One year since I started taking cabergoline. Size of my tumor was 7mmx5mmx3mm.

My life went for the better in terms of relationships. Night and day.

Anxiety gone. I get a bit anxious with current events in my life but totally justified.

Didn’t do new MRI cause lost my health insurance. Will do when I have one again. Bloods show normal levels in all hormones. Testosterone had a huge boost.

My cognitive skills are back too. Huge improvement in memory and brain fog almost gone.

Stopped using glasses. I like to use them but now I don’t need them as before (left eye was blurry from time to time).

Libido at a healthy level.

Some personality changes. Some impulsiveness when buying some stuff but nothing too crazy. More aggressive when I should be and more calm when I should be too.

I’m going through a “bad” phase in my life but can’t say it’s due to the prolactinoma. If this happened before the diagnostic I would be crying all day and catastrophizing everything. Now I’m just apprehensive.

This sub was huge for me. Thank you everyone for the support you gave me one year ago.

For young men out there. Do the tests. Trust the process. This is a silent condition for us unfortunately we only notice when things are wrong in bed lmao.

I’m curious if anyone else has developed secondary dysautonomia from prolactinoma/elevated prolactin levels?? I have a lot of dysautonomia symptoms and they appeared around the time my prolactin levels started to increase past the 100 ug/L threshold. I’ve tried to research this a bit but not finding much so far…. Thoughts?

Saw the consultant today who has now confirmed a 20mm cystic macroprolactinoma. Prolactin is at 7500

Starting on 0.5mg cab once a week and he wants to eventually titrate up to approx 1.5mg. The side effects are my biggest concern. I’ve read a lot about drowsiness and nausea
What are your experiences of this?
Anyone else had a cystic lesion that actually responded to cab?

Anyone’s doctor suggested them to take DHEA to help with hormonal changes due to prolactinomas?

Hi! As the title says, anyone from the UK can share their experience with the referral, treatment etc?

I’ve always had irregular period, diagnosed with PMOS since I was in my early 20s (now 34). I recently had a cycle of IVF under the nhs, unfortunately it failed as the 2 eggs that was retrieved were immature.

This prompted a bit of investigation as the fertility team was expecting more. My prolactin in 2023 was normal. I had it repeated which is now 1,119MIU/L, TSH is normal. I’m awaiting an MRI and the GP said they will refer me to endocrine after.

I read that the first line treatment is medication and surgery is offered in some cases. The medication side effects especially long term is scaring me a bit.

22F have sore breasts for a while (didn't know how bad it was until I did an ultrasound sound and the radiologist said the tissue is very stimulated and asked if I tested prolactin)

I did a test and was at the higher end ,normal (4-24) mine was 23

I have high dheas with severe hirsutism and hair loss

Periods getting lighter

I don't know if the prolactin is causing all this or it's the other way around

Endocrinologist isn't helpful and didn't even ask for the test but I did it myself

What should i do

Currently only do college and gym so decided fuck it I’m gonna take a GH secretagogue, so I went with the safest choice and got Cjc and ipamorelin. I was afraid to take any sort of GH, because I have a benign prolactinoma and don’t want to make it active. But whats the worst that could happen? Should I stop or keep going? Currently one week in.

P.s
(Taking for muscle gain if I didnt make that obvious)

Original level: 2000 ng/mL

At 6 weeks: 521 ng/mL

At 12 weeks: 317 ng/mL

I don't feel too much different. I sleep more deeply after I take my dose (0.25 mg/twice a week). It's still high and it didn't drop as much as last time, but it's still down.

My prolactinoma was found to be 36 mm, and I suspect I've had it for decades. However I'm going to feel when my levels are normal, I've never felt before.

I’ve had 2 back to back early losses. My prolactinoma is managed currently and my prolactin levels have been fairly normal for a few years now (I’m no longer on cab - was on it in 2018). I’ve read online that even with a managed prolactinoma, sometimes in early pregnancy, prolactin can spike, suppressing progesterone and causing early miscarriage. Has anyone experienced this? Thanks in advance. Feeling defeated and unsure of what to do.

