my prolactin is 62.8 ug/L (preference range being 3.0-17.0) my doctor has me scheduled for an mri in 3 months.. but in the meantime i've noticed changes in my period? my cycle used to last from 27-30 days, but for the past few months they've been ranging from 38-45 days. right now, im on day 36 of my cycle with horrible cramps but its just not coming. the cramps are 10x worse when im on my period & my period lasts 7-9 days.. im 16 so it's been almost 6 years since i got my first period, i thought it would've regulated by now?

Hi, curious to see if anyone has started taking trt after being on cabergoline for a few years.

In 2020 it was discovered I had very low T and further digging showed I have a pituitary tumor. Pre cabergoline my prolactin was 500+ and totally was low 200s.

I've no doubt felt better the past few years, prolactin is typically 4 or less and total has ranged from 400-500 in the early morning.

Lately, I've experienced low energy and libido again. Cabergoline also gives me shortness of breath at times. Since I have zero interest in having anymore kids my urologist suggested starting trt to improve my symptoms. I've tried optimizing lifestyle as I regularly exercise, maintain a good weight no drinking or drugs etc.

Anyone ever been in similar situation?

Recently started taking .25 mg twice a week of cab. I just started so not sure about side effects yet but worried about when to take it if I have events where I will be drinking. Take it before bed after a couple of drinks? Take it during the day before having a couple drinks in the evening? I am going to try and switch the days I take it to during the week to not run into this issue but currently taking one over the weekends.

I am 24M and suffering from Prolactinoma for about 7-8 months, low libido, erectile dysfunction etc. I started to take Cabergoline like 4 days ago per doctor's prescription and my mood drastically lifted up after the very first intake. Diagnosis with the MR a micro adenoma was detected and medication would suffice doctor said. The reason I am creating this post is that I read a lot of posts in here, Reddit, to see some advices. I just wanted to ask you, dear Redditers, for some tips, info during this process. Also, I see a shrink with the size of my testicle, does that occur in such a situation and if you had such things, could you give some advices? Thanks wholeheartedly for your answers, have a great day.

So last Wednesday I went in for blood work and my prolactin was 19.8ng/ml which was like one number higher than the normal on their test. Told me to repeat without nipple stimulation for 3 days and fasting the night before, which I done. Went back Tuesday for another test and it is now 22.1 ng/ml. Now going for an MRI tmw. What symptoms were you guys having and can stress cause it to be higher?? I’m a very anxious person and have been stressed lately. Wondering if this could cause it to be higher than last week ?

I had my prolactinoma removed about one week ago and was released from the hospital five days after surgery. So far, I feel almost quite normal. However, on Day 2 post-surgery, my hormones were tested, and my cortisol level was unfortunately quite low (29 µg/L; beforehand, it was 79 µg/L). So, I was treated for two days with hydrocortisone, and on Day 4 they retested my cortisol level, which was now too high (231 µg/L). Therefore, they discontinued the hydrocortisone treatment before releasing me on Day 5. Unfortunately, they didn’t explain why they stopped the hydrocortisone treatment or whether the cortisol deficiency is going to be permanent or temporary. I have an appointment with my endocrinologist next week, but in the meantime, I’m really concerned that I might have to continue this cortisol treatment for life. I thought maybe some of you have experienced something similar after transnasal prolactinoma removal and could tell me what to expect.

Hi all, I started taking Bromocriptine 2 and a half weeks ago, on CD18 and I still didnt get my period. Could the medication messed up my cycle? How long can I expect to get it back?

I always had regular cycles before this, and Im not pregnant (we are trying, and I tested many times)

Thanks!

Update! Everything is going well, I got packing taken out today! The only issue I have is at night is when bad headaches hit. Is this normal? Other than that I’m just super tired and get exhausted over little things! I’m ready for no more headaches and to be healed lol.

Hello! Im F22. I ve been having incredibly irregular menses since 4 years. This year I had to periods for 6 months so I went to the dr. Ordered me blood tests. I had prolactine 35 , high cortisol, high DHEA Hormones. Dr started me on cabergoline. WITH NO MRI!!

I am so scared of the medication side effects And I am extremely pissed of myself because I did not go to the dr earlier. I WAS EXTREMELY FATIGUED LAST MONTH and it extremely affected my studies ( med student by the way). Regretting so much that I did not take care of my health..

Anyone here can relate? .. And advice?

Like the title states , I’m having bad heartburn and diarrhea . If anyone here is on both of these , can you please tell me your opinions ? How long does this last ?

