r/Prolactinoma

I got diagnosed with prolactinoma when I was around 16 and I have been taking the medication cabergoline, I am 19 now

I was just wondering if smoking weed will effect my hormones or make it worser

I have been smoking for a month straight now and i missed my period and am worried if I fucked up my levels

Or did I just miss my period and am being paranoid lol

So far am gonna start doing it less for safety reasons because I dont want my tumour to grow again :(

Also! I have not had sex so i dont need a pregnancy test lol Am just hoping am late to my period and not anything else

hi. im 17f and was recently diagnosed with prolactinoma. i’ve been on cabergoline since march. i hate my life. i just want to be normal. i know it sounds crazy but i want my period back. ive not had it since i was 14 and that was the only one i had and it lasted a day. i have also put on about 25kg in the past 2-3 years. it won’t stop. and i eat completely normally. i used to lose weight so easily and now my bmi is like 35. i’ve always been thin until this.
first question, when will i get my period back? and i have an endocrinology appointment in august. can i mention the uncontrollable weight gain and see if he can do something about it?
i need to have reassurance.

À la suite d’un autre rendez-vous avec l’endocrinologue, malgré le fait qu’il n’y ait pas d’adénome trouvé, elle veut me traiter pour la cause de la prolactine élevée dans les 900 et fluctuante. Pensez-vous que cela permettrait d’aider elle me parle de Doxx à très petite dose avez-vous des retours sur vos améliorations niveau symptôme fatigue etc. double de l’humeur tout ce coup pouvez me dire merci beaucoup, je suis dans l’attente de vos réponses.

my baby is 5 months old and i am in the process of drying to my milk. i have a huge oversupply so due to the pain level, my obgyn gave me Cabergoline to help dry it up. i am supposed to take .5 twice a day broke in half. so today i have only had .25 and i need this med to wear off asap- holy shit. i am anxious, scared feeling, everytime my baby cries im spiraling out and scared he wont stop because im so anxious and ragey. I just also took my melatonin after forgetting I took this med.

how long will one dose take to wear off? whats the chances of me sleeping tonight?

I am having difficulty on .5 cabergoline once per week and 7.5 mg Lexapro each day. Is it the meds not playing well with each other? The Cabergoline? I feel ready to fly off the handle at a moments notice. I used to be described as “passionate” but after a blowup at work I am now being described as “scary”.

Was I a fool to try to keep working normally while going through all this?

Has anyone else dealt with issues at work because of this?

I have a coworker whose husband had a brain tumor too, so she knows it’s not a big deal really, anyone have people like that they work with?

My boss is amazing, basically says whatever my doc says I need I get. Huge asset to have in my quarter.

But I’ve never had to get a letter outlining reasonable accommodations. I was raised in a household were children were seen, not heard (and I’m a middle child), I am not used to being accommodated. I’m used to sucking it up, doubling down, gritting through it.

I am the guy who just made it happen when it needed to happen.

Now I can’t trust my own brain, my own instincts, my gut reactions. I used to laugh at the idea of retiring and joke that I would die at my desk- I’m a lawyer and I don’t need to walk or move since I just need my brain!

And now they’re telling me I might be qualified for disability, because lawyers need their brains. But I’m not disabled, am I?

If I can’t sleep through the night, can’t get up on time, can’t make it to work on time, can’t concentrate, have emotional moments out of nowhere multiple times an hour, and am easily distracted, that’s not disabled is it?

Is it?

So much time, so much effort, so much money to develop my brain to process faster, hold more inside, and eloquently argue on the fly in real time when the stakes were high. I am a litigator. Was a litigator.

Now I’m unreasonable, unsure, and unable to articulate.

How do I do this?

I am meeting with my primary for a 6 month check in. After reading this page I realize not everyone’s journeys are the same, and mine has been a challenge.

But where to go from here?

The cabergoline shot my prolactin levels down, but my next MRI isn’t until November. Do I stay with the cabergoline or try something else? Is the something else just a different nest of hornets to kick?

I don’t want to be angry anymore, I don’t want to be ready to jump down people’s throats, I don’t want to not let things go.

I want to know what’s going on with me.

I was diagnosed last year after a few years of issues that were written off as “getting older” but thankfully I had good insurance and kept at it. Changed my entire diet and tracked food, entered a weight loss competition 3 years in a row to track that, all kinds of stuff. Zero libido prompted me to demand answers immediately, and an urology appointment/prolactin test later showed me at 300ng, which seemed a bit high.

They got me on the cabergoline and it felt like my testosterone went up a bit, which was good, but feels like it has weirdly plateaued. Initially it was like the flood gates opened, and I admit I was looking at porn more than I had, but also dang did it feel good to have a libido again!

