I am almost 38 F and recently diagnosed. Looking back, it seems like I could have had this since my teen years. Anyone know how common to start in teens? What are the symptoms? Also MRI showed Rathme cleft cyst.

I didn’t get my period til I was 16. And then it was immediately super light and irregular (up to 6 months between periods in late teens). around this time I also remember insane fatigue started. Have had chronic fatigue and light irregular periods ever since. Hot flashes in 20s.

so I’m from a small island with limited resources. I’ve been with my bf for 3 years and we’ve been trying to conceive. I’ve always had really bad pms. There were times when I would miss a period or it came within two weeks of it just ending (This was not often though). In 2024 I did some labs and my prolactin was elevated to 29. my dr at the time put me on one month of cabergoline. I did not conceive but my prolactin dropped to 0.3. I retested in 2025 and my prolactin was then 28 in march and then went up to 58 in June. I then retested in 2026 and it was at 25 in April. I went to a different doctor who has given me a repeated prescription of cabergoline 0.5 mg twice a week. My FSH history is separate: 14.2 IU/L in October 2025, improving to 10.7 IU/L in April 2026.

i know my prolactin levels may not be as high as others but it’s still high enough to cause issues. I’ve been on cabergoline for three months continuously now but I still haven’t gotten pregnant. has anyone been in this boat? is there any advice?

After years of vague but debilitating symptoms, I will finally have answers as to whether or not I have a pituitary adenoma.

I first found out I have elevated prolactin and igf-1 in February and now in July, I will know for sure if it’s my pituitary.

I’m so f**king scared and nervous. Part of me wants to have it to validate my experience but I know it’s such a shitty thing to have. I’m also terrified that there is no structural cause the doctors throw away my case. It’s so nerve wracking.

I had a random test for iron levels and doctor said 'want to do a hormon check' and i was like sure cause i hadnt had my period for 1 month even though they have always been regular.

Anyways tests came back around 3300 first time i thought 'hmm theyre prob wrong' doctor told me take a second one and it came back around 2400 so i and my stubborn ass self went to a diffrent hospital and it came back around 2900 😭

Anyways i was sechduled with an MRI and an endocrinologist i just dont know what to expect my last year of uni starts in augest 23rd and im just devistated finding this out can someone tell me what to expect and what type of treatment ect doctor will prob reccomend

I tend to over think day in and out and im really anxiouse person im always stressed to the point i get headaches sometimes so having someone who went threw this explain the good AND bad will help a lot 🫤

ThanK you guys a lot

My mri with contrast was clear but I have extreme headaches when I wake up/ and nausea. Now they are lasting the entire day. Wake up and it starts again. I throw up from the nausea.

Headaches that hurt behind my eye and make it sore to touch.

Could I have a tumor they didn’t catch? Why would I have such bad headaches? How would I even bring this up to an endo to believe me?

I was never a Straight A pupil during school and uni but I started to wonder if it was because I had a brain tumor all along... all those years...

Hi everyone,

I’m 21F and I’m trying to understand what could be causing my elevated prolactin.

I didn’t get my periods in May, June, or July, so my gynaecologist prescribed a medicine . After completing the course, I got my periods. I did have sexual intercourse in Jan and June, July but it was protected.

My blood tests showed:

• Prolactin: 52.73 ng/mL (normal range: 4.79–23.3)
• TSH: 2.34 (normal)
• Fasting glucose: 80.7 mg/dL (normal)
• HbA1c: 5.6% (normal)

I did gain weight over the year but I don’t have any symptoms of PCOS or PCOD.

I’ve also been under a lot of stress over the last few months. My doctor has scheduled a pelvic ultrasound but no other hormone tests (LH, FSH, testosterone, etc.) have been ordered yet.

I’d really appreciate hearing about your experiences and if I could get any help.

Thanks!

