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asestina 02-21-2007 11:26 PM

Prolactinoma and weight issues

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.

lynn21 02-28-2007 09:36 PM

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)!

Desiderata 03-01-2007 02:28 PM

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. :p

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 :)

asestina 03-03-2007 11:32 PM

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 . . .

lynn21 03-04-2007 11:00 PM

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 :)

asestina 03-24-2007 12:41 AM

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?

lynn21 04-02-2007 07:13 PM

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!

northrnlite 04-04-2007 06:33 PM

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??

northrnlite 04-04-2007 06:35 PM

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!

asestina 04-04-2007 11:36 PM

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!

asestina 04-04-2007 11:39 PM

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!

northrnlite 04-11-2007 06:20 PM

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?

asestina 04-13-2007 12:49 AM

reply about endocrinologists, etc
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--

northrnlite 04-15-2007 12:08 AM

Good luck on your 3 month check Asestina - I'll let you know if I find any good sites.

asestina 05-04-2007 01:33 AM

3 month checkup
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?

northrnlite 05-06-2007 11:33 AM

3 month check
It was interesting to hear how your check up went. Ever since you wrote that note about the peeling nails - I have noticed it on my toenails! How weird. I increased my bromocriptine dose about 4 months ago and now I wonder if my prolactin is also too low and that is causing the nail thing. My endocrinologist sounds the same as yours. I have seen one on the news here where I live (Mpls/St paul MN) who has a private practice and is extremely involved in the obesity aspect of endrocrine problems. Mostly however, I have heard him speak to thyroid and diabetes so I don't know how he is with pituitary but I may give him a try and see if I get a bit more face time/ empathy/ helpful information than I get from the one at the big university medical center!

asestina 06-20-2007 12:36 AM

Prolactinoma non-news
How are you all faring?

I haven't posted in a while because I haven't had much new to report. I went to my regular internist today to get some fresh prescriptions for allergy meds. He seemed to feel that seeking out another endocrinologist would be a mistake. The one I'm seeing at the University is really the only one in my city that treats pituitary tumors regularly, he claims. My doctor seemed also unalarmed by my weight concerns. He was a bit concerned that my blood pressure which is normally low, is now up a bit, but still in a very normal range. So much for the initial bromocriptine very very low pressure side effects--which clearly has gone away.

On the peeling, dry, cracking nails front--they seem to be a bit better with reducing the bromocriptine and also taking Biotin supplements from Whole Foods. I also treated myself to Barielle nail strengthener. One of the above is somehow helping, maybe all.

Weight-wise--a few people have told me I appear thinner. I now dread getting on the scale though and haven't checked, frankly. I know I haven't gained. The whole thing is draining. How about your progress?

fairycakes 07-23-2007 01:13 PM

thank god im not the only one who has a prolactinima and a weight problem here in uk its really unknown, when u say u have a prolactinima people never know what it is.
i have put on alot of weight since this was diagnosed, it doesnt help that have an 11 week old baby, i actually lost weight while pregnant as i was off the calbergoline tablets

asestina 07-31-2007 01:29 AM

Another 3-month check
Not sure which of the bizarre little emoticons displaying themselves as I write this apply to prolactinomas. Can you imagine what that image should be? Yikes.

I went to my 3-month check and saw a different endocrinologist although he wasn't an intern and he was a good listener. My prolactin level went from nearly zero at my last exam to 24, which he claims is good, given that they purposefully reduced my bromocriptine dose to make me ovulate again and regulate me. This has basically occurred. He emphasized that weight, particularly as I am over 40 and all that crud, would take a long time to come off. His phrase was, "whether you gain it from this prolactinoma or another person gains it from too much pizza, it still takes a long long time and a lot of effort to get rid of it." I didn't feel like he was picking on me, rather attempting me to stop beating up on myself. The orders were for me to stay the course, particularly since there has been no weight gain at all. I still find it frustrating, of course.

Also, on my shrink's suggestion, I asked about anti-depressants. This MD was against them as they would all mess with neurotransmitters in some way, as does bromocriptine.

Any news from you all out there???

asestina 10-18-2007 11:20 PM

Anyone have prolactinoma news?
Greetings all,
I have my 3-month bloodwork check tomorrow morning. And it made me remember that I haven't posted at all here since my last check. Any news? Ideas? Progress? Oddly, I have met 3 women lately who all have this problem. Is it increasing in the population? Global warming?

