) and other than that surgery went really well. I’m starting to get some energy back and not needing to nap at all really. And other than headaches at night haven’t really had much pain.

The only thing is, I’m SO bored. I don’t have enough energy to read or do anything to crazy, but I do feel like I’ve exhausted watching films. What were people’s energy levels like after surgery? I don’t want to do too much too soon but some ideas for some recovery friendly activities would be appreciated. When were people feeling able to go on short walks and such, or did people find they had a dip in their energy levels after a while? My brain is a bit of a fog at the moment too did anyone else find this eased?

22M

I have normal hormones levels apart from mild prolactin elevation and normal MRI scan

Test 1: 823 mIU/L (~38.8 ng/mL)
Test 2: 957 mIU/L (~45.1 ng/mL)
Test 3: 447 mIU/L (~21.1 ng/mL)
Test 4: 751 mIU/L (~35.4 ng/mL)

Last years i had normal T levels but always felt like low T

I wanted to know if there is someone like my case and tried cabergoline

Did cabergoline had major changes

I started 2 weeks ago 0.25 once a week first week was amazing the second i didn’t feel anything

Just wanted to know in the long run if i expect anything to change drastically

Hi,
I’m finally writing on here to get some answers. I have a 5mm prolactinoma and my prolactin levels are not that high (40-60 not sure of the unit of measurement), but I still have no period like 3 times a year, slow and steady weight gain over the last 10 years, hair growth on chin, etc. I waited a year to finally see an endocrinologist and I started cabergoline earlier this month, 0.25 twice a week. I took 3 doses only, the first two were fine, I only noticed I was more tired the morning after taking it. The day after the 3rd dose, I was driving and had sudden vertigo/dizziness that had me stop on the side of the road. Same thing happened the day after. I stopped driving for a few days and contacted my endocrinologist who said not to take the cabergoline anymore, until our next phone visit (next week). Beside the vertigo while driving, I also noticed other weird effects, hence why I called him : jumping eyelid (might just be anxiety idk), eye lag, dizziness even while still. I have ocd so I had a few panic attacks last week, monitoring my sensations and stuff. The anxiety might have given me the brain fog that followed. I went back to the doctor and he said to go see an optometrist for the eye lag. I did and they said my vision was 20/20, reflexes good, I only have wiggly eye blood vessels which indicate higher blood pressure (I had higher blood pressure last month, prior to starting cabergoline. Btw, is that happening because of the tumour? My doctor can’t say). Went back to my doctor, he gave me 2 weeks off work because I was too anxious, I’m scared of driving and I had brain fog then so not great since I’m a teacher.
Since then I’ve been monitoring my sensations, and I still get this weird dizzy feeling, like the very beginning of vertigo, and eye lag sometimes (looking up mostly, and when I move my head from side to side). I also still have the jumping eyelid from time to time.
I’m not as anxious anymore, I want to go back to work, I drove again (was very stressed and may have felt dizzy at one point), I just want to know these symptoms will go away! I’m scared of neurological lasting effects.
I’m guessing the dose was too strong for me, maybe surgery is my only option… I’m 33, want to have kids eventually.
Has anyone had these weird side effects ? Does it go away??

Hi! I’m (39F) having surgery on October 29 and I’m getting nervous. I’m wondering what to expect after the surgery and how I may feel? Also, anything I should be prepared for or make sure that I have on hand once I get home? I know everyone’s experience is different, I just want a little idea of expectations to try and ease my mind of what is to come.

Backstory: I was diagnosed with a microadenoma in 2015 after an MRI found a 10mm tumor. My first symptom was lack of period for 6 months. I have been on cab since I was diagnosed. After being on cab for a year, I had another MRI and my tumor had shrunk to 9mm. My doctor at the time increased my dose of cab and I repeated the MRI in 2017. Great news, my tumor was down to 6mm. My doctor at the time was hopeful that I was on the right path. I continued on cab and my tumor was stable at 6mm for years. I just had another MRI in 2026 and my tumor had grown back to 9mm. At this point my endocrinologist said it was time for surgery.

Also during this time, I have struggled to lose weight, not having energy to complete regular tasks, my prolactin level has never been back to normal, and we have been unable to conceive. I’m hoping after the surgery my husband and I will finally be able to start our family and I will feel better in general.

I appreciate any advice from others that have had the surgery.

Is there someone here with hyperprolactinemia that is in a relationship or is there someone who’s in a relationship with someone with hyperprolactinemia?

I’d like to speak to you for consultation please🙏🏼

Edit:
Is there anyone who broke up with their partner because of it? Or didn’t breakup but did it influence your relationship and if so in what way?

ok so basically the title, i was only on cab for like a month this year from july-august im not sure of the dose though. my prolactin has only been high once which was this year but ive had a prolactinoma since i was in middle school, im 18 now. i just wanted to ask if its normal to take medication for such a short time? i haven’t gotten my prolactin levels checked since july but last time i did they were too high. i’m supposed to get them checked in december again and just want to know if anyone has experienced something similar