28 y/o male with 5mm micro. Been on .5mg cab 1x a week for the last 3 months and needed to stop twice due to side effects. HBP, panic attacks, tachycardia, headaches ect. I have POTS and cab really makes symptoms much more severe to the point I cannot tolerate it.

Was wondering if anyone had any experience/advice/opinion on replacing cab with TRT. I don’t care much about fertility and the only reason I tried to tough it out on cab was to get my testosterone up to a normal level. Could taking TRT instead do the same thing? My endo said that in the past some patients have opted to do horomone replacement when cab was not tolerated (didn’t specifically say TRT for patients in there 20’s was a good idea) And I did read that TRT without cab can actually cause the tumor to grow larger. Mine is small so how much larger can it grow before it becomes problematic.

To be honest the symptoms I had of high prolactin like anxiety, brain fog, low motivation ect were honestly much more tolerable then what cab does to me.

Any opinions and advice much appreciated. If this is a terrible idea and I sound like an idiot please do not hesitate to tell me I can handle it 🙏

We know that there’s a warning for cab when it comes to gambling or other addicting things, i haven’t thought much of this, but since I’ve upped my dosage to 1mg twice a week, I am wondering if others have experienced this side effect? Has anyone noticed cab change their behavior? If so and you don’t mind sharing how please share….

Hi all, waiting on my mri, but endo suspects prolactinoma. Symptoms are high prolactin level, low testosterone, very little muscle gain with 4 to 5 days a week heavy workouts. Also cannot get rid of bellyfat even at 1700 calories for weeks. Currently on my 3rd week of 0.5 of dostinex. Question is for the guys on Cab: How long before your testosterone levels were back to normal? Endo seems really chill about it, saying in March or so the levels should rise back up, but March seems a long time from now.

Thanks and sorry for the long post.

Just wanted to give some hope those undergoing treatment for Prolactinoma.

2 years pf Cabergoline use has reduced my tumor from 12x12x12 to these numbers. So for those struggling with this problem - hang in there, light at the end of the tunnel is closer than you think.

On a separate note, does the leftward deviation of the pituitary stalk cause an increase in Prolactin levels? Should I be concerned about this?

Hi ! So I just had my check up at 6 months and was told my prolactin is is 119 and I am considered high risk and have the potential of my brain hemorrhaging from the pituitary….

I know I can’t be the only person pregnant with a prolactin issue …. Does this sound accurate? Has anyone experienced this and if so what did your obgyn do for care to maintain or prevent anything from happening .?

I want to get w second opinion but I am too far along to switch care as I keep getting denied and my only other option is 1 high risk doctor in my area which I will obviously switch to as it’s needed but no second opinion available.

Did you end up getting a c section ? Preterm labor ? Actual brain bleed ? Safe delivery non c section ? Miscarriage this far along ? Etc ???

Please let me know . I am devastated and confused.

Ps . My endo said he doesn’t do pregnancy so he dropped me .

Also how do you know if you’re hemorrhaging ?

Has anyone had their prolactin levels rise after starting Cabergoline? I did the whole process and nothing really showed up on my MRI (they saw something but not sure exactly what it is because it’s so small so repeating the MRI in January 2025) but with the elevated prolactin levels my endo agreed to try a low dose of Cabergoline due to the severity of my symptoms. I’ve been taking .25 mg doses twice a week since 10/08. My last prolactin blood test level was 27.1 ng/mL (.1 ng/mL outside of being in the normal range finally) and the test was done on 11/5. Then today I went in to check levels again and my prolactin was at 41.2 ng/mL, which is not far off from where my level was at prior to Cabergoline. I won’t have an appointment with my endo until 12/26 but I feel like this is maybe something I should call the office to have her look at sooner?

Hello I am just a little confused and need some clarification. I (25F) recently went to my OB for my annual exam. I explained that my period have started to become Irregular and I am also have discharge from my breast even though I stopped breast feeding 1.5 years ago. I am Majorly fatigued, struggle sleeping and have occasional headaches. They did blood work and my prolactin is 38.1 ng/ml which from what I was researching is obviously above normal but not extremely high. They did an MRI and state to have have a Prolactinoma and is sending me to an Endocrinologist that I see in a week (December 9th). Has anyone had levels like mine and still have a prolactinoma? They never gave me measurements or anything. I just feel like from what I researched, someone with a Prolactinoma has much higher levels.

