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Prolactinoma and weight issues

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Old 04-22-2010, 09:29 PM   #76
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It's been three years since I posted in this thread! That time around, I ended up losing 30 lbs... but gained 25 of them back when my health went south again.

clang, thanks for sharing your story -- it's been a question mark in my mind for years whether or not I should even think about getting pregnant one day, not knowing what pregnancy hormones would do to this thing in my head.

Customized hormone cream (based on saliva testing) remains the one thing that helps mitigate my symptoms. I hope that all of you find relief.

In my experience, the same way the health and weight problems seem to downward spiral together, there's a flip side. If you can fight against the current (and it's *tough* at first), you can get on an upward spiral; losing weight seems to help with the symptoms. (To a point, anyway!)

I hope all you new to 3FC stick around. There's great support here.
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Old 04-27-2010, 10:13 PM   #77
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Hi Prinny P

Hang in there with the dostinex, for me when I was on it I did notice weight loss, however I was exersisng as well about 3-4 times a week but mainly just walking 1-2 miles ( have yellow lab). The 3rd time around for dostinex I found it affected me differently, giving me extreme headaches and making me very irritable. So that's why my new endo put me on the bromcriptine. Still no period. And my endo doesn't seem interested in me either! Uhgg! My weight loss attempts are up and down, but I wonder what would have happened to me had I been eating poorly this whole time! It's been hard but I've made small changes over the past 2 years to try and improve my health but I don't see the numbers
Give the dostinex some time. Take care!
Anyone know about the Pituitary Network Association? I found it while trying to research our issues.
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Old 05-02-2010, 08:12 AM   #78
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Hi all,

I was diagnosed with a prolactioma in about 2001. Previous to my diagnosis I had the usual symptoms of no periods and lactation. I did gain about 3 stone too. At the time my enocrinologist told me that weight gain was not a symptom. However, I lost the weight after I started on cabergoline and my levels reduced. I have found that I am constantly putting weight on again and have cut back on food and joined the gym only to find that I am continuing to put on weight! My levels have been re-checked and are reading at over 900 which apparently is high (what is the normal?). The endocrinologists always say that weight gain is not a side effect but I just dont understand why I am not losing weight all signs point to prolactin having some influence. I'm going back to consultant on the 18th so I hope he can help! Especially as we are hoping for a baby soon!
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Old 05-04-2010, 04:51 AM   #79
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Hi all. Just saw my endocrinologist last week and he believes that the weight gain is due to prolactin. I've now been on the Dostinex since mid-Dec 2009 and have lost about 6 lbs. It's not too much but it's better than the 1 lb it took me an entire year and turning green from salads to achieve. I've also found that of all the diets I've tried, Nutrisystem seems to be working for me. I think it must be due to the low carb/low glycemic index of the Nutrisystem foods as low fat and low calorie did not work for me at all.

In response to jwiggles - I believe normal levels for prolactin range from 0-24 (in Canada; not sure the unit of measure) so 900 is quite high I believe. I was in the mid-200s in Dec but was down to 5 just one month after starting the Dostinex and periods came back 2 months after starting the med. Previously, I took Dostinex in 2005 and had no problems getting pregnant only a couple months after starting the med. Good luck to you jwiggles.
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Old 05-05-2010, 11:09 AM   #80
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Hello! Thank goodness that this site exists! I cannot tell you how much better I feel knowing that there is a forum for other people suffering from prolactinoma and weight issues.

I was diagnosed with a microprolactinoma in 2005 (I was 25) after noticing leakage, at this point I had been on the pill for years which ultimately masked my symptoms and regulated my periods so who knows how long I was actually suffering from this pesky little tumor. I had gained about 35 lbs and suffered from pretty bad anxiety/depression as well as poor self image since I gained all the weight. After I was diagnosed, I began bromocriptine therapy and had terrible sinus problems. It was like one side of my nose was completely blocked shut when I started the meds (did anyone else have this?). My doctor at the time was a reproductive endocrinologist (who so nicely stated that he was doing me a "favor" by treating me even though I was not planning to reproduce at the time I saw him!) and switched me to Dostinex. I really liked the dostinex and noticed a weight loss. I was also diagnosed with ADD so those meds probably assisted my weight loss at the time. After a few MRIs my tumor shrunk by 2mm so I thought the dostinex was great.