Will post after I see the MD next week.

PKalico 12-07-2007 10:01 AM

New to this
Hi all. I read over all your posts and just wanted to say that I feel I have gained weight due to this as well. I was just recently, well I wouldn't say diagnosed but for lack of a better term, with prolactinoma. I am waiting to get the MRI done to see how bad it is which will probably be in January. My doctor has started me on bromocriptine a month ago and I still have yet to start my period. As for the weight gain I was 130 about 3 years ago and now am at 180. Actually the past month or two I think I leveled off.

Anyway I am supposed to have a follow up appointment on the 17th of this month to see how the meds are working and get the MRI setup. I am still learning about this and hoping it is the cause of the weight gain and can be reversed. (I previously thought the gain was from birth control but it didn't seem to be stopping so I was concerned.)

I would like to hear updates from all of you. Thanks

asestina 12-26-2007 11:30 PM

A year after diagnosis
PKalico--and others too!

I was so glad to log on after a while and find a new post. My endocrinologist keeps insisting this is NOT such a rare problem, so I'm surprised there haven't been more posts.

You comment that your period has not yet begun after a month on bromocriptine. If it is a help I would tell you that I am now a year post diagnosis and on bromocriptine. I have only begun to lose weight in the past three months, and it's noticeable, finally, including baggy clothes. Also, my period took about 4-5 months on the bromocriptine to approach normal. When I first went to the endocrinologist they emphasized that the weight loss would be difficult because even though I didn't gain weight due to overeating, it is still just as difficult for it to go away. Bromocriptine is not the magic diet pill many websites proclaim. My nails and hair and skin are also normal now. But my advice would be to expect this to be a slow process.

Please do write again and hope the MRI goes well.

muffinl 02-14-2008 01:53 PM

I too was diagnosed with prolactinoma when I was a sophomore in college, I had a 60 lb weight gain. After trying bromocriptine (it made me very sick) and was not controling the prolactin that at times would reach in the 130's, I tried dostinex and love it. I have been on it now for 5 years and have been able to loose 50 of the 60 ten more to go though... Those are the toughest. But does anyone else notice that if you miss one or two pills you start to get big in the face (more round) I wonder why it goes to the face. If anyone would like to stay in contact, and discuss differnt things about the prolactinoma, let me know and put prolactinoma in the subject. ***Has anyone thought of using the cyber knife to have it removed**** let me know Thanks

muffinl 02-14-2008 02:03 PM

By the way, I originally saw a regular non reproductive Endocrinologist who was very obsessed with weight and loosing the weight I had gained, I think any doctor should be, What helped me was having the prolactin controled and my endocrinologist put me on a strict diet of a 1000 calories a day, I had to doccument, and bring my list of foods every month when I had my levels checked I would weigh in he would do his checkup and then review my diet and suggest changes. AT The Time I hated it ,but I am so greatful because I truly believe I would still be struggling.

asestina 03-15-2008 12:04 AM

Prolactinoma topic again
It was interesting to read your posts "muffin." I went to a checkup again last week and wound up having a prolactin count that was too low. The doctor wants it up a bit so we are ratcheting back my bromocriptine. It seems I am highly sensitive to it.

As for your query about gaining weight in the face . . . I have not noticed that but it isn't where I normally show weight gain anyway.

The verdict about my health at this checkup was that I have excellent blood pressure and weigh about 20 pounds less than when I began the bromocriptine 14 months ago. And am basically healthy except for this little, uh, brain tumor. I still want to lose about 30 more pounds.

Interestingly, while I was getting my bloodwork done, I met another patient with a prolactinoma, who has been on bromocriptine, on and off, since 1994. She said she had never met someone before me who had one. I am always surprised by the lack of support groups and other such information sharing mechanisms relating to this problem, particularly since my endocrinologist keeps telling me how NOT rare this condition is.

More soon from some of you I hope?

sunny1104 04-14-2008 01:09 AM

A new member to the group?
Hi all,

It was great reading all of your posts...as some of you have said, there are not many support groups out their for prolactinomas. They may not have an immediate danger to your health, but still a concern.

