r/Prolactinoma

I’ve found out last year that my prolactin was elevated and did an MRI that maybe found a tiny tiny microadenoma. I’m still waiting for an endocrinologist consult. But I’ve noticed my anxiety has been worse since and even before getting these results so it’s not anxiety due to that issue. I tried to research this online a bit and it seems inconclusive as if whether or not elevated prolactin can raise anxiety? What was your experience?

Edit : I’ve had anxiety disorders for most of my life but it just seems like it increased considerably since about the time I found out about the elevated prolactin.

I had a Varicocele surgery and o got diagnosed with prolactinoma 3 weeks ago I have some questions

Hello, I was diagnosed with a microadenoma back in January 2025 and have been taking 0.5 mg of cabergoline since then.

In April 2025, I noticed that I was starting to feel anxious, even depressed. I was constantly stressed and crying over everything. I felt a deep sense of unease.

I remembered that my endocrinologist had told me I might experience side effects. So I contacted her, and she told me I should keep going, but if it became really too hard, I could stop.

After stopping for several months, following my doctor's advice, I resumed treatment in August 2025.

From around October 2025 to February 2026, things were really difficult for me. I had intense episodes of stress and anxiety because of my studies, yet these aren't things that should have put me in such states.

The rest of the year was okay; I would sometimes feel stressed, but not to the point of feeling terrible.

However, since classes ended and during the summer break, that feeling of unease has returned. I often experience dizziness, brain fog, and headaches, and I feel sad. Today, I realize that I've actually always had these issues, but because my brain was too busy, I didn't even notice. I had just learned to live with it.

I then decided to take vitamins for mental balance, fatigue reduction, and mood support vitamins that contribute to mental balance, dopamine, and serotonin. Since then, I feel like I'm coming back to life; I feel much better.

Today, I don't know why I hadn't thought of it earlier, I'm wondering if all these mental health struggles might actually be linked to cabergoline.

I did some research, and it seems to confirm this possibility. On top of that, I remembered all the episodes I went through during the winter.

Do any of you have similar experiences or psychological side effects from cabergoline? I don't know what to do. I don't know whether I have underlying mental health issues or if these are side effects of the medication.

Before starting cabergoline, it's true that I've always been someone prone to stress, but never to the extreme degree that I experience from time to time on this medication.

Just got back from a hormone test result appt with my doctor and my prolactin levels are high at 839 MIU/L (UK)

They didn’t want to retest but they’re referring me for an MRI to see if there’s a benign tumour

Anyone else been through this? :( it would explain my irregular periods etc.. thank you

Hey, I’ve been on 0.25mg x 2 per week cabergoline for about 3-4 weeks now (take dose sun & weds). I get really tired / fatigued and a lot of brain fog. But, I’m going on an all inclusive girls holiday for 10 days and I’m gonna be drinking round the clock. Im a big drinker, early 30’s! I had a night of drinking last Saturday & got wasted off not very much (which isn’t like me).

I emailed endo and asked if I can miss 3 doses whilst away (so total 0.75mg) as I just wanna enjoy myself. He said “it’s totally up to you but it is unlikely to do any harm”

What do you guys think? Spent loads on this holiday and I just wanna enjoy myself for 10 days not think, oh can’t drink tonight cuz I’m taking tabs tonight & then be knackered for days after especially in the heat. Is something bad going to happen if I stop them on this occasion?

Thanks in advance!

Hello !

First time I’m posting and openly discussing about my prolactinoma diagnosis I have to admit that I kind of tried to avoid sicussing it with my family as it’s honestly not easy, but for the past few months I started crying every time I would bring the topic with my partner or just thinking about it so I wanted to read some of your testimonies about your own diagnosis and how you managed it specially the medication !

Maybe that help me feel a little bit more comfortable and not as emotional.

I was diagnosed with a micro prolactinoma measuring approximately 7mm when I was 21 years old, got the operation 3 month after the initial diagnosis after 4-5 years of doctors not knowing why I didn’t have my periods, after that everything went great, my prolactine levels were perfects, my periods came back and my cycle was about 28 days, no other hormone disturbance thankfully.

About a year after my operation I started having longer cycle and my period disappeared again, after a blood test my prolactine went from 4-5 after the operation to 126 again (like before my surgery)

My endocrinologist talked to me about taking cabergoline at first I refused I was really scared to take a medication
(I’m absolutely not against taking a medication but I was scared of taking it for years as I never took medication that long)

Anyway we discussed about it and I agreed but my endocrinologist told me that I needed to take it at least until menopause (I’m 23 years old) when I asked him about maybe taking it for 3-5 years and then trying to stop it while being monitored obviously,
he told me that he preferred not to stop it until at least the menopause but to space out the dose like a pill every two weeks or three instead of 1 a week.

