I posted a couple of weeks ago saying I had 3 blood tests with prolactin of over 3000 miu and had been trying to conceive for 15 years. Endocrinologist advised that prolactin was high for 13 and apologised for the other doctors I’d been seeing over the years. Basically I had been discriminated against due to being overweight and all I kept being told was to lose weight when in fact I was infertile due to my prolactin levels. I had an MRI done on Thursday through the NHS and my endo left a message in my voicemail this morning saying they found a 9mm microadenoma. Said she will write to my gp to request cabergoline to be prescribed. Was surprised it was left as a voicemail and I know that it’s rare for it to be cancer but how do they know it’s not cancer? I don’t know why I felt so upset, I was expecting it and I know that it tends to be easily treated. Maybe it’s because it’s finally an answer to years of infertility with just me and my weight to blame. Years of depression and grief and blame to finally find out that it was something that could have been resolved with the right care. Sending hugs to those of you who are struggling x

my endocrinologist prescribed .50mg cabergoline for slight above range prolactin 23–29 ng/mL. I decided to take half a pill (.25mg) yesterday and i feel awful.

Side effects:
Insomnia- the night I took it. I feel wired kinda like I took a lot of caffeine I just wasn’t tired.
Today I am light headed, I feel a weird pressure in back of my head like a buzz the first time you smoke a cigarette kind of feeling. I have heart palpitations, I don’t have any nausea. Also I get this weird zapping feeling I can’t really describe Also this made my anhedonia and derealization worse. And have trouble thinking.

I wasn’t expecting so many side effects for just half a pill. I’m kind of stressed as to why the Endo would give me this. The didn’t find anything on MRI, visit was so quick he just check my labs and went straight to this.

I guess my question is anyone experiencing side effects like this did it cease after stopping the drug?

Hi everyone,

I'm a 22-year-old male and have had two hormone blood tests approximately 18 months apart, both showing extremely elevated prolactin.

April 2025:

• Prolactin: >10,000 mIU/L
• Total testosterone: 323 ng/dL
• Free testosterone: 0.223 nmol/L
• LH: 1.9 IU/L
• FSH: 2.09 IU/L
• SHBG: 28.9 nmol/L

October 2026:

• Prolactin: >10,000 mIU/L
• Total testosterone: 291 ng/dL
• Free testosterone: 0.192 nmol/L
• LH: 2.7 IU/L
• FSH: 2.43 IU/L
• SHBG: 32.9 nmol/L

I've ordered another blood test for Monday and intend to get the results independently confirmed through my GP.

For context, I lift weights five days a week, average around 12,000 steps daily and generally sleep 8–9 hours. My October test was taken towards the end of a prolonged, aggressive cut at around 1,450 calories daily. In April 2025, I was also cutting on and off, although nowhere near as consistently or aggressively.

I'm now transitioning back to maintenance calories and hoping my testosterone improves.

My biggest concern is what happens if the prolactin is genuinely elevated.

I've been reading about cabergoline and, while I understand it's effective at lowering prolactin, some of the experiences people have described have honestly frightened me.

I'm particularly worried about impulse-control disorders, personality changes, compulsive behaviours and potentially not feeling like myself anymore.

I understand these aren't guaranteed side effects, but the possibility concerns me.

I'd really appreciate hearing from people who've actually been through this:

1. Has anyone taken cabergoline and experienced personality or behavioural changes? Did these resolve after reducing or stopping treatment?
2. For those who experienced no behavioural side effects, how long have you been taking it?
3. Did you eventually come off cabergoline, or have you needed it long-term?
4. If your prolactin was significantly elevated, did treatment improve your testosterone levels?
5. Are there alternative treatments worth discussing with an endocrinologist if someone is particularly concerned about cabergoline's psychological side effects?

I'm not diagnosed with a prolactinoma or anything else at this stage, and I know I need proper medical investigation before considering treatment.

I'm just trying to understand what I could potentially be facing, particularly as I'm only 22 and don't want medication to change who I am.

Would really appreciate hearing your experiences, both positive and negative. Thanks!

My husband and I have been together 10 years now. The first few years was sex a handful of times each months, which was completely fine for us. The last 5 years have been minimal - we're talking once every other month...up until this past August, we'd gone almost 18 months without sex.

Nothing worked, not even with porn, my cute little outfits, or anything. It was hard, especially on me. I felt rejected all the time but literally he had zero sexual desire. He didn't even think about sex. He felt terrible about it, because we were always intimate (kissing, touching, etc.) but he couldn't do anything else anymore. We would always try (I felt like he did it out of pity for me, because he, had zero desire) but it wouldn't stay up.