I am actually recovering from surgery that removed my prolactinoma last week. Searching on the computer and watching TV is all I currently do!

I was diagnosed with a prolactinoma last summer. It took about 1.5 years to find out what was wrong with me. I was constantly fatigued and did not have periods. Many other things happened from the prolactinoma....my hair falling out (or more so, breaking off as my hair dresser puts it!), fatigued, muscle aches, no period... however, my horomones only showed low LH and FSH, nothing else. Finally, my prolactin levels increased, and an MRI showed the tumor. I was put on cabergoline, however,I fainted multiple times and had orthostatic hypertension...not very good since I am on call most days becauase I work in healthcare.

After using cabergoline, I used bromocriptine. Yep, that did not work! A lot of the same issues and My prolactin went up to over 311! MRI confirmed concernable growth. So I had it taken out.

I have gained about 20 pounds, with most of the went gain in the last year. I have always been active, play soccer, and my roommate says I am a very healthy eater. Since I am 5'3, this has been very hard on my body and self image.

I meet a new endocringologist in the hospital who said that I should slowly lose this weight if I eat healthy and stay active. Gaining weight is a side affect and he was concerned about my weight. I thought I was going crazy, trying all types of different exercise classes and diets! Feels good to know there are other people out there who understand! I am feeling good and my prolactin is currently at 5.

Brytewitch 04-21-2008 09:26 AM

I was diagnosed last week with a prolactinoma. I was at my OB/GYN, discussing the fact that I can't seem to drop these 30 pounds (getting married in September, so more motivated than normally...) and I had that lovely unexplainable leakage, and have never been pregnant or nursing. My prolactin levels were over 200! I have had more bloodwork done over the last 3 weeks than my entire life, and my very first MRI. I took my first dostinex last night. I am so happy to see this discussion panel, because, being 30 years old and getting married, I was crushed to hear the word 'Infertile', even though I'm told it's temporary. I couldn't find any real information about a corrilation between the tumor and having a weight problem, until I found myself here. I just wanted to introduce myself, and say thank you.

asestina 04-26-2008 11:16 PM

Prolactinoma, continued
Hiya to the new two posters, (or "post-ettes?")--

Thank you for posting and saying hello. I understand fully about all the issues and I am still amazed that more people haven't posted since my original one. I say amazed because I have met 4 women in the past 2 months who have a prolactinoma. It seems less and less rare to me all the time. I am still struggling with the weight issues. It feels daunting. Also, my bromocriptine dose has been decreased again to half a 2.5 mg. tablet, only 3 times per week because my prolactin levels are now considered too low for my age. That said, the lesser dose is messing up my menstrual cycles again. I'm hoping that will stop soon once I adjust.

One of the women I recently met who has this condition has been on Dostinex since 1998. I guess I am stuck with this for a long, long time. I hope we can post more often. Thanks for joining up.

Brytewitch 04-28-2008 08:53 AM

That's actually how we caught mine, i was like, I dropped 20 - 30 pounds over a year, which in itself was like pulling teeth, but the rest is refusing to come off. So I spoke to my Gyn about it, and she was like, anything else weird? (and since I've never been pregnant or had to nurse there was that weird leaking thing...) and she ordered a whole set of bloodwork. So, a month ago I was just trying to fit into my wedding gown (5 months to go!!!) and now I have a tumer in my head.
But, I was really lucky in getting in to see a specialist, and the other symptoms she started naming were amazing, I couldn't believe that all these things were the result of this one thing.
So I am on the Cabergaline and crossing my fingers. I know it's a long process, but I'm determined.

muffinl 05-05-2008 10:51 AM

I have had the prolactinoma since 2001, and the only thing off in my blood work has been prolactin. However the last time I went my cortisol levels were high. Have any ofyou had any expirience with this happening, I got it checked again last week and will talk to my doctor next week, but cortisol has a lot to do with weight, and I havent been able to lose any for quite some time. I am curious to see if any of you have had your other levels effected.

sassiekiwi 05-14-2008 09:30 AM

Another Newbie
Hi All

Glad to have found this thread. I too have a prolactinoma. I have been on Cabergoline for the past year. Today I found out that my tumour has reduced in size by 2mm. Cabergoline has been a good drug for me but I am very tired alot and normally I am high energy.