This is my experience with prolactinoma as a 34F.

My diagnosis started when I went to see the gynae in Oct 2024 due to missed periods - secondary amenorrhea(went almost a year without a period).

I have been having irregular menstrual cycles for the past 4 years however this was the longest ( I should have seen the gynae sooner but I was so scared of the unknown).

I have also been trying to lose the same 20 Kg the past 3 years made some lifestyle changes & joined the gym in Nov 2021 and have been active ever since and try to watch what I eat but the scale never budges.

The gynae recommended some blood tests as well as insulin resistance among plus pelvic and breast ultrasound.

All except prolactin came back normal. Prolactin level came back as 227.5ng/ml on 14.10.2024 the gynae diagnosed me with hyperprolactimea and told me this was the reason for my body shutting down as it was behaving like I was a lactating mother hence affecting ovulation.

The gynae referred me to do a brain MRI and explained that sometimes there are non-cancerous tumors in the pituitary gland that could cause this and also referred me to an Endo who would help with further treatment based on the brain MRI Scan results.(I was so scared the word tumor just let out alarm bells in my brain! Also an MRI is not a very interesting experience but to anyone who has to go through this just focus on breathing!!)

The MRI scan came back with results of a micro adenoma, I went to see the Endo on 30th Oct and was told that there was no need for surgical intervention (a very small tumor found 3.7*4.1mm) but was put on Cab twice a week and an MRI to be done after a year.

I explained to the Endo that I have been struggling with weight gain and fatigue and he told me that prolactin messes up with the body but once levels are regularised the body will respond normally and he told me to go for a another review in 4 weeks with a fresh batch of tests for prolactin and new tests cortisol and haemoglobin( ngsp&ifcc).

I started the medication on 04.11.2024 and did fresh tests on 29.11.2024 and my prolactin levels are now at 7.63ng/ML!!So happy and relieved.

Going on for my review this Wednesday to get further information on whether I will continue with the medication since the initial prescription was 30 tablets which is around 3 months worth of prescription.

Side effects I experienced from cab were mostly insomnia and occasional feeling down I guess from the lack of sleep but overall was so surprised and happy with the quick regularisation of the prolactin levels.

I am still struggling with fatigue and lethargy which I will bring up with the Endo and may be related to my weight.

I was however so vindicated when I got my prolactinoma diagnosis my body just felt off this year, constantly fatigued, sad ,the weight loss struggles & messed up menstrual cycle and I'm happy to have sought treatment.

All in all I am just hoping to get my life back on track and get back to a healthier version of myself in 2025.

I am also glad to end the year with some clarity on why my body has been off and the anxiety of the unknown is behind me.

I went to a hormonal doctor 6 months ago as I had a miscarriage last year and been trying to conceive since with no luck. She looked at my prolactin which was 398 mIU/L and told me she thinks it’s high and prescribed me Cabergoline.

I went home and decided to consult with another two doctors before taking it and they told me don’t take it, your level is fine and didn’t understand why she prescribed me this.

I did another blood test in August and my prolactin has since increased and is now 613 mIU/L ( still slightly within range but just) so now I’m not sure what to do. Something doesn’t seem right with it but different Drs say different things.

Do you think I should just take the cabergoline? Or should I do another blood test to check the levels again before looking any further?

Thank you

I officially have a date scheduled for my surgery! January 7th! I am both super anxious but also so excited to finally get this scheduled and over with. I will be having it done at UCSF and after meeting with the surgeon I feel very confident that he is the right choice.

Would love any tips, tricks, what to expect, etc from folks who have gone through the surgery.

Quick background: mildly elevated prolactin last few years, worsening symptoms, 3.5mm adenoma seen early this year, on cab for the last 5 months

Has anyone else experienced a lot of fluctuation while on cab, and have any suggestions about what to try or do?

I was doing very poorly before cab, including menopausal-type symptoms (too early for me), and my endo put me on cab telling me to not expect improvements, but it's completely harmless so try it if I want.

I've been on 0.25mg 2x/week for 5 months and I'm doing so much better: no more hot flashes, headaches, and many other symptoms. I don't want to understate how impactful of a change this has been for me.