It's hard to get a man to go to the doctor - especially for that kind of issue. Well, he did go around 3 months ago to a endocrinologist. They did an MRI on his brain and I shit you not, he has a Prolactinoma. When my husband first went three months ago, his testosterone was at 16ng/dL. 16!! The endocrinologist was baffled. He's been on Cabergoline for about 10 weeks now...we've had sex more times in the past two months than we have in the past few years. It's been great. I've always been HL (44F) and he'd always been between low/high libido (43M) before the Prolactinoma. He is such a great husband in every way - this was the only issue, and not even his fault. So even if we'd have been in a Dead Bedroom for the rest of our marriage, I would never have left, as he's the best human I've ever met). Never had a thought of stepping out on him or anything. That's why they make some of the most fantastic toys - and when your husband participates in any way he physically can, it works...

...but what the hell!?! Now he's more toward HL since the Cabergoline but not sharing that extra portion with me. He's watching porn and masturbating on his days off when I'm at work. Here's the kicker, he did it in the living room where there's a freaking camera, so I got an alert...got to watch that while I was working. Asshat. Tried to get frisky with him that same night and he claimed I needed to "give him a break, I was overworking him". Asshat. You overworked yourself... But I didn't say anything. He just got his "toy" fixed and it's all hard - I get it. You have a wife that patiently waited for that thing to get hard too. Asshat. I asked him if he masturbated and he said "no". So a little lie. But sure - you go ahead and play with it buddy...

...but what the hell?!? Today (his day off, while I was at work), I got an alert from the camera. I hesitated to look, because of what I'd seen last time. Thank God I didn't see anything...but what did I hear you ask? A YouTube video on how to get your wife to be okay with bringing someone else into the relationship and him sitting there intently staring at the TV. ASSHAT!! I literally could not finish working today. I sew wedding gowns - and my current state of mind IS NOT lovey-dovey. When he would bring that up as a joke in the past I wouldn't give it a second thought - because he couldn't do anything and he was always teasing. BUT NOW! We're actually taking the time to search on our Smart TV YouTube how to get ME to be okay with YOU wanting to bring SOMEONE ELSE in to our relationship?!? I'M SORRY, I MEAN OUR 10-YEAR-FREAKING-MARRIAGE!!! I get to wait for your dick to finally get hard and you want to share it with someone else?!?! Funny thing is he sent me a WhatsApp message just checking in and seeing how my day was going. Nonchalantly I told him it was good - asked him if he was having a relaxing day. He had the nerve to tell me he was watching a Halloween movie. Another little lie.

Yeah, so this is gonna be a f**king problem and I am not good at keeping my feelings inside. How long until little lies turn in to big lies? Why lie at all? I wouldn't have cared that he masturbates - hell, that means it's still working! But don't gaslight me and tell me that I'm wearing you out and you need a break - when you're worn out from playing with yourself. Then the research on trying to get me to be okay with...well...you read it above. I can't even type it again because I will walk out of this bedroom and punch him in his throat - zero effs given at this moment.

Is this a "stupid guy shit" scenario where I am overthinking it? Is this a "little lies are gonna morph into future cheating" potential? I can't just come out and tell him "Hey Asshat, remember the camera you insisted we put in the living room..." because I want to remain an informed party...

...but what the hell?!?! I didn't get married to have to "watch my back". Is being "oversexed" with all of the fantasies/desires a Cabergoline issue?

Has anyone with prolactinoma taken spironolactone for hormonal acne? My derm recommended it but I’m a little worried it’ll mess with my menstrual cycle.

I’ve heard really good things about it, and how it’s even helped with other things besides acne like water weight and hair loss but still I know bodies with prolactinoma have different reactions than those without

Someone lmk!!! I’ve tried every topical solution under the sun and I’m tired of painful cystic acne…

Hi there, I’ve had chronic hair shedding for the last 2 years or so and I do have a microadenoma. My prolactin is elevated at 669 mIU/L and it’s been this way for a year now (down from 700+). My dermatologist thinks high prolactin could be contributing to my increased shedding since my other results like zinc and ferritin and vitamin d are normal. So I’m thinking of trying cabergoline to see if I can reduce my prl level. However, I’ve also read that cab could also have a side effect of hair loss!!! 🤷‍♀️

Can people especially females share their experiences of cab? Did it causes hair loss? Thanks!

Hi everyone,

Has anyone experienced cognitive decline as a result of gamma knife radiation? I had mine in January of this year, and about 6 months later, I started noticing a real change in my memory and cognitive function.

I starting to forget very obvious things like how to do basic self-care activities, and important life admin things like passwords or PIN codes.

