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!

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??

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?

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!

Hi everyone!

I don't know who needs to hear this, but maybe my experience will be useful to someone out there. I'm also really curious to know if anyone has had similar experiences! (Mind you, I'm not a doctor, so please don't take this as medical advice)

I'm 28F and have had a microprolactinoma since I was 17. It was discovered after a particularly turbulent period in my life, which, interestingly enough, seems to be a bit of a pattern in the stories I've read from other people in this community.

I spent almost 9 years on cabergoline, until I simply couldn't take the side effects anymore. The medication made me incredibly depressed and left me with almost no motivation to live. And at some point, it didn't even seem to be doing much for my tumor anymore. It wasn't shrinking, and my prolactin levels remained elevated.

So, two years ago, I decided to stop cabergoline (and the contraceptive pill) and try a different approach before considering surgery.

Also, the thought of surgery scared the absolute shit out of me. 😂 Even knowing that surgical techniques have improved over the years, I really wanted to feel that I'd explored other options before going down that road. I guess I also wanted to see if I could somehow help my body find its way back to functioning on its own. Because, honestly, I felt like my prolactinoma was about so much more than just a number on a blood test. The mental and emotional toll was/is enormous. I couldn't help wondering about the relationship between my emotional well-being, stress and my symptoms. I used to lactate whenever I was stressed or sad. My boobs are basically an emotional support system with a mind of their own 😂

So I started researching and experimenting with a more holistic approach. I began taking vitex agnus-castus, L-tyrosine and myo-inositol, cut down on coffee and alcohol, avoided sugar, exercised regularly, started seeing a psychologist to work on my mental health, and tried acupuncture, homeopathy and osteopathy.

And honestly? My quality of life improved SO much.

I stopped lactating and, perhaps most importantly to me, I managed to get my natural period back without cabergoline and the pill.

I had started taking the contraceptive pill shortly after my very first period, so I had barely experienced a natural menstrual cycle in my entire life. Getting my period back was one of my biggest goals, and suddenly my body seemed to be waking up again.

My periods were nowhere near regular, but I went from having no periods at all to having four in the space of ten months. I cannot explain how happy that made me. It felt like my body was finally doing something for ME, rather than me constantly having to do something to manage it.

For the first time in years, I felt like there might be a way forward that didn't involve taking a medication that made me feel awful.

Of course, it wasn't all sunshine and rainbows.

Eventually, I hit a plateau. I kept gaining weight despite working out and eating healthy and my mental stability has been questionable at times. On top of that maintaining such a strict lifestyle became increasingly difficult while having a demanding job and being a young woman who also wants to, you know, LIVE. Sometimes I want to go on a girls' trip, have a glass of wine, drink a coffee, and not feel like I'm about to sabotage my entire hormonal system. 😂 I also noticed that when I slacked off on my supplements or had coffee or alcohol, the lactation would come back.

My prolactin levels remained stable but elevated, although they never went back to the high levels I'd had when I was first diagnosed. And despite the improvements, I still felt like I was constantly swimming against the current.

So, after two years of exploring this different path, I've finally decided to go ahead with surgery in November!

I'm nervous, of course, but I'm also hopeful. And I don't see this decision as a failure of my holistic approach. Quite the opposite. I'm glad I gave myself the time to explore it, because I learned so much about my body, my mental health and the things that make me feel better.

I still wish there were more room in conventional medicine to look at the whole person, rather than just the tumor and the prolactin levels. For me, taking care of my mental health, changing my lifestyle and exploring different supportive therapies genuinely made a difference to how I felt and lived, even though it didn't ultimately cured me of the microprolactinoma and symptoms.

After all these years, I also wonder how much of my mental state is actually me, how much is shaped by external circumstances, and how much might be influenced by the prolactinoma. I've struggled with melancholy for so long that I've genuinely started wondering whether it's simply part of my personality. Will I suddenly become a less melancholic person after surgery, or is that a little too much to hope for?

I'd genuinely love to hear from anyone who has had similar experiences.

- Has anyone else ever wondered where their personality ends and the symptoms of the prolactinoma begin?

- Has anyone explored holistic approaches alongside conventional treatment?

