Hi Lizlivingless

Wow that's amazing.How are you feeling now that you are Tumorless???
Which medication were you on because 300 is really high, I am sure you have a guardian Angel

Thank you all for this forum.

So many of the posts I've read here have been identical to my experience with having a prolactinoma and all the comes along with it.

I was a serious runner for 6 years and ran a marathon in 2009. I was always able to eat huge amounts of whatever I wanted, and my metabolism was so fast, I had almost no fat at all. I had so much energy I was bouncing off the walls. . .

Then I started gaining weight, feeling more tired and sluggish, no periods, and lactating. I diagnosed myself from what I read online and then it was confirmed with an MRI in 2011. My levels were at 832, and I have a macro-adenoma.

I read some posts where people weren't sure if the weight gain had to do with the prolactinoma or the medication. I was on the same dose of Cabergoline for about 3 years, but I only saw my weight go down when my prolactin level went down. Now my levels have gone back up again and are at 950, and I have gained more weight again. I have gained a total of 40 pounds. So from my experience it is DEFINITELY the prolactin levels that cause weight gain.

Also, some people were wondering if the weight gain is just a result of poor diet or lack of exercise. I have been on many diets in my life and done lots of exercise, and when I put my mind to it I could ALWAYS lose weight. With the prolactinoma, my weight just WILL NOT BUDGE. I eat really clean and small portions, drink green shakes every day, do workout videos and take long walks every day. So it IS the prolactinoma.

I agree that my body looks sort of pregnant. The main thing that grew was my chest- I went from a 34B to a 34DD. Its funny b/c a lot of women want their boobs to grow and to not have a period, but not me. It hurts to go running, I have to wear 2 really tight sports bras.

From what I've read in this thread, many of you have prolactin levels between 50-300. Does ANYONE else have levels as high as mine?
If so I would love to hear about your experience. . .

Does anyone know more information about the difference between Cabergoline and Bromocriptine? I'm on Cab and I've never tried Bromo. . .

Thanks again for this post. Very helpful!

One more question. . .

I'm not sure if its the Prolactin or the Cabergoline, but it felt like my digestive system just STOPPED. I got really constipated and had to take laxatives every day. I tried to go off of laxatives and didn't use the bathroom for 6 days! That was really painful. Also have gotten pretty horrible heartburn and reflux.

Even thought my levels are still high and I'm still on the drugs, my digestion is better now. Still finicky, but if I drink coffee first thing in the morning with no food, and then make a green shake I will use the bathroom every day. But if there is a slight shift in routine, everything gets thrown off. Still, very thankful to be back on track.

Did anyone else experience constipation or heartburn and reflux?
If so, do you think it was the prolactin or the medication?

Thanks!

Update
 

It's been almost two months since joining this forum and I have lost only two pounds, despite my best efforts. Ugh, tumor, leave me aloooone. I saw online somewhere a girl name her tumor. "Frank is giving a heachache today". Haha!

My prolactinoma is getting better, according to my endocrinologist. He seemed a bit shocked that I told him I felt really dizzy, confused sometimes, slow, lethargic, etc when I first started cabergoline. But, since then the symptoms have become drastically better yet are still present. He told me with a worried look on his face that if I ever have questions or concerns to call him, email him, contact his office, etc. Oops. Maybe I should have told him right away and he would have taken me off the cabergoline? I'm not a complainer, so I didn't even think of questioning the side effects. Not smart.

Also, seeing people I knew from previous jobs, schools, etc... I can't remember their names. I recognize their faces. I know I liked them. I know I used to consider that person a friend back when I knew them years ago... but I can't remember ANYONE'S name! Not sure if that is tumor related or not?

But, my prolactin levels are lowering and I will have another MRI in January 2015. My endocrinologist didn't tell me the numbers, but lower is better.

I have had 5 periods in a time frame where I should have normally had six. So that is cool, compared to not having any natural period at all for two years or so. But, recently, my breasts hurt. To the point where stretching hurts, jumping hurts, some movement hurts, just being hurts. The endocrinologist said he didn't know what that was about and it could be unrelated. I'm not pregnant, just had my period two days ago.

