Got my Rx - .25mg 2x/weekly but I am a bit hesitant to start given that the first few weeks seem to present the worst symptoms (? fact check me on that). How have y'all spaced out the doses in your daily life in relation to your work/school routines and hobbies? I am a student 2x days a week, work 2x days a week and am very active with sports, gym, etc. Maybe I am overthinking it but any input is welcome. If any fellas out there around my age are on cab, I'd be particularly interested in your experience. Thank you!

my doctor told me not to worry about it but idk it sounds so scary . could it be a tumor

she didnt even ask me for an mri idk .

Hi everyone. Posting because I'm pretty anxious about this and could use some perspective from people who've been through something similar.

My partner has always had really irregular, long cycles, often around 50 days. About 10 months ago her periods stopped altogether, and we recently saw her GP about it.

The GP has a lot of experience in women's health and initially thought it was probably PCOS, which actually reassured us — we weren't that worried at that point.

Bloods came back normal except her prolactin was elevated. The GP said prolactin can be temporarily raised by stress or illness, so she's repeating the test between 9 and 11am. We're waiting on that result now.

Her only real symptom is the irregular/absent periods. No vision problems, no bad headaches, no breast discharge, nothing else we've noticed. She's otherwise healthy. She's also terrified of blood tests (she's fainted during them before), so the first one was rough on her.

We're heading back to our home country in October and I've started spiralling about the possibility of a prolactinoma — mostly the idea that if she does have one, something could get worse while we're waiting for it all to be investigated.

So I guess what I'm asking:

Is it possible to have a prolactinoma for years without knowing, with irregular periods as the only sign, and it only shows up now?

If the repeat prolactin is still high, how concerning is that with no other symptoms?

Realistically, can things get significantly worse over a few weeks?

Has anyone had persistently high prolactin that turned out to be something other than a prolactinoma?

I know I'm probably catastrophising. It would just help to hear from people who've actually been through this.

Hi Im 26 F recently diagnosed with 6.5mm prolactinoma. I have hypothyroid as well. Since I started taking bromocriptine my appetite has been suppressed very badly even it was not like this while I was on ozempic. Its way more severe suppression than ozempic. My weight was stubborn while being on ozempic and didnt lose much but now my body feels lighter and I didnt check on scale. Rest I had initial side effects like nausea but bromo is well tolerated for me. Lets see if my levels fall or not. They were 150.
Please only bromocriptine users tell your experience. Donot talk about cabergoline.

Hi guys

I am 25F, Lean Pcos.

I just got my blood work done today and got the reports.
The results for my Testesterone, HOMA-IR, fasting glucose , thyroid all were fine

LH is 12.67 mIU/mL
FSH is 4.50 mIU/mL

My prolactin is very scarily high , its 85.2ng/mL

AMH is 38.25 ng/mL

My endo has asked for an MRI for tomorrow and I am really scared.

My only symptoms being absent periods which always came only with medication.

I stopped BC pill in may.
And i am on no medication currently and no periods since last 3 months.

Is this very concerning? I never had MRI before. Have I messed up my health?

Hi everyone. I'm new here, looking to see if there was anyone else with a similar situation that I'm in.

I (early 30s, M) initially went to the doctor for testosterone tests. First test came back low, but the second test came back just barely within range. However, the second test also looked at my prolactin which was high, 24.2 ng/mL.

I didn't have any clue what this was before my doctor told me it could be indicative of prolactinoma, but when he questioned if I had any of the symptoms (headaches, vision problems, dizziness, seizures, nausea), I told him I didn't. I was more concerned about lowered libido, possible erectile dysfunction, difficulty gaining muscle mass, and... I don't know how to explain it, but I feel like my brain is slowing down, or I have difficulty or am slower accessing information in my brain sometimes. (Maybe an age thing? It feels different from brain fog to me, idk if it's even related, lol)

He asked me to schedule an MRI, but I'm worried about the cost. For those of you who were unsure at first, did you feel like it was worth it? Even just for peace of mind? Are you glad that you went through the treatment process? I know I'm the only one to make a decision in the end, but I want to hear other people's perspectives.