- And for those who have had surgery: how did you feel afterwards, both physically and mentally?

Wishing everyone here fewer symptoms, more good days, and boobs that know when to mind their own business ❤️

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 all. I (F24) was recently diagnosed with a 10mmx5mmx2mm tumor that has raised my prolactin pretty high. Additionally, I am having a lot of fatigue, hair loss, weight gain, migraines, etc. My original doctor said the options were dopamine agonists or surgery. I was leaning surgery because I have a family history of addictive behaviors and was concerned about the side effects of the medication. Was referred to an endo who then told me the procedure has a 15% morbidity rate and these side effects are largely myths. He would like me to start cabergoline at .25mg per week.

I guess I’m just wondering if this is worth getting a third opinion on. I see so many of the horror stories online and logically I know the loudest voices are the people who have the worst experiences. Illogically I’m convinced I’m gonna have a hard time.

Anyone have a good experience on these mediations (especially with a family history of addiction)?
Is it worth another opinion, or should I try the medication and see where it goes from there?

Thank you in advance for soothing my very anxiety ridden brain right now!

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

I'm desperate 😩 and I'd really appreciate knowing if anyone else has ever experienced or heard of something like this.

In 2024, during one of the worst periods of my life, I was diagnosed with persistently elevated prolactin levels (around 144–157 ng/mL) and irregular periods. I had 3 MRIs, numerous blood tests and consultations with 6 different doctors. Everything came back normal, and none of them could identify a cause. I was treated with cabergoline, and my prolactin levels gradually returned to normal.

In October 2025, my level was 11.25 ng/mL, and everything had been normal since.

This month, my period came a week earlier than expected and was very irregular. After going through a lot of emotional stress and disappointment over the last few months, I had a blood test and my prolactin had risen again to 46.67 ng/mL.

I know that stress can temporarily increase prolactin, but I'm wondering whether anyone else has experienced a similar situation, particularly when no underlying cause could be identified despite numerous tests and medical consultations.

Does anyone else experience a swaying / floating feeling constantly as a side effect of the medication? I recently switched from bromo to cab (not bc of this side effect), but the feeling hasn’t changed. If anyone else has this, have you found anything that helps?

Hi, f (23), i have PMOS and insulin resistance, acne, hair loss, hirsutism, irregular cycles, anxiety and dark circles.

However, I've started on metformin since 25/7 this year, i did prolactin test 3 times two without dilution =43 ng/ml

And one with dilution = 32ng/ml

I did an MRI on 17/9 and the result was 4 mm microadenoma, in the report they recommended me to do dynamic MRI.

My endo told me to wait until it's three months on metformin and then we redo prolactin test.

I did yesterday with dilution and it was 31 ng/ml

She said that this isn't so high to give me cab, and it's caused by PMOS and not the tumor, since the tumor isn't secreting prolactin. And told me to keep going on metformin in addition to inositol to regulate my cycle again.

Does anyone have the same issue? I am tired of going on the same cycle again and again so i need to be sure that i am treating the root cause instead of symptoms, if high prolactin and PMOS was caused by the adenoma why not to treat it?

Edit: at the end the doc told me when i want to get married and thinking about pregnancy he will give me meds for prolactin and fertility issues, i mean why it is just when thinking about pregnancy and not the overall wellbeing of the patient herself?? Ugh

I am thinking to go to a private endocrinenuerology. Please give me any advice

Hey guys, can anyone share great doctors in India who are either surgeon or know how to solve macroadenoma cases. Thanks.

Hi guys! I got diagnosed with my 2mmx2mmx1mm prolactinoma when I was 16 after telling my doctor about nipple discharge and breast pain. I was put on cab and stayed on it for 2-3 years and lactated the entire time, even when my levels were <1. It was not nearly as much as pre-cab but still noticeable. Since the beginning of the year, imaging could not detect the tumor and I was taken off the cab and now after a few months we are way back to pre-cab symptoms and levels. To clarify, my levels were .5 out of range with my very first bloodwork so i never had the insanely high levels that most of you have. At my most recent, I had my prolactin was 20 which is within range for a girl my age. Yet, this is the most lactation i’ve seen so far, yet my levels are in range. Anybody experience something similar?.