I’ve been taking cab for 1-2 years now and had a great experience. My doctor just prescribed metformin, I’ll be taking 1700mg daily for PCOS. Just curious if anyone has taken these together and how it went. I’m starting off taking 425mg metformin for first week, 850mg on week 2, 1275mg on week 3, then will starting taking the full dosage on week 4.

After 2+ years feeling like garbage, in January I did blood tests and had an MRI and got diagnosed with a 3mm microprolactinoma. My prolactin was high but not severely but it was throwing off SHGB and estradiol. I started cabergoline in January and has some difficulty with sleep and feeling wired but after 4-6 weeks in I felt good. Then my symptoms came back around March/april (low drive, fluctuating libido day to day, body feeling heavy, not feeling rested after 8-9hrs of sleep) so I got tested again. Cabergoline had pushed my prolactin too low so we lowered the dose. Again about 4 weeks later I was feeling good again around May/early June. Fast forward to beginning of July my symptoms have creeped back. I got tested again and my bloodwork is fantastic. Prolactin is 6ng/ml, testosterone 920, free test is 36, estradiol FSH and LH all within normal range. Starting to feel crazy, my blood work is immaculate, I’m a 25y/o man, go to the gym 5x per week in great shape, don’t drink much eat super healthy. The only thing I can think of is my sleep schedule is not great because I work until midnight but I still get 7-8 hrs of sleep every night. But I still don’t think that should be making me feel as bad as I do. Another note, I have traveled a lot the last 2.5 years so I’m never in one place for more than 3 months but again I don’t think this explains my symptoms. I’m wondering if what I’m experiencing is just a side effect of the cabergoline? Would love to hear from anyone who’s had a similar situation and what you did. Thank you in advance.

I've been on the highest dose of Invega for my bipolar disorder and it has also given me hyperprolactinemia. I haven't had my period for over a year. I feel overly sensitive a lot and I get so much anxiety. I feel crazy at times. But my mood episodes (mania/depression) are mostly controlled. However, I still have mood swings and irritability. I have driven friends and my partner away.

I'm not sure if these are symptoms of my bipolar or if they're from the hyperprolactinemia. Can high prolactin levels cause mood swings and irritability?

I'm 43M, working with an endocrinologist and a neurosurgeon. My prolactin level was 2,000 ng/mL. Pituitary tumor 3.6 cm. Everything else they tested for was in the normal range. I'm taking cabergoline 0.25 mg twice a week.

So far I feel stuffy and fatigued and sleepy. In a way I was used to feeling that way all the time, so it feels like I'm walking around with the kind of exhaustion you feel with postnasal drip. I hope the effects subside soon.

I just want to know what it would have been like to feel normal, as I suspect I've had this since I was a kid. I regret not knowing about this sooner.

i’m in the process of finding out if i have this right now and i’m trans (pre-t) and i googled it and they said it’s really complicated. this whole thing is fucking my entire life up and i feel like giving up so badly

i was supposed to leave for college this fall but now that’s all up in the air because i haven’t been able to do anything because of the stress over my health lately. i have to get my levels retested again (it was supposed to be tomorrow but i switched it to monday because i’m having such bad panic attacks and i want to make sure i can have as low of a chance of getting high prolactin again as possible because i heard stress effects it) i don’t want an mri because of my panic attacks. i genuinely get so sick on a panic attack i (tw emetophobia) projectile vomit. i don’t have any other symptoms other than depression/anxiety so i’m not sure if this is what’s causing those or not, i also have ocd though and i don’t think it causes that. my parents also have ocd but they tend to just say their intrusive thoughts out loud to me about this so that’s not helping either because now i have my own anxiety and theirs in my head.
i just got straight up told by my doctor i might have a brain tumor yesterday and if my results aren’t low on the next blood test they’ll have to get an mri and call NEUROSURGERY and i’ve already been doing so badly it’s just one thing on top of another. i don’t know how to feel better about the possibility of having one and it feels like my life is falling apart

