I too have a Prolactinoma (micro adenoma) and unfortunately, first time around 5 years ago, I had a negative reaction to Bromocriptine, which is only one of two medications I know of to shrink the tumour.
My biggest concern though, was the weight gain I have experienced, along with the course hair growth I have grown out of nowhere on my chin, side-burns and chest! Being a 34e year old woman, I have found this most embarassing and my self-esteem ahs sufferred greatly.
I hardly eat, and yet my weight has become a problem for me. I used to be an Australian size 10 to 12, and I am now a size 16!
The worst thing of all is that even though one can lower testosterone levels and lower Prolactin (both my levels are up and down), appreantly the hair follicles "remember" the growth, and regardless of the "evening out" of ones hormones; the course hair continues to grow. Has anyone else had this problem with weight gain and hair growth too?
I lost my last baby at 21 weeks, and I have been researching the prolcatinoma and its' affect on pregnancy...and I was suprised to note that high prolactin releases Oxytocin - the chemical that brings on contractions in a pregnant woman! Does anyone feel that this could've been the reason I had 2 very premature births for my first two kids, and lost the third child?? Your thoughts?
I am on Bromocriptine and definitely get random dizzy feelings- especially after a quick movement. Not usually too bad, but sometimes I get pretty bad headrushes and have to stabilize myself for a second.
Since I started taking it, I have noticed my hair falling out. I wasn't sure if it was just that my body was finally getting over the fact that I'm not pregnant anymore (my hair stylist says that after giving birth a lot of people lose hair). I never went through a mass "shedding" until I started bromocriptine ( one year post-partum)
Also, my knees have been pretty achy. I actually stopped working out because my knees were constantly making a snapping sound, but it seems that that has gone away so I suppose I should resume physical activity haha!
Within just a few weeks of taking bromocriptine my prolactin had decreased and I started a period! Interested to see what my prolactin level is this week since I started a double dose last month!
My prolactin level is down to 7.4!!! Woo hoo! I'm supposed to stay on 5 mg of Bromocriptine for another 2 months and be rechecked and have an mri in Dec. to check the status of my pituitary gland
I am so happy to have found this site. I never realized that I have been battling my weight for almost the same amount of time I have had my prolactinoma. Nobody had ever mentioned the connection to me and I was wondering why despite all my diet efforts, I have had no success losing the 30 lbs I had gained within only a couple of years of my diagnosis and wondered why I had gained so fast.
I was diagnosed in 1998 with a prolactinoma. I took bromocriptine for a while until I decided that I could live with occasional breast leakage rather than taking meds. I took cabergoline later so I could get pregnant and it worked. I breastfed for 2 years since I figured I might as well make use of the milk I produced anyway (not to mention the benefits of breastfeeding for both myself and my son). It's been 1.5 years since I stopped breastfeeding and while I expected to leak for some time after stopping, the leakage got worse a year later. I finally went to the doctor to get medication again as I got tired of dripping milk whenever I take off my bra.
She rechecked my levels and my prolactin level skyrocketed in the last year. Since my initial diagnosis when my level was only 26 (I had galactorrhea despite a level in the normal range), it has steadily climbed over the past 10 years but was still only 131 one year ago. Now it is 278, more than doubling in one year. My family doctor is concerned that this means the prolactinoma has grown. The endocrinologist had told her to stop checking my levels because he didn't think it would grow. Now I'm worried what this sudden jump means. She also refused to prescibe the cabergoline, stating that she was "too old" to prescribe a "new" drug she had no experience with. How frustrating. Now I have to wait many months until I can get in to see the endocrinologist again.
Anyway, I just wanted to say hi and share my story. I'm so happy to find that I am not alone in this weight gain and inability to lose it.
Crystal
Im so glad to have found this site. I was diagnosed with a prolactinoma when I was 20 (about 4 years ago) and have been on and off bromocriptine since. I too have found that when I am off the medicine I take on a very pregnant look (I have actually been asked quite a few time if I was in fact pregnant, and I wasnt) I have found the opposite of most other people on here though, when I take the bromocriptine It takes a few weeks, but I automatically start dropping weight. While not on the medicine though, I cannot lose weight for anything, and in fact just keep gaining. To be honest this and the lack of energy when off the bromocriptine are two of the only reasons I still take it, as some of the other side effects I experience make it quite difficult to take.
hi, i was diagnosed in 02 for a prolactinoma...got pregnant and started dostinex 6 mos after she was born. Everything was going well until Jan 09 when my Endo told me that dostinex has been found to cause heart valve issues in parkinson's patients, who take the drug in higher doses than prolactinoma treated pts. Well, i have have been off my medication now for 10 mos and i have gained 10 lbs. i should get my results from my pit. lab work up tomorrow.
