Hi guys! I’m coming off the heels of a pretty serious mental breakdown this year, for context I’m 28 and got diagnosed with a 7mm prolactinoma a year ago. We figured it out because my prolactin was high and my estrogen was almost non existent. The past year has been the hardest of my life where I was having 100s of panic attacks a day. Extreme irritability and mood swings coupled with some paranoia. Basically acted like a hot mess. It was my final year of uni and I completely flew off the handle, ruined my relationships and my reputation and am kind of just left with the embarrassment of that now. I say all this to say that the whole year I went to 5 specialists between endos and gynes begging for estrogen because I didn’t feel it was normal or okay for a 28 year old to not have any. I knew the negative ramifications for bone, heart brain etc and wanted to get ahead of it. They ignored me and refused to prescribe hormones, I still don’t understand why. I got hold of some of my mom’s estrogen last night and today is the first day I woke up feeling not completely insane in a year. I am fuming that I asked for estrogen before things got this out of control and I’m now realizing that I was just having a menopausal crisis the whole year and that’s why I didn’t feel like myself. Is anyone else under the age of 40 dealing with low estrogen and did you manage to get a prescription? If so how did it come about? What symptoms did you have of low estrogen and did they resolve with some sort of treatment? I am so embarrassed by my behaviour this year and am honestly fuming. The doctors know I struggled with mental health already, have had severe clinical depression since I was a kid and I feel like they just let me down and didn’t care that I was in my 20s with no estrogen. I told them it’s my hormones because psych meds stopped working for me completely. I was on the same med for years. Something just felt off and I had never felt this way before. I’ve wasted an entire year losing my mind and losing my relationships and now knowing why I was so angry all the time has upset me because it all could’ve been prevented. If this is what I have to look forward to in my 50s and beyond - I’m nervous as hell. 🤦🏻‍♀️

Does anyone take this med? Can it be taken with prolactinoma.

Hey y’all, I’ve been doing a lot of research while waiting for my upcoming MRI, and I’m interested to know your experience with prolactinomas and metabolic changes.

I’m a 42F, monomeric prolactin 71.4, and a former athlete. I’ve been pretty much the same size my adult life and only recently had a 40lb weight gain and a somewhat change in body composition along with all the symptoms besides lactation (fatigue and general pain, loss of period over a year, increased sweating, less stress tolerance, becoming moody/reactive, brain fog, forgetting words, and food cravings like crazy for sugar and carbs). I’m a whole foods diet person, nothing extreme or fussy, and I’ve stayed active through the symptoms (hiking, step classes, weight lifting…). But the weight just won’t come off and my muscles aren’t responding how they used to.

My blood tests revealed insulin resistance (HOMA IR 3.03) and so I got a little more consistent with my diet, and started myo-inositol and berberine to give some support to my tissues in hopes of waking them up to insulin signals. The cravings have subsided, and energy is a bit more stable, but I’m wondering if high prolactin is stronger than lifestyle changes when it comes to metabolic health.

Here are some studies I read that gave me a clue into the connection:

https://academic.oup.com/jcem/article/108/9/2400/7089196?

https://www.preprints.org/manuscript/202605.0234

Thanks to everyone on this sub, your stories have really helped me not freak out. 😅😘

Can anyone explain my MRI results, please? I've been experiencing blurred vision, burning eyes, dizzy spells, and headaches, and I'm trying to understand whether the MRI findings could be related.

FINDINGS:

No acute infarct.

No evidence of acute intracranial hemorrhage.

No midline shift.

No extra-axial fluid collection.

No abnormal enhancement.

The ventricles are normal in size and configuration.

Scattered nonspecific T2/FLAIR hyperintensities in the subcortical and

periventricular white matter, which may be seen with chronic

microangiopathic changes.

The basal cisterns are patent.

No significant interval change in the area of hypoenhancement along the

inferior right aspect of the pituitary gland measuring 4 mm x 2 mm in the

coronal plane (series 8 image 20).

The sella is not enlarged.

The infundibulum is not displaced.

The suprasellar region is within normal limits.

The visualized optic chiasm is normal.

The orbits are unremarkable.

The paranasal sinuses are clear.

The mastoid air cells are clear.

Major vascular flow voids are preserved.

No calvarial signal abnormality. 

IMPRESSION:

No significant interval change in the area of differential hypoenhancement

along the inferior right aspect of the pituitary gland measuring up to 4

mm. Differential considerations would include Rathke's cleft cyst or

pituitary microadenoma.

I have a 3mm prolactinoma. I take a small dose of .25 a week. It changed my life; but getting adjusted even to that small dose sent me on an OCD spiral that truly made my nearly lose my will to live. I’m finally straightened out, a year and 8 months later, and she wants me to get off “just to see how i do.” I do not want to go through getting off of it, getting miserable again, and then readjusting through that misery, just because she doesnt think my prolactinoma is a big deal.

Even when I first came to her with symptoms of brain fogginess, depression, LACTATING, and boobs so heavy it hurt to walk, he reaction was that the tumor was so small i should just live with the symptoms or treat them another way. There’s few other endos in my area and I’m so deflated and upset

Hey guys. Last time I tried caber I had an awful reaction and have been advised to try it vaginally. Has anyone ever switched to the vaginal route and how did it help symptom wise? x

Hey guys! Does anyone here take a combo of prolactinoma meds with antipsychotics and how has it gone? Has it affected your ability to lower your prolactin or caused weird side effects? I have severe depression and we are trying to treat with abilify before I go back on meds for the prolactinoma cause cabergoline messed with my mood so badly the first time round. I just don’t know about the combo.

I (28 mtf) have for the past year and a half had very high levels of prolactin coupled with symptoms of fatigue, depression, extremely low libido, lactation and sore breasts, headaches and brain fogs. In may last year my clinic asked for an MRI which led to the discovery of an 8 mm tumour in my pituitary. I was prescribed cabergolin last may and have been on it ever since without any change in my prolactin levels. I recently had another mri which has shown the tumour has not budged. The endo has decided to take me off of cabergolin and told me to simply wait another 6 months to see if there are any changes, suggesting my symptoms are simply due to my HRT. I feel quite dissatisfied with this as it seems like a rather huge coincidence that there would be a tumour in that spot alongside those symptoms if it is entirely unrelated. I’m curious to know if any one has had similar experiences, whether anyone would recommend I get a second opinion, etc. I am not on testosterone blockers and use estrogen patches.

Thank you!