I got married in 2009 and we have decided to start trying for a baby this past December so I consulted a new endocrinologist in October (plus moved out of the area from the jerky reproductive endocrinologist but probably wouldn't have gone back to see him as he was too rude) and he told me to switch off the Dostinex because it would not be good to conceive while that medication is in my body, get off the pill so therefore I began taking the Bromocriptine again. Again, I had the blocked sinuses. Since that time, I have gained approximately 25 lbs, had 2 periods, don't know if I can ovulate and feel miserable about my weight gain! I went to my ob/gyn and endocrinologist and they assure me that the weight gain is not associated with bromocriptine and that I just need to exercise 7 days a week for at least one hour! I really think their professional opinion is a load of BS seeing as how I have been rigorously dieting and exercising, and now with especially reading everything on this site. I have been on Weight Watchers, bought a elliptical machine, walk over 1 mile each day, eat super healthy and even tried a stupid horrible 2 week cleanse diet and there is no difference in my weight. I have even tried to get phentermine since I feel so helpless!! It makes me feel better that I am not crazy, lazy, or just destined to feel like I have no control of my body by reading the info on here. So, obviously, I have to find a new MD and get off of this bromocriptine asap. If anyone has a good endocrinologist in the Chicago area, please let me know.

All I want is to feel fit, healthy, happy and have a baby sometime soon and I don't foresee that happening with my current situation. Good luck to everyone on here and thank you for sharing your story.
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Old 05-07-2010, 11:02 PM   #81
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Keep your head up JMac11! Just keep taking the meds and "trying" and it will happen! As far as the working out and eating healthy, I feel the same way. I wonder what would have happend to me if I hadn't been watching my weight and given up soda these past couple years. It is so frustrating to see other people lose with no problem. I will say I have lost some but seem to be stuck now. I'm in the midwest too, Cleveland area so keep in touch! For me I was blessed with the 2 girls so keep focused, stay postive and be an advocate for yourself since these doctors seem to give us the run around and really don't seem to know what is affecting what. I get alot of " I don't know's from my endo. But she is much better than my last doc. Take care!
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Old 05-26-2010, 04:33 PM   #82
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Originally Posted by philosophy barbie View Post
Did anyone else find that they didn't just put on weight, but that they put it on in a very 'looking pregnant' way? My stomach has totally ballooned as if I'm several months along. Does this go away once you start on the medication (I don't mean do you lose all the weight straight away, but does your stomach at least stop looking like a beach ball?)? (P.S. This is my second time around with a prolactinoma, but I don't remember having this problem last time)
Yes, I look pregnant as well. I've had 3 people ask me when I'm due (or congratulate me) over the last several months. It's gotten to the point that I just tell them "October", if they are a stranger. There's no point making them feel bad...

I just found out about my prolactinoma (8mm) last week. I go in to see an endo next week, and am hoping to start Cabergoline. I sure hope it helps with the weight gain! I've gained 20 pounds in a year, but that included training for a 60 mile breast cancer walk, doing yoga, and P90X. I'm glad I did those things because who knows how much weight I would've gained!
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Old 05-26-2010, 04:41 PM   #83
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Hi Everyone,

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?
I have absolutely felt more depressed. I had attributed my depression to Post-Partum, but it's getting worse and worse. Come to find out I have a prolactinoma.

I'm hoping the Cabergoline will help with the depression symptoms. If not, I will have to get on anti-depressants.

Best of luck!
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Old 05-26-2010, 04:45 PM   #84
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Originally Posted by prinny p View Post
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
Hi Natalie! We have a lot in common! I have had the same feelings as you, and have also been struggling with my weight, marital tension, and low self-esteem. I would love to talk with you some more. Google me and "friend" me on facebook if you'd like: Tanyah Stone
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Old 05-27-2010, 11:25 PM   #85
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Hello all,
I am new to the forum. I decided to register after this site came up when I used google to find out more about dostinex. I saw an endocrinologist the end of april after noticing for the last year that I was producing milk. My prolactin levels are with the normal range as well as all of my other hormone levels. The doctor suggested I take it for symptomatic relief. Once I started reading about people who have similar experiences with producing breast milk and having trouble loosing weight I was in shock! I am also struggling with this and eat a very clean diet, exercise regularly etc with little to no results. I don't expect over-night results however, my outlook is quite realistic. Have any of you taking dostinex noticed weight gain, nausea while taking it consistently? I'm supposed to start it tomorrow night but I'm afraid to take it if it will have a negative effect on my weight.
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Old 06-26-2010, 01:21 AM   #86
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Hello all-
like you, i too am relieved to hear of others struggling with the same type of issues. I was recently diagnosed with a prolactin level of 321 and in fact have a 2cm tumor on my pituitary gland. the past two years i have had absent periods and 30 lb weight gain among other symptoms. overall, i have just not felt myself. i started taking dostinex about 3 weeks ago and really have noticed no changes other than my mood swings have diminished ever so slightly. I know the issue of my weight should be one of lesser concern, but it is soooo frustrating killing yourself in the gym and eating right to no avail. has anyone had any progress taking this drug and if so how long has it taken to show that it is in fact working?
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Old 06-28-2010, 11:09 AM   #87
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Well i have now been on dostinex after being diagnosed for a year. I have lost and kept off about 10 lbs and am slowly losing weight so there is hope. I feel like once you're diagnosed and you get over the whole what is happening to me factor...you are then at I'm annoyed that i gained this weight factor. I can tell you that I think not losing the weight is a combo of things for me. 1) I"m annoyed I gained the weight in the first place, and i am working out and watching what i eat, but could i do better? yes. 2) i'm a little less motivated since it is such a struggle so could i be more focused? yes.