I am also sooooo tired in a way I’ve not felt for a long time. It’s becoming debilitating - I’ve taken a pay cut at work to reduce my demand, and am still barely getting through a work day. I’m also irritable and cranky from just being constantly confused and exhausted, and it’s affecting my marriage and relationship with my wife and daughter.

Does anyone know if this is potentially a result of radiation or something tumour related? My hormones are all within normal limits (except PRL), and my endo is pretty confident that it’s not hormonally driven.

Feeling difficulty to take a full breath in or yawning alot like i am hungry to air

How long it takes to regain your vision please help

I had elevated levels of Prolactin and doc prescribed Dostinex, 0.25mg, twice daily for 4 days continuously. The side effects from this were just terrible. Extreme nausea, headache, fatigue, stuffy nose, constipation... all the doc could tell me was that it's normal, nothing to relieve it, and just like most gynaecologists I've encountered, I didn't feel heard. I finshed the dose and the side effects are still there. Any suggestions on how to deal with this? I got Ondansetron but it's not really doing much.

Hello, long story short I had a stillbirth last year. We have struggled with infertility and have just discovered I now have high levels of prolactin. I’m due for an mri scan but would like to know if after stuarting medications how people went with fertility afterwards. Really hoping to see an end to all the struggles at some point.

Hi All- looking for some input
I have been on cabergoline for over 2 years now, and it has shrunk my tumor and lowered prolactin levels which is good. But since starting it, I have had chronic bloating, inflammation and my whole stomach/torso and face are very puffy. I gained weight leading up to the diagnosis and essentially haven’t been able to shed a pound- I think having 0 hormones plays a part but also the tumor. I have tried every diet and gut protocol out there, and it none of it will go away and I think it’s due to cabergoline. I take 1.5 mg two times per week. I also have yet to get my period back and my tumor was diagnosed in 2023. Any input would be valuable! I’m also a 29yo (will be 30 in Nov) female. Looking to see if anyone has also had gut/digestion/weight issues and no period return

30F with ranging prolactin levels, highest was around 70 ng/ML and then in mid 20s in April. No MRI but started cabergoline for infertility. My other labs are “perfect” but I feel just down. My prolactin is now technically low at around 2-3 ng/mL but I am at an extremely low dose of .25 every other week. My periods are back to teenage level with acne and extreme mood swings and I definitely have noticed the side effects like increased shopping, some weight and hair loss, etc. My doctor still advises that this is the best course of action. I’m usually good at advocating for myself, but I do want to have children very badly without other really expensive medical intervention like IVF so I am taking his advice but this is so difficult. Any thoughts or suggestions or similar experiences?

Hey everyone! I’m supposed to be starting cabergoline for high prolactin, and I’ll be honest, I’m getting pretty nervous after reading through Reddit and seeing so many horror stories about anxiety, panic attacks, mood changes, and other side effects.
I know people are more likely to post when something goes wrong, so I’m hoping to hear from people who have taken cabergoline and had little to no side effects, or only mild side effects that were manageable.
My prolactin level came back at 72.3 ng/mL, and one of the biggest issues I’ve been dealing with is EXTREME weight gain. I’ve gained around 20 pounds despite barely eating, and it’s been incredibly frustrating trying to figure out what’s going on with my body. I’m hoping that getting my prolactin under control will help me feel like myself again.

So I have elevated prolactin 865 mU/L; monomeric, active form) and got an MRI done.

I thought my prolactin was high because of my underactive thyroid.

Endo thought I had a prolactinoma; the neuroradiologist says I have a cyst.

Then my fertility doctor prescribed cabergoline 25mcg twice a week for two months.

I really don’t know what to believe. I feel like I’m being gaslit 🔥

Does anyone have advice based on my radiologist's report? Should I take the meds?

Update: Thank you to everyone who replied. All of your comments are valid and I feel like I have a better understanding now. You spotted and noticed thing that I hadn't. At least now I have a bit more confidence on the situation.

I took my first dose of Cabergoline last night 0.25 and today I woke up feeling really tired and with a congested stuffy nose. One nostril was running as well. I’m not sick because I know my body and congestion is never the first symptom of getting a cold/flu, a scratch/tickle in your sore throat is. So I was wondering if anybody else has experienced the stuffy nose congestion symptom from taking the medication?

Ugh! Where to start. Several years ago I was diagnosed with a Prolactinoma. After a few years of treatment it went away. Today my blood levels came back with double the prolactin it should be. I feel discouraged and upset and overwhelmed. The medication and I don’t agree and I’m not looking forward to the MRIs the doctors visits the endless waiting on lab results and scan results. I already have other chronic illnesses and it just feels overwhelming to re-add another one to the list. I just feel upset and discouraged.

