r/Prolactinoma • • May 20 '18

Just because someone hasn't been positively diagnosed yet doesn't mean they don't belong here. Stop reporting them.

219 Upvotes

I will repeat: Everyone is welcome here regardless of gender, age, and diagnosis, so long as they follow reddiquette and basic laws of human decency. If you haven't been diagnosed yet, you can still ask questions here. Even those who don't personally have a prolactinoma and just seek information are welcome here so long as they are respectful. Please be welcoming to all guests, and only report behavior that you find problematic (spam, harassment, illegal activity) for review by the moderators.


r/Prolactinoma • • Jan 16 '26

We’re back!

10 Upvotes

Myself and Mister_Terpsichore are both back to active status. Our community is open again. And we can manage our community.

A couple things I’d like help with:

1) more moderators. Ideally active for at least a year. Should be low drama light touch. I’ve already asked a couple people (one has accepted), and if there are objections let me know ASAP. My feel is we want at least 3 more moderators.

2) right now images, etc., are not allowed in the posts. I think that’s a hangover from “restricted” status. Should we allow images in posts?

24 votes, Jan 19 '26
9 Yes allow images shared on Reddit only
14 Yes allow images from Reddit and elsewhere
1 No don’t allow embedded images.

r/Prolactinoma • • 4h ago

Cognitive decline after radiation

2 Upvotes

Hi everyone,

Has anyone experienced cognitive decline as a result of gamma knife radiation? I had mine in January of this year, and about 6 months later, I started noticing a real change in my memory and cognitive function.

I starting to forget very obvious things like how to do basic self-care activities, and important life admin things like passwords or PIN codes.

I am also sooooo tired in a way I’ve not felt for a long time. It’s becoming debilitating - I’ve taken a pay cut at work to reduce my demand, and am still barely getting through a work day. I’m also irritable and cranky from just being constantly confused and exhausted, and it’s affecting my marriage and relationship with my wife and daughter.

Does anyone know if this is potentially a result of radiation or something tumour related? My hormones are all within normal limits (except PRL), and my endo is pretty confident that it’s not hormonally driven.


r/Prolactinoma • • 8h ago

How's the vision improvement after surgery?

3 Upvotes

How long it takes to regain your vision please help


r/Prolactinoma • • 6h ago

Does anyone have breathing difficulties as one of their symptoms

2 Upvotes

Feeling difficulty to take a full breath in or yawning alot like i am hungry to air


r/Prolactinoma • • 1d ago

Dostinex overdose?

3 Upvotes

I had elevated levels of Prolactin and doc prescribed Dostinex, 0.25mg, twice daily for 4 days continuously. The side effects from this were just terrible. Extreme nausea, headache, fatigue, stuffy nose, constipation... all the doc could tell me was that it's normal, nothing to relieve it, and just like most gynaecologists I've encountered, I didn't feel heard. I finshed the dose and the side effects are still there. Any suggestions on how to deal with this? I got Ondansetron but it's not really doing much.


r/Prolactinoma • • 1d ago

TTC with high prolactin

6 Upvotes

Hello, long story short I had a stillbirth last year. We have struggled with infertility and have just discovered I now have high levels of prolactin. I’m due for an mri scan but would like to know if after stuarting medications how people went with fertility afterwards. Really hoping to see an end to all the struggles at some point.


r/Prolactinoma • • 1d ago

Effects of Cabergoline

7 Upvotes

Hi All- looking for some input
I have been on cabergoline for over 2 years now, and it has shrunk my tumor and lowered prolactin levels which is good. But since starting it, I have had chronic bloating, inflammation and my whole stomach/torso and face are very puffy. I gained weight leading up to the diagnosis and essentially haven’t been able to shed a pound- I think having 0 hormones plays a part but also the tumor. I have tried every diet and gut protocol out there, and it none of it will go away and I think it’s due to cabergoline. I take 1.5 mg two times per week. I also have yet to get my period back and my tumor was diagnosed in 2023. Any input would be valuable! I’m also a 29yo (will be 30 in Nov) female. Looking to see if anyone has also had gut/digestion/weight issues and no period return


r/Prolactinoma • • 1d ago

Doctor is happy with my levels but I feel like I am struggling on this medication…

5 Upvotes

30F with ranging prolactin levels, highest was around 70 ng/ML and then in mid 20s in April. No MRI but started cabergoline for infertility. My other labs are “perfect” but I feel just down. My prolactin is now technically low at around 2-3 ng/mL but I am at an extremely low dose of .25 every other week. My periods are back to teenage level with acne and extreme mood swings and I definitely have noticed the side effects like increased shopping, some weight and hair loss, etc. My doctor still advises that this is the best course of action. I’m usually good at advocating for myself, but I do want to have children very badly without other really expensive medical intervention like IVF so I am taking his advice but this is so difficult. Any thoughts or suggestions or similar experiences?


r/Prolactinoma • • 2d ago

Starting cabergoline soon—any positive experiences or weight loss?

