Prolactinoma Support Group

I read an article summarizing the findings of a study involving women with prolactinomas. I can't find the article just now, but I remember one remarkable thing was that women who were able to get their prolactin levels down to normal subsequently lost significant weight (20-30 lbs I believe.)

I read another article describing a comparison of women with prolactinomas and those without but who all had similar body weights. The women with prolactinomas ALL had much higher percentages of body fat then the women who did not have prolactinomas.

This is how I make sense of it for myself: the high prolactin level makes my body behave as if I were breast-feeding a child, but I'm not. So my body wants me to store extra calories and fat to help feed this baby. Women who are breastfeeding often lose weight because of the huge calorie output. But those of us with prolactinomas eat and store calories like breastfeeding women but without the calorie output. So of course we're going to gain weight!

You are not alone.

I didn't think of it that way. It's strange because the first time my prolactin levels were high I was very thin back in 2000. It's really been since 2005 that I've been gaining weight with the most weight gain in the past year. So you haven't found any special diet or exercise to at least curb the weight gain?

Amazing!! I knew there had to be an answer to this crazy weight gain I've had the past couple of years!

I gained 30 lbs. in a 6 year period of time, before my diagnosis. Had no energy for exercise and felt fragile all the time.

wow 30lbs over 6 years. Were you able to lose any of it with treatment?

Hello. I was diagnosed with a 16mm prolactinoma back in August 2006. Prior to being diagnosed I gained approx 70lbs. I am taking Quinagolide now and at first I was taking Cabergoline. Both of these medications make me feel constantly sick, tired, lethargic and I have numbness in my hands and feet. I cannot exercise yet I have still lost the 70lbs that I gained. Possibly due to the side-effects or the fact that the tumour is shrinking and my prolactin levels have returned to normal. http://www.headache-info.co.uk You may loose the gained weight once your tuour has shrunk. Good luck. Kind Regards.

My daughter was diagnosed was when we went to the dr asking why she wasn't having periods and she had gained around 60 pounds in a couple of months. So yes, there is definatly a possibility of that. Now that she is taking Bromocriptine she has lost 14 pounds with no diet or excercise.

Wow excellent!! How long did it take her to loose the 14lbs? I've been on Bromo for two weeks today and am down 8lbsI feel like there is hope!!

Is your daughter feeling better?
Good luck to your daughter.

Unfortunately, in the 2 years before I was diagnosed, I gained approx. 60lbs even though I exercise regularly and eat healthy. My endo told me this is due to the prolactinoma.
I have been on dostinex for 8 weeks (today!), and have yet to lose any of it. It is very frustrating, but I've been told that the weight will come off as I continue my medication.
How quickly has everyone else lost the weight after starting medication?

I gained around 25 lbs before I was diagnosed. I gained around ten and held my own for a couple of years than I quit my birth-control and while trying to loose weight, I gained another 15 lbs, thought I was going crazy!