But I still have a lot of ups and downs and they aren't exactly predictable, but seem to flare up every few (several?) weeks or so. Some short-term trouble sleeping, or trouble waking up and getting going, or much more hair loss again. Not feeling as balanced or able to focus, my heart rate staying at 100+, some facial redness appearing again. Feeling awful if I have to delay my next dose by a day or two due to a pharmacy delay.

And then plenty of time, probably most of the time, doing so much better and not experiencing any of that. I can't find a pattern or a trigger, and for all the posts I've read on here it's not something I've seen a lot of so I wanted to ask.

My endo plans to have me stop cab after the new year anyway because it's "unnecessary" and not why I've been doing better, so I don't think there's going to be any troubleshooting anyway.

Has anyone experienced something similar? Is prolactin maybe not my entire problem and should I see a different specialist? Or see if a different endo is willing to investigate and maybe look into dosage?

Just received the MRI impressions.

Findings:

1. 9 x 4 x 6 mm nonenhancing centered just to the left of midline in the region of the pars intermedia of the pituitary. Microadenoma versus congenital cyst. The remainder of the gland appears normal. Normal parasellar structures.
2. Normal MRI brain.

Anyone knows if its a big or small tumor / cyst? any way on differentiating between cyst vs tumor?

Prolactin Levels were 30 which prompted my PCP to order an MRI along with Testosterone 230s.

Is this a common side effect of missing your cabergoline dose? I missed two doses so I was off it for a week and for the past week I have been having some muscle twitches. Is this normal or should I be concerned?

After literal years of being told my issues were "just stress related" I finally have my diagnosis. Ya girl has a 2.9cm x 2.4cm pituitary macroadenoma. It's pressing on my optic nerves and sinuses so I am hoping they take it seriously and get me in for surgery asap.. I really hope they don't push me to take the medication route.

I'm waiting on next steps and need to meet with a specialist still.

Anyone else have a tumor this size? What was your experience like? How did you advocate for yourself for surgery?

I just want this massive thing out of my head and don't want to lose my eyesight.

Hey all! I just wanted to put a positive cabergoline post out there. I have a microadenoma and my prolactin was coming in at 176 ng/mL. I’ve been on cabergoline for about two weeks and I feel wonderful. Swelling in face and body have gone down and I have my energy back. I’m happier and less anxious.

There are so many negative posts about the medication but I wanted to put something positive out there. The most common side effects I’m experiencing is a bit of lightheadedness when I initially take it and a small headache the next day. But I don’t 100% know if the headache is related. I hope you all do not hesitate to try the medication. See what works for you.

Im constantly tired, headaches and sometimes feel sick, defo not with it mentally and finding decision making skills are in decline, lethargic and no motivation. Endo said I can start meds once I've had mri, urgent list come in at 48 weeks wait potentially. My boss is super supportive , but I am finding this tough, I'm in a lower level management role and feel I could go off sick every day but I stick it out daily and lie sleeping each evening to recover

Hi so i (18f) recently got diagnosed with a macroadenoma, and my prolactin levels were really high (2000 or smt) and since I started taking cabergoline its went down, but the side effects are really getting to me, im always sweating, I can’t really eat, and i just feel like im gonna pass out and throw up (i have thrown up before off of it too) and i just need that advice on what to do 😭

How many women were on Nexplanon and now have a prolactinoma or high prolactin levels?

So... I've been on cab for over 6 months (realised I have a prolactinoma while TTC), and period continues to elude me. Started off on 0.25mg twice a week and have gradually been upped by my doctor to 3mg a week and still no period! Has anyone had this experience? I've seen in this forum a lot of people getting their periods a few weeks/months after starting can but I haven't been so lucky. Strange that I used to resent getting periods and now there's nothing I want more in the world...

My third cycle since being on cabergoline was expected to come 4 days ago I had some cramping for 3 days and spotted Friday morning a day after (thanksgiving 🫠) and that was it but no signs of AF coming is it too early to test? November is technically over so I know I won’t have a period closing out November.

I’m only four months into Cabergoline and I know I had to be on this medication for at least two years. Has anyone stop taking Cabergoline successfully? I read a lot of post people saying this is for life. I don’t know why that scares me.

(34f) I started Cabergoline 4 months ago and my prolactin levels were 194 and estrogen levels were super low. Now my prolactin levels are super low and estrogen levels are in the 400s. I’m wondering if anyone else experience this and what were the symptoms or changes your body went through.