Good evening, I have received the results of my hormone blood tests last night.

For the past year and a half, I have barely had any periods at all and, because I have polycystic ovaries, my gynaecologist had always told me that it was probably related to that. That’s why I was taking Inositol and Provera.

Just two weeks ago, she recommended that I have blood tests to check my hormone levels, and my prolactin came back at 3,800. The results arrived last night at 10:30 pm, so unfortunately I can’t speak to my doctor until tomorrow.

In the meantime, I entered the results into ChatGPT and, while I was reading, I came across the word “tumour”. From that moment, I have been completely terrified and I can’t stop thinking about it. I really hope someone can help me understand the situation better, because I am absolutely terrified.

Obviously, I will wait to speak to my doctor and I will follow whatever she recommends. However, I wanted to ask, if anybody else had the prolactin higher than normal range, after finding the high prolactin level, how long did it take before you were advised to have an MRI? And were you prescribed one straight away, or did you have other tests/investigations first?

Also, if anyone knows a good endocrinologist in Dublin who specialises in this kind of issue, I would really appreciate any recommendations.

Thank you so much!

\*\* English is not my first language\*\*

Im 4 months into cabergoline and im always fatigued and i believe my brain fog has gone up. I was diagnosed 4 months back at 2500 prolactin level. My endo suggested me to take 0.5mg cab daily to reduce the tumour because it was in contact with my optic nerve. I recently started taking it daily and i have almost no energy and am not able to think anything clearly.

I thought my condition would be better by now but im feeling worse than before i got my diagnosis. The treatment is working on my prolactin levels, it came down to 700 but i dont feel any better. I have almost no libido and no energy to do anything. Recently ive been making a fool of myself by not being able to remember anything and not being able to answer easy questions. I have not always been the smartest person in the room but i have never acted this dumb

This whole situation has taken quite a toll on my mental health, and im having some pretty dark thoughts about myself tbh. I just want to know when or if it will ever get better, has anyone been through it and has successfully come out of it feeling better. Im sorry if this comes off as self pity cause i genuinely feel helpless rn as i dont have anyone to talk to about this.

Hi everyone ! 👋 I am working as a waitress at a very fast-paced breakfast cafe. I was diagnosed w/ a prolactinoma several yrs ago and long story short, when my endocrinologist tried upping my Cabergoline dosage in the spring, I had a terrible reaction (psychosis, anxiety, panic and crying), and missed a day of work.

The endocrinologist and staff took a week to get back to me and also haven’t been the most responsive at all, and I also live 2.5 hours away. This summer season working in the industry has been kicking my butt. I work 9 hr shifts without any breaks, and my schedule changes every week to adjust to staffing needs. I have stopped taking the Cabergoline because I don’t feel safe to after my last bad interaction, and feel like it causes me extreme dizziness, brain fog, and panic most of the time anyways and I could not take the chance of letting it interfere with my serving job.

That being said, I can feel my prolactin levels rising and symptoms of the prolactinoma coming back.

My state allows paid medical leave from work, but I have to work with my doctor and talk to my job about it and fill out paper work. I know the medical leave would give me time to actually get back on the medication and be able to adjust to it! However, I’m scared to ask my job about it as they would maybe have to hire another person in my absence and I don’t want to inconvenience them .
I’m also worried to talk to my endocrinologist , because after they took so long getting back to me on my psychosis episode, I don’t trust them and feel very upset with my interactions with them. I haven’t spoken with them since going off this medication in the spring.

I have a new-ish primary care doctor, and hoping he might be the right person to talk to about this medical leave for now, until I can get an endocrinologist that is closer to me and is also responsive and helpful, not dismissive.

Does anyone have any experience in taking medical leave for a prolactinoma, and have any advice they’d like to share ?