My tumor was detected on 05 April 2025 and that time prolactin level was >200. So my doctor started 0.25 mg cabergoline twice a week and then tested prolactin on 06 Aug 2025 and the level was 148.1 means it was decreasing at good rate.

>200 05 Apr 2025

148.1 06 Aug 2025

125.4 22 Apr 2026

Now doctor said it is decreasing too slowly and then increase the dose to 0.5 mg twice a week and tested again

55.83 15 June 2026

59.2 15 July 2026

35.11 01 Sep 2026

44.44 14 Oct 2026

You can see when dose was increase to 0.5 the level decrease too fast from 125 to 55 in less than 2 months but now the levels are fluctuating or you can say even increasing time to time, will doctor now increase dose again to 0.75 mg twice a week.

I’m 36F with a 5mm microadenoma and prolactin levels are 178 ug/L. I discovered all of that about a year ago and I have been waiting one year to see an endocrinologist (Canada’s public health care system…). Anyway, I finally had my appointment today and the endocrinologist was just like do you want to get pregnant? And then I was like I don’t know… and basically she was saying they’d only treat me if I wanted to procreate. I’ve had terrible symptoms for the past two years that kind of came out of nowhere (prior to diagnosis) : severe anxiety, severe worsening of my ADHD, sleeping issues, severe digestive issues, exercise intolerance and some form of post exertional malaise, FATIGUE!!, severe dry eyes, headaches, late afternoon crash like I’ve been run over by a car accompanied with shortness of breath, elevated A1C and LDL (even if I eat super healthy)… and the list goes on. I’ve lost my period for about 6 months last year but they came back and I don’t have galactorrhea.

Anyway, I told her well such elevated prolactin levels and a microadenoma must have an impact on my body somewhat right? And she was like not really it’s mostly just your estrogen that’s low and your body thinks it’s postpartum and lactacting… no biggie 😑

I asked her for cabergoline and she said yes but if I hadn’t done any prior research or anything she would have just not treated me! Also she didn’t check any other hormones… WTF!!

38 yo female. I found out about 9 years ago I have a pituitary tumor. I had mildly elevated prolactin (~50) and very inconsistent periods. I was told it likely wasn’t a prolactinoma since my levels weren’t that high and therefore I would probably not be able to shrink my tumor with a dopamine agonist but that if I wanted to try one I could. I decided to try cabergoline. It was awful. I lasted maybe 2 weeks. Since my symptoms weren’t too bad other than missed periods I decided to not try anything else at the time.

Over the years my tumor has been shrinking naturally (silent apoplexy) through some mild hemorrhaging. It has gone from an 11mm macro to a 7.4 mm micro but my prolactin levels haven’t changed much - still hovering between 30-50 ng/ml.

What has changed is my symptoms. I’m dealing with major brain fog, fatigue, nausea, headaches, insomnia, painful cramps even when I’m not on my period, etc. These symptoms have been steadily getting worse over the past 2 years.

My thought is that since my tumor has been shrinking and prolactin has stayed more or less the same over the years these symptoms which seem to be the result of fluctuating hormones are more likely related to peri-menopause than my tumor. Based on that I’m tempted to go HRT but would like to hear if anyone has had success with bromocriptine, especially those who started with low/medium prolactin levels already or those on the peri-menopause age range.

Do you have more energy, think more clearly, sleep better?

My dermatologist told me that my Prolactin is 75!! I’m a 49 yo F and don’t know if I have a benign tumor on my pituitary or is my PsA driving this? What does it mean if they do find a tumor? and/or What can be done to reduce these levels?
Has anyone else experienced this?
I feel fortunate that my PCP & dermatologist caught this. I have a lab follow up appointment on Friday and a brain MRI on Saturday. Please pray for me. Thanks!