I was told that I may go on and off the dostinex depending on how my prolactin levels are. my tumuor is 4x4mm...i have not been referred to a neurosurgeon yet because its small. they don't really want to try me on bromocriptine because of side effects.
i do have 2 leaking valves..not sure if its because of the meds...
what have you guys heard about dostinex...when you google it...you see that class-action lawsuits have been filed and pfizer in 06 stopped selling it.
Prolactin down to 4.3! Doing very well with bromocriptine. MRI next month to see the status of my pit gland since my prolactinoma burst in April. Looking to see if the excess fluid is gone. If it is, I'll be done with treatment and hopefully ready to think about having another baby
Doesn't look like this thread gets a lot of attention however, I came across it and thought I'd post my story. I am 39 and have been treated for a pit. tumor for the last 15 years. I was 23 when I finally was diagnosed after about 2 years of going to every doctor to figure out what was wrong with me. Anyway, dostinex didn't exist so I was on parlodel (bromocriptine) for years. That stuff was horrible any how my prolactin was in the 300-400's when diagnosed. In 15 years my pituitary tumor has not much effected my life. I've had two successful pregnancies and births. After I stopped nursing my second child at about 10 months I was switched to dostinex. I've been taking dostinex now for the last 10 years. I don't have any other medical problems so taking dostinex has not been an issue for me. I see my endo about 2x's a year. My prolactin levels are anywhere from 25-35. My tumor is almost not noticble on MRI. I too never had a problem with weight until I started having other problems which lead up to my diagnosis. I have struggled with 50 extra pounds for the last 15 years. I lose it and gain it and lose it and gain it. Good luck everyone!!
Had MRI last week- My condition has improved but is not resolved, so there is apparently still some fluid hanging around in my pituitary gland. Staying on bromocriptine for another 6 months unless I get pregnant before then
Hi. Just wanted to post an update. Finally got in to see my endocrinologist 2 weeks ago and he put me on 0.5 mg Dostinex/Cabergoline twice a week. I asked him if my 30 lb weight gain was related to the prolactinoma and his response was that the endocrinologist that trained him would say no but that he was not so sure. He said to take the meds and let him know how the weight responded. Random bouts of nausea seem to be the most problematic side effect (at least I assume that the Dostinex is the cause of my last 2 weeks of nausea). Does this pass or any tips to help manage it?
Crystal
I am anxiously awaiting test results from my doctor who suspects I have a prolactin pituitary tumor. I gained a substantial amount of weight without any type of lifestyle change. Once I really became aware of my weight I started working out daily and eating much better. Didn't lose a pound. Not one. I was and am so frustrated. In this time frame I had stopped taking my birth control pills and broke up with my boyfriend. Didn't have a period for 8 months before going to the doctor. Had always had some lactation but it had been going on so long I never thought too much about it. None of my previous doctors seemed concerned. I mentioned it to my new doctor and she was fairly concerned! My question to everybody who has dealt with this issue is: with the prolactinoma, did you not only gain weight, but feel increaslingly depressed?
Hi. Just wanted to post an update. Finally got in to see my endocrinologist 2 weeks ago and he put me on 0.5 mg Dostinex/Cabergoline twice a week. I asked him if my 30 lb weight gain was related to the prolactinoma and his response was that the endocrinologist that trained him would say no but that he was not so sure. He said to take the meds and let him know how the weight responded. Random bouts of nausea seem to be the most problematic side effect (at least I assume that the Dostinex is the cause of my last 2 weeks of nausea). Does this pass or any tips to help manage it?
Crystal
I've been on dostinex for 10 years with no nausea however, I take mine before bed. So, if you take it early try at night.