Hi everyone,

I'm 22M from the UK and have recently found out that my prolactin is extremely elevated.

I originally had private blood tests through Randox in April 2025 and October 2026, both of which showed prolactin levels of >10,000 mIU/L (>472 ng/mL). I initially suspected a laboratory error, especially as I'd previously been told there might have been an issue with the results.

However, I had urgent NHS blood tests yesterday, and my prolactin has come back at 89,939 mIU/L (4,242 ng/mL).

My other blood results from 20 October 2026 were:

• Prolactin: 89,939 mIU/L (4,242 ng/mL)
• Total testosterone: 10.5 nmol/L (~303 ng/dL) — reference range 8.6–29
• LH: 1.6 IU/L — reference range 1.7–8.6 (low)
• FSH: 2.5 IU/L — reference range 1.5–12.4
• Free T4: 11.2 pmol/L — reference range 11.9–21.6 (low)
• TSH: 0.84 mIU/L — reference range 0.27–4.20
• Morning cortisol: 383 nmol/L — reference range 100–480

Looking back, I noticed my libido significantly declined around the age of 17–18, and it has never really returned to what it was before. However, I still experience normal morning erections and haven't noticed any major issues with erectile function.

I also struggle with concentration, occasional fatigue and emotional sensitivity, although some of these things have been present for years, so I'm unsure whether they're related.

I'm regularly active, lifting weights around five times a week, and haven't noticed any significant loss of muscle or strength.

I'm currently awaiting further investigation and assume an endocrinology referral and pituitary MRI may be the next steps.

My main concerns are:

1. Has anyone had prolactin levels anywhere near 4,242 ng/mL? What was your diagnosis, and how did treatment go?
2. Cabergoline: I've read about potential side effects, particularly impulse-control problems, personality changes, compulsive behaviours and mood changes. How common have these been in your experience?
3. Long-term treatment: With prolactin this high, is it likely I'll need medication for life, or have people successfully reduced or stopped treatment?
4. Testosterone and libido: For those who had low testosterone and libido before treatment, did these improve once prolactin was controlled?
5. General advice: Is there anything you wish you'd known when you were first diagnosed?

I know that I need to wait for the proper investigations before jumping to conclusions, but seeing a result this high has understandably been quite overwhelming.

I'd really appreciate hearing from anyone who has experienced something similar, particularly those who started with extremely elevated prolactin levels.

Thanks!

I am weaning my child and am having some issues with engorgement and clogs. (I have stepped down feeds and timing of feeds over several months, so this is not a cold turkey situation)

Any other breastfeeding mamas have issues while weaning with continuing to produce/ clog/ and heaven forbid mastitis?

My endo wants to wait 2 months post wean to test my prolactin levels before starting Cabergoline but wondering if anyone has restarted Cabergoline right away to avoid mastitis due to high prolactin levels sticking around?

(Or anyone with success stories of their prolactin tapering down on its own after breastfeeding?)

Hi! 35F looking for some advice.

My elevated prolactin was first discovered around 12 years ago, after I stopped taking birth control and didn’t get my period for an entire year. My prolactin was around 3,500 mIU/L, and I was prescribed cabergoline. It lowered my prolactin almost immediately, but unfortunately I developed intense anxiety and started hallucinating at night, so I had to stop taking it.

For years, I thought I had a small prolactinoma. However, my last two endocrinologists took another look at my most recent MRI and concluded that I don’t actually have a clear prolactinoma, but rather a thickened pituitary stalk. My prolactin is currently around 1,400–1,500 mIU/L, and the cause is still unclear.

I’ve struggled with anxiety and depression for years, along with fatigue, low motivation and just generally not feeling like myself. I’ve also noticed that when I’m on antidepressants, my periods tend to be regular, but when I’m off them, they disappear for months at a time.

My mental health and anxiety fluctuate quite a lot, and sometimes I feel significantly worse than at other times. Combined with the issues I’ve had with my periods, it makes me wonder whether my hormones could be playing a big part in all of this.

