I started coming to 3FC for weight loss support and never thought I would have thought I would find out or realize that I am not alone in this. I found out I had a small nodule on my pituitary gland just this past January(2011). I had been getting depo injections for BC 9 years and stopped getting the injections 3 years ago so I thought the symptoms I had were from the depoprovera (boy am I dumb:?: ). Anyways, I totally feel like crap now and occasionally I'll go through some bouts of depression but lately its terrible. I recently had to buy a dress so I went to a deprtment store to try some on, I saw myself in the mirror and broke down quietly crying. Then not too long ago I noticed the stretched marks on the back of my legs. I used to run everyday after work in the summer heat and in the rain, and in winter cold. I could go 6 to 8 miles. I used to dance. Now I dont have to do anything and excessively sweat. I feel like a pig. I went to Weight Watchers I lost 60 pounds but then 5 months later I gained 30 back while doing Weight Watchers. I also spent hundreds of dollars and Medi Weight Loss I ate what the told me to counted my calories took the supplements and NEVER had any weight loss with them in fact I gained. I THINK since I saw my Primary Care Dr. last week my boy friend may believe me now that I did not intentionally gain this all this weight. I hate the crying every other day and having to buy clothes that are so big. :( I did tell my Dr. what I was doing to lose weight and asked her some other questions about the other things that are going on me with me and she does NOT yet want to prescribe ANYTHING else to help me since she thinks it has to do with the tumor on my pituitary gland. I did tell her I had not been taking my BROMOCRIPTINE every single day because it makes me SICK to my stomach. I should be on last refill for it right now but nope I am only on the 2nd or 3rd. My Dr. saud at this point with the things that I told her recently started happening she said I am PLAYING WITH FIRE right now. :(:(
Anyways to anyabody who read this I am sorry I went for so long.

Just started with my dostinex Wednesday. Endo tells me that my problem is not "that" severe, though my levels are approaching 70. In the last year, I have gained about 15lbs, which gives me pause. Even though he insists that my adenoma is not growing. (How can he tell anyway, when he just met me?) At any rate, I will keep you guys posted. I will be on the Dostinex therapy for two months at .05 twice weekly. My husband and I will hold collective breaths while waiting and seeing. Thank you all for the good advice, support, insight, cheerleading, and wisdom. Godsends you all are!

Ooops! To everyone in the struggle--Godspeed!

If my neurosurgeon had told me that I'd be picking up weight, I'd have started the meds immediately, trust me. But lactation never bothered me and not having a period is awesome, so I thought I'd skip having to take heavy medication as I'm not too fond of that. I'm going for blood test tomorrow to check the level of my prolactin as well as my thyroid levels. I'll update you guys with the numbers once I have them!

I'm in South Africa so I don't know if we have cabergoline? How easy is the weightloss on all these meds?

Me too!
 

Im in a similar situation to all you guys and really interested to hear so many people with a prolactinoma and weight gain issues. I've always had a bit of a weight issue but it got out of control in my late 20s. I was diagnosed with a microadenema prolatinoma in 1997. Thankfully i have had no side effects both to bromocriptine and dostinex and immediately had a period once I started medication. I quickly lost about 10kg without much effort and another 26 through weight watchers once I realised the weight was coming off easily. I fell pregnant in 2007 and again in 2009 and now have a beautiful girl and boy. (i was on bromocriptine while I was trying to conceive each time. i was told this was a safer option only because babies have been conceived on this drug over the last 20 years without any known side effect. Each time I went off medication as soon as I conceived). I have found it almost impossible to lose weight while breastfeeding and only lost weight once I went back on medication after I had my daughter. I recently went back on dostinex and have just noticed my pants are looser without having changed my diet greatly. I am now convinced prolactin and weight are linked. I do have hope now I can finally lose this weight. Thanks girls for sharing your stories!

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 ½ 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.

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!!

:-(

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...

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.

Hello!
 

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... :dizzy:

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.

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 :(

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!

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!!!!!

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!

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

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.

Same problem
 

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!!!:hug:

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.