I’m a 24F with pcos and my prolactin is 145 My mri reports show Pituitary gland appears normal in size with no obvious focal abnormal enhancing lesion seen within it. Cluster of tiny punctate T2 hyperintense foci are seen in the subcortical white matter of the left paramedian frontal region with faint punctate post-contrast enhancement also seen. This finding is of indeterminate aetiology? prominent perivascular spaces ? inflammatory - immune related aetiology. Clinical correlation and follow up is suggested. No evidence of acute infarct / intracranial haemorrhage is seen.

Hey everyone. I have 2-3 symptoms that bother me on a daily basis. I daily headaches that are behind my eyes, across my head, on the back of my head and my neck is so stiff. I take Advil, Tylenol, t3s and nothing gets rid of the pain. I got a Fitbit to track my heart rate and my heart rate will spike to 110-120 and I’ll get dizzy and nauseous. I’ve thrown up a few times from the headaches and dizziness. The second symptom that bothers me is I’ve been producing breast milk for 1-2 years. It didn’t bother my doctor until I started getting these headaches. I’m on nexaplanon so when my period vanished in the last 6 months, I thought it was the birth control. But I still get cramps and diarrhea when I’m supposed to have my period. I got my blood work done and my prolactin levels are high. I have been a late bloomer all my life, I’ve never had a regular period (got my first at 16) and despite having large breasts on both sides of my family, I am nearly flat. Could this all be related? I do have an MRI coming up but it’s Canada so it could be months

I’ve been on cabergoline for 4 months now. Period came back after 1 month on cabergoline and I have been regular all 4 months. This month period came on time and everything was normal. One week after period I was cramping and then spotting and now I have a full on period again. Has this happened to anyone? I’m worried. I will make an appointment with OBYN.

Since the beginning of 2024 my prolactin level is increasing constantly. It was 30, 40 and 2 days ago came back as 60. For the last 6 months my periods were regular and now it is again 10 days late with high prolactin. Gyno told me i should have my period in a few days but it did not come. I have period cramps but no period at all. Besides, doctor rejected to prescribe medicine since he does not think 60 is a big deal. Anyone experienced it? Btw in 2024 i missed 2 periods and they were all related to prolactin i have never ever had this until this year. I am 23 and not overweight nor stressed at all.

Hi everyone, So since starting on cab in March my (34f) prolactin levels have dropped significantly from ~200 to within the normal range. MRI confirmed adenoma, I forget the size but it was on the smaller side. As of a month ago my doctor decided I should drop to 1/2 of my original dose, so I'm on .25mg/week.

Since starting cabergoline, I've noticed that my physical stress response is significantly increased. Whenever I have any amount of stress above the "normal" amount, my body starts shutting down my digestive system and I get insomnia. I've never had insomnia before this summer, and it's coming back now as I guess I'm going through another stressful period. I've always had a difficult digestive system, but it has definitely gotten worse since starting cabergoline. It's like cabergoline has made my body become significantly more sensitive to stress and produce a more dramatic response to it.

Is this something anyone else has experienced on cabergoline? I got my cortisol and other hormone levels checked which were all normal.

Been on cab .25mg 1x a week for the past 2 months. I know this is a very small dose.

I’ve been having the absolute worsts episodes of chest pains with high blood pressure and fast heart rate. Most likely they are panic attacks. I’ve never had anything like this before starting cab. My endo swears this is not a cab side effect. But he said to take a few week break and see if they continue. I took a 3 week break, saw a cardiologist and got a full work up of ecg ultrasound and 48 hour monitor no issues at all. Started cab up again and within 3 weeks the same exact issues have returned. The endo again is swearing up and down that my dose is so small it can’t cause issues like this, but I’m putting 2 and 2 together - never had these issues before- started cab and had these issues - stoppped cab and issues went away - started it back up and issues returned

Anyone have any similar side effects?

I’ve been lurking around here for a few weeks now. I got my first prolactin test 10/11, my levels were 1000 ng/ml. Doctor started me on Cab 1mg twice a week, and had an MRI 11/11, they found a 1.5 cm macroadenoma. I got another blood test today and my prolactin levels are at 11.2 ng/ml.

Has anyone experienced your numbers ricochet back into normal ranged within 6 weeks of taking Cab.