Now I just feel insanely on edge. Like all the time. Not a good look, and I do not like being the guy that lashes out at people.

Just looking for anyone with experience who may have been where I am. I know it’s different for all of us.

42 years old, male, 3mm adenoma.

Update: the appointment went amazing. Thanks to you all I was prepared going in and she even said “that was the best summary you could have given me.” It took 3 times to get it all out but writing out my thoughts beforehand was the best thing for it.

She’s taking me off the low dose of Lexapro and putting me on 20mg of Prozac daily. She ordered me to come back in a week and told me I can’t go to work until she clears me at that appointment.

She listened to all my concerns and heard me. She knows me from before all this so recognized the changed behaviors I described and is concerned about the compulsive behaviors, sleep, and angry outbursts- as well as the intrusive catastrophic thoughts.

So for what it’s worth- talk to your doc. I’m going to have multiple appointments over the next month until we get this dialed in and all options are on the table.

Also- I’m very likely going to have to go on long-term disability. I was in denial before and thought I was Superman, but this is too much to just grin and bear it.

Hi everyone,

​I’m posting on Reddit for the very first time because I really need some advice and shared experiences.

​I’m in my early 30s and was diagnosed with a prolactinoma when I was 20. For years, I’ve been putting off the idea of pregnancy because honestly, it feels incredibly daunting with this condition. I have so many questions running through my head: Is it even possible? Will it work? What are the actual risks?

​For context: I haven't been on any medication for about ten years now, and my situation has been fairly stable. I do get my period every month, though it can be quite irregular at times.

​Now that I'm seriously considering starting a family, I find myself feeling really anxious about it all. I would love to hear from other women who have been in this exact position. What were your experiences trying to conceive and going through pregnancy with a prolactinoma?

​Thank you so much in advance for sharing. It really means a lot.

This may be a little convoluted story below but in summary I need advice on:

What happens when my cabergoline runs out now my prolactin is in normal range?

Will my ED problems ever be fully resolve? Do I need to do something extra?

I live in Germany, in my late 20s. Primary doctor refused to prescribe me cabergoline “I don’t want the risks on my shoulders”. Went privately to an endo with all my blood work/brain scans but told her I’m only taking the appointment if she is likely to prescribe me cabergoline. Blood: 65 ng prolactin. MRI: 5mm

Told her I cannot afford regular appointments or private blood tests. My earliest publicly health (free) endo appointment is scheduled for late November.

She put me on 0.25mg cab twice a week. I had little to no side effects so I decided to take 0.5mg twice weekly instead because I’ve suffered low libido and ED issues the past year (or longer) and I couldn’t take it anymore, it fucked up my recent relationship and subsequently lead me to heart break, depression, and now I can’t focus and I’m stressed while I’m in the final year of my PhD. I asked my main doctor to test my sexual health 3 years ago because of libido issues and he only measured testosterone, I consider this a failure on his part, and I can’t say how long I’ve had a prolactinoma for but I suspect it became significant 1 year ago.

Anyway. After 6 weeks medicating I had another blood test, prolactin is below 10 ng now, libido is pretty high but I think it’s more that I’m using it to numb my life problems.

Maybe tmi but, still have mild ED, like I’ve never been as hard as I used to be and I can lose it rather quickly. And getting visually stimulated and getting random erections very rarely happens. Also, never seen this mentioned but when you’re not at maximum firmness, stimulation is way higher and so it’s much harder to last longer, but that’s just the cherry on top of all other issues.

So what do I do? I guess I’ll go privately once more when the cab runs out and maybe switch back to the low dose.

As for ED, people suggest all sorts of things, nitric oxide boosters (natural, or drugs), exercises etc but my whole life I never did any of that and I never had any issues getting or maintaining erections, until I was 23 ish, after I had covid, after moving country, after maybe developing the prolactinoma, and then having relationship issues, it all piled up at once.

With certain women however I had literally 0 issues. Last time that was the case was September 2024.

Any advice is welcome. Please save me.

Does anyone have any symptoms like

brain fog
trouble finding the right words
Forgetfulness
Clumsiness
Extreme tiredness

I often mix up phrases now, say the wrong things and I sometimes need a minute to say a word etc it’s slightly annoying as I was never like this. I first noticed this when my prolactin levels started getting higher and higher

Also did anyone have a loss of ability?
For some reason I just woke up and I literally forgot how to drink and eat food?? It was the weirdest thing, like the connection in my brain was just gone??? I relearnt how to eat but it was still traumatic
funny enough that’s how I found out I had this 11mm prolactinoma after they dismissed it and said it was nothing but a small cystic mass.