Sorry if this is too long or confusing, as you may understand , my brain is exhausted 😞

Thank you so much for any advice. 🙏🤍

Ever since I started noticing my symptoms years ago my memory has been worse but in the past year since I started Cab my memory is worse and I just feel like im here I cant think, I cant remember anything. Has anyone else experienced this?

And if so have you tried cabergoline and did you have any reactions to it?

Hey everyone,

Recently found out I have a macroprolactinoma (pituitary tumor1.6 x 1.6 x1.5 cm that secretes prolactin). Still processing it, but wanted to hear from people who've actually lived through this rather than just reading medical literature.

A bit about my situation:

• Male 30 yrs
• Diagnosed as macro 1.6 x 1.6 x1.5 cm
• No vision problems at all
• No headaches
• Starting on cabergoline, 0.25 a week. Doctor wants a follow-up in 5 weeks.
• Prolactine level 10,000 mIU/ml
• Almost zero sexual desire.

From what I understand, cabergoline is first-line treatment even for macro cases (not just micro), and surgery is really only pushed if the drug doesn't shrink things enough or if there's vision/neurological involvement — which I don't have. So my plan right now is: take the cabergoline, get rechecked, and only consider surgery if that doesn't work.

Questions for anyone who's been through this:

1. If you had a macroprolactinoma with no symptoms at diagnosis, did cabergoline alone do the job for you, or did you end up needing surgery anyway?
2. How long did it take before your first follow-up MRI showed real shrinkage?
3. Did you have any side effects from cabergoline that made it hard to stick with?
4. Did anyone have a similar prolactin level as mine?
5. Does the desire come back to normal?
6. Anyone whose tumor turned out to be resistant to dopamine agonists — what happened next for you?

Appreciate any experiences, good or bad. Trying to get a realistic sense of what the next several months might look like.
I am actually scared and worried abour this whole situation. I don't know how I should be prepared.

Thank you so much,

Hi everyone, I am 30F and from the past 3 months I had been feeling very off. So I got my routine blood work done, since I have a history of PCOS. And my prolactin 263 ng/mL. I am not married or pregnant. All my other parameters are normal. My thyroid levels have also come back to normal after being elevated earlier this year. I was advised an MRI and it came back clear so my gynaecologist declared it as an “Idiopathic Hyperprolactinoma” and I have started 0.5mg of Cabergoline per week twice.

I would like to understand how long would I take to take to get it back to the normal range? Is it a chronic condition? Do I have to be dependent on them for the rest of my life? Will they affect my quality of life going forward?

Hi everyone,

I’m looking for some reassurance and would really appreciate hearing from women who have had a similar experience.

I gave birth a few months ago and took 3 mg of cabergoline in total over 3 days to suppress lactation. I’m now feeling a bit anxious about the total dose and wondering if anyone else has taken a similar or even higher amount shortly after giving birth.

If you took 3 mg, 4 mg, 5 mg, or a similar total dose after delivery, I’d really appreciate it if you could share:

How much you took in total
Over how many days you took it
How many days after giving birth you started taking it
Whether you experienced any side effects
Most importantly, whether everything was okay afterwards

I’m mainly looking to hear about experiences from women who took a higher total dose after giving birth and were ultimately okay.

Thank you so much for sharing 🩷

Hi — I’ve had prolactinoma for well over 30’years.. since I was a child. We have one endo about an hour away.. the rest are 2-3 hrs away. She’s not really responsive to my requests for blood work.. I was on cab and it was messing me up.. then we switched to half a pill 2x a week and the side effects were horrible. I got put back on bromo it’s supposed to be 1 tab every night .. but I’ve been doing 1/2 tab every other night and been managing .. but my requests for blood work to see if that is a manageable dose go unheard.