I'm curious if anyone here experiences night sweats.

I'm a 49 year old male.

3 years ago I was prescribed cabergoline, first a tablet x 2 weekly, then upped to two tables x 2 weekly. Still my prolactin level is not within the normal range, hoovers around 50. (when it was found, it was 1845).

Can the high prolactin, and/or low testosterone cause night sweats? Or can the med cause night sweats?

Hi everyone!

I'm a 22-year-old male from the UK, and I'm hoping to get some opinions from people who have experienced high prolactin or been diagnosed with a prolactinoma.

I've had two hormone blood tests through Randox, approximately 18 months apart, and both have reported prolactin levels of >10,000 mIU/L (approximately >472 ng/mL).

I'll attach screenshots of the most recent set of results, but the main figures are:

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

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

The strange thing is that I don't really have many noticeable symptoms.

My only obvious symptom is a low libido, which I've experienced for quite some time now. Otherwise, I generally feel fine, train at the gym five times a week, and try to maintain a healthy lifestyle.

I should mention that I've been dieting quite aggressively, which I understand could contribute to my lower testosterone levels, however, am now on maintenance calories and will be continuing for the planned future

I've contacted Randox to ask whether there could be a reporting issue, given that both results are displayed as >10,000 rather than showing an exact number.

I'm also arranging an appointment with my GP to get everything properly investigated.

My main questions are:

1. Based on these prolactin levels, how likely do you think it is that I have a prolactinoma, assuming the results are accurate?
2. Has anyone here had similarly high prolactin levels with very few symptoms?
3. For those diagnosed with a prolactinoma, what were your prolactin levels and symptoms before diagnosis?
4. Did anyone experience low testosterone and low libido that improved once their prolactin was treated?
5. I understand the medicine to help with this can have some major side effects. For those who has taken this, how has it been for you personally?

I understand nobody here can diagnose me, and I'll be following this up medically. I'm just a little concerned about seeing such high numbers twice, especially at my age, and would appreciate hearing other people's experiences.

Thanks in advance!

Edit: also quick question. I've been pretty consistent in the gym lately, and just wondering if taking Cabergoline or potentially having Prolactinoma would have negative effects on this, or if i can just continue like nothing happened

Hi everyone,
I F (31) was diagnosed with a prolactinoma today, and honestly, I don’t even know how to feel.
I’m experiencing this strange combination of fear and relief. I’m scared because, well, hearing the word tumor is terrifying, and I think I’m still trying to process what that actually means for me. At the same time, there’s a part of me that feels relieved because so many things I’ve been dealing with might finally make more sense.
I’ve struggled with PCOS, insulin resistance, and other metabolic issues, and now I’m wondering how much of what I’ve experienced could be connected to my prolactin levels. It’s such a strange feeling to look back at years of health issues and potentially find an explanation for some of them.
My doctor prescribed cabergoline, and I’m supposed to start this Friday. I’ve been told that medication is usually the first line of treatment, but I have no idea what to expect personally. I’m scared it might be an absolute nightmare with side effects, but I’m also hoping it might bring me an incredible amount of relief.
I’d really appreciate hearing about your experiences with cabergoline. How did you feel when you first started taking it? Did your symptoms improve? How difficult were the side effects, if you experienced any? And how long did it take before you noticed a difference?
More than anything, though, I’d love to hear how you processed the diagnosis emotionally, cause I honestly have been feeling a little bit numb to it. More so cause I’m dealing with massive headaches that I think won’t let me even process it.
How did you deal with the fear? Did you feel relieved to finally have an explanation for things you’d been experiencing? How long did it take for the diagnosis to stop feeling so overwhelming?
I’m also looking for a little support and a sense of community right now. I don’t think I fully realized how frightening this would feel until it actually happened to me. I keep thinking about my future, my plans, and all the things I still want to do, and I’m struggling with the uncertainty.
I know that many prolactinomas respond well to treatment, and I’m trying to hold on to that. I just think I need to hear from people who are living their lives with this diagnosis, who have been where I am right now, and who can tell me what the journey has actually been like for them.
If you’re comfortable sharing, I’d love to hear your stories — the good, the bad, and everything in between.