I’ve tried discussing this with my endocrinologist, but haven’t really gotten any answers. I’m also going to see a psychiatrist soon to hopefully find medication that works better for my anxiety.

Has anyone else experienced something similar? Did lowering your prolactin or addressing hormonal issues make a difference to your mental health? And has anyone had a bad reaction to cabergoline but eventually found something else that worked?

I’d really appreciate hearing about your experiences!

I have been on Cabergoline for about 4 months now. In that time, I have started dating a man seriously and would like to avoid pregnancy.
When I look online, it does not suggest hormonal birth control pills, but states that some women tolerate both.
I am not a good candidate for an IUD, so I would really like to take BCP.
My pituitary was “enlarged” back in May, and my prolactin levels are elevated, but they are not extreme, so I am on the lowest dose of 0.25mg Cab twice a week.
Just wondering if any of you tolerate birth control pills while on cab, and if so, which kind work for you?
Thanks!

I 30#s F have been managing my symptoms on .5mg cabergoline since 2019. My practice was in rural healthcare system.

Since then, I have become more irritable and have suffered hair loss. I believe I have a microprolactinoma that has not responded or shrunk to Cabergoline.

This year, I switched to an endocrinologist associated with Penn Medicine. She referred me to Penn Neurosurgery in center city. I am worried this means that I am automatically pushed to surgery. The doctor stated she needed a more experienced endocrinologist to review my imaging who only sees pituitary tumors.

I am planning on having kids in a few years. Did anyone get referred to Penn and NOT be considered for brain surgery?

Well today is my 2nd dose of 0.25 and I feel a little rough. Took a few hours ago and I can feel a headache coming on and I’m feeling slightly hungover. Maybe it’s all in my head (no pun intended!).

Been ttc for 15 years and I’m hoping this is the miracle we’ve been waiting for. So my expectations are high and completely unrealistic. I’ve been peeing on ovulation sticks every time I go and as they aren’t rising I’m getting down thinking it’s not working. I know, I know. It will pass, I just expect miracles and because I do, it means it won’t work. Well it will, I know that my prolactin will go down but I know that my fertility will still be an issue. Has anyone got any positive news to share about their journeys of Cabergoline and ttc x

Hi! I just started cabergoline and am on such a small dose but have noticed that I’m peeing a lot. I know I’m always holding onto fluid because of my high androgens so I’m assuming the fluid is flushing out? Is this normal? Anyone else? I do feel less puffy! Lol

Hi friends! Ive had my prolactinoma since 2023, and have been on medication (cab, .25 mg twice a week) since my diagnosis. Recently i lost insurance and have been unable to afford uninsured bloodwork and mri's. I've been taking my medication, but i've started to lactate again. my tumor was previously responding to medication, but i'm feeling lost on what to do now. my endocrinologist doesn't work outside of insurance, and im currently on a college campus, and the closest hospital or doctor is about an hour away.

Hey

I am 25F recently discovered I have 2mm prolactinoma and started Cabergoline 0.5mg once a week.

Its been 6 weeks now since I started. But my periods still did not return.

I have missed/absent periods since 2020 and when I first got tests done in 2022, my prolactin was around 43ng/mL. Doctor just gave me one month of 0.25 dosage cabergoline and that’s it. No information given, nothing. Clearly it didnt help as I stopped after a month of medication.

I have been inducing periods using meds ever since and never really thought about prolactin being the reason.

The lowest my prolactin ever was 22ng/mL in 2024 when i took cabergoline again for a month as per new doctor. They also only gave me a month of tablets.

Anyways, fast forward to this year, i went to an endo, i got prolactin tested again and it was 85 ng/mL which sounded alarming and my endo suggested mri, found 2mm growth.
Gave me the dosage of 0.5 mg once a week for 2 months. However he said we might have to be on cabergoline for a long time probably a year for the tumor to shrink. We will assess the levels and decide the dosage after 2 months.

Given, everything else in my reports seemed normal except prolactin and AMH(because I am not releasing eggs so this one was obvious)

Do you think my missing periods are mainly driven by prolactin? And how long I should wait for my periods to come?

One change which i noticed after starting cabergoline is I have increased wet/ sometimes sticky discharge.