r/Prolactinoma

I love my partner of 8 years- but ever since I’ve been on this medication, i feel like ive lost attraction to him. I feel different, I’m struggling with hyper sexuality and compulsive behaviors. I feel attraction towards other men and the compulsive behavior to just make out and have s3x. I feel bad, i love my boyfriend and this doesn’t feel like me.. i always joke that we should open our relationship up and he shuts it down, but i mean it. I also feel a weird compulsion to start my life over, run away somewhere and just keep going .. has anyone experienced this? how did you handle it? i want to just try and suppress it until I’m off of it but it gets stronger and idk what to say or what to tell my boyfriend

Just wanted to share that in a year on Cabergoline, my prolactin has reduced from 7000+ to my latest bloods showing 187!
I won’t have another scan until January but I hope that means tumour is also shrinking!

Im talking about the ones popping up that doctors dismiss..

Mine are: extreme fatigue, extreme weight gain, derealization, panic attacks, crying spells, anger issues, loss of interest in everything, sensory issues (things being too loud), apathy, feeling like im trapped in my mind, colors getting darker outside every year (it used to be very bright just 3 years ago idk), loss of motivation, feeling like "i have lived a good life but its about to be over, (feeling like im going to die soon but its not going to be my fault).

Im so so fing done with doctors dismissing symptoms when every year my levels of dopamine in my brain and body go down. I feel like im losing my fing mind. I cant tolerate dopamine agonists due to epilepsy but surgery would be nice haha. Did anyone else's doc dismiss this?

Hii I’m slightly freaking out. I’m so afraid of being told everything’s ok and my symptoms aren’t significant enough to warrant treatment.. here’s the whole breakdown someone with insight please help

23 yr old female, have had light periods my whole life, absent libido as long as i can remember. in the past couple of years ive developed chronic yeast infections that only go away when im on a combination birth control pill, very very low hormone. i dont take any medication, thyroid panel came back good. i’m not on any ssris i previously took lexapro for about 5 months but stopped it in december so ive been off it for months (7+) all of this to preface…

i went in for routine labs and found my prolactin was 91.2 ng/ml, upon retest it was 72.8 ng/ml, my estrogen was below 30 which is insanely low for a 23 year old, my body is basically going through menopause. which explains so many of my symptoms, including hair thinning, hot flashes, the symptoms above. my period is basically completely gone now, i bleed for a day or two super light i don’t need a pad or anything, and i have a lot of facial hair i’ve had to get electrolysis for. as well as horrible headaches i’ve been having every single day. my obgyn said she was sure it was a prolactinoma but to get the mri and see an endo.

i got an mri, these are the results.

The pituitary is normal in size and morphology. Vaguely heterogeneous signal seen along region of the pars intermedia on delayed series. No discrete, convincing pituitary nodule or other solid mass identified. Pituitary stalk midline and normal in thickness. There are no suprasellar cistern or optic recess are clear. Mild pituitary heterogeneity without discrete nodules, intrasellar or suprasellar masses.

I’m so scared, this post is all over the place and i never ever post on here usually unless i feel extremely inclined to but i can’t imagine being told i’m ok and there’s no prolactinoma and to just keep on doing what i’m doing.

i’ve felt like less of a woman for so long because of these symptoms, the yeast infections, the libido, the anxiety, the brain fog. i want a solution and this felt like it was it but now i feel like these results are saying everything is normal.

i have a follow up with endocrinology, im not exactly looking for medical advice, mostly just scared and tired because everyone in my family tells me im overreacting, or that im ok when i clearly dont feel that way. i just want to hear people’s opinions and personal experiences, anything that will help thank you

So I took an at home blood test (to check for something else but prolactin was included)

And my first Prolactin blood test was 1,313mIU/L (102 - 496 R). I thought it might be an error, so I took another one (doing all the things they suggest like sleeping well, fasting, no sexual activity ect) and it went down to 900... which was still pretty high.

So I went to the GP (UK) doctor and she said that even though it's high, it's not a concern since I'm not lactating??? I know that is a symptom but I didn't think it was 100%?

Is she right?

I have a 9x8mm prolactinoma, was put on .25mg twice a week. I get nausea on the day I take it, so I take it before bed. Occasional light headless at really random times. Was exhausted all the time before so no noticable change there. Probably the least expected is the sexual changes. It's like being freaking 16 again and I'm 61. I'm not complaining, knew it was a possibility, just surprised. Too bad my marriage is falling apart or this part could actually be fun.

Definitely some impulse control issues. I've always had to control my sarcasm and smart-assed nature as I work in a professional environment, and lately that control is noticeably slipping.

I also noticed I am more emotional, movies or books that normally wouldn't get more than a semi-sarcastic 'aww' now actually get a response. This was probably more surprising than anything else.

My Endo wants to repeat my bloodwork in another 6 weeks. I am hoping for positive movement, but guess we will see.

I've been experiencing erectile dysfunction for two years. My prolactin levels are higher than normal. The upper limit is 15, but my level is 25. Could this level of prolactin be causing ED ?