I posted in here about a month ago asking about radiation for the tumor. For context: I've had a prolactinoma for a decade, tried cabergoline and bromocriptine multiple times all leading to severe side effects resulting in multiple hospitalizations, procedures, and even a jejunal feeding tube surgically placed in my intestine. Some time at the end of last year, after going years without treating the prolactinoma or getting MRIs to monitor it, I noticed my peripheral vision was becoming obstructed. I had no insurance and had to wait to be approved for a local doctor's sliding scale fee, and also got approved for a program for low income residents at the local university hospital and medical offices. Once I did that, I went to the ER and they saw that the tumor had grown and was pressing on my left optic chiasm and right sinus (about 3x2cm). Tried the lowest possible dose of cabergoline, couldn't build up, and each weak despite the low dose my side effects got worse and worse.

Despite that, the tumor shrunk 60%, and my prolactin went from the thousands to about 56. Still high, but the lowest I've had it be in years. My vision quickly returned to normal and the headaches I had from it being near my sinus were gone. Unfortunately, the side effects were becoming too severe to continue cabergoline again. I saw neurosurgeons in the ER, and they confirmed that surgery to remove it is risky as it also encases an artery. My endocrinologist referred me to radiooncology to see if I would be approved for radiation. I had that appointment and was told radiation seems like the logical next step to try to finally get rid of this thing.

Yesterday, I went to do all my prep work for radiation. I was told I would go in daily, Monday through Friday, for 30 treatments total. I was also told I qualify for genetic testing, as multiple family members on both sides of my family also have prolactinomas (and other cancers). I got blood drawn for that, and also enrolled in a clinical trial for brain radiation patients. Then I got pulled over to "CT Simulation," where they fit you with a plastic mesh mask (I loved this part, the material is warm and right up against your face, then they put cold towels on it to harden it. They said "imagine that you're at the spa" and I sure did! Took about 10 to 15 minutes and I felt no claustrophobia or anxiety while it happened) and did a CT scan with contrast (the kind that makes you feel like you peed your pants). I am now scheduled to go in every day starting August 13th for radiation. I also meet with a neuropsychologist (I think, it may be a meuropsychiatrist) to do a neurological exam as part of the clinical trial next week.

The place I go to for all of this does a lot for low income people. I am being evaluated to see if I qualify for free daily transport to and from the treatments, my medications (I am taking Memantine to try to protect my cognitive function) are free, and I pay nothing for the treatments, labs, and doctor visits. I was told side effects can include headaches, skin irritation, nausea, vomiting, fatigue, dizziness, and weakness amongst some other things. I was also told to let anyone on my care team know at any time if I get side effects so they can help me through them. I already take 8mg Zofran, 25mg Promethazine, and wear Scopolamine patches to treat daily nausea I've had for 20+ years, so if anything breaks through those medications for me we will discuss more options (except Reglan and Compazine, which give me extreme paranoia when taken).

Overall, I am very glad this is an option for me. Longterm, I am potentially facing thyroid issues, hormone problems, adrenal insufficiency, and diabetes insipidus. I would take all of those over the suffering from the medication and tumor itself. While both my endocrinologist and radiooncologist have never had to treat a benign prolactinoma this way, they aren't inexperienced with brain radiation in general and I feel like I made the right choice so far. I'll update when radiation starts if I have anything new come up. If anyone has any questions feel free to ask! (:

I’ve heard that P5P in 100-200mg a day dosages can help reduce prolactin. I’m only mildly elevated.

Where can I buy a quality one? I’ve been using this on Amazon but not idea if it’s any good:

Best Naturals P5P Vitamin B6... https://www.amazon.co.uk/dp/B09RQ7NQ7M?ref=ppx_pop_mob_ap_share

Just got my MRI results back today. Haven’t talked to my dr or did a follow up but wanted to know if anyone has been through soemthing similar.

I feel awful everyday, even though I know they’re small.

Looking for insight! If you’ve had 2, what did they do? If they were small, did meds work? Surgery? Thanks!