I don’t know anything about these levels. I am on 2 SSRIS and on 2.5mg of antipsychotics. Is it possible that’s what’s causing this? But i’ve been dealing with symptoms since i’ve had a menstrual cycle

I have prolactin 400 mIU/L. estrogen 18 pmol/L, testosterone 13 nmol/L, how to lower prolactin and increase estrogen and testosterone. man 28 years old

Hi everyone I have been diagnosed with hyperprolactin for a year now due to the pituary tumor. I have been taking cabergoline first 0.5 a week then 0.25 per week, my endo extended the day to 0.25/ 10 days but the levels got high so now keeping it at 0.25 per week.

At the beginning I also had a high level of Tsh but now all normal. All the other things are okay, Im not insulin resistance nor do I have high levels of cortisol.

The only thing I am struggling is losing weight, not a sigle kilo for a year

I eat well not keeping a very specific diet but all the calories under controll also i do Dancing 3x/week and 2x ems traning, nothing seems to work and I am losing hope in everything. Anybody had the same issuse, I would love to hear some tips

Hey, 36F I haven't been diagnosed yet, I am waiting on my MRI and Endocrinology appointment but my GP, Gynecologist and myself are convinced it's a prolactinoma, based on the blood tests. My symptoms are as folow:

- Extreme fatigue

- light sensitivity

- headaches/migraines

- light headed

- hot flashes

- noise sensitivity & smell (probably from the headaches/migraines)

- some nausea

- increased water intake

These come and go, I have 1 good day and then 3 bad ones.

I take painkillers for the headache/migraines, but other than that nothing. Can you share what worked for you to manage the symptoms above? Like the tiredness and light sensitivity?

I’ve been trying for conceive for 2.5 years as a 30F & have been taking 0.25mg of cabergoline twice a week for 12 weeks. My prolactin level was 108 ng/mL when I started and now 4.1 ng/mL, which is showing abnormally low. The ideal range is 4.79 - 23.3. Anyone experienced this before? What sort of effect on fertility will a low rate have? My doctor’s office hasn’t seen the results yet.

Mail order finally showed up, about to take .25mg in a few just before bed. Any advice or warnings?

My test results show 863 mU/L of prolactin. I (stupidly) consulted Dr Google and became quite concerned, so I called my actual doctor to check in. I was told (in no uncertain terms) that no one is available to speak to me today.

Is this something I should push to speak about today, or is the receptionist right to tell me it's nothing to worry about?

Hello! I am 38/f with three children. I was diagnosed with a prolactinoma in 2023 while I was trying to get pregnant. My only symptoms that lead to diagnosis were irregular no periods and occasional leaky breasts.

I am about to start Cabergoline due to elevated prolactin. I will re-test my levels in a month. Question for any other women, were there any other hormone tests or treatments you asked for in terms of balancing hormones? Being in my late 30s, I know perimenopause is around the corner, so I’d like to be proactive, but I’m not sure what questions to ask my Endo.

I’ve had weight gain and difficulty losing tied to this. So, I’m hoping cabergoline and hormone balancing may finally help me make some progress.

Grateful to find this community!

I am 30M. Currently I am experiencing exhaustion to the point I can barely make it through a day without a nap, low libido, difficulty gaining and maintaining erections and occasional headaches. My GP gave me a few tests and then I was recommended to an endocrinologist and he had me take another set of tests. These were basically the abnormal results.

1st test (2pm)

Prolactin 28.6 ng/ml

Testosterone 230

Free testosterone 4.4 ng/dl

LH 3.3 mIU/ml

FSH 2 mIU/ml

2nd test

27.7 ng/ml (9am)

Testosterone 545

Free testosterone 13.5 ng/dl

LH 3.6 mIU/ml

FSH 2.4 mIU/ml

IGF-1 81 ng/ml

The endocronolgist does not think I should get a MRI, I know the prolactin levels are only slightly elevated but has anyone had a prolactinoma at these ranges? I'm trying to figure out next steps.

I have elevated prolactin levels (55 Ng/mL) and a 4mm lesion on my pituitary (via MRI). Went to an endo and she suggested I get bloodwork done in 3 months since it's small and probably isn't doing much😆. Plus I'm not lactating so all is well and merry! Previously, my GP dismissed this as well and directed me to a neurologist if I was actually concerned. I feel like I've been getting bloodwork for forever now. Also feel constantly dismissed.

Anyone with a similar story of having a micro adenoma and being dismissed? Just so frustrating and so tired of the waits and constant bloodwork for the same "let's check again in 3 months"... plus the lack of endocrinologists that specialize in this and their sparse appointment slots is sad (at least in my experience).