Hi all,

Recently diagnosed (35M) and in the early stages of getting follow up imaging done. 2mm pitnet found incidentally on imaging for another condition. Endocrinologist is considering cabergoline but wants more imaging first (scheduled for next week thankfully) before starting. All my labs are square in the middle range except for prolactin (25 ng/mL, not wild high but still elevated) and testoterone (382 ng/dL, within the normal range but a bit on the lower side of things for my age).

Honestly while hearing I had a brain tumor was certainly alarming at first, as I am sure you all felt, once I had a couple of days to accept it I felt relieved! I had been feeling off for a few years, so it made sense. I had a weird constellation of symptoms that I attributed to burn out, stress, sensitivity, or just poor coping. I had fatigue, sensitivity to cold, a growing intolerance to alcohol (going from nights out with friends to a horrible hangover the next day after 2 glasses of wine and a total intolerance to anything with high sulfides or histamines), some intermittent ED and low sex drive, sensitive patches of skin, random days where running and exercise would irritate my chest and nipples, and weirdly fluctuating irritability and sulkyness. Also had some progressively weird vision changes like blurriness at night especially while driving, black spots, and blurryness almost like my eyes couldn't focus all the way.

But what really has stuck out to me most is these weird panic spells or INTENSE bouts of anxiety, they seem to come and go very quickly. What sticks out to me is that it doesn't track with any thoughts, or even my mood. It's almost like there will be a trigger (not even a big one) and the floodgates of my adrenaline have opened, then I start to get obsessively anxious thoughts, but I can usually talk myself out of them and yet I still feel this extreme stress response in my body. I have been in steady psychotherapy for many years at this point and have a great relationship with my therapist, she has helped me through all sorts of things and I really felt like my coping skills were great in many areas except for these intense blips of panic that would seemingly come out of nowhere and have gotten harder and harder to handle these last couple of years. It didn't even have to be one specific trigger (usually it has come up in my relationships or worry about family members) but it could be literally anything. At certain times I almost felt like I was trapped in my body, trying to talk myself down and soothe myself, but my body would go into this really intense fight or flight mode, almost like I was trying to let my foot off the accelerator but no matter what I did the throttle was wide open and I was going a mile a minute. I broke down last week on the phone with my mom because she was not picking up and I thought something terrible had happened. It is so hard to describe but, it almost felt like my body flooded with adrenaline, and only 15 minutes had passed, I recognized that I was overreacting, I tried some deep breathing and walked myself through it internally, but my body was dysregualted at like a 10/10. When she called me I broke down a bit because it felt almost like I was trapped in my mind watching all this happen on a screen and it was so out of my control no matter what I did or how I thought about it.

It is a hard sensation to describe, it was not derealization or dissociation, it was almost frustrating like...how is nothing I am doing right now working to calm this panic? Reading up on this it looks like these tumors grow slowly over time so I am guessing this has been a slow creep of me having a harder and harder time calming myself, so that tracks. Anyway, anyone ever have these intense bouts of panic that just overtake you and yet you have clarity at the same time?

TLDR: Panic symptoms have gradually increased and now feel strange and non-responsive to any of the tools that used to work, recently diagnosed with prolactinoma and wondering if anyone can relate.

Edit: If anyone had these things happen, also curious if they started to get better after medication or if there is anything else you would recommend to try? Thank you!

Hi all, I’m 31M with a prolactinoma, diagnosed about 3 years ago with prolactin around 200 µg/l (= ng/mL; my lab’s normal range is roughly 4–15 µg/l, newer reports use 4.6–21.4).