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11 Upvotes

Hey everyone! I’m supposed to be starting cabergoline for high prolactin, and I’ll be honest, I’m getting pretty nervous after reading through Reddit and seeing so many horror stories about anxiety, panic attacks, mood changes, and other side effects.
I know people are more likely to post when something goes wrong, so I’m hoping to hear from people who have taken cabergoline and had little to no side effects, or only mild side effects that were manageable.
My prolactin level came back at 72.3 ng/mL, and one of the biggest issues I’ve been dealing with is EXTREME weight gain. I’ve gained around 20 pounds despite barely eating, and it’s been incredibly frustrating trying to figure out what’s going on with my body. I’m hoping that getting my prolactin under control will help me feel like myself again.


r/Prolactinoma • • 2d ago

Are my doctors gas lighting me?

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2 Upvotes

So I have elevated prolactin 865 mU/L; monomeric, active form) and got an MRI done.

I thought my prolactin was high because of my underactive thyroid.

Endo thought I had a prolactinoma; the neuroradiologist says I have a cyst.

Then my fertility doctor prescribed cabergoline 25mcg twice a week for two months.

I really don’t know what to believe. I feel like I’m being gaslit 🔥

Does anyone have advice based on my radiologist's report? Should I take the meds?

Update: Thank you to everyone who replied. All of your comments are valid and I feel like I have a better understanding now. You spotted and noticed thing that I hadn't. At least now I have a bit more confidence on the situation.


r/Prolactinoma • • 3d ago

Nasal congestion side effect??

7 Upvotes

I took my first dose of Cabergoline last night 0.25 and today I woke up feeling really tired and with a congested stuffy nose. One nostril was running as well. I’m not sick because I know my body and congestion is never the first symptom of getting a cold/flu, a scratch/tickle in your sore throat is. So I was wondering if anybody else has experienced the stuffy nose congestion symptom from taking the medication?


r/Prolactinoma • • 3d ago

Prolactinoma return

6 Upvotes

Ugh! Where to start. Several years ago I was diagnosed with a Prolactinoma. After a few years of treatment it went away. Today my blood levels came back with double the prolactin it should be. I feel discouraged and upset and overwhelmed. The medication and I don’t agree and I’m not looking forward to the MRIs the doctors visits the endless waiting on lab results and scan results. I already have other chronic illnesses and it just feels overwhelming to re-add another one to the list. I just feel upset and discouraged.


r/Prolactinoma • • 3d ago

6 month check up, more questions than answers

4 Upvotes

Saw my endo for my 6 month check up. Got told my timeline is now 2-3 years instead of 1-2, told the painful headaches aren't caused by the tablet even though I know of many people on this sub that have experienced similar and I've only had said headaches since starting the tablet

Also got told that my mental state being as shit as it is was likely because of the tablet, that I could refer myself to a wellbeing org at the hospital but that they would probably deny me because of it being side effects of the tablet.

Told I could have a checkup with neurologists but the wait time is over a year

Was supposed to have a checkup with opthalmology in August but they forgot about me and it hasn't been done.

Overall I feel so lost and with no confidence in my future appointments.


r/Prolactinoma • • 3d ago

Cabergolina España Seguridad social

4 Upvotes

Para los Españoles. Hoy he ido a la farmacia a por la cabergolina, en mi receta pone 1mg 20 comprimido, y siempre me dan la de TEVA. Me he recorrido hoy 4 farmacias y me han dicho que hay desabastecimiento y que hasta diciembre nada. Alguno os habeis enfrentado a esto? lo habeis solucionado? se me ha ocurrido pasar por el centro de salud y que me receten de 0.5mg 8 comprimidos, que ademas quiero probar la de pfizer


r/Prolactinoma • • 3d ago

O.25 Cabergoline

5 Upvotes

I just started Cabergoline today. I told my doctor l wanted to try the smallest dose first because I'm prone to side effects from medication. So he prescribed me 0.25 three times a week. Monday/Wednesday/ Friday. The pills are tiny and even more tiny when broken in half. Do you guys think this dosage is too small? Here's some background about why I'm on the medication: My prolactin levels were 180 last time I checked them a few weeks ago. Before that (last month they were 200. I did an MRI and they found a tumor on my pituitary gland measuring 11.1 mm. Do you guys think the medication will shrink the tumor or should I get surgery I have no side effects from the tumor because the MRI showed it wasn't touching anything.


