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Prolactinoma and weight issues

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Old 09-15-2011, 04:56 PM   #166
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Hello ladies, I have always had irregular periods like only have one every other month or maybe skipping a month or two. In 2006 I began lactating and was sent to get an MRI done b/c my prolactin level was high, and I was told that my braces interfered with the results but if I had a tumor it was small and could be dissolved with medication. I was prescribed Cabergoline to take 2x a week. July 2010 I had a period for one day and did not have another one so I went to a clinic in Oct and was told my prolactin level was extremely high 132 and was referred to a Dr. I was able to get in to see the Dr in Nov at which I was told my prolactin level was up to 136. Again I had to get an MRI done, but was told again that it wasn’t a tumor or anything. It was a long process for me so it was March when I found out the results of the MRI & was prescribed Cabergoline again, but this time I had to start out with the dose of one 2x a week for a month and if my period didn’t start change the dose to 2x a week, which is what I had to do. I got my first period since July in May, 10 months without a period reminded me of a pregnancy. Over this time I have gained like 30 lbs, although the Dr & endocrine said that weight gain is a side effect, they didn’t say that my weight would start going doing as my prolactin level goes down (wish it was that easy). Well my last appt was a 2wks ago and which before then my prolactin level was still in the 120’s…. still waiting on a call to be informed of what it is now. I have to continue taking the Cabergoline for 2yrs. I joined this forum because I am tired of aching(back, gout/foot) and every ache seem to have something to do with me being overweight, so I decided to try and take control of my body now since I am able to walk. When I was barely able to walk(due to gout) I was so terrified that I wouldn’t be able to walk let alone jog to get this weight off of me.
After reading all of the posts here, I feel really bad because I stopped taking my Cabergoline in June because I was tired of the terrible headaches they would give me. Thank to everyone here I will start back taking them Monday!!! It has only been a week that I started my weight loss journey but I have lost 5 lbs…. and hopefully the Cabergoline will help me with my weight loss as well.
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Old 10-10-2011, 07:10 PM   #167
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Hi ladies,
I am completley new to this and i literally just 'googled weight gain when taking Bromocriptine and was amazed at the amount of people with the same concerns as me! I really did think i was the only one!
I was diganosed with prolactinoma just over a year ago with prolactin through the roof and a tuma discovered through MRI. This past year has been a real journey and having a 2 (now 3) yr old to contend with i just put all my emotions down to motherhood and stress.
Reflecting back i cant help but feel i'm not the person i use to be anymore. My weight has become a real issue, to the point where i hate shopping and everytime i get ready to go out with the girls i end up in tears about the person looking back at me in the mirror. I have tried every diet going, weightwatchers, slimming world, cabbage soup, atkins and calorie counting. It seems everytime i succeed i gain the weight back plus more! My weight since taking the meadication has rocketed from 10st - 12st 3lbs!
My next hospital appointment is in November and i'm hoping for some answers to what i'm suppose to do. I cant go on like this anymore, dont think i've ever felt so low.
In the meantime ladies i need some advice!!

:-(
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Old 10-16-2011, 07:18 PM   #168
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Default Prolactinoma and Weight Gain

Hello,

I am a 20 yr old female and have been diagnosed with a macroprolactinoma and have gained a total of 20 lbs in 6 months.

I am a professional runner/college athlete and run an average of 70 miles a week. I eat healthy and workout religiously.
I just started meds, Cabergoline, and hope this helps me drop the weight.