Honestly I think that was the hardest part, when I had my prolactinoma the only symptom I had was just amenorrhea, now with the medication I’m always tired, I can’t do my sport session like before, I have hot flash, and I have nausea…

I’m also scared of the mental side effects that are described, I don’t have any but it scares me.
Honestly for the past few months I just wanted to stop taking it and I wanted to stop any consultation with my endocrinologist I know it’s not a good idea, I’m not asking for any medical advice, but I wanted to know how did you accepted that?

I feel I need to do my “grief” of the life I had before the medication, and I feel like I’m not accepting the fact that I’m “sick” I don’t like this word but I never been someone with health issues and now that I’m always tired I feel like I don’t recognized myself, and also how did you do to mentally “accept” the fact that your going to take a medication for so many years ?

Maybe if you also have some advices to talk to about it with your partners or family, they’re very supportive but every time they ask me how it’s going I say “fine” because I don’t want to complain.

Thank you very much for reading my message 🙏🏻

I am male, in my early 30s, had a sudden bout of illness this summer. Was diagnosed with Pituitary Adenoma and secondary Adrenal Insufficiency. I do not know specifically if it is a prolactinoma but my last day in the hospital, my Testosterone was 10, prolactin don't remember but was on the high side.

It's strange how fast I became ill and everything crashed. I had a sexual partner earlier this year and never noticed anything other than mild issues in that area. But I definitely have them now and realized that when I came home.

They say I can't really be treated for it until they get it out and the whole process is taking a while. It makes sense, they don't want to mess up my body's chance of creating it naturally again.

But my whole mentality feels different. I feel like I have an old woman's hormones. Strong depression, lack of focus and creativity. Lack of sexual interest but definitely lonely and very much interested in girls. The sexual stuff is shitty enough but mentally I just don't feel like myself. I know it's just a couple months to get through but I wouldn't wish this on anyone.

Forgot to say this is all happening in my first year of adulthood getting sober from drugs and alcohol. It's been a wild year.

This forum was so helpful when I got diagnosed three months ago that I just wanted to give some hope and tips to others scrolling here after diagnosis. I got diagnosed in May after I started having vision issues and I went to ER for possible stroke. They found the tumor. I was lucky in that it was small but still caused vision issues. I say lucky because many battle fatigue, weight gain and headaches for years and doctors ignore the symptoms. I had a curtain of darkness around the periphery of my right eye and my vision changed in my left to being near sighted out of the blue. Because of the vision issues, the ER did a lot of tests and found the tumor.

My son has a top endocrinologist in Orlando, FL and he agreed to see me. My son also had high prolactin that was discovered in high school along with other endocrine issues so maybe there is a genetic link as I’m 59 and now being diagnosed as well. My prolactin was 147. I started Cabergoline in May at .25 twice a week for two weeks. then increased to .05 twice a week. Three weeks later my prolactin was too low so Dr decreased to a full pill once a week, and half pill once a week. Like many have reported the full pill knocked me out for two days, although my migraines were so much better. I switched to half a pill three times a week and that has been a game changer. Same dosage overall for the week but I tolerate it so much better. So that’s an idea for others

The dr also increased my estrogen which helped a lot. The weight did not fall off overnight. The endo added a micro dose of a compounded form of Zepbound to try and turn off the hunger hormones that gets out of whack with the tumor. It’s been 3 months since I started treatment ( only a month on the GLP1) and I‘ve lost 8 lbs. My energy is better. I still get totally exhausted the day after any social event but I’m just trying to rest on those days and not fight it. I do have a lot of brain fog but migraines are gone. i had been taking way too much Excedrin Migraine and learned I was probably having rebound migraines Thanks to the Cabergoline I was able to wean off the Excedrin and now I’m very cautious about reaching for any form of Tylenol. After three brutal days, I was successfully weaned off it.

So I’m feeling hopeful that things are moving in the right direction. Thanks to everyone that shared their journeys on this forum it really helped me so I hope I can pay it forward

i’ve been on it for 5 weeks and noticed at certain times throughout the day it will either feel like my chest drops and my heart full on skips a beat that takes me breath away OR my HR will shoot up and make me lightheaded from doing very little. i went up some stairs the other day and felt so lightheaded after, today i was folding clothes and putting them away and my HR shot up to 132🙄 had to sit down on the floor and breathe to bring it back down… i never had issues with this before cabergoline.

I haven’t had a period in over 3 years due to my prolactinoma tumor. I think my period is starting soon and i’m experiencing the worse cramps of my life! I don’t remember my periods being this bad . It feels like someone is punching my ovaries over and over again in waves. Does anyone else experience intense cramps+nausea? 😭😭

Very long story short, I (43M) have a prolactinoma (P level 2,000 when found), and have been taking cabergoline to treat it. So far side effects are fatigue and pain behind my right eye, but nothing completely debilitating. But what is debilitating is the depression I feel. I've been depressed my whole life, so this is nothing new, and its suspected I had this tumor since I was a kid.