Hi all, first post here. I’m 24F and have had a range of blood tests across the years where my prolactin has always been elevated.

The lowest measure I ever got was 528 mIU/L (24.9 ng/mL), while my highest has been 1036 mIU/L (48.9 ng/mL). My lab’s reference range is <400 but my average across the years has been 864. Around 86% is monomeric prolactin.

I’ve had two MRI scans (1 with contrast) and they were both normal with no visible tumours and I don’t have any severe symptoms that can directly be linked to my high prolactin.

My other hormones are mostly fine, my androstenedione and DHEAS have been a bit elevated in the past but they’re fine now. Sometimes my LH/FSH ratio is inappropriately elevated and my periods are a bit late but I do not meet the criteria for a PMOS diagnosis and don’t really have any of the symptoms besides hair loss.

I’m just confused on what to do next. My last endocrinologist dismissed this and said my prolactin isn’t super high compared to some other people, but I’m scheduled to see a new one soon.

Does anyone have advice for this situation or a similar experience? Could cabergoline be worthwhile here or is my prolactin not high enough/symptoms bad enough to warrant medication?

Thank you :)

hows your journey medication or surgery plz comment

Is it possible for someone to suffer from the above conditions? Can hyperprolactinemia cause depression along fatigue? This severe lack of energy has made my life dysfunctional.

I also can't seem to remember anything well. My cognitive function has declines considerably. I can't seem to concentrate and work on something for long duration anymore. Can hyperprolactinemia cause these? I just got my blood work done and waiting for the results.

Anyone else?

Otherwise its been great (i switched from cab due to bad mental health side effects)

Hi everyone!

I was diagnosed with a 3mm prolactinoma (though it might also be a Rathke’s cyst - they’re not entirely sure), but either way, my prolactin level is 3400 mIU/L.

However, the only symptom I experienced before getting tested was chronic nausea that lasted for 5 months. It doesn’t respond to any standard GI medications or Cerucal (metoclopramide). I also have this intense aversion to food - it feels like there’s a lump in my throat, I have zero appetite, and I feel nauseated from morning until night.

Has anyone else experienced this kind of symptom with hyperprolactinemia?

Hello all,

I have a question. Does high prolactin and low testosterone cause arousing sexual thoughts to cease in a man?

TIA​

A PSA for those on Cabergoline:

If you are taking Cabergoline and get local anesthesia from a dentist, ask what is in the numbing they use. Typically it's lidocaine, but my dentist today uses a cocktail of lidocaine and epinephrine.

Lidocaine blocks the nerves, epinephrine is a vasoconstrictor to reduce bleeding. This is all well and good for those who aren't on a dopamine agonist, but epinephrine and Cabergoline have an interaction and today my blood pressure and heart rate skyrocketed for ~3 minutes. Felt like I couldn't breath and was sweating. It was pretty scary.

I felt fine after about 30 minute and I spoke with a pharmacist and she said it's temporary since its local and didn't seem concerned.

I think next time I'll be ok since I am aware that it'll happen, or I might just ask for lidocaine only.

im going to try to not wander off my point here as much as possible but we’ll see. i’ve had blood tests done every month since august of last year. all of my tests have shown elevated prolactin levels between 1200-2700 mUI/L. but when resting, it was only 756 (november). my first blood test had normal TSH levels but have been high ever since. and my oestradiol levels have also been low “ish”.

some symptoms i’m having:

- dizziness/vertigo, constantly every day for well over a year

- hot flashes

- non existent libido

- pain during intercourse

- irregular, unpredictable periods (but still having them every month)

- low mood/depression and anxiety

- headaches/ migraines (with aura)

- seeing black dots in my vision

- seeing lights in my vision

- cold intolerance and heat sensitivity

- horrible, horrible brain fog

- weight gain, inability to lose weight even tho i go to the gym consistently

but i had my MRI in feb and i had a lesion on my pituitary stalk, rather than gland, and it was only 2mm. so i’m unsure if it really can be causing all these things? my endo doesn’t want to put me on treatment because i still get my periods and im not trying to conceive. she just gave me vit d to help prevent bone loss from the low estrogen. the dizziness/vertigo has been the worst of it tbh. i can’t take it anymore i need something to help it. does anyone have any similar experiences?

Recently got fertility bloods and all came back fine including insulin, thyroid etc but my prolactin was elevated to 568. Is this cause for concern or should I get an Mri. For context I was fasting and stressed as a I fear giving blood and went a bit vasovagal without actually fainting!

Ever since i started caber 0.25mg 2x a week ive been waking up with a puffier face and swollen eye lid. Is that a common symptom and how do u manage that? Does it clear up over time? (20m)

I have done three blood tests (0-10-20min) to check my prolactin because it was at 26 last time. Now it's even higher. My appointment with my endo is monday, but is it high enough to impact my fertility? Do someone have something similar?

1. 41.5 ng/ml

2. 37.4 ng/ml

3. 54.0 ng/ml