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.:goodluck:

Hello, my name is Rose, I'm 20 years old, and for the past 4 years I have been lactating on and off, more on than off, and just recently I was diagnosed with a prolactinoma and a choroid fissure cyst. I thought I was literally going insane because I cannot sleep without the help of sleeping medication, my nerves are very shot plus I have IBS. The blood work I had done came back with a high amount of Prolactin, mine should be at about 18 and its 69, my doctor explained to me that all the hormones that are out of whack are causing my weight gain (which has been about 30 lb's in 6 months, I've been the same weight for atleast the last 5 years of my life), also I explained my insomnia to the doctor and he said that my hormone levels are that of a pregnant woman going threw menopause (YIKES!), I haven't had a period in about 7 months and had 2 of what I thought to be miscarriages about 4 months ago. Despite ALL my efforts to lose this weight I can't shake it, I lost maybe 3 lbs and gain it right back, I walk atleast 30 hours a week, and am a healthy eater, I hadn't changed my habits at all when I gained this weight. The mood swings are terrible and these hot flashes during the night make my skin crawl. :( I've been to a neurologist, neuro surgeon, family dr., and my gyn., everyone passes the buck to another doctor when telling me I should be on a medication called Bromocriptine, no one will perscribe it! The endo. is giving me a hard time about making an appointment now too! I'm going insane! I'm very relieved to see there are many other people who have the same thing and understand what I am going threw. My dad and mom just say I don't exercise enough and eat too much, which is NOT the case!! I've tried everything except surgery to lose weight and no such luck! Any advise would be very very muchly appreciated!

which i don't know what this stupid thing is talking about! I just want to thank you so much and i hope that everything works out for me and i get pregnant soon and my level stay normal.

Hi Stepharmi, yes, I definitely grew very depressed as well as put on slot if weight due to my Prolactinoma! I have not been on any medication past 7 yrs as Neurosurgery was not urgent back when diagnosed, so after I had a bad reaction to Bromocryptine, I stupidly got lazy and never went back to my endocrinologist. Bad move, and one I will be rectifying soon, as we Pituitary Adenoma suffered tend to accept our lives as being "normal" until we look around at others who don't live with constant weight gain, headaches, exhaustion, occasional leaking breasts when prolactin rises, and in my case, absolutely worst of all has been the excessive thick hair growth on my chin, side burns, chest and upper legs, and tummy areas...all the places where society deems it disgusting for women to grow hair! I will b getting my bloods retaken and ask for meds. Overall irls, I feel that my quality of life has slowly dwindled, and keep in mind our prognosis can also cause excess hormones like testosterone as well as hypothyroidism, the very thing that governs our metabolism, making weight gain probable, aweight ssharder. Msg me at [][/] for any tips

Prolactinoma Diagnosed At Age 42
 

I was recently diagnosed with Prolactinoma. My MRI indicates a 8 mm tumor. Needless to say once I received the news I was SCARED AND STRESSED OUT.. Being the control freak that I am I immediately came home and began researching and found this website. In the past 2 yrs I have not had a period and weight gain has been about 30 lbs. The kicker was my eyesight starting going south fast. I am very thankful for finding this website. I can't wait to start treatment, as I am being referred to Endocrinologist. I will keep all posted.

After Surgery
 

It has been a few months since I had surgery to remove my pituitary tumor. For the record it was measured at 1.5 cm by 10 mm.
After surgery my Prolactin levels returned to normal within 2 weeks. After getting the O.K. from my Dr. that I could return to normal activities about 4 months after my surgery I have begun my old work out routines and for the first time in my life been able to see the effects working out actually has on my weight, almost immediately. The farther away the experience the more I realize how much the tumor was effecting me. I don't want to be a poster child for surgery but since I was never put on medication to suppress Prolactin levels this is the first time in years I have felt so in control.
I hope all of you just as much success as I feel I have had over this obstacle. Don't settle for a life you know you hate.
Message me for any extra questions you might have.

hi i am so glad i found this site, i was diagnosed with a prolactinoma early this yr after not menstrating for 6 months and gained a lot of weight. which i thought was because of over eating. i have been on bromocriptine for 1 yr now. my tumor is shrinking and my prolactin levels are normalising. but my concern is for reoccurence. plus my doctors adviced me not to get pregnant now or even in the nearest future. that scared the **** out of me. this seems to be something one has to live with for long time.

New here!
 