As far as my endocrinologist is concerned, I don't think he thinks my weight gain has anything to do with my prolactinoma. Maybe he's right, and I have something else going on. He's checking my thyroid hormones(TSH and free T4) on the next blood test in November. Not sure if that is a normal thing to check when you have a prolactinoma or not.

I honestly hope I have a thyroid issue. It would just explain a lot. Meh.

....
 

Hi,
So I've been doing alot of research sparked by some issues my wife has been having over the past few years since the birth of our child. First, I have question. Were any of you diagnosed with prolactinoma without experiencing any discharge from your breast? Second, what were your ratios of hormones? (TSH, FSH, LH, compared to prolactin)

The third thing I have is more of an informational piece as I have spent over 1000 hours researching medical topics leading up to this and including this. For those of you experiencing issues with your weight, and are diagnosed with prolactinoma. I would suggest beating your doctor up about checking your thyroid and adrenal glands for issues related to the prolactinoma. These tumors will typically interfer with the pituitary gland's production of signal hormones to the two other glands. Many of the respectable sites I have read through indicate that this should be common practice for physicians to do regular tests to ensure functionality in these other glands isn't disrupted. Given my current experience with doctors i'm convinced that the vast majority of them probably don't know which end of thier body thier head is attached to.

Hello

I have high prolactin, MRI shows no tumor. My levels are in the low 70s. I spoke with an endo who said I didn't need to take cab or bromo because 1. the levels aren't that high and 2. I am completely uninterested in being fertile. So for now our plan is to keep checking the prolactin levels yearly unless something changes, like lactation occurring.

I'm not fond of the idea of the meds because of the side effects, as I already have orthostatic hypotension. Cabergoline/Dostinex is a particularly concerning med because of it's potential side effect of scarring and fibrosing around the heart and other organs.

So, long story short I hate this prolactin stuff and I wish it would magically cure itself! (As most of us probably wish)

Oh and those who had the surgery, PLEASE, for goodness sake would one of you post what the surgery/recovery was like for you? I kept seeing people on this thread say they had the surgery and then no one bothered to really come back and describe it for those who may yet face it. I currently have no tumor showing up on MRI but I'm still scared that it's just because it's tiny and will show up later. Surgery may be the best option and I really want to hear from others what that was like.

Hi ResearchingXYZ! I'm sorry about your wife's diagnosis. I wasn't diagnosed for about two or three years because I had no discharge from my breasts. The doctors told me there was nothing wrong, I was just stressed. I was finally diagnosed by a young female doctor who decided to check a whole bunch of my hormones with a blood test. I never asked the numbers, sorry.

I see an endocrinologist now and I'd like to trust that he knows what is up but I ask him questions and he tells me it's unrelated and doesn't give me a clear answer of what I should do. Maybe he actually only knows stuff about endocrinology and nothing else? :(


Hi MauiKai! It's good that the tumor isn't big enough to show on an MRI but I can understand why that would worry you. Mine was 7mm in diameter back in December last year(2013). My endocrinologist put me on .5mg of cabergoline twice a week. Little pill but it packs a punch, I would have preferred it if I didn't need medication to take care of this tumor! My numbers are going down and I'll have another MRI next January(2015). I'm hoping the lil bugger has shrunk enough to not be seen by then!

You should look things up that you can do that will naturally regulate your hormones! Like changing your diet a bit, adding certain spices(I love tumeric now!!), sleeping better, finding ways to treat yourself and relaxing(ie bubble baths, etc). I hope everything works well for you!

My Endo also told me that surgery for me would be unnecessary. I think he was right... I would also like some of the ladies(and guys?) to write about their post-op experiences, too! It must be an adjustment!

Originally Posted by pinksunshine:


Hi MauiKai! It's good that the tumor isn't big enough to show on an MRI but I can understand why that would worry you. Mine was 7mm in diameter back in December last year(2013). My endocrinologist put me on .5mg of cabergoline twice a week. Little pill but it packs a punch, I would have preferred it if I didn't need medication to take care of this tumor! My numbers are going down and I'll have another MRI next January(2015). I'm hoping the lil bugger has shrunk enough to not be seen by then!