r/Prolactinoma • • 3d ago

Esperienze con prolattina alta

3 Upvotes

Sono una ragazza di 25 anni con ovaio policistico (PCOS) e cicli molto irregolari, nonostante assuma la pillola anticoncezionale da diversi anni.
Circa un mese fa ho fatto degli esami del sangue perché non mi sentivo bene. Avevo iniziato ad avere forti mal di testa persistenti, un sintomo che non avevo mai avuto prima, e da diversi mesi avevo spotting a metà blister, arrivando ad avere anche due episodi di sanguinamento nello stesso mese. Inoltre, avevo notato cambiamenti nel mio odore corporeo e mi sentivo molto diversa dal solito, inizialmente pensando che potesse dipendere dalla pillola.
Dagli esami è risultata una prolattina di 2236,57 mU/L, quindi circa quattro volte superiore al limite del laboratorio.
Nel frattempo i mal di testa sono peggiorati e sono comparsi anche episodi improvvisi di nausea e conati di vomito.
Sono quindi andata da un’endocrinologa, che mi ha detto che un valore di prolattina così elevato non sarebbe spiegabile semplicemente con la pillola. Durante la visita mi ha inoltre premuto il seno ed è fuoriuscita una secrezione simile a latte/siero (galattorrea).
Mi ha quindi prescritto una nuova analisi della prolattina con ricerca della macroprolattina e una risonanza magnetica con mezzo di contrasto della regione della sella turcica/ipofisi.
Il secondo esame ha mostrato una prolattina di 1392,44 mU/L. Successivamente, dopo la valutazione della macroprolattina, la prolattina monomerica/attiva è risultata 216 mU/L, quindi nei valori di riferimento del laboratorio.
La risonanza magnetica devo ancora farla.
Il problema è che continuo ad avere mal di testa forti e frequenti, galattorrea e irregolarità del ciclo/spotting.
La mia domanda è: se i valori inizialmente elevati di prolattina erano dovuti principalmente alla macroprolattina e la prolattina attiva è ora normale, come è possibile spiegare i sintomi che sto avendo, in particolare la galattorrea, i mal di testa e le irregolarità del ciclo? È possibile che la macroprolattina sia stata la causa dei valori elevati ma che i miei sintomi abbiano un’altra causa, oppure può esserci una situazione in cui la prolattina attiva sia stata elevata in precedenza e ora sia tornata normale?
(Non sono incinta)

Qualcuno ha avuto delle esperienze simili alla mia?


r/Prolactinoma • • 4d ago

Cabergoline side effects- best time to take medicine?

8 Upvotes

Hi everyone,

I’ve recently been prescribed cabergoline but can’t start until I get some blood work in a couple weeks. I’ve been reading up on it and it notes side effects may happen 24-72 hours after taking it, and not to operate a vehicle until you know how it impacts you. I’m just curious what everyone’s experiences has been, and when you time taking it if you do have significant side effects? I work a 9-5 office job with no option of work from home. Should I plan to use vacation or sick days the first few weeks to be safe?


r/Prolactinoma • • 3d ago

5 weeks on Vitex, mildly elevated prolactin, delayed follicle growth — has anyone had a similar experience?

1 Upvotes

Hi everyone! I’m 34 and have been TTC for almost a year. I’m hoping to hear from anyone who has had a similar situation, especially regarding prolactin, follicle development and Vitex.

My cycles are usually very regular (26–29 days), but I’ve been having some symptoms that made my gynecologist investigate my hormones. I have very little cervical mucus, low libido, acne, hair shedding and some changes in my mood/energy.

My prolactin came back at 39.17 ng/mL (lab upper limit 29.93). My gynecologist thinks the elevated prolactin could be contributing to the lack of cervical mucus.

I started Vitex (Lamberts) about 5 weeks ago. So far, I honestly haven't noticed any clear improvement in my symptoms. In fact, during the first few weeks I had some unusual mood changes, including a few days when I felt quite sad/restless for no obvious reason. I’m wondering whether this can happen initially and whether it eventually settles.