Hi everyone! So glad I found a website like this!! Ok for starters this is all completely new to me and I have a million questions and not sure where to start. I was recently diagnosed about 3 weeks ago with a prolactinoma (very small only 3mm), my prolactin was 33 (not super high) but my ACTH is 172 (normal is 6-50) & cortisol is normal. My doctor is going with the prolactinoma diagnosis rather than Cushing's Disease because my cortisol is normal. However, is anyone else's ACTH elevated like this with a prolactinoma?? I have had no issues with missed periods (my periods are actually too frequent!!) or lactation. I originally was experiencing a little weight gain (especially around the middle) no matter what I ate or my activity level and in a short amount of time, fatigue, bad headaches, bloating, mild depression/mood swings, I've experienced my hair getting shorter and shorter (it breaks off quicker than it grows no matter what I do!) and too frequent periods which is what led up to all the testing. I'm on cabergoline (Dostinex) .5mg/week. Side effects kinda suck as times but is mostly tolerable I guess. In my mind I'm not 100% convinced it's a prolactinoma. From what I've been reading, ACTH and prolactin aren't really correlated with each other. Any help would be greatly appreciated because I'm a bit lost right now. :?: (and no, I'm not pregnant lol) Thanks!!

I'm not familiar with the ACTH problem you refer to, but if you've been diagnosed, you should act on the basis of this info. I have higher Prolactin levels than you (around 50-55), but my CT scans show no tumor, so I don't know where my problem is coming from! If at least I had the certainty...

I suggest that you search for an endocrinologist that you're comfortable with. I've seen two endos with great reputations that dismissed me because my Prolactin levels weren't high enough, and sent me back with painkillers, and to a gynecologist. I saw a neurosurgeon with lots of experience who studied the CT Scan and told me his guess was that a tumor may be forming, on the basis that the prolactin levels keep going up despite treatment.

I had my first treatment with Cabergoline (Dostinex 0.5mg) in 2010 and it worked really well. My Prolactin lowered to -0 and stayed low for about 6-8 months. Then in 2011 the levels went up again, but I was able to control the symptoms (mainly breast pain) with painkillers. Right now my levels are high again and a doctor switched me to Bromocriptine, which I could not tolerate at all. My body responded awfully to this medicine: panic attacks, stomach issues, tachycardia... So I may begin on Dostinex again. :(

Update :)
 

Hi everyone! I recently switched drs (to a more reputable one that I can actually talk to) and got some different answers. He thinks my tumor is not producing prolactin like the other dr did but instead that my prolactin is high on its own or as a secondary symptom of the tumor and that I will need to stay on cabergoline until menopause it sounds like :-/.My prolactin is now down to 3 which is good i guess but side effects of the meds are still unpleasant. I had a scary incident driving on a busy highway during rush hour and my blood pressure just plummeted out of nowhere! Not very comforting and a bit scary. I couldn't imagine being on bromo! :-( My ACTH which i mentioned before is still high...cushings disease is another type of pituitary tumor that secretes ACTH rather than prolactin. They usually confirm this thru blood tests for cortisol but mine is normal. He think this just could be the early signs of cushings disease so it'll have to be monitored. Unfortunately there's no medication to fix that type of tumor, just surgery. This would make sense and answer my ACTH question I guess! On top of that my TSH is a little high which might also explain my sudden weight gain and extreme fatigue and too frequent periods (rather than too few which many of you have) so I'm supposed to start taking synthroid. So in a nut shell 1 problem has now turned into 3. Ugh. Trying to stay positive here!

Hi everyone - I am from the Uk and I have had problems with very high prolactin levels currently 1245 I was scanned and tested for a pituitary tumor and they could not detect any on the ct or MRI only that my pituitary tumor gland was enlarged and deviating to one side - I have not had a period for 2 years and have gained so much weight despite not being a big eater and going to the gym regularly. in fact when I should have lost weight I was gaining. I am so depressed as I have gone from a size 10 to a size 18 My breasts have gone from a 34B to a 38DD and I look like I am six months pregnant. I spoke to the GP and the endocrinologist from the hospital and they still do not think the weight is pituitary related but from reading all of your posts I think we can safely say that it is. I have just had a course of provera to bring on my period and have just started taking cabergoline so far I have only had the one weekly dose and it has already given me headaches and dizzyiness but it's a small price if it means the levels will drop - What I want to know is whether I may lose weight if my prolactin goes down - Prior to any treatment I felt lethargic, headachey and very down - this could be due to the fact that I have got so large it has affected my self esteem. I am more worried about the weight gain and hope that the medication will help stabilize it. has anyone had any success with weight loss or do you have any tips x