My tumor is gone on the MRI and my prolactin is now 1.9 but my doctor wants me to continue cab for another whole year. has anyone else continued on cab even after their tumor and their prolactin still being low?

I just feel like a year is a long time to be on cab when it only took <3months to completely take away my tumor.

I received my MRI results today indicating a 6mm microadenoma "within the left aspect of the pituitary gland." I am curious which side of my body this would be as left/right depends on the point of view. So would this mean that the prolactinoma is on my left side, or the left side of the image meaning my right side?

One of my symptoms pre diagnosis that I did not know was related, was small but frequent headaches behind my right eye. So it's odd to me that the prolactinoma would be on my "left."

For context, 26 F initial prolactin level a couple weeks ago was 149 prompting the MRI. Prescribed Cab .5mg 2x week but have not taken it yet as it was just prescribed today.

Any tips on what to expect on this journey and what to expect about the side effects of cab would also be greatly appreciated. I'm glad to have found this community!

Is there anybody with experience in switching brands of cabergolin "just like that" ?

After years of not taking it, I got cabergolin-teva, which seems to give me a much worse time than cabergolin from other brands, some years ago.

I got diagnosed with a micro Prolactinoma two years ago, took cabergoline for 1.5 years and just decided to stop taking it randomly one day. Breast milk production returned, but period stayed and other than that it’s pretty manageable so far. Bummer to know it’s probably for life tho! I’ll probably get back on cab when I go into the dating world again or go to try to conceive for obvious reasons

Hi everyone, I’d love some advise (sorry if this is TMI). I was diagnosed with a prolactinoma about 2 months ago and started cabergoline, my main symptom was no period for 6 months. I’ve recently got my period back but it was so unbelievably painful and heavy. I woke up at 4am sweating, sobbing in pain and fainted in the bathroom. For about 2 hours the cramps were unbearable and I was genuinely frightened. I cannot put into words how painful it was. Before my prolactinoma my periods were relatively normal, somewhat regular each month and I didn’t usually experience painful cramps. Is it normal for cabergoline to cause extremely painful periods and is there any way to help it? Any advice or personal stories would be great, thanks.

I had a surgery 2.5 months ago and my adenome was removed. Prl levels were >200 and testesterone levels were 60 before surgery. Now I’m using cabergoline and prl levels dropped to 5 and testosterone increased to 135 a month ago. So prl levels in normal range for a month at least but testosterone is still low at my last blood test, do you think its normal or it should have got into the normal range already? Maybe my testosterone levels are low genetically? Thanks

What were your symptoms of elevated prolactin, please specify male or female.

Also what were your side effects of cabergoline if taken. Do they go away and when?

I am a male 36 elevated prolactin. Symptoms were fatigue, ocasional nausea, muscle aches and body aches(dont know of they are related). I thought maybe my test was low. Tested and found out prolactin was high. Did mri. Found microadenoma. 1.9 mm. Started cab. I am now on week 3 of cab. I feel ok on the medication. But am now getting anxiety. My anxiety is bad when driving. I feel some what slow cognitive. Occasionally I get headaches that feel like pressure. They are not as bad as last week. Any advice or tips are welcome

I have pituitary gland adenoma 1.5 CM * 0.3 MM

I was taking cab 1 month

It crashed prolactin to 0.09 ng/ML

I still have erection problems.

Does lower prolactin can still cause ED? Does pituitary gland adenoma this size without hormonal changes can affect erections?

I dunno what to do and what to think. My erections are dead i dont feel any arousal without taking tadalafil 5MG and it helps a little

I have done penile doppler test and it said that everything is normal and there is no vascular problems.

All other hormones are normal.

This past year has been very stressful for me. Lots of issues and loss in my life. I didn’t notice how much it has been affecting me until I got my prolactin tested and it’s high, under 100 but still high.

Has anyone lowered their prolactin with the use of vitex and controlling their stress? The information out there is both negative and positive with this route. But I am curious as I know someone on the medication and she hates it and does not recommend.

Any experiences or info would be appreciated.

anyone gone this route? i’ve received conflicting recommendations from my endocrinologist and neurologist.

apologies for the long text ahead of time.

found out i have a microadenoma (~5mm) that’s also not very solid

i saw a neurologist that’s very experienced in this surgery that offered to remove it. he said i’d make a good candidate for safely taking the entire tumor out since it’s not hardened yet. i was told that there’s been studies that show the chances of remission are better for surgical removal as a first treatment than doing cabergoline first. however, this is a more novel approach and therefore less commonly recommended.

my endocrinologist strongly did not recommend surgery and said a pill once a week w usually little to no symptoms was the better route since my adenoma was so small.

since ive had a history of blood clotting, i can no longer take any estrogen based medications. i fear having any of these medications quit working and being unable to take any HRT in the future.

between having no desire to be on a medication for 2 yrs minimum that could potentially have adverse side effects, and my fear of prolactin issues coming back, it sounds like surgery could be an option for me rather than give cabergoline a try. its tough getting conflicting guidance from my doctors, so i wanted to hear if anyone’s gone this route themselves.