Finally I have found others like me! I was diagnosed with a prolactinoma in 2005 after years of trying to figure out why I was so hyper emotional and sensitive, why I had severe bouts of depression, why my body was exactly the same as it was in the days after giving birth, why I battled with weight and why even though my daughter was 12 I was still getting prolactin from my breasts. I went to many doctors and was even told by one student doctor at RBH Brisbane that I was causing the prolactin from coming out of my breasts myself! I am now 36 years old, I have not been put on any drugs and my specialist has changed me to 12 month visits rather than 6 month visits as since the tumor was found as it hasnt really changed at all, just sitting there the size of an olive pip. I have tried every diet, eating plan and all the advice under the sun for my weight to no avail, I even went as far as doing a Personal Training course ($6k) but nothing works for me ever, the only thing that did work was incredibly distructive for my body and I dont even want to mention what it was. I am deeply depressed about my body and it impacts on my life in a negative way constantly. I am going to a gastro surgeon next week to discuss the possibility of a gastric sleeve, my worry here is that it wont even work and I will waste $10k and still have a hormone problem and weight gain. I am constantly asked if I am pregnant and it is really rather soul destroying. If there is anyone out there that I can talk to at all about this I would be forever greatful. I live in Brisbane, QLD, Australia. Oh, I also found that there is a facebook group dedicated to this issue today, it is called Pituitary-Weight-Support-Group
Hi, I'm new to this so bare with me. I too have been diagnonosed with a pituatory microademoma 6mm. Over 5 years ago I stopped birth control so I could get pregnant and ended up eventually finding out I had hyperprolactinema (at that time the MRI showed nothing).
I was put on Dostinex 2x and successfully had 2 pregnancy's and births which I am very blessed After not being happy with my past endocrinolgist I switched and had a whole new work up. She put me on bromocriptine 2.5 mg and have been on it for about 2 months. My last pit workup showed I am in normal range for prolactin but I am anxioulsy awaiting my period. In the mean time I have become very emotional and moody. At first I thought it was because I was going to start my period but yet nothing. Has any one else had these side effects? How long has the meds taken in others to start their period? I have felt extremely mood, irriatable and depressed as well. Is it the meds? My weight fluctuates as well a great deal and my mid section is where it seems to stay. I'm also getting anxious because when I thought I didn't want any more children I didn't want it to be because of this stupid tumor but because of our own decision, but it's out of my hands. Any advice/support is appreciate, I'm just glad to find some where to talk.
hi, i am new to this thread.
i was diagnosed last year-2009 with a tumor (8X8X9mm) the endo i was referred to, doesn't seem interested in me at all, seemed to be more concerned if i had a thyroid prob or not. (which after tests i don't) it took me to practically refuse to leave his room until he put me on something. in the end i have been prescribed dostinex.
i have only been on it for 3 weeks, but i don't feel different. i suppose i need to give it time to work.
i am just sick of being fat, i hate looking at myself, being asked "when are you due" and i hate my husband looking at me - that doesn't help relationship much, ive only been married for four years, and it turns out i've probably had tumor for 3!! i feel lonely with no-one who really understands what i am going through. i don't want pity from people, i just want to talk.
it is hard for me to deal with my size, i was an aus 6 now i am somewhere between 18/20.
i couldn't take looking at my tiny clothes and threw everything out. now i live in a pair of shorts, or jeans and the same three t-shirts. this is hard, i had collected over the years a enough outfits to fill our walk in wardrobe plus another closet. i hate not wearing dresses and looking pretty, i just dont know how to dress for someone of my size and everything i try on looks horrible.
it is great i have found some girls who are in the same boat as me.
look forward to chatting soon.
natalie
Last edited by prinny p; 04-22-2010 at 11:55 AM.
Reason: forgot something
Prolactinoma - can't lose weight
haha!
I was diagnosed with a prolactinoma in 2005 after years of trying to figure out why I was so hyper emotional and sensitive, why I had severe bouts of depression, why my body was exactly the same as it was in the days after giving birth, why I battled with weight and why even though my daughter was 12 I was still getting prolactin from my breasts. I went to many doctors and was even told by one student doctor at RBH Brisbane that I was causing the prolactin from coming out of my breasts myself! 
I am now 36 years old, I have not been put on any drugs and my specialist has changed me to 12 month visits rather than 6 month visits as since the tumor was found as it hasnt really changed at all, just sitting there the size of an olive pip. I have tried every diet, eating plan and all the advice under the sun for my weight to no avail, I even went as far as doing a Personal Training course ($6k) but nothing works for me ever, the only thing that did work was incredibly distructive for my body and I dont even want to mention what it was. I am deeply depressed about my body and it impacts on my life in a negative way constantly. I am going to a gastro surgeon next week to discuss the possibility of a gastric sleeve, my worry here is that it wont even work and I will waste $10k and still have a hormone problem and weight gain. I am constantly asked if I am pregnant and it is really rather soul destroying. 
If there is anyone out there that I can talk to at all about this I would be forever greatful. I live in Brisbane, QLD, Australia. Oh, I also found that there is a facebook group dedicated to this issue today, it is called Pituitary-Weight-Support-Group
