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Prolactinoma and weight issues

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Old 02-21-2007, 11:26 PM   #1
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Smile Prolactinoma and weight issues

Hello,

I have recently been diagnosed with a pituitary tumor called a prolactinoma. I have had about a 30lb weight gain due to my high prolactin levels. I am on drug therapy with bromocriptine. I would like to exchange information and ideas with other women who suffer from this problem.
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Old 02-28-2007, 09:36 PM   #2
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I also have a prolactinoma. I was diagnosed about 5 years ago when i was a sophomore in college. I have been on and off with dostinex, and just started it again yesterday. During this time I have put on about 50lbs (yikes!). I was also very active, healthy, etc, and my good habits have slipped now that I am in grad school, but I do wonder how much is from the prolactinoma/medicine. I am hoping as I continue with the Dostinex ad my prolactin levels normalize I will lose weight (I also plan to get back into great habits)!
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Old 03-01-2007, 02:28 PM   #3
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I don't have a prolactinoma, but I do have a large pituitary tumor (*supposedly* non-secreting, though testing has shown that relevant hormone levels are askew). It hemorrhaged sometime late last year, though doctors have tried to assure me that this can be positive. Of course, they also tried to assure me that it couldn't have caused a sudden worsening of symptoms (and 15lb weight gain in a couple months) in that same time frame, so I'm not sure how much I buy that.

I'm not on medication for it, but am trying to treat the hormonal imbalances with customized hormone cream. It's slow and takes a few months to make a discernible difference, but it's worked for me in the past. I find that as the levels normalize, the weight does start to come off (albeit a little more slowly than for most). I'm not quite in your boat, but I definitely sympathize, having just come out of a few very rough months where what I did just didn't matter -- my body and the scale had other ideas.

I hope your course of treatment can help you get your body back on track! I have no doubt that as your levels normalize, you'll start seeing results. Just hang in there
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Old 03-03-2007, 11:32 PM   #4
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Lynn21 and Desiderata,

Thanks for posting. After no one posted for a while I was beginning to wonder if the problem is as common as my research and endocrinologist claim it is. I was interested in what you both put forth. I just finished my second period after beginning treatment, and I think I do feel, and maybe even look, a little less artificially pregnant. My face is definitely slimmer anyway. I know it will be slow and I think that prior to beginning the bromocriptine I had read far too many bogus articles on the Net, boasting of the too-good-to-be-true weight loss power of the drug. I will look forward to exchanging more information . . .
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Old 03-04-2007, 11:00 PM   #5
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Hey ladies- As I posted last time, I just recently started on the dostinext again. I'm going away for two weeks- but still hope to eat as healthy as possible and exercise. Once I get back I will be very serious about it though. I'll keep you posted on how it goes. Also, my prolactin level was 100 when last checked about 2 weeks ago. Now that i'm back on the medicine hopefully it will start dropping. I don't know what I'll be able to do on vacation, but once I get back I'll be happy if I can lose the "normal" 1-2lb/wk. We'll see! I don't know how much of what I have read affects me as well. For example, I have read on many boards how people have gained weight with this condition. Then I get myself upset and think that my weight gain is because of that and that I won't be able to lose it. However, then I realize that I have gotten into bad habits and that my weight has steadily increased over the last few years. I'm going to put in the serious effort of eating healthy and exercising and see what happens! I'll keep you posted. Best of luck to you as well
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Old 03-24-2007, 12:41 AM   #6
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Hi,
Haven't posted in a while but have been checking. How did your vacation work out (to Lynn21)--are you seeing changes due to the Dostinex? I am having a problem which somehow has to be related to the bromocriptine therapy but I'm not precisely sure how--I have horribly brittle nails that split, crack, and look awful. I have NEVER had this before beginning the drug so it must be related. The endocrinologist says my thyroid tests were normal before the drug, but the nails make me wonder. I'm frankly perplexed. Now that spring is here and I can't hide under my giant faux fur coat anymore, I'm anxious for some of this not-so-lovely prolactin weight to go away. Alas, little yet has said byebye. Any news? ideas?
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Old 04-02-2007, 07:13 PM   #7
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Hey asestina-
Vacation was great, thanks for asking. I think it was just what I needed. I wasn't eating that great or really exercising, but I just started getting serious about it a few days ago. So far so good. I've lost about 4lbs. I'm sure a lot of that was just from the shock of eating so horribly, to eating really well, but still it's giving me hope that I can lose if I work for it. I've been walking or jogging (or some combo of the two) for about 60 min a day, trying to do that 4-5 days/wk. I do feel better already, and if I'm tired and don't want to exercise, I tell myself I don't have to run and just go for a walk. I'm getting used to eating smaller amounts and what "full" should feel like...instead of stuffing myself to the point that I feel uncomfortable. I've been trying to eat as healthy as I can. Instead of just reaching for fatty, empty foods, I'm trying to choose something healthy. Not letting myself get too hungry seems to be the key, otherwise I just reach for chocolate!! Let me know how things are going with you. I am feeling better though, so I think it's a combo of the dostinex and exercise. Hope all is well!
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Old 04-04-2007, 06:33 PM   #8
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Unhappy Prolactinoma and weight gain