Is there anyone else out there who has been through a similiar situation. I feel alone in this and would like a glimmer of hope. I am miserable, nothing I do gets rid of the weight...
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Old 11-04-2011, 11:43 AM   #169
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Hello Everyone,
I am new here. I was diagnosed last week with a prolactinoma and needless to say... I'm not thrilled. I've had symptoms for the past 2 years but never would I have expected it to be a tumor. Our bodies sure work in mysterious ways. I went from a size 2 to 8 in a matter of months this year and no matter what I do, I cannot get it down. Just keeps on climbin'. Tonight I start my first dose of Cabergoline. I am actually quite scared to start it. I'm 26 and the whole idea of having a tumor in my head is pretty scary in general... but from what I've read about this drug, the side effects aren't anything to write home about. Avy14- I sympathize and am here to talk if you need to. It's nice to know that there are so many prolactinoma patients in one place. I'm finding comfort just reading these posts.
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Old 11-18-2011, 04:23 AM   #170
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Originally Posted by ConnolleyJ View Post
Hello Everyone,
I am new here. I was diagnosed last week with a prolactinoma and needless to say... I'm not thrilled. I've had symptoms for the past 2 years but never would I have expected it to be a tumor. Our bodies sure work in mysterious ways. I went from a size 2 to 8 in a matter of months this year and no matter what I do, I cannot get it down. Just keeps on climbin'. Tonight I start my first dose of Cabergoline. I am actually quite scared to start it. I'm 26 and the whole idea of having a tumor in my head is pretty scary in general... but from what I've read about this drug, the side effects aren't anything to write home about. Avy14- I sympathize and am here to talk if you need to. It's nice to know that there are so many prolactinoma patients in one place. I'm finding comfort just reading these posts.
Hi ConnolleyJ!

I'm also 26, same story - started on Cabergoline four weeks ago and I experience next to no side effects. I'm supposed to go for a blood test again this afternoon to check if my Prolactin levels are down, so let's hope it is! I also picked up a shocking amount of weight in a matter of months, surrounded by people who think it's my fault that I am overweight.

Welcome to the club thought...
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Old 11-20-2011, 04:03 PM   #171
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Hello everyone. I stumbled across this forum while I was researching today. I am surprised to see so many folks having the same problem! But it is great to see so much support here. I hope I can inspire some hope in those of you that are suffering.

I was diagnosed with a microprolactinoma in 2009, during my Sophomore year of college. I had been experiencing unexplained weight gain despite working out religiously and eating a vegetarian diet, increasingly bad acne, galactorrhea and mood changes that were bordering on serious depression. The weird weight gain was the first symptom to present itself. I have always been a slim person, so gaining 15-20 lbs. in about 2 months was incredibly frustrating and maddening. I thought I must be going crazy at first.

I was prescribed Cabergoline and have been taking 0.5 mg per week for the past 2 years. Almost immediately I felt weirdly optimistic all the time, I don't know if it was a reaction to the dopamine agonist or a placebo effect, but I no longer felt depressed. After about 4-6 months or so I noticed that my body felt 'right' again, I could eat normal amounts and not gain weight.

Cabergoline did not seem to cause me to lose weight directly, instead it stopped the weight gain and allowed me to have control again. I became even more focused on exercising and eating clean, and my body responded normally for the first time since my symptoms. It took me over a year, but I lost all of the weight and then some. I am in better shape than before this whole fiasco.

I responded really well to Cabergoline, experiencing no side effects (except perhaps the strange positive mood boost). My prolactin levels dropped to a normal level, and the adenoma has shrunken a bit on the MRI scans. The galactorrhea stopped quickly, and the acne has gotten better. My endocrinologist is keeping me on the treatment for at least another year or so before seeing if I can maintain low levels without it.

Please don't give up hope, be sure to give any treatment you are on quite a few months to start working. It is slow going, which I know can be difficult, but keep optimistic about making your body right again. I want you all to have the same outcome as myself, and I think it is possible! (I highly recommend doing research so you can truly discuss things with your endocrinologist, I swear they seem more excited/dedicated to help when they see you have a working knowledge of the condition.)