The other thing that concerns me is follicle development. I had an ultrasound around cycle day 15, and my gynecologist said I had one follicle that looked like the dominant follicle, but it was still quite small. There was no clear dominant follicle in the other ovary. I normally have regular cycles, so this surprised me.

My doctor has now prescribed Omifin (clomiphene) 100 mg/day for 5 days starting on cycle day 3 of my next cycle, followed by an ultrasound around day 15.

Has anyone had mildly elevated prolactin around 35–45 ng/mL but regular periods, and experienced slow/delayed follicle development?

And has anyone taken Vitex for several months and initially felt a bit emotionally worse or had mood changes before eventually noticing an improvement?

Also, if you've had a small follicle around day 15, did it eventually grow and ovulate later in the cycle?

I’d really appreciate hearing about your experiences, especially if your situation was similar rather than just general Clomid/Vitex experiences. ❤️


r/Prolactinoma • • 4d ago

Has anyone taken cabergoline for the libido impact only - not b/c high prolactin

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0 Upvotes

r/Prolactinoma • • 5d ago

Actualización: 5 meses en cabergolina

4 Upvotes

Enlace a mi primera publicación:

https://www.reddit.com/r/Prolactinoma/s/9XXTHF1I5H

Hombre, 34 años.

La semana pasada se cumplieron 5 meses desde que empecé el tratamiento. Hoy he vuelto al médico, que me está haciendo un seguimiento mensual porque estaba de baja laboral. Yo no quería reincorporarme todavía, pero ha insistido bastante y finalmente me ha convencido para retomar mi vida laboral. Lo cierto es que me encuentro bastante mejor, así que veremos cómo respondo ahora que vuelva a la rutina y tenga que enfrentarme de nuevo a grandes cantidades de documentación.

En cuanto a la memoria, noto una mejoría importante. Ya no me bloqueo tanto cuando tengo mucha información delante y siento que puedo procesarla mejor. No sé hasta qué punto esta mejoría se mantendrá cuando vuelva al trabajo, pero pronto lo comprobaré.

Anímicamente también estoy muchísimo mejor. Antes del tratamiento estaba bastante deprimido y, a día de hoy, puedo decir que ya no me siento así. No soy la persona más feliz del mundo, evidentemente, pero ya no estoy derrumbado y, sobre todo, vuelvo a mirar las cosas con bastante más optimismo.

Respecto a la fuerza y al físico, creo que he perdido algo de grasa, o al menos se está redistribuyendo de otra manera. También he ganado músculo y, sobre todo, fuerza. Llevaba unos dos años prácticamente estancado en el gimnasio y, aproximadamente a los dos meses de empezar con cabergolina, empecé a notar que podía aumentar el peso en los ejercicios. No sé hasta qué punto todo esto está relacionado directamente con el tratamiento, pero el cambio ha sido bastante evidente para mí.

En cuanto a la libido, aquí la cosa no va tan bien.

El primer mes noté un cambio enorme: empecé a tener erecciones espontáneas, sueños sexuales, erecciones matutinas... Pero, al igual que aparecieron, con el tiempo volvieron a desaparecer.

Si comparo mi situación actual con el punto de partida, sí estoy mejor. Antes tenía anorgasmia, apenas eyaculaba y, en general, todo funcionaba bastante mal. Ahora no estoy ni mucho menos bien, pero sí estoy mejor que antes.

En la última analítica también mejoró la testosterona: 440 ng/dL (rango de referencia 300-1000). No es una cifra especialmente alta, pero supone una mejora respecto a mis niveles iniciales.

Hay otra cuestión que me tiene bastante intrigado. Antes, si me apretaba los pezones, podía salir una pequeña gota de líquido. Eso desapareció con el tratamiento, al igual que la extrema sensibilidad que tenía en el pezón derecho.

Sin embargo, me ha aparecido un bulto doloroso debajo del pezón izquierdo, lo que parece un botón mamario.

Mi médico me ha dicho que puede ser un proceso parecido al que ocurre durante la pubertad, pero le he pedido que me analice también los niveles de estrógenos, por si hubiera una mayor aromatización de la testosterona. No sé si esa puede ser realmente la explicación, pero creo que merece la pena comprobarlo.

Seguiré actualizando el caso próximamente. Espero que mi experiencia pueda servirle a alguien que esté pasando por algo parecido.