Hi - I was so glad to find this site. Now maybe I can prove to my family that I'm not just gaining weight because I eat too much or am lazy!! My whole family - mom, sister, brother... are all thin, thin, thin. I had been all my life except a short time in my 20's when I first developed my pituitary tumor. It was surgically removed and the weight came off. 15 years later, it grew back and now in the last 8 years I've gained 60 lbs!! I work out consistantly and diet and the best I'm ever able to lose is 4 or 5 lbs which comes right back if I even eat a dinner out! Sometimes I just gain even when I'm REALLY working out a lot or dieting!! I'm taking bromocriptine and wondering if any of you know if there is a difference in weight gain when taking the bromocriptine vs other meds ??(Dostinex) It is so depressing - I don't know how long I'll keep gaining!! Of course if I tell anyone how the pituitary tumor affects my weight - they look at me - oh right - thats what they all say!! My prolactin level has been way down under 20 for a long time but it doesn't seem to matter. Anyone have some cheery information??
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Old 04-04-2007, 06:35 PM   #9
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Lynn, I'll be interested to see how you do. We are the same height and I'm about 10 lbs more than you. Maybe we can inspire each other. I'd be thrilled to lose 40 lbs. I was less than 140 eight years ago!
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Old 04-04-2007, 11:36 PM   #10
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Hi to Lynn and welcome Northrnlite,

I was interested to hear both of your comments on all this. I am not sure exactly what my weight progress has been since the bromocriptine therapy began. I do get on the scale several times a week, but I feel like it jumps all over the place. I can say I am sure I have not gained since the drug began. I was out walking today and my sweatpants fell off, so that must mean something. Luckily, we're having a cold snap here in Louisville and I had a coat on. Yikes.

I weigh in the same range as both of you, but I'm 5'7". I have not read any comparisons of bromocriptine vs. other drugs and their weight loss efficacy. I find it odd, though, that when one googles bromocriptine, it is often cited on off-market drug sites, or on anti-aging websites, as a weight loss aid. It perplexes me. The endocrinologist was very uninterested in my weight loss questions. I am going back in 3 weeks and will try again to ask. He was mainly concerned with the effects of unchallenged estrogen before the prolactinoma was discovered. Also, to be frank, and not to in any way diminish the concerns of the 300+lbs. women who rely on this website, but I felt that because I was not one of the 300-400 lb. women in the waiting room, my concerns were seen as sort of trivial. My ob/gyn said this outright. I find the treatment of our shared problem to be a lonely place. I'm glad we're sharing on this site!
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Old 04-04-2007, 11:39 PM   #11
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Oh, also, I meant to ask, regarding my earlier question about brittle, chipping, thin nails--have you noticed this for yourselves? I have never had this problem before the bromocriptine. Somehow, it must be related. My hair though, is growing twice as fast as usual. Bizarre!
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Old 04-11-2007, 06:20 PM   #12
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Hi Asestina! I have had the same experience with endocrinologists. I feel like the only thing they focus on is diabetes patients. I can barely get 2 minutes of face to face time with mine. She wouldn't even acknowledge the weight gain as being anything but me eating too much or not working out enough. (both untrue!) I haven't really noticed the nail problem but it doesn't surprise me. Have you found any other sites to be helpful with getting information?
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Old 04-13-2007, 12:49 AM   #13
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Northrnlite,
I have not been able to find any helpful websites. The ones I have found have either been alarmist, or outdated, or downright scary (bromocriptine as an anti-aging drug, a weight loss aid, or a tool for body builders)! If you find one, please share! I am awaiting my endocrinologist three-month check in a week--my galactorrhea is finally gone so I guess the prolactin levels have dropped well. Now, if only the weight loss would kick in. I am tired of not eating. Best of luck this week--
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Old 04-15-2007, 12:08 AM   #14
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Good luck on your 3 month check Asestina - I'll let you know if I find any good sites.
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Old 05-04-2007, 01:33 AM   #15
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Greetings--thought I'd update regarding what happened at my 3-month endocrinologist's appointment. My prolactin level was down to 1.3, which is now below normal. The doctor thought this was too low to allow me to ovulate, and directed me to ease off the bromocriptine to 5 nights a week. He also thought that my complaint of peeling nails was not trivial and indicated to him an estrogen deficiency caused by the bromocriptine and low prolactin. He is testing me again in 2.5 months for progesterone levels and then will decide what to do.

Again, my weight (which remains the same) concerns were brushed aside. He mentioned water bloating due to the low estrogen but kind of looked at me with a shrug regarding weight. I should mention that he is the head of a reproductive endocrinology clinic attached to a large university medical department. I wonder what a "regular" non-specialized endocrinologist would do to address these concerns. Any updates for you others?
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