You should look things up that you can do that will naturally regulate your hormones! Like changing your diet a bit, adding certain spices(I love tumeric now!!), sleeping better, finding ways to treat yourself and relaxing(ie bubble baths, etc). I hope everything works well for you!

My Endo also told me that surgery for me would be unnecessary. I think he was right... I would also like some of the ladies(and guys?) to write about their post-op experiences, too! It must be an adjustment!

It's not that it doesn't show up, there isn't one, period. I have "idiopathic" high prolactin. I have very bad sleep and they are suspecting that is the culprit at this point. I worry though that a tumor could eventually appear. That is why I wish to know how the surgery was, what recovery was like, etc. I'm not willing to take such a horrible and risky med as cabergoline, and so surgery would likely be a first line treatment if a tumor were to show up.

Oh, sorry I must have misread your post MauiKai! Hormones are tricky. Have you tried seeing a naturopathic doctor? If you don't like drugs, that kind if doctor may help you! Sleeping regular hours helps regulate our hormones. I hope you can fix that soon, I know that can be difficult.
My endocrinologist told me a story about one of his patients going nuts because despite the medication working to eliminate his tumor he felt it was still there. I think they eventually did a surgery on him that the doctors saw as unnecessary but the man was very relieved after.
Surgery itself can be a major thing. They have to go in through your nose and get through your skull in order to access that area and sometimes they are unsuccessful in taking the tumor out! I feel better taking this crazy medication, personally. :)

Well-it generally goes with headaches and blurred vision- but , beyond this - it very much depends of the kind of the tumor- if it is a tumor of the pituitary:if it's secretory- I mean secreting these or other hormones- or non secreting...so- it may be about hormonal changes, weight changes, probably mood changes as well..anyway- the one responsible way to accurately establish what exactly is it about- is real life medicine- rather than ''phone medicine''...probably additional investigations- including blood tests and others- have to be done...being examined by her Primary Care physician- first- may be a good idea...

Only Macroprolactinomas are associated with vision problems or headaches, that is what I was told by the doc.

Also, I did finally see a specialist who basically said that the meds are risky and that my number isn't that high, no tumor is present and I don't want to have kids so don't worry about it, just check prolactin once a year to make sure it's not going up to truly high levels.

Oh, that is good to hear MauiKai! :) As long as you keep track of your health it probably shouldn't be a problem for you.

Hyperprolactinomea
 

Hi Eleven11 and everyone,

My prolactin levels are around 1250, and i've put on around 60lbs, mine is caused by a medication though and is a side effect. My boobs have gone from 34C to 40F!!! I too do a lot of exercise, and was disapointed when one of the instructors in the gym came to tell me that someone had commented that they hoped I wouldn't break the machine :( Which was hurtful and quite offensive.

I have been going to my doctor for over 8 years since my weight ballooned literally within months and he just used to say try eating less try weight watchers.

Went to another GP a few weeks ago and and was sent for blood tests proving that my hormone levels of prolactin have sky rocketed, which is why i am so angry with the healthcare professionals for taking years to do this. Atleast I know now, for now.

They are sending me to see an endocrinologist, and referring me to a specialist to take me off the drug administered 8 years ago which was never meant to be on long term but was worried for adverse health effects of coming off which is why i never did this on my own and have saught support ALL of this time.

Please, am i going mad or could this easily be the reason I have gained masses, and i mean masses of extra body weight???? I work out, i eat healthy I don't even drink anymore.

I just need to know i'm not alone and that there is help out there.

