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.

Hi everyone!

I’m 22F and a couple of months ago I went to the ER for migraines, brain fog, and right-side numbness/ tingling (now experiencing missed menstrual). My PCP did a prolactin test on Aug 11 (74.9 ng/mL) and again after fasting on Sept 2 (113.5 ng/mL).

I finally get a contrast brain MRI in a couple of days to see what’s going on and if there is a pituitary lesion.

What was y’all’s outpatient contrasted MRI like? And how long did it take to get your results?

TIA!!

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.

Anyone have experience with their prolactin being too suppressed at higher dosage so they decreased the dosage? When bloodwork came back it looked as though my dosage was a tad too high so doctor decreased dosage. However every time we try to decrease dosage my nipples get so extremely sensitive. They hurt taking a shower, when I wear a bra, when I don’t. When I’m on the higher dosage it goes away, yet in general on the lower dosage I feel better overall. 🤪 it’s just the nipples issue is sooo annoying. Wondering if I just give it some time to all even out maybe the nipple sensitivity will lessen? Anyone have this experience?

How you feels is most important thing

How many weeks or months to recovery

Your memory changes

Your overall personality chang in a good way

Your hormone levels

second puberty?

I need some tip or help I have been having irregular periods for years now on and off been feeling sick body has been feeling weird for a while I did some blood test only one came back elevated was my prolactin, did another macro prolactin and still a bit high so now it’s either I get referred to a endocrinologist or I do a MRI I just said I’ll go to a endocrinologist. Im still trying to figure out what going on or what to expect should i be worried wait I I’m which the anxiety I have my brain is all over the place now oh and o recently have a milky discharge from my nipple and I’m not pregnant.

Just a bit of a vent to be honest. Today was my lowest low, I got one of my headaches from caber that usually lasts in the region of 6 hours. I'm quite a social person by nature but none of my friends were around at all, no one on discord to talk either and my parents are away so this was probably the most miserable 6 hours of my life, I hate this condition so much I just want this to be over.

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.

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?

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?

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.