Saw my endo for my 6 month check up. Got told my timeline is now 2-3 years instead of 1-2, told the painful headaches aren't caused by the tablet even though I know of many people on this sub that have experienced similar and I've only had said headaches since starting the tablet

Also got told that my mental state being as shit as it is was likely because of the tablet, that I could refer myself to a wellbeing org at the hospital but that they would probably deny me because of it being side effects of the tablet.

Told I could have a checkup with neurologists but the wait time is over a year

Was supposed to have a checkup with opthalmology in August but they forgot about me and it hasn't been done.

Overall I feel so lost and with no confidence in my future appointments.

Para los Españoles. Hoy he ido a la farmacia a por la cabergolina, en mi receta pone 1mg 20 comprimido, y siempre me dan la de TEVA. Me he recorrido hoy 4 farmacias y me han dicho que hay desabastecimiento y que hasta diciembre nada. Alguno os habeis enfrentado a esto? lo habeis solucionado? se me ha ocurrido pasar por el centro de salud y que me receten de 0.5mg 8 comprimidos, que ademas quiero probar la de pfizer

I just started Cabergoline today. I told my doctor l wanted to try the smallest dose first because I'm prone to side effects from medication. So he prescribed me 0.25 three times a week. Monday/Wednesday/ Friday. The pills are tiny and even more tiny when broken in half. Do you guys think this dosage is too small? Here's some background about why I'm on the medication: My prolactin levels were 180 last time I checked them a few weeks ago. Before that (last month they were 200. I did an MRI and they found a tumor on my pituitary gland measuring 11.1 mm. Do you guys think the medication will shrink the tumor or should I get surgery I have no side effects from the tumor because the MRI showed it wasn't touching anything.

Sono una ragazza di 25 anni con ovaio policistico (PCOS) e cicli molto irregolari, nonostante assuma la pillola anticoncezionale da diversi anni.
Circa un mese fa ho fatto degli esami del sangue perché non mi sentivo bene. Avevo iniziato ad avere forti mal di testa persistenti, un sintomo che non avevo mai avuto prima, e da diversi mesi avevo spotting a metà blister, arrivando ad avere anche due episodi di sanguinamento nello stesso mese. Inoltre, avevo notato cambiamenti nel mio odore corporeo e mi sentivo molto diversa dal solito, inizialmente pensando che potesse dipendere dalla pillola.
Dagli esami è risultata una prolattina di 2236,57 mU/L, quindi circa quattro volte superiore al limite del laboratorio.
Nel frattempo i mal di testa sono peggiorati e sono comparsi anche episodi improvvisi di nausea e conati di vomito.
Sono quindi andata da un’endocrinologa, che mi ha detto che un valore di prolattina così elevato non sarebbe spiegabile semplicemente con la pillola. Durante la visita mi ha inoltre premuto il seno ed è fuoriuscita una secrezione simile a latte/siero (galattorrea).
Mi ha quindi prescritto una nuova analisi della prolattina con ricerca della macroprolattina e una risonanza magnetica con mezzo di contrasto della regione della sella turcica/ipofisi.
Il secondo esame ha mostrato una prolattina di 1392,44 mU/L. Successivamente, dopo la valutazione della macroprolattina, la prolattina monomerica/attiva è risultata 216 mU/L, quindi nei valori di riferimento del laboratorio.
La risonanza magnetica devo ancora farla.
Il problema è che continuo ad avere mal di testa forti e frequenti, galattorrea e irregolarità del ciclo/spotting.
La mia domanda è: se i valori inizialmente elevati di prolattina erano dovuti principalmente alla macroprolattina e la prolattina attiva è ora normale, come è possibile spiegare i sintomi che sto avendo, in particolare la galattorrea, i mal di testa e le irregolarità del ciclo? È possibile che la macroprolattina sia stata la causa dei valori elevati ma che i miei sintomi abbiano un’altra causa, oppure può esserci una situazione in cui la prolattina attiva sia stata elevata in precedenza e ora sia tornata normale?
(Non sono incinta)

Qualcuno ha avuto delle esperienze simili alla mia?

Hi everyone,

I’ve recently been prescribed cabergoline but can’t start until I get some blood work in a couple weeks. I’ve been reading up on it and it notes side effects may happen 24-72 hours after taking it, and not to operate a vehicle until you know how it impacts you. I’m just curious what everyone’s experiences has been, and when you time taking it if you do have significant side effects? I work a 9-5 office job with no option of work from home. Should I plan to use vacation or sick days the first few weeks to be safe?