Many thanks
swimmingfish123 xxx

There is no proven link between prolactin and weight gain at this point according to my endocrinologist, but as you say the med you were on probably had something to do with it. If the docs help you to wean off of that drug, you may well find your ability to lose weight increased. I hope so anyway! And that person at the gym had NO business saying something like that to you. A gym is there for people who need to lose weight as well as those who just want to keep fit. If their equipment is so shoddy and cheap and that a person who is over the ideal weight can break it by using it then the gym is the problem, not you.

hey! knew to this site i was diagnosed with pcos at 16 and with prolactona at 25. im 5'2 and iv always weighed around 125 -130 and in Nov 2012 my mom died and i started gaining weight and couldnt get it off tried exercise diets etc. now when i was diagnosed with pcos at 16 i didnt have any syptoms really except no periods so i didnt take any meds and birth control made me sick( and i was okay with not having a periode) so fast forward to after my mom died i was 130lbs wearing size 7 and then my weight starting geting out of control so i went to dr and they did so many blood test and everything came back normal of course and finaly i found a dr who tested my prolactin and thats when i found out i had prolactoma. so im seeing an endro dr now and im on glumetza 500mg 4 times a day and cabergoline .5 mg twice a week and im still gaining weight!! im also add/adhd and take adderall 30mg twice a day.

has anyone notice that they were diagnosed with prolactoma or the weight gain happened after something tramatic happen in their life? or any one find any way to loose weight? i went from a size 7 to a size 12 with in a 6 mnth time lapse!!
sorry my spelling sucks but if any one has any advoce etc that would be great thank you!!

Prolactinoma
 

I was diagnosed with a pituitary tumor many years ago, it
Came back 6 months Ago im currently taking dostinex and i have put on 15lbs i have tried many things such as going to a dietian, bootcamp, working out And no far nothing has worked i would appriciate if anyone knows whAt to do! I need help i feel frustrated

Hello, I'm new and 2 years ago I was diagnosed with a 2.5cm macro prolactinoma. Long story short they think I had it undiagnosed for about 10-12 years prior to it being caught. My levels in US terms were about 2,600. I think I am now down to about 70-80 and my new endo just increased my Cabergoline dosage to 3 pills twice a week as my hubby and I would like to try for kids next year. I never connected weight gain and my tumor, but I have noticed that I have a hard time losing weight and have for years now. Anyway, just thought I'd share my story.

I wish this wasn't happening
 

Hi everyone.. I'm going to try to stay as positive as I can. Years ago I lost about 60 pounds doing Jenny Craig. 190 to 133 pounds. I thought my life was wonderful. I felt beautiful and happy. I now sit at 182 pounds 5 years later almost back to my original weight. No change in diet or exercise. I even started with a personal trainer and lost a single pound. thats it.

I was DEVASTATED. I had open heart surgery as a baby and i visit my cardiologist regularly. SHe would make me feel so awful about myself and give me these bullshit packets on weightloss and portion control and vegetables. Like HELLO LADY I see a nutrionist and a personal trainer i am TRYING SO HARD and nothing is working. It's like she just didn't believe me. I came off Microgestin FE (birth control pill) in June of 2014... I stopped getting periods ALTOGETHER, got an ultrasound for PCOS.. NOPE not PCOS.

----Got bloodwork and found my Prolactin was at 72 and was told I could have a tumor and was like crying on the phone after my doc rushed me off the phone without much explanation. I definitely feel dicked around by these doctors by the way. I constantly have to remind them about test results.

----Got an MRI last Friday and found I have a very small microadenoma which i was told is common.

I feel forgetful and like I can't always gather my thoughts. I get dull headaches all the time and migraines occasionally. I feel depressed, anxious, and hopeless at times. My self esteem is at an all time low and I take out my anger and sadness on my boyfriend and family. I do not want to hurt other people's feelings in the way my attitude is making me behave. I have NO SEX DRIVE at all. I'd rather light myself on fire than have sex... so that's just beautiful. My boyfriend is the most handsome thing I've ever seen. He is over 6 feet with huge muscles, a perfect smile, blonde hair, and treats me like a princess but I can't even get excited to have sex with him. He now feels like I am not attracted to him or love him which has strained our relationship. I even started taking a depression medication before all this came about and it isn't helping at all. surprise surprise.

BULLSHIT that this high prolactin isn't connected to weight gain and inability to lose weight. I'm also not convinced that being on birth control for 7 years had nothing to do with this. I've been told most microadenomas are treated with pills with some shitty side effects.