After over a decade of complaining to 6 doctors of breastmilk (and being told to stop self-stimulating even w/elevated Prolactin labs!) and weight gain when I have eaten the healthiest & exercised the most I ever have (told to eat better!) finally my new GYN listened and I have since been Dx'd w/Pituitary Tumor via MRI. Just getting over the issue of NOT being listened to by many many doctors--been on 2.5 mg of Bromocriptine for 6 months and still haven't lost a pound. I am quite upset over this where I REALLY do eat so healthy I'm surprised I don't look like a Spinach leaf :) Did anyone else take a looong time before they started seeing weight loss?

Hi all,

I'm new here. I have been diagnosed with hyperprolactinemia a couple of months ago and am now waiting for an MRI to confirm prolactinoma.

Just wanted to find out whether anyone found it easier to lose weight after treatment/once prolactin levels were back to normal?

My levels aren't crazily high: 1300 miU/L but I haven't had a period since quitting the pill 10 months ago. My TSH is 284 (which I understand the limit should be around 300) and high TSH= hypothyroidism which is strange as my previous doctor was sure I had hypothyroidism as I had pretty much all the symptoms ie: feeling cold all the time, tired, gaining weight a bit too easily, sparse hair on the outer part of the eyebrows but yet said I'm in the normal range so I'm fine.

To sum up my weight history:

I've always been a little on the heavier side, not massively although I went from a UK 12 to 16 during my teenage years. 3 years ago I went on a diet which involved exercising 4 times a week but still eating whatever I wanted. Within 6 months I lost 15kg/2 stone/30 pounds. During this time my periods which were already painful got even more so, so my doc switched my contraceptive pill.
Within a week I go night sweats, low blood pressure and was completely unable to lose anymore weight, I tried exercising 6 times a week, restricted my diet down to 1200 cals. Stopped any dieting, let myself put some weight on in case it was a plateau, tried it all again - no weight loss ( well I'd be able to lose approx 2-5 pounds which would all go back on the minute I ate over 1500 cals aday so my guess is that it was water weight).

Over the next 2.5 years I had god knows how many blood tests, heart scans, ECG each time checking my hormones and thyroid. Once a doc mumbled something about hyperprolactinemia (but then mumbled that he couldnt do anyhing), but all the docs were ever concerned about was finding why my blood pressure was so low.
I also tried many different contraceptive pills in case that was the issue until 10 months ago when he doc told me he thought I had hypothyroidism and if not I just need to drink more water (I drink plenty!), blood test came back normal and certain it was the pill I decided to stop it.

The night sweats stopped but I was still unable to lose weight and my periods stopped. On top of this despite exercising and eating 1200-1400 cals a day I have put on 15 pounds.

Fast forward to september, I got a new doctor as I'd moved house and slightly dislocated my jaw. Whilst I was there I mentioned oh by the way, I've been struggling with my weight and haven't had a period. For the first time the doctor actually seemed truly concerned with my weight issues and tested my hormones again which came back with high prolactin and was immediately reffered to an endocrinologist.

This is really getting to me as I am assuming that my prolactin probably had been high for a while and stopping me from losing weight and causing symptoms but yet chose not to do anything about it!

I am also thinking that the high prolactin (and hormonal imbalance that come with it) is probably what caused me to have painful periods and other side effects on the pill.

Also I'm sure I read somewhere that you actually need to be outside of the normal range for Thyroid for it to cause symptoms. Anyone here had that experience?

high prolactin and weight gain / Cabergoline
 

Hello -

I have been back and forth trying to figure out what is wrong with me this last two years and final had MRI that found very small growth 4mm and prolactin is high (not crazy like 50-60 ) also had low corisol and then TSH also went crazy but now been coming back to normal.

I also told them I have gained SOOO much weight all in the middle like beach ball. I hate the way I look but no dr can tell me anything just tell me to lose weight.

I feel like something has been really wrong with me for over a year but they all say just take this pill and lose weight.

I hate my body and hate living in it.

Hope the Cabergoline help but this is first website I have seen so far that even talks about weight gain and high prolactin.

Best wishes everyone! :carrot:

Cynthia

Aww I know this whole prolactin thing is horrible, I'm the same as you, it all went to the middle, I feel really disgusted with myself and no matter how hard I try I can't lose the weight.