I had a sudden weight gain of 8 pounds in a matter of 2months. I worked really hard about 3 years ago and lost 35 pounds. I gained back 6 and have been stable until recently so I was upset to gain. And I am not losing it.

It does not help that I am not exercising at present - am just too shattered.

So thats my story! I look forward to seeing how people are doing here.


Brytewitch 05-20-2008 09:02 AM

Hi Sarah!
I too have always struggled with the weight thing for many years. What's really frustrating for me is that we can't tell how much of it is related to the prolactinoma. And, if that's the case, how long ago could I have dealt with the thing and have been thinner?! I could have spent my 20s with bikinis! Or at least some hot jeans!!!
Don't give up, and treat yourself well.
30 more pounds to go for me... I think about it all the time.

asestina 09-12-2008 11:00 PM

Prolactin update
No one has posted in a while, including me. I had a 6 mo. checkup today and discovered my prolactin level is nearly 20, which is up from 1.2 and thus the doctors are happy with it. I discovered I weigh a few more pounds than at my last visit, although still about 15 less than when this whole cruddy condition was diagnosed in Jan 2007.

Unlike some of you who have posted, these doctors, and today 3 interns, do not find the weight issue alarming. They sympathize with me, and tell me it's hard and to give myself a break since hormones wreak havoc on the body. They are putting me on low-dose birth control pills, insisting it won't affect the weight and could even help because it will even out my fluctuating levels.

I am curious to hear other posters' news . . .
Thanks , mg

northrnlite 09-26-2008 11:57 PM

Long time
Hi - It's been a long time since I've been on - lost 20 and gained back 10. Very frustrating. Haven't been to a check up in four years and am finally set up with a new Doctor who I hope will spend more than 60 seconds with me! Have gained 60 lbs since my dx in 1997 but this is my second time around. I had mine removed in 1981 and immediately lost all 25 lbs I had gained that time. Unfortunately, I guess they frequently come back and this time they won't take it out surgically. Too risky to do twice. What aggrevates me is not knowing if it is the tumor or the medication that causes the weight gain!? I'm interested to see what a new Dr. says as my old one would never take time to even comment on my prolactin tests or any discussion on meds. I wasn't even aware that there was anything other than bromocriptine - and I despise it!! I have taken it for 10 years and it has been eating my stomach and esophagus. Hoping to get on something with milder side effects. :?:

AVB828 02-11-2009 08:54 PM

Just got results
Hello Everyone! I am so glad I found this site. I have been going through what seems like a whirlwind for the past year. Today will be the first day I will be taking Dostinex or Cabergoline (I think they are the same thing). Two days ago I had an MRI and it came back that I have a pituitary adenoma or whatever it is called.

Back in August I had been having irregular periods (however ever since I was about 15 they have never been really regular) and I thought it was due to the fact that I had started a different birth control (Yaz instead of Yazmin) which I had been on for at least 5 or 6 years. I was gaining a significant amount of weight and I wasn't really doing anything that different. I had noticed I was eating a little more, however I'm at the gym at 530am three or 4 days out of the week and I eat healthier than almost everyone i know.

So naturally my first intuition was that I was pregnant, but I had taken a few pregnancy tests at home and they were negative, so finally in August I told my OBGYN and they tested me for prolactin along with my thyroid, but prolactin was at 34 which they were not worried about. They I stopped taking all birth control and come January...still had not gotten my period and then that is when i noticed I was lactating (not cute!). I went in and after blood tests my prolactin levels were then at 172 (137 higher thanit was 6 months prior).

Anyways I don't really know anything about this other than the fact that no one around me knows what it is or has heard of it and seems to think its not a big deal so I am really glad to have found this as a way to ask question and gain some knowledge. Does anyone know if going from 34 to 172 in 6 months is normal for this or bad? Should I get a second opinion or be referred to an endocrynologist? Has anyone had success having children with this? I am 26 and want children more than anything so this is the most devestating part.

Obviosly the weight loss thing is an issue as well (20lbs heavier), but it seems after reading the posts that no one is really sure if the weight came on as a cause of the high prolactin levels, but people are not having the results they had thought from the medication.

Any news or advice is helpful! I feel like everyone around me just thinks I'm being a drama queen.