WELL.. I'm seeing an endocrinologist in 15 days and hopefully will be given Bromo. I am guessing I cannot take the Cabergo. due to my open heart surgery and the fact I am missing my pulmonic valve since Cabergoline has been linked to enlarged/thickened heart valves.

I am with all of you. I am determined to figure this out and get my LIFE BACK. I am sick of being sad and fat and ugly. I am sick of people saying I "let myself go". I spend many days helping others as I am getting my Master's in Social Work right now and trying to balance school with my medical issues and working full time. I am focusing on my health and I feel I owe myself this.

You all are strong and beautiful and we should not let this tumor and prolactin ruin us. Together we can get through. I know this thread started a long time ago... but please keep posting your progress on either medication. I need you all right now.

I also have a prolactinoma. I was diagnosed about 5 years ago when i was a sophomore in college. I have been on and off with dostinex, and just started it again yesterday. During this time I have put on about 50lbs (yikes!). I was also very active, healthy, etc, and my good habits have slipped now that I am in grad school, but I do wonder how much is from the prolactinoma/medicine. I am hoping as I continue with the Dostinex ad my prolactin levels normalize I will lose weight (I also plan to get back into great habits)!

Prolactinoma causes Obesity
 

I have a macro prolactinoma. Twenty three years ago, it was micro and caused infertility. The dopamine agonists ruined my life so I had transphenoidal surgery to remove it. Then I was able to have my first child! And five years later, my second. Befor I had my third, it grew back. I went on Dostinex to be able to be pregnant again. It took a couple of years and some infertility work. Then my fourth child -- which was from donated gametes so even though my prolactin level was over 200 on the day of embryo transfer, I gave birth to a beautiful baby. So prolactinoma infertility and I wrestled for 20 years but I bleeping won!!!

For a lot of the past 10 years I'd been asking my (world expert) pituitary endo about weight. I was sure my overweight was caused by having enough prolactin to nurse a full grown football team or two. She said the two were not connected. FINALLY OVER THE LAST YEAR SHE HAS CHANGED HER TUNE. There are many good studies proving the connection, especially with macro prolactinomas, to obesity.

I want to hear from anyone who has ever had success getting back to normal weight with a prolactinoma. The two dopamine agonists used today have ghastly side effects and I can't live on them. And they never did squat for my weight. I'm about 80 lbs overweight and my prolactin level was 550. I had debulking surgery (the tumor is around the carotid artery so I can't have it all removed) and got the level down to 100 but it will just go back up.

I eat healthfully, sort of primal / paleo. I gain on average 20 lbs a year without even trying. The only success I've had was pregnancy. When pregnant, I lost 40 lbs while my baby grew big and healthy. I was not nauseous. The fat on me just finally dissolved instead of just sticking to me like glue. WHAT CAUSED THAT? A HORMONE??? I ate the same as now.

I'm dying to know if anyone has been able to lose 40 or more pounds and keep it off with a prolactinoma!! Is it even possible?? Someone please write your success here. It would help so many of us.

Wondering about Hcg injections plus a normal diet, NOT THAT 500 cal stupid hcg diet. Does hcg as a hormone counteract the prolactin? How did I lose 40 lbs effortlessly while eating exactly the same? My high risk pregnancy doctor was not happy with my weight loss in the final trimester so he asked me to add calories. In the last months of pregnancy I added a big bowl or bar of high fat ice cream every night, for the doctor. I STILL LOST WEIGHT. The baby gained normally! I was losing fat as effortlessly as we all with prolactinomas gain it. Is hcg a way to counteract prolactin?

Anyone had weight loss surgery with prolactinoma and kept the weight off? Anything???