If anyone has any questions or needs any support I would be more than happy to help out.
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Old 11-30-2011, 01:53 PM   #172
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Hey everybody, I went to the doctor 2 days ago and told him about my migraines, constant running to go pee even after just a sip of something, and of course my leeking He says he thinks I have prolactinoma so I was doing some research on it and came across here. I've always had a "bulge" and always got made fun of for it in school by my "friends" I wasn't heavy at all though Anyway, I noticed my leaking when I was 14 but I didn't tell my mom because I was embarassed and tried to forget it. I started losing my hair (what I've always thought was way more than usual!) and I saw the doctor for that and she told me I was just putting my hair up too tight so I just said forget it. When I was 17 I graduated from high school and moved onto college and stopped wearing my hair up, my hair still fell out all the time and I started getting migraines that were so horrible I slept all day in a pitch black room and had to drop out from college. Things finally started to seem better, I stopped leaking, and my headaches weren't non stop, but about 2 months ago my weight shot up and I haven't changed my eating habits or anything and I was really self concious about it and of course 2 girls I use to work with brought it up as soon as they saw me! I went out to my car and cried and cried, and went out and bought a girdle to try and hide my "fat". My weight NEVER wants to come off, and my stomach has always stuck out kind of like I'm pregnant Anyway, about 2 weeks ago I bent over to pick something up and I felt wet again and so I called my mom to ask her about it and she told me to make a doctors appointment. I went to the doctor on my birthday and he ran blood work and told me he thinks I have prolactinoma and he suspects my blood work will come back showing really high hormone levels and said that he'll call me in a few weeks and then I'll go through an MRI and see an endo. My husband is in the military and we're stationed at a small base in Japan and so we don't have an endocrinologist. I'll probably have to be flown somewhere to have the MRI and to see the endo, I'm going to ask if I can pay to fly back to the states out of my own pocket and look for an endo there. I'm really nervous and I feel like I have nobody in the world to talk to about how I'm feeling, everyone tells me not to stress out over it cause its not cancer but it's still a scary process for me.Not to mention my hair is falling out even more now, I went to straighten my hair today and when I was done it looked like I had cut my hair! I have really thick hair so you can't really tell yet. I don't know if thats even related but its nerve wracking, I'm finding strands everywhere! Anybody else have that problem? I'm not on any medicine yet so I'm not sure if its related at all. Sorry this was so long, just wanted to share my story with people who would understand what I'm going through


Edit: Just read the post above mine and I forgot to mention I've had HORRIBLE mood swings, I'm constantly taking everything out on my husband

Last edited by MorganM : 11-30-2011 at 01:55 PM. Reason: Forgot to add something
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Old 02-02-2012, 11:12 PM   #173
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Smile My 8 yr. battle with my prolactinoma is nearly over ..

I was able to view some of you posts during a web search, and had to join this group to let you know of something that has helped me battle my weight. About 9-1/2 years ago I started noticing weird changes in my body, including unexplained weight gain and that my face was getting puffier. I had recently turned 40 and assumed that I just wasn't going to age gracefully. A year later, after experiencing breast secretions, everywhere, including the hot line to let my 4 yr old ride the Dumbo ride at Disney World. "Awkward" would be a gentle way of describing how I felt. Like most of you, I tried the dostinex, buy the side effects nearly killed me. They told me to go home & try to live a normal life.... I had gone from a 5'6" 140# mother of 5 to nearly 190 in a year and a half. Finally, an Endocrinologist at IUPUI, really took the time to look deeper. The prolactinoma was also greatl affecting my thyroid. You might think, "duh!", but I had taken over 5 different thyroid screenings in the past 2 years. As it turns out, most doctors/insurance companies want to save money by running baseline tests. Well, when they broke it down into individual thyroid tests my T3 & T4 were off the charts. So, I started thyroid therapy and bromochriptine. Within a month I started to feel almost human after 2+ years. That was in February 2005. .... I lost about 10 lbs, but by 2009, I was at 199 lbs & couldn't stand my body.

Good news: in October of 2009, I met with a nutritionist, who put me on a healthier track called, an organic diet. Yes, it's a bit more expensive, and I probably only eat 50% organic fruits & veggies because they're not easy to come by, especially in the winter. BUT, the one thing that has made all the difference in the world, is that I only eat antibiotic & hormone free meets, wild fish, and organic milk.

To date, I've lost over 25 lbs, and I feel amazing! However, this year, my prolactinoma became a macroedema and is pressing on my optic nerves. On February 23rd, 7 years after I started real treatment, and 8 years since the Dumbo experience, it will be removed. I am really hoping to approach my 50's as a much healthier and thinner woman!

So, even if you can't go all organic, if you can just stick with the antibiotic & hormone animal products, I bet you'll look & feel a lot healthier!
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Old 02-26-2012, 12:39 AM   #174
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Default Prolactinoma and Fatigue/Weight Gain

I am so relieved to see that other women are experiencing similar symptoms, not that I wish this for anyone because it is so very frustrating. I was diagnosed with a prolactinoma two years ago and I am having it surgically removed due to continuous growth in size.