But what's different is that I'm in a deep dark place from wishing I could have discovered and treated this earlier in life. I'm 43 but I feel like I'm 83. No energy for living whatsoever. I can barely make it to the coffee pot and to the grocery store on these weekends of beautiful weather. I'm socially isolated, I've lived alone for 16 years, don't have any close friends, no family, haven't dated since GWB was president. I'm by myself all the time when I'm not at my job. If I'd found this earlier maybe I'd have had the juice to make different decisions. Go for that job. Approach that girl. Take those risks.

I'm working with a very nice care team. They say I should feel so much better next year. For now though, I'm in tremendous emotional pain. I'll be 44 next year. An middle aged guy who never got to be young, because I had something I didn't know I had killing my desire for both love and life. Maybe these feelings will pass and I'll find some peace with it.

But mostly because I can't talk to anybody about this and half to deal with it alone, curing this thing is going to be a bittersweet experience, and right now I'm in a very dark, regretful place.

I'm 30F and recently found out my prolactin and macrolactin (I think that's what it was called) was elevated. The endocrinologist believes I could have a prolactinoma. The wait time for an MRI is around six months. In the meantime she prescribed me caborgoline. I stopped breastfeeding over a year ago and lost 30lbs. It was very difficult losing the weight. I'm still 15lbs heavier than I'd like to be. I struggle just to maintain my current weight. Despite a consistently healthy lifestyle.The doctor was pretty certain it would help with my fatigue, mood swings and long or absent cycles. She said the weight loss depends. What was your experience? Did anyone's breasts shrink? I just had a breast lift post kids and don't want to deflate again.

I had an endocrinology appointment today. I had been getting worsening side effects from bromocriptine (waking up feeling like my face was tight around my eyes and sinuses, headaches waking me up every couple hours every night, nausea, dizziness, fatigue, etc.) since April and about a month and a half ago switched to cabergoline weekly which has been better but also had side effects (hot flashes, headaches but not nearly as bad as before medication and not waking me up but still interfering with my daily activities, mood swings, weight gain, nausea etc.). I talked to my endo today and because I’m of “childbearing age” she doesn’t recommend surgery.

For context I have a 9mmx8mmx8mm tumour.

She very reluctantly did send a referral for a neurosurgery consult today. Thinking about the option for surgery I just want to know anyone’s experiences and thoughts about pursuing the surgical route vs. long term medication management. I understand surgery is surgery and it does have huge risks but with the medication I just can’t see any long term future where my life just doesn’t revolve about managing side effects and this tumour impacting my daily life.

hi all. I posted a bit ago regarding my thoughts that I’ve had a prolactinoma since childhood

now my question is for women who also think they‘ve had this since at least puberty. this is kind of embarrassing for me, so please keep the respectful comments thank you!

but for those women, did any of you develop more tubular shaped breasts?

in addition to not getting my period til I was 16, and it being light or absent for the rest of my life, my breasts are more tubular and left a bit bigger than right. I always thought I was just unlucky in this way.. but now I’m wondering if a delayed and stunted puberty could have caused this

and, has anyone with this shape gotten a fuller breast or changes in shape on cab? I’m sure it’s too late but there is a flicker of hope..

I took Naxdom (NaNaproxen and Domperidone) a night before my hormonal test. I was experiencing severe migraine and vomit at night so I took the med and went for the tests in the morning. All my other hormones were normal except Prolactin. When I told my doctor that I took med, she said nothing happens with a single tablet. My prolactin was 58.3. I am not any med for it. I was dubious back then but as the doctor said it doesn't interrupt the accuracy, I was like OK

Now, after 10 months during an eye check up, the doctor said you have scratches in your eyes basically corneal SPK+ he asked 2 years back to get autoimmune tests done and now he asked about hormonal tests. I said prolactin was high. He told me to get Brain MRI done.

I don't know what is happening. I am planning to get my prolactin checked again. Right now, I am on my period but I have migraine again so I didn't go for the tests. But all this is so confusing.

I am 24:)

Took my first dose last night. All day I've had a migraine nothing will touch, nausea I had to take Zofran for. Crying for the hour in between long naps, dizziness, weakness, stomach pain.

I don't know if I can spend an entire day once a week completely out of commission. Did anyone who struggled with side effects notice any improvement after a few doses?

Hi everyone,
I was diagnosed with a small pituitary microprolactinoma, 5 × 4 mm, with prolactin around 42 ng/mL. I started cabergoline about 6 to 7 weeks ago and take 0.25 mg twice a week.
The strange thing is that I have always had regular periods my entire life and have never skipped one. Now I am on cycle day 61 with no period, and I am really worried.
Could this still be from prolactin or hormonal changes while starting cabergoline? How long did it take for your periods to regulate after starting treatment?
Did anyone else have completely regular periods before diagnosis and then suddenly have a very long cycle?