Prolactinoma Support Group

A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...

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fendertelemusik 07/25/2016

Feel absolutely no different, i took my last dostinex pill a month ago and my last hydrocortisone pill 3 months ago. I was told all my levels were normal was slowly lowered till i could discontinue them. In the 10 years i have not seen any of my symptoms decrease with the exception of gynocomastia stopping.

This condition has wrecked my life, it has caused me to withdraw from the world, i've lost all my friends... no career, ended up leaving college and since then been working night jobs to avoid people and only last however long it takes for me to feel suicidal and need to retreat for a few months rinse and repeat.

I had a lot of symptoms before getting my diagnosis and all those symptoms are still present... so i wonder what was the point in even treating this tumour in the first place ?

diffuse hair loss all over scalp... if a hair is plucked it never grows back

diffuse eyebrows on the outsides.

acid reflux/gerd.

gum recession despite good oral hygiene twice a day

unable to lose fat even with daily gym visits and starving myself ( at my most extreme )

unable to get an erection except once in a blue moon but never when i really need one, led to me not dating or seeing a girl in 5 years.

depression, suicidal thoughts, lack of focus.

white spots on skin worsened by cold weather.

poor wound healing.... cuts take a lifetime to heal sometimes even scarring from tiny paper cuts.

and i swear my personality has changed... i feel like i've lost the ability to chat to people the way i used too... almost aspergers.

How can i still have so many symptoms present that i had before diagnosis but not cleared up with treatment and levelling out my hormones ? possible it's completely unrelated ?

BA_SideEffects 08/02/2016

Hi there. I can relate to many of the symptoms as well as the feelings you listed. Being unwell is shit and the longer it goes on the tougher it becomes to deal with without falling into pits of despair here and there--especially if you are young and sick and especially if the doctors cannot give you an answer on why it's all,happening or how it can be fixed. I have been in that position for the last 10 years!since I was 18. I just recently discovered I have a prolactinoma and have not begun treatment yet. However! My endocrinologist says that none of my presenting symptoms can be related to the prolactinoma. He says only breast discharge and loss of periods are symptoms. I find this hard to believe and mentioned this support group where people listed all sorts of additional symptoms yo which he said that they could have additional issues or due to the severity or length of time they had the tumor it could have stated affecting other areas.

I would highly recommend addressing the issues you're having with specialists or trying to find a really good primary care doctor to help you. It COULD be that you just have many issues going on and that those symptoms are not related to the prolactinoma. DO NOT GIVE UP. KEEP SEARCHING FOR SPECIALISTS TO HELP YOU. Get all your labs done, all of them, for everything. Go to a periodontist and derotologist, a pelvic physical therapist, a psychologist or therapist to lean on and discuss how this all is affecting your mental health.

headintheclouds 09/28/2016

I can completely relate to your story. I am on my 2nd to last carbogoline pill and I have had almost all of your symptoms. I am new to the group, and am really feeling like there is someone out there that can relate to me.

KristanElla 11/08/2016

Hi all, I was diagnosed with a prolactinoma in 1999, I was on bromocriptine then cabergoline, this was suddenly stopped three years ago,after all those years I suffered withdrawal symptoms aches and pains, palpitations,personality changes and hot flashes on my face. But was told you don't suffer from withdrawal symptoms when stopping these medications, no matter what you say they don't listen. I feel that since my initial coming off meds, I have suffered from fatigue, brain fog mood swings, and others, but no one listens here in the UK.

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