I'm pretty much got the same situation as you - now had my MRI which came back with a 4mm prolactinoma, and not massively high levels - 1300 mIU/L for a limit of 500mIU/L.

I mean I can understand why doctors are tough with the weight thing, I think lot of people are sure there's something wrong with them when they haven't even tried losing weight. However for the few of us that do actually have a problem it's a little distressing. One of my docs solutions was to simply drink more water!

After researching the net on hyperprolactinemia it appears to be a fact that high prolactin causes obesity as it decreases glucose tolerance - which would make you put on fat around the middle. I also read somewhere that part of that reason is when prolactin increases in pregnancy it also helps women store fat ready to breastfeed.

Starting Bromocriptine tommorow! Wish me luck! I'm a little worried about the orthostatic hypotension though as it's already quite a bit of an issue for me before even taking the pills..

Oh, hai!
 

Hi there. Ow ma gawsh. So glad to have found this thread. I figured I was just a regular fatty. But when my weight started going up for no reason (from a comfortable 65kg to umm. I dont know. Too scared to weight myself but last check it was well over 85kg) despite all efforts to lose it, compiled with severe galactorrhea and my everchanging moods, I figured something was a miss. I had some blood tests run before Christmas which indicate my prolactin is off the charts at over 3900 mIU/L, indicating prolactinoma. A flipping brain tumour. Fan-flipping-tastic.

My MRI is scheduled for next week. And Ill be honest, all of this is a bit much. I already have PCOS, IBS, BPD, OCD and anxiety. I didnt really need another thing to go wrong. Im only 26. I kind of already have my hands full.

From what I can gather from this forum, everyone struggles with this for years! Please tell me it isnt true! Can this be cured?
Im also very hesitant of taking any medications that are going to interfere with my current psychiatric medications (I take Amulsipride and Mirtazapine - taking these are non negotiable) and hormone/PCOS meds (I take Noromin-1 - also non negotiable). From what I have been reading online, the two medications on the market for prolactinoma may have undesirable side effects when taken with my current medication. Is there anyone else out there in this situation? Does this mean my only option is surgery? And if so, what is the success rate/risk?

Argh. So many questions.
Id be keen to bounce any experience of you guys, especially anyone from Australia (Im from Melbourne) or the UK, as our medications/terminology and measurements/healthcare systems are very similar.

Sigh. So over looking like Im pregnant. From a size 10 to a size 18 (UK). Ridiculous.

Thank you all for sharing and making me feel like Im not so effing alone in this.

Be nice. Be brave. x.

I had a prolactinoma back when I was 21 (now 30) with my prolactin levels in the 300's (no, that's not a typo). I was horribly sick and skyrocketed from 170 to 300lbs (I will admit that my habits were not overly healthy during that time).

After 2 years of medications I was tumor free but have an "empty" space (I forget the term they used) where it was.

Like I said, I don't know if it made my weight gain worse, but I do know how difficult it is to live with a prolactinoma and how hard it is to just get out of bed in the morning.

Positive vibes to all dealing with this. :hug:

Hi, it's been a couple of months since I last posted, it turns out I have something in my blood called Macroprolactin so my prolactin itself was at the borderline of the normal range, I think around 480 miUL. Anyway the doc still decided to treat me as I had a 4mm tumour of some form. Within a few weeks I had my 1st period in a year.

However I am still gaining weight very quickly, this seems to happening quicker and quicker for the last 3 years especially in the last 6 months. I am now officially obese, my net calorie intake (food-excercise) is anywhere from 900 cals to 1400 cals (4 out of 5 times around 1100 or 1150). However I am still GAINING HALF A POUND PER DAY!!! I dont understand how can possibly happen to gain half a pound you need to eat 1250 cals but I'm not even eating that, and I record generously and I even record things like a glass of squash.
I'm getting a little depressed as I 've gone from just needing to lose 6 pounds to my ideal healthy weight to being 50 pounds from it in 6 months (I've been dieting in the above way most of the time).
I don't know what to do, my endo said that neither the tablets or the high prolactin should be causing my weight gain (unless its in the hundreds if thousands), he wants to test me for thyroid and cortisol in 3 months, but I don't think my sanity will make it until then.

This will be the 5th time I will be tested for thyroid in the last 3 years and each time I come back normal, I know I've been tested for Cortisol recently aswell and it was normal.