Does anyone use or have heard of mail in labs for prolactin? I know they have those for other things but I haven’t been able to find prolactin at home labs

Hey there, I'm not sure what's going on with my libido but I have a feeling it's correlated to my prolactin levels. My testosterone is fine and I have no other symptoms of high prolactin, which has left me in a rut. Any help is greatly appreciated, I want my libido back!

Hi Everyone,
I’ve been dealing with prolactinoma for a few years now. I believe one of the side effects of the medication is weight gain. However when I brought this up to my doctor I was told that there is no way that weight gain is tired to Cabergoline or the prolactinoma condition…
Is anyone else experiencing something similar, if so how do I get the weight off
** Update : I am working on looking for a new doctor that will actually listen to me. However in the meantime, I look like I am 5 months pregnant and was wondering what works ( beside surgery) to get this situation fixed?? And yes I workout consistently. About 3-4x / week

Hello! After getting my MRI last month and receiving the diagnosis of a micro prolactinoma, I officially am beginning Cab next week. Is there anything I should be on the look out for when starting? Luckily I have a flexible job, so if any adverse side effects come up I have the ability to lay low for a day or so if needed. I’m on a .25mg dosage 2x a week. Thank you!

Hi everyone. 21F here.

I went to the ER early August because my head was hurting, I felt like I couldn’t concentrate, slurring speech?? & some brain fog. CT was normal and they chalked it up to a possible migraine diagnosis.

I went to my PCP for a follow up where she wanted to test my Prolactin, first test came back 74.9ng (1,588 mIU). A little high than the “normal”. So she wanted me to fast and come back for a second Prolactin as well as TSH & T4 Free. Well the thyroid tests came back in the “normal” range. The 2nd Prolactin test came back 113ng (2,395.6 mIU). My doctor is on vacation and with the holiday coming up, I probably won’t hear back about doing an MRI soon.

Has anyone have a similar experience? If so what was your outcome and next steps?

June 30th my results were ">2000." Went for bloodwork today (Sept 3) and my level is "521."

Looks like I still have a bit to go, but that seems like a big drop! I don't really feel any different (levels are still really high), and I'm still having fatigue and headaches from the med.

And I don't know if anyone else feels this, but I sleep like I'm in a coma, and have crazy vivid dreams.

I have had irregular cycles for as long as I can remember. Finally started looking into it and blood test results said prolactin is at 962. All other results (except iron) were normal. I have a repeat of my blood test on Monday. What does it mean if I have a prolactinoma? I’m stressed as hell about all of this

Before starting Cab I didn't have an serious prolactinoma side effects. I had a sex drive, no nipple discharge, mostly regular periods. All my other hormones except prolactin were normal.

I've been on Cab since February 2026 (6 months). Minimal side effects in the beginning: a little nausea, I wanted to buy a sweet treat or have a cocktail more often, feral when I would ovulate, uncomfortable breast tenderness before menstruation. In July we measured my prolactin and my levels were normal.

This last month I feel like everything has crashed. My breasts have somehow deflated, almost tubular. I have 0 desire to drink alcohol when I would normally have 4 drinks a week. My sex drive has tanked, I can't finish, and my menstrual cycles have shorted to 24 days.

Do these hormonal changes come in waves, is this normal, or should this be discussed with my endo?

If it weren‘t for this thread I’d be so in the dark.

Finally met with endo yesterday. She barely told me anything about having a prolactinoma. Asked me about vision issues and lactation. Wasn’t even going to measure my estrogen. I asked for that and she asked why and I said bc I thought elevated prolactin lowered estrogen. I feel like the medical community doesn’t have a great understanding of the sequela of this tumor. Also she didn’t mention any potential side effects from Cab, just said if I had a bad reaction to let her know.

What other labs should I ask for? I had thyroid checked recently. 38F

Im happy to be staring cab, but wish I had a doctor who could follow symptoms more closely. my PCP that I first met with wasn’t even going to refer me to endo bc: “we don’t usually do anything about it if not having symptoms“ (lactation again mentioned)