I have gained about 25 pounds, mostly in the last six months and I don't like getting dressed in the morning. I eat well for a while and then seem to keep gaining, so then I give up and eat poorly for a couple of days. I had to buy a new winter coat because I couldn't get the zipper up on my old one. I am always tired and my children aren't used to their mom falling asleep on the couch during movie night, 15 minutes into the show. I am extremely forgetful, which is frustrating for me and my family.

I cannot understand why medical sites only talk about breast milk secretion and the absence of menstration as symptoms to the overproduction of prolactin. It is so comforting to find this site and hear stories about other women with similar symptoms. Thank you!!!!!
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Old 03-06-2012, 01:19 AM   #175
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Hello, I wanted to introduce myself. 2 years ago I felt something was wrong. Tired, depressed, gaining weight and Insomnia. Went to many doctors - family, medical, psych. Nothing, we both left the appointment scratching our heads. Went finally to a hollistic Dr who looked into hormone levels my fsh/Lh where off. Ruled out PCOS. A year went by, my weight went from 140 to 160. After much dieting, exercise, mic injections, phentermine. Trained 6 months for the SB mini marathon. Ran it @ 168 lbs. Still my weight increasing. ( I had a fitness coach say I was burning to much muscle running need to do weights) my depression increased, the clothes got too tight. Pretty soon I had lost sight of who I even was.. Suicide was sounding of a better choice at this time. Went to another internal med Dr. Found something my tsh levels where high.. Referred to an endocrinologist. He looked at me listen for about 4 minutes. He said, sounds like you need to get off the night shift, see a therapist and a nutritionalist. Luckily my husband was with me.. Bc I was mortified and completely shut down. My husband demanded for a MRI of my brain bc I had also been having migraines- which were the least of my worries. The MRI was done at it concluded at microadenomas- prolactin producing. Long story short 4 months now on cabergoline my weight is still increasing!! Body image, self esteem is gone. I have no desire to live or see hope. My husband isn't attractive to me. After talking to my therapist she has suggested I take time off work before we move for my husband(going to school). The only improvement is my memory and my ability to find words before I wouldn't have been able to even write this post. Looking for support and am determined to get my life back!
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Old 03-19-2012, 01:08 AM   #176
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Hello, I am a thirteen year old and I had some testing done over my growth hormones because I haven't grown in a year. They came back super low and so then they did some other tests, a prolactin level test. I have not yet had my period and was actually having some problems with my breasts. Anyways, I got a call the next day that my endocrinologist thought I had a tumor. My Prolactin Levels were 554 and they were only supposed to be 18 at the most. I had an MRI the day after that and it showed that my tumor was about an inch in diameter. They believe it is slow growing. I also have a Thyroid disease, Hoshimoto's disease. I gain weight like crazy, and I am very insecure. Even before I started gaining all the weight, stretch marks were developing rapidly. That was 2 years ago, now the stretch marks are all over my body! Sometimes I get super discouraged, because no matter how hard I have tried, I cannot seem to lose weight! I would appreciate it if some one would reply. Thanks.

Forgot to add, My weight went from 75 to 152 pounds within two and a half years... and I am only Five foot and one inch