Although my tumor was not as bad as others on this post and I did catch it fairly soon. Gained about 25- 30 lbs. I still feel like after i started taking medication life was back to normal for the most part. All my symptoms are gone... i have my period regularly...and as i said previously i've lost some of the weight.

I think everyone's body is different, but there is hope. I'm glad there is a thread like this for support because although it does seem to be appearing more and more common...there is still not a whole lot of knowledge on it from a public standpoint and its nice to have a place for support.

Best Wishes to everyone! Keep your heads up
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Old 07-08-2010, 03:47 PM   #88
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This forum is so helpful. I thought I was the only one finding it odd that I was putting on weight! My endocrinologist said that the dostinex would help me lose the weight but I am not really seeing that happen! The last 2 weeks I have resolved to eat right and count my calories-so I was pleasantly surprised that I had lost 3 pounds in one week! Fast forward a couple of days and I have gained it all back! How in the world did this happen? Even if I did eat a pig out meal I still shouldn't have gained 3 pounds in a day! Anyway I am convinced that it is the Dostinex based on the timing. I take 2 pills twice a week, the time that I started this eating plan started from the time I took the last dose to the next. While I was in this in between stage I lost the 3 pounds but the day after my first weekly dose those 3 pounds were back! And I should also mention that I take an intensive, hardcore exercise class twice a week so some weight should be dropping.
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Old 07-13-2010, 02:58 PM   #89
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Wow i just found this thread. It amazes me how many posts there are stating there dr states this has nothing to do with weight gain. I remember when my periods stopped and i remember how the weight started going up and up. Now 50lbs heavier (4yrs later) i want it off. I just started my cabergoline about 4 weeks ago, and i agree.. if you miss one my face seems to swell up. It took months of argueing with my OBGYN about not doing BC and that there was something wrong before any testing was ordered. If i had stayed on the BC i would still get periods and would have never found out i had this.

I've had a baby prior to all of this (he's 12) and i only went up to 176 lbs! I cant stand the way i look, and have a closet full of cute clothes that i want back in! The only reason i'm not 200+ is that i was in a bootcamp 3 days a week 5am for 4 months prior to my dianog. Also i've been married now for 1.5 years and my husband has no kids. I fear
1. I cant have any
2. If i do i'll blow up so large I'd to depressed to even wanta do anything.

I'm thinking of just pushing for surgery.. which if it's not a secreating tumor is the only way anyway. I'm tired of this wait and see... test.. wait.. it's too much money and too much time. An MRI was $1800 (thank god we have good insurance) to get one every 4 months to just "see" how things are going.. or even every 6 is crazy.

Since mine is macro (over 15cm) So i guess that's why they are atempting to shrink it first. Either way, I've waited too long. My endo is great, but the low libido and me not feeling "sexy" is not helping my marriage.

I have a question.. does anyone know anyone who has NOT had to take drugs for the rest of their lives?

sorry for the rant.... but it does make me feel better.
I've had to argue and take matters in my own hands with my drs. It took weeks to get referrels and appointments, lots of copay and nothing had been done .. my nero dr. took 3 weeks to get a referrel together.. by that time i had gone to another dr and gotten them to approve it.. and i have a PPO!
ok ok i'm done.. sorry guys.
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Old 07-13-2010, 03:01 PM   #90
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Originally Posted by terpry72 View Post
This forum is so helpful. I thought I was the only one finding it odd that I was putting on weight! My endocrinologist said that the dostinex would help me lose the weight but I am not really seeing that happen! The last 2 weeks I have resolved to eat right and count my calories-so I was pleasantly surprised that I had lost 3 pounds in one week! Fast forward a couple of days and I have gained it all back! How in the world did this happen? Even if I did eat a pig out meal I still shouldn't have gained 3 pounds in a day! Anyway I am convinced that it is the Dostinex based on the timing. I take 2 pills twice a week, the time that I started this eating plan started from the time I took the last dose to the next. While I was in this in between stage I lost the 3 pounds but the day after my first weekly dose those 3 pounds were back! And I should also mention that I take an intensive, hardcore exercise class twice a week so some weight should be dropping.
THE SAME THING HAPPENS TO ME! i lost like 3 lbs in a week.. went out and bam! right back up again. i take cabergoline
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