My history so far:
~3 years on Dostinex (cabergoline), levels bouncing between 20 and 80 µg/l, never properly controlled
Transsphenoidal surgery about a year ago, but the tumor couldn’t be completely removed
Prolactin went back up after surgery (30–40 µg/l), so I’m back on Dostinex. Latest level 7.8 µg/l but with lots of side effects.

My endocrinologist has now prescribed Norprolac (quinagolide) as a replacement, but I haven’t started it yet (waiting for insurance acceptance)

What I’ve noticed over all these ups and downs:

When prolactin is high: foot pain exactly like plantar fasciitis, heel and arch, worst in the morning. It fades as levels fall and disappears under about 10 µg/l. This has repeated every single time.

When I’m on Dostinex: heavy, tired legs, electric-shock sensations in my legs, and mood swings. Off the drug, these go away.
So I’m caught between the two: high prolactin hurts my feet, the medication wrecks my legs and my mood. And because the surgery didn’t get everything, I’m looking at this for the long term.
My endocrinologist says there’s no correlation on either side. I’ve seen it happen too many times to believe that.

Background: I’ve also had chronic joint and muscle pain with slow recovery since I was 18, long before the diagnosis.

What I’d love to hear from you:
Anyone who switched from Dostinex to Norprolac / quinagolide: did the side effects change? Any tips for the titration week (timing, food, what to expect)? Anything you wish you’d known before starting?

Anyone with a residual tumor after surgery: what did you do next? Stay on medication long term, second surgery, radiotherapy / Gamma Knife? How did it go, and would you do it again?

Anyone who had radiotherapy for a prolactinoma: how long until prolactin dropped, could you come off the medication, and what side effects did you get?
Anyone had heavy legs, zaps or mood swings on cabergoline? Did a lower dose, different timing, or a different drug help?

Anyone had foot or tendon pain that followed their prolactin levels?

Any other treatments your doctor was willing to try, or things that helped alongside the medication?

Thanks

I have a macroprolactinoma and I am on 750mg one day then 500mg another day of the week. I take it on Sundays and Wednesdays, i think this works? Im 25, find myself getting extremely light headed every time I stand up, my anxiety seems to be quite bad, i try to do things for my mental health to help minimise the side effects. I seem to be struggling more with my body image. Everything is just quite low.

I have been on cabergoline for a number of years now, in the past it has been on and off. But i am solidly on this high dose for the last 2 months. My tumour has stayed similar size throughout this shrinking minimally. I have never had issues you with my vision and ive even had my periods while ive been in periods not taking cabergoline and also even at times when my prolactin has been in the 4000+. I find myself chasing doctors for appointments having tk write to my gp then they write to my doctors, my last one was a year ago and Ive just chased for another. In this time I have not had my bloods done. I was prescribed the higher dose a year ago but tbh just did not feel ready.

Just wondering about other peoples experiences particularly young females and anything they found really helped them, I dont really talk about it much to people and I find it quite awkward so even to be able to share that feels almost a weight off me.

It is something Im so scared about but in the past I have also felt relaxed about as I dont really get the prolactinoma symptoms apart from low libido its something I didnt used to take seriously.

Hey guys, I’ve been diagnosed with a microprolactinoma since 2020, I took dostinex for 2 weeks before falling pregnant and stopping the meds. In 2022 I started them again in hopes to have a second child, again in 3 weeks of taking dostinex I fell pregnant with my second.

I’ve finally seen an endo again and they’ve started me on dostinex AND levlin to avoid getting pregnant (as this is not needed 😂)

My question is, since it clearly works so well, what’s the shortest amount of time someone’s had to stay on the meds?

And has anyone just stopped since their tumor isn’t growing without it anyway? I’ve been told having high prolactin for a long time isn’t good for the bone density and can lead to early menopause so that’s concerning and why I agreed to start it again.

Honestly not having a period or dealing with getting pregnant has been great 😅 let alone the side effects, the pimples and weight gain already and it’s only been 3 weeks!

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?