Last edited by Lulabell : 03-19-2012 at 01:16 AM. Reason: Forgot to add something
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Old 03-21-2012, 06:01 AM   #177
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Hi, I found this forum due to searching for information online.
I found out that I had a Prolactinoma during the Christmas holiday (2011). It was all very embarrassing for me how I found out since I hadn't noticed anything off except for my weight gain, which I figured was because of my lack of physical activity these past few years. I finally started talking with my sisters and mother about my lack of a period for the last 2 years (I have always been very irregular so I wasn't immediately alarmed by it taking a month or 2 off but then kept to myself as things continued this way) I wanted to know if we had some weird family genetics that I should be aware of. I ended up going to my Dr. and she decided to have some blood tests done to get a better picture. My Prolactin level's came back 175. I also had a low Thyroid level. I then went to a Neurosurgeon after having an MRI done. He then refurred me to an Endocrinologist who both agree they believe that my best solution will be to approach my predicament with surgery. Other than the slowest Doctors and their assistants known to man I have had a hard time dealing with family that has latched onto this idea that once I get this removed I will miraculously just become skinny. Like my current state is disappointing to them and this tumor is their savior, makes me feel like I'm the bad guy.
After reading what other people here have been experiencing through their own trials of dealing with their Prolactinomas I feel more at ease about all the other weird side effects such as unexplained moodiness, depression, lack of sleeping, headaches, and the obvious Weight Gain. . . >_< I feel encouraged that there is a light at the end of my tunnel.
I do feel bad that my story doesn't even begin to reach the lengths of hardship that others here are going through (except for maybe the length of this post) but I feel sharing will help me better deal with everything. Hopefully I can help others too.
My surgery is for the end of this April so hopefully all will go well. I have as of yet not been put on any medications to suppress my Prolactin levels so my pregnant sister-in-law and I have been like two peas in a pod with people telling us that our hormones are to blame for any problems we are experiencing. It is nice to find a place where other people actually look past such ridiculous thinking.
Sorry for the Novel but if anyone has any thoughts on surgery vs. medication let me know.
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Old 03-21-2012, 06:19 AM   #178
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Originally Posted by BabyBeluga11 View Post
I am so relieved to see that other women are experiencing similar symptoms, not that I wish this for anyone because it is so very frustrating. I was diagnosed with a prolactinoma two years ago and I am having it surgically removed due to continuous growth in size.

I have gained about 25 pounds, mostly in the last six months and I don't like getting dressed in the morning. I eat well for a while and then seem to keep gaining, so then I give up and eat poorly for a couple of days. I had to buy a new winter coat because I couldn't get the zipper up on my old one. I am always tired and my children aren't used to their mom falling asleep on the couch during movie night, 15 minutes into the show. I am extremely forgetful, which is frustrating for me and my family.

I cannot understand why medical sites only talk about breast milk secretion and the absence of menstration as symptoms to the overproduction of prolactin. It is so comforting to find this site and hear stories about other women with similar symptoms. Thank you!!!!!
I feel like I'm in a similar boat. I get tired at irregular times or just before I'm used to. I've never had such a hard time holding onto information as I have recently. I go to a Dr. visit and forget half the papers and forms they need from me. I have had every Dr. I have visited ask me about milk secretion like it was the deciding factor. I really hope everything goes well for you with the surgery you will have to let us know how that goes!!!
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Old 05-03-2012, 02:07 AM   #179
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OMG, I am so happy to have found this site. I have been dealing with this issuse since 1997. I have always battled with my weight but it has never been that serious of an issue. Now that I have given birth to my first child, my prolactin levels are at 114 and the 35 pds weight gain has been so depressing. Like "Northrnlite" I often try to convince my family as well as others that my weight gain has nothing to do with me gorging myself late at night. I know exactly how you feel...people look at you like "yeah right, you don't eat like that, ok". It is so frustrating. I look forward to seeing if any of you are having success with weight loss. My doctor put me back on 5mg of Bromocriptin daily and I can already see somewhat of a change, but I'm hoping for more. Please share any diets or tricks that has been useful. I'll let you guys know as well how my diet efforts are going.
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Old 09-18-2012, 04:47 PM   #180
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I am so relieved to know there are sites as this that we can turn to each other during unfortunate miserable times as these. My story is that I am 23 yrs old and lost my menstrual cycle. I go to my OBGYN and he runs test & finds my prolactin level is 350...waaayyy above normal. Im freaked out, then become more freaked out to find out I have a macroadenoma pituitary tumor that produces the annoying breast milk Ive been having. I can now understand why I went from 130lbs to 198lbs. I tell you it has been tough having people talk badly about you because you gained weight, people think your pregnant, scared of possibly not having children, depression, headaches, moody, new wardrobe, and frequent urination, slight blurry vision. This is such a horrible thing to have, Im glad Im not alone. The only thing that seems to help me with losing weight is Herbalife. I tried everything else you name it, and i couldnt lose a friggin pound! On herbalife I went from 198 to now im 174. Its been very slow but hey its progress within a little less than a year. As for medication I begin cabergoline pills .5mg twice a week starting october. Wish me luck with this medication guys. Its supposed to shrink my tumor to avoid surgery. I pray it helps to shrink it and shrink my weight as well. Above all everyone keep faith. God gives his toughest battles to his strongest soldiers. I find hope in your stories .... I hope you can find hope in mine as well. I will keep posting my progress.
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