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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celticnoel 05/05/2015

Ok so I was diagnosed with a 1cm prolactinoma 2 years ago, my prolactin levels then we're 16'000 extremely high which even shocked my endo! I'm now down to 6'000 thanks to cabergoline but the drug is playing havoc with my day to day mental health, I'm male so the emotional side of this side effect really gets to me. I also suffer from depression and anxiety of which I don't know if that's tumour/medication related. My short term memory and concentration is still poor even after 2 years, I forget friends names and conversations I've had which intensifies my anxiety, can anyone else relate to this and how much do you put it down to the tumour or the cabergoline. I'm pushing for another endo appointment as my last bloods showed an increase in prolactin levels which makes me think I wanna get this tumour out my head, get my levels to normal and get on with my life but I know there are risks with surgery and my endo has been reluctant to go with it but it's been 2 years now. So my question really is what would be the criteria for the surgery to happen and does anyone have post surgery experience (hopefully good) they could share, cheers

cyndio 05/05/2015

Hi I also had a bad experience with cabergoline. It did cause anxiety due to the breathing problems it caused and my brain always felt fuzzy. I could even be the middle of a conversation and forget what I was going to say.

celticnoel 05/05/2015

Hi Cyndio, are you still on cabergoline? What are your symptoms like now, did you have the op? Brain fog and concentration/memory problems really scare me as you say can be in the middle of conversation which can be really embarrassing aswell!

sara07 05/06/2015

I have been taking cabergoline for just over a month now and it's horrible. I have the brain fog/concentration issues too as well as my ankles and feet are swollen and tingly all the time. I also feel so tired. I can't keep my eyes open while driving and it's scaring me.

My doc told me that surgery is an option but even after surgery, there is the possibility that the tumour could come back. Has anyone else been told this.

Sorry to hear about this celtic, but you are not alone .

celticnoel 05/06/2015

Cheers Sara and as I write this I'm falling asleep in work! Good to know I'm not alone sorry to hear about your feet I did hear that about surgery but I'm at the end of my tether with this so defo pushing for it, cabergoline sucks!

sara07 05/06/2015

Thanks Celtic! I hear you about falling asleep at work.

I hope you have a good day today! :)

cyndio 05/06/2015

I actually stopped taking it mid nov 2014 due to feeling extremely sick the next few days and difficulty breathing. I am currently on bromocriptine again. Have been on it for 4 weeks and the 1st 2 weeks I would have to go take a nap during my lunch just to get through the workday.

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