TurtleAnge 03-16-2009 10:59 PM

Wow maybe I should have looked my issue up years ago. I was diagnosed with a prolactinoma in November of 2006 after over 5 years of doctors telling me that the secretion of breast milk was in no way possible unless I was still nursing. 5 different doctors thought it was all in my head.

Come to find out, they were all right but didnt even know it... Before my diagnosis I went from 105 lbs to 130. That was no big deal, I finally looked healthy. But once I was diagnosed and began taking bromocriptine and oral contraceptives. in the 4 months that I took the medicine went to 160 lbs. I was continuing my normal exersize and with the nausea from the bromocriptine, didnt have much of a choice but to eat several small meals daily, which is good for weight loss.

Well in March of 2007 my insurance carrier at work changed and my meds went from $10 to $190 monthly. Unfortunately I cannot afford such a dramatic increase, so I elected to quit taking the medicine. Within just a few months, following my normal routine with the exception of returning to 3 larger meals a day I returned to 140 lbs. I have not been able to drop the last 10 lbs in the last 18 months, but should be happy that i am no longer gaining.

Under no circumstances am i saying to stop your medication. I stopped only due to financial issues, but in the same breath must tell you that due to the same change in insurance I have been unable to afford the trip to the endocronologist or the radiologist department for another MRI (still question why i pay the premium on the insurance, it covers literally nothing) But i do believe that the prolactinoma and bromocriptine (possibly even the contraceptives) contributed to my sudden weight gain.

I have decided to live with the realization that i will have a very annoying issue with secreting milk, and even though i secrete, cannot get pregnant. But one advantage that i see in it, is i also do not mentruate(maybe i am just selfish) It is just another fact of life, 100 years ago I would have been unable to do anything about it. I know the possibilty of reducing my bone density so try to exersize daily and have a high intake of calcium and vitamin D.

Hope this helps someone, or if you would just like to talk I will be around now that i found this forum.

Have a great day!

NW Florida Girl 03-23-2009 04:09 AM

Diagnosed 1996
Hello :)

I just found this board today - sure wish I had found a support board way back when I was first diagnosed! Is this one still active? I would love to discuss various treatments by others and share what I have learned in the last 12 1/2 years.


AVB828 03-30-2009 07:22 AM

Still here
Well...I don't know about everyone else, but I am still active on this post. I have not given an update since I first wrote, but after onlya month on cabergoline my prolactin levels are back to normal at 5. I finally got menstrual cycle that month and I have taken up "The Clean Eating Diet" and lost 9 lbs (this morning) over the last 2 in a half weeks.

I hope this gives hope to everyone that I feel great! I will continue on the .5 mg of cabergoline for the next year and go back to get another MRI.

I would love to hear how everyone else is doing.

asestina 04-05-2009 11:57 PM

I am the person who started this threat but I haven't posted in a long time. My update is small at this point--I had a six month checkup appointment with the endocrinologist last week. My prolactin and blood pressure were great, and they were happy with my results with the low dose birth control pills. I was dismayed that I'd only lost 3 more pounds. The doctor was amazed that I weigh as much as I do and said he would have guessed 25 pounds or so lighter, by my appearance. He scheduled a blood sugar and insulin test for me, though, and I will have results on that soon.

For "turtleange" . . . I find your story very sad and I wish I could help. I wonder if you are aware that bromocriptine is a generic drug, though. At my local pharmacy, it's only $8 a month, with or without insurance. Is that a possibility for you?

I will post again. I wish more of us did, more often, myself included.

How is everyone else?

muffinl 04-06-2009 09:54 PM

I am still here... Nothing much has changed for me. I am still taking the cabergoline (generic dostinex) I was so happy when it finally went generic... I now pay 20 for 3months compared to 130! I do not get my blood checked but once a year... just because I hate needles and I take my meds regularly and have no symptoms... I have been on the bc pill for about 8 years because of the tumor... but this month I am going off of it to see if I can have a regular cycle.. we will see :) I am not trying to get pregnant (actually I just got out of a long term relationship)just trying to see how my cycles are with out the pill.. I have dropped from my 199 at my highest post tumor from a 130 pre tumor. to 140! I am 5lbs away from my goal though I am happy with what I look like now. I hope everyone else is doing well.

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