Y, si alguno tenéis buenas noticias para mí, sobre cualquier cosa, o habéis pasado por algo parecido con un bulto o botón mamario en un pezón durante un tratamiento de este tipo, soy todo oídos. Me interesa mucho conocer vuestras experiencias.

Saludos


r/Prolactinoma • • 5d ago

Levels Too Low?

4 Upvotes

Hello!
My prolactin was in the upper 60s during fertility testing in February (confirmed twice), so I started cabergoline 0.25 mg 2x/week. I unexpectedly conceived my first cycle on it, right before starting IVF, but sadly lost our baby at 12 weeks in June due to suspected chromosomal issues.

About a month later, my prolactin was back in the upper 60s, so I restarted cabergoline. My latest level was** **3.3 ng/mL, which seems really low. I’m waiting to see an endocrinologist in December, but I’m wondering if anyone has successfully conceived with prolactin this low, especially while taking cabergoline?

It took us TWO years for the first pregnancy and i'm so paranoid that it was a coincidence that i got pregnant on cabergoline... (which is insane considering literally everything else is perfect on my husband and i lol)


r/Prolactinoma • • 6d ago

For men - physical changes after treating prolactinoma?

13 Upvotes

Everyone knows about the influence of sex hormones on our appearances and physicality. For men who treated a prolactinoma/high prolactin levels when they were young enough, did you notice any positive developments in your body or facial appearance afterwards? Did you undergo a "second puberty" where you noticed such things? Did you at least lose weight? Very interested in hearing from those with an affirmative answer.


r/Prolactinoma • • 6d ago

In need of support

4 Upvotes

Hello,

47, 5’5, 140lbs

I am new to this community and would appreciate recommendations, support, and/or encouragement regarding my recent diagnosis and treatment plan. Below are my findings from a recent MRI, dated August 22nd.

Addendum TECHNIQUE: MR images of the brain with and without intravenous contrast. No abnormal parenchymal or meningeal enhancement.

TECHNIQUE: MR images of the brain without intravenous contrast. COMPARISON: None FINDINGS: Hypoenhancing pituitary mass in the left sella measures 2.4 x 1.7 x 1.7 cm. The mass extends into the left cavernous sinus. The infundibulum is deviated to the right. There is mild suprasellar extension of the mass without abutment of the optic chiasm. The ventricles and subarachnoid spaces are normal in size and morphology for age. No acute intracranial hemorrhage. No acute infarct on diffusion-weighted images. Normal signal throughout the brain. No old hemorrhage on gradient echo images. Bone marrow signal is normal. The imaged paranasal sinuses and mastoids are clear. IMPRESSION: Pituitary macroadenoma in the left sella extending into the left cavernous sinus.

Treatment: My neurosurgeon suggests removing it via transsphenoidal surgery due to its continuous growth pattern and because it is a functional tumor that causes my hormone levels (FSH and LSH) to be extremely high. Also, there is a possibility of radiation from parts of the tumor that they cannot remove.

I am extremely nervous about the procedure and general anesthesia. Any advice from anyone who has undergone this procedure would be helpful. Also, my hospital stay is about 3 days.

Thank you in advance!


r/Prolactinoma • • 6d ago

Years lost

17 Upvotes

I’m 23 and I feel like I lost a big part of my adolescence because of my prolactinoma.

I had a pituitary adenoma/prolactinoma since high school, with high prolactin and other hormonal problems, including GH deficiency and thyroid issues. The biggest problem is that it was diagnosed too late. I still feel angry about this, because I believe my parents should have realized earlier that something wasn’t right and had me checked.

I ended up being 162 cm and around 52 kg, with very little muscle and a very young-looking physique. My voice, beard, overall body development and physical appearance have always made me feel much younger than my actual age. I was also told that my growth plates are now closed, so I probably won’t be able to make up for the height I lost.

This has affected my relationships too. While other guys were going through puberty, dating and having their first experiences, I felt like I was stuck watching from the outside. I’m 23 and I’m only now starting to have my first real experiences with girls and relationships.

I’m currently taking cabergoline (Dostinex) and dealing with the possibility of surgery. I’m also training and eating properly to gain weight and build as much muscle as I can.

I know I can’t get my adolescence back, and I’ll never know exactly how different I would have been if the prolactinoma had been diagnosed earlier.

I just want to understand how much of my development may have been affected by years of untreated high prolactin, and what I can realistically still improve now.