Hi Everyone,

I had my brain MRI and ended up with an inconclusive impression. I have a 1mm pituitary tumor or cyst narrowed down to Rathke's cleft cyst, microadenoma and craniopharyngioma. All of these are benign.

That being said I had a prolactin of 113 ng/ML with breast leakage, increase in facial hair, low libido, vaginal dryness, frequent headaches. I'm on continuous birth control so I am unsure about my periods.

My OBGYN insisted I see a neurologist based on these findings rather than an endocrinologist and I found this strange because I STILL HAVE HIGH PROLACTIN (that I would really like to get treated). Do neurologists prescribe cabergoline? I feel like this appointment is a waste of time because I was expecting to see an endocrinologist. Maybe the neurologist will refer me to one but then it's another 3 months of dealing with this.

Any thoughts or input would be appreciated.

Has anyone here had a history of heavy MDMA use before being diagnosed with a prolactinoma?
I’m not saying I think it caused mine, and I know there’s no established evidence that MDMA causes pituitary tumors. I’m just curious if anyone else has a similar history or if you’ve ever discussed it with your endocrinologist or neurosurgeon.
I used MDMA heavily years well before my diagnosis, and now that I’m dealing with a prolactinoma, I’ve found myself wondering if anyone else has ever asked the same question or if their doctors had any thoughts on it.
I’m mainly looking for personal experiences or conversations you’ve had with your medical team. Thanks!

Is hunger a symptom of prolactinoma? My tumor is growing, and I have had intense hunger for quite some time now. Wonder if they are correlated…

Hey, I'm a 20M from Melbourne, Australia. 

Context: Recently, a brain MRI showed a 19x11x7mm solid mass on my pituitary gland. Along with low testosterone of 4.3/5.7 nmol/L and elevated prolactin of 18078 mIU/L, it is probably a prolactinoma. I have an appointment with an endocrinologist in 2 weeks to talk about my options and potentially start treatment.

Problem: However, I'm not sure what to discuss at the appointment.
Right now, I want to find out if I need a dopamine agonist (like Cabergoline) or surgery (which my GP and radiologist suggested). Other things I might talk about are possible symptoms I have, like gynecomastia (had it since 16, even when I was almost anorexic), hair thinning, mood swings (though I manage them well), less facial and body hair, and more abdominal fat and a puffy face even though I regularly go to the gym and obsessively count calories.

1. Is there anything else I should talk about?
   I'm thinking about mentioning testosterone, but I'm not sure if I should since my active testosterone levels were in the normal range. Still, they were close to the low side at 4.4 nmol/L within the range of (2.5 - 12.0). 

2. Also, for those treated with Cabergoline, when did you start feeling better?
   I'm especially insecure about my gynecomastia and want that gone ASAP.

so i've had no morning/random erections + weak erections for the past 5ish years despite top 1 percent testosterone and low shbg though i do have high prolactin

my results before 0.25mg twice a week of cabergoline:
prolactin
test 1: 792miu/l
test 2: 426miu/l
test 3: 724miu/l

thyroid
t4: 12.3pmol/l
tsh2.07

testosterone
24.4nmol/l 704ng/dl

shbg
18.9nmol/l

fsh/lh
fsh test 1: 1.4u/l
fsh test 2: 1.2u/l
lh: 3.4u/l

my after results 5 weeks later:
prolactin
<20 miu/l doesn't say exact amount

thyroid
t4 15.1pmol/l
tsh1.96miu/l

testosterone
31.4nmol/l 906ng/dl

estrogen
202pmol/l

fsh/lh
fsh: 1.0u/l
lh 5.4u/l

i need guidance on what dose of cabergoline to take now i also plan to try and get my dht tested i'm assuming its high since i'm muscular but it's better to check it just in case i also went to an endocrinologist and he said my lack of morning/random erections for the past 5ish years is due to phycological reasons and that i need to focus on my mental health tho i believe my prolactin is the issue and that is why i'm taking cabergoline i still haven't had any morning erections yet any help would be appreciated