I'm really at a loss now, stupid prolactin and tumour!

Hey there, everyone. I was dx with the pituitary tumor a little over 3 years ago while they were trying to figure out what caused the sudden onset tinnitus and hearing loss. All of my blood tests tell me that my prolactin, thyroid, etc, are in a normal range. The internist still felt that the tumor was still likely to blame (at least partially) for my weight issues, but did not feel that it needed to be medicated. It is still my sick dream that some doctor will feel the need to treat it some how, and the weight (I eat well, workout daily) will magically disappear overnight.

I can typically lose a few pounds during the first 2 weeks of a new diet plan, but then get stuck. My go to weight loss plan (South Beach) from my pre-tumor years no longer does much past the first 2 weeks anymore, even if I stick to it, count calories, and workout for 30-60 minutes a day. Very depressing.

I'm getting a MRI in a few weeks, and I'm seeing new doctors since I've moved 3 hours away. I'm hoping they can help me. I'm curious about the macroprolactin, and will have do do some research.

Glad to have found this thread...

Hi everyone!

I googled "prolactinoma and weight gain" and found this site and thread. I am really surprised doctors don't say prolactinomas can cause weight gain since hormones regulate things like our weight and ability to lose it. :dizzy:

I was diagnosed with a 7mm microprolactinoma last January(2014). I finally had an answer! Around June 2011 I had lost my periods totally. Went to the doctor and she told me not to stress so much. Awesome. I started gaining a bit of weight in July 2011(10 pounds!). I was not amused but I figured I was stressing out because I had not changed my diet, routine or exercise. I slowly went from 115 pounds on my 5'4" medium build frame to 165 pounds within 2 years. I was getting looks and comments about my weight from my husband, classmates, friends, neighbors and family. I was exercising more and eating less. But who would believe me? Results speak for themselves? :shrug:

I had gone to several different doctors throughout the time period of not having any naturally occuring periods at all and one doc had me on birth control just so my periods would occur. But at the time I couldn't afford birth control so that didn't help for long, plus I didn't feel like it made sense. It was just a bandaid.

Finally, I went to a walk in clinic and explained everything to a fresh faced young doctor but also mentioned that I think I might have Cushings Syndrome. So he sent me for bloodwork. Came back negative. Went to the same clinic, a different fresh faced young doctor and she asked why I was there and I said "I have no periods". So she sent me for bloodwork checking a whole list of hormones. The only one that was out of whack was my prolactin. So I was sent for an MRI.

I honestly think the only reason why I wasn't sent for bloodwork to check my hormones in the first place was because I never had any milk coming out of my breasts, which is what prolactin is supposed to do. I naturally have smaller breasts and they weren't leaking so it never came under my radar. It's hard when the main symptom of something doesn't happen to you, how is anyone supposed to know?

Well, I'm now on cabergoline twice a week since January(2014) and I have my periods back. They aren't like they used to be but I still have tremendous cramps when my periods happen. Never thought I'd be so happy for cramps. Unfortunately my weight has only just recently started dropping, like within the last two weeks. I have 3 boxes of "thin" clothes that I haven't worn for 3 years. I am hoping by this time next year I will be able to wear them again. If I didn't have a pituitary tumor I would expect to lose the weight normally and be able to wear them by the end of the summer this year. I am not getting my hopes up.

Here's to good health ladies! :carrot:

btw, I also look "pregnant". I think it has something to do with the amount of cortisol or stress or whatever hormones are going on that makes us put more weight on in the middle? It's not a food baby(pizza?), it's hormones!!

Prolactinoma
 

Hi All

When I was 15, I got severed headaches and constantly felt tired.My Mom told me not to worry, it was probably due to stress from exams. Shortly after that I started seeing "milk" coming from my Breasts which was very odd as I was not sexually active. One evening I was rushed to Hospital because of the severe headaches and also mentioned to my Dr about the "milk", I was then referred to a Gynae who ordered an MRI.

In short, I a 31 year old female. I have not met anyone with the same condition and often find myself searching for answers. I have been on Dostinex for years now, due to the fact that bromocriptine(not sure of the spelling) did not agree with me. I have stopped taking Dostinex for the past few months,in the hope that it will help me lose weight.

Is there anyone who would like to connect and chat about their experience??