Ive seen posts about some of you all feeling very tired or having other side effects with cabergoline .im wondering if you all feel like that the whole week if you only take med twice a week or does it just last the next day after you take it ?

Male, 32 years old. My Prolactin is mildly high constantly, sometimes it drops and sometimes it rises but it’s always high above the range. For example a year ago it was 919 mU/l (range 84 - 324), 5 months ago it was 1128 mU/l and the other week it was 544 mU/l and I’ve had constant mildly high results for the past few years.

I had an MRI years ago which was clear although they weren’t actively looking for a Prolactinoma. I’ve seen an Endo who laughed me out the room saying ‘Prolactin is extremely sensitive, I have no idea why you’ve been sent to me, it could be anything but it’s not a tumour otherwise it would be in the high thousands’. So that was that.

I’ve always had a bit of mild gyno and wondered if it could be correlated so that’s why I originally got tested. All my other hormones are in range. My TSH is fine. Liver and kidneys fine. Vid D normal. I’ve never done steroids or been on any medication in my life. I’m healthy, sleep well, workout, eat clean, no alcohol, drugs or smoking etc. I don’t think I’m stressed? Sometimes I can be here and there and I can over think but nothing abnormal I don’t think?

I’ve got another Endo appointment booked but in over a year’s time! (NHS is on its arse). So just looking for some advice on here. I’ve looked at dosing 50mg of P5P to see if that might help but a bit weary of side effects.

mostly just need to get this off my chest to people who get it. high prolactin diagnosis in july. i started cab about 3 weeks ago, MRI is next week.

not gonna lie, the last few months have been tough for me. so frustrated knowing i had these symptoms for years and did not make the connections sooner. pissed off that my birth control hid my period symptoms. knowing how my low libido impacted my relationship and my own self-perception. thinking i was premenopausal at 30.

years of reduced output at my job and beating myself up for not being the efficient, productive employee i had been. not understanding why. trying many new anxiety and depression meds in the last 4 years, and going through several psychiatrists and therapists. getting nowhere trying to treat a mental issue with a hidden physical cause. constant fatigue, having 0 motivation, being a “bed person.”

this week, week 3 of cab, side effects are starting to get worse. i assume because the medication is building up in my system.

took cab sunday night. woke up monday morning with a completely plugged nose and the worst headache i’ve had in years. had to call out of work and explain to my boss that a new med for a recently-diagnosed endocrine issue is making me feel sick. fell back asleep and slept until 3pm.

stressed about work, but not feeling well enough to be able to do my job. also just mentally worn down. not sure what to tell my boss — no tumor diagnosis yet, but i feel like i need to explain what’s going on? so she understands why i am not performing as normal right now and need some space and occasional time off.

i’m dizzy, foggy, anxious, grumpy, and unfocused even with my ADHD meds. no appetite. slept 3 hours last night and am now unable to sleep again tonight, even with my sleep meds. i feel so out of whack physically, and it’s starting to stress me tf out and get me down. i’m going to have to start therapy again to deal with everything i’m feeling.

i know this could be worse. people are diagnosed with worse things all the time, and i am grateful that this is not something worse. trying to stay positive and focus on the fact that it will probably get better soon.

Hello, I recently got diagnosed with a prolactinoma and my prolactin levels have significantly increased. From 47.7 in July to 77 this month. My endocrinologist said it could be from recently getting on Wellbutrin? Has anyone had anything like this happen from taking Wellbutrin?

Hyperprolactinemia just sounds scary as heck anyway. But I was told there are no masses, so what could it be? I’m not totally sure of what these test results could be, all of these fancy words are a lot. I know I could look it up, I have, but it’s still gibberish to me… Although my head is a little fogged because of this. Thanks.

For those of you who stopped cabergoline because of bad side effects, how long did it take to get back to "normal"? I've been on it 3 weeks and I can't do it anymore. The nausea is getting worse everyday. I hope this doesn't scare anyone. It could also be my functional dyspepsia symptoms coming back, the timing with cabergoline is too coincidental though.