Frustrated and working on it
 

Hi everyone!!
I'm so glad I found this forum. I was starting to think it was just me who is struggling to lose weight. This condition was diagnosed after a very frustrating journey that ended in me having to change my family doc. I have been on Caborgoline and have been feeling better but not great. I'm still tired a lot and have been struggling to take the weight off. I started at 230lbs(yikes!) and have managed to lose 15lbs but cannot get past that. I recently got so fed up by my endocrinologist's being condescending or apathetic about it, I have consulted another doctor. He has a traditional medical license and is also an alternative medicine practioner. He said that is not reasonable to think that prolactin is acting alone and has not effect on other systems. He has recently tested my hormone levels for EVERYTHING!! (Estrogen, all the thyroid hormones, glucose,testosterone, Dhea, morning cortisol and many others) He said that thinks my thyroid might need to be addressed. I'll keep everyone posted. But finally some help...
P.S. He did mention that HIIT (30mins no more)is better than steady state cardio for people with our hormonal disarray. More effective glucose metabolism and less stress on the body

Hi every one!
I came across your forum, upon searching the words PROLACTIMONA AND WEIGHT GAIN... I was astounded to read the entries by ladies experiencing the same life as I do, and I have been for the last 40 year!!! that right! I found out about my micro adenoma in 1975 by a specialist in London ( don't remember his name... sorry) since then, thanks to Bromocriptine, (I was the 1st human to have this drug tested on... :-))I gave birth to 2 children that my eldest is 39 years already...
The only doctor that acknowledged the correlation between Prolactinoma and wight gain was Dr. Hardey,(Canadian) a doctor I went consult with him, regarding removing the tumor, by an operation he developed, through the nose/top of the mouth. Then, he advised against the op, due to calcification around the growth.
After the birth of my 2nd child, I just about stopped taking the Bromocriptine, due to ill feeling while taking it, and gradually extended my size to being obese!!!
Yes, me too, although not a frick of sport, definitely like to eat healthy! not overeating!
Recently, I decided, since the only way I managed to reduce weight, was only by fasting... to go for an operation, to reduce the size of my stomach...
Among the tests I had to go through, was to pay a visit to an Endocrinologist, one that supposed to be an expert in Prolactinomas... She too gave me the feeling that I'm fibbing regarding my food intake, and as far as she was concern, I can submit my self for this op...
Now, girls, does any of you have any info to contribute?
Has any of you considered this kind of operation?
Has any one gone through and can you tell the results?
Now that the date of the op is coming close, I'm having second thought about it, all that bother and pain, for very little future success...
My present Prolactine count as of 4 months ago... 882...

Prolactinoma & Bromocriptine & Weight Gain Issues..
 

Hi Everyone,
I am so glad that I have found this site, as well as other ladies going through the same issues that I have been going through. I was diagnosed with Prolactinoma in February of 2015, when my doctor first looked at my prolactin levels there were at 80, then jumped to 140. Since, I have been put on Bromocriptine to help drop my prolactin levels (now at about 44, which they still tell me is too high), my endochronologists would much prefer to have me on Cabergoline? but in Canada, there is a shortage for this prescription. Since February, and since I have been on the Bromocriptine I have gained about 25 pounds, my face has become much rounder, nails are brittle and always chipping, feet swell, my stomach literally looks like I have a baby bump, and it definitely has not helped with my self esteem :?: as I used to be so comfortable with my body. It is very comforting reading everyone's post and realizing you're not the only one going through this frustrating battle, but also that it could be worse. I have just recently joined the gym again and am going to be meeting with a personal trainer to hopefully get me back down to wear I feel more comfortable. I really hope people keep posting more, it is so comforting to see you're not the only person struggling with this issue..

Did you have gastric surgery?
 

I cannot control my weight, refuse to go on the horrible meds, am done having kids (my history with my macro prolactinoma is above somewhere), and I am considering gastric sleeve or something next year (2016).

Even if I can have 10 years at a normal weight, it might be worth it. But I have a fear of vomiting and I love eating so I am scared. I'm just sick of being obese solely because my body has a super high prolactin so it takes everything I eat and stores it as fst, and never lets me feel full. It's not fair.

I want to know if anyone has had weight loss surgery after struggling long term with a prolactinoma. How did it go? If you had the gastric sleeve, did the removal of ghrelin help you have a feeling of fullness ever?

prolactinoma
 

I also have prolactinoma and have had it for 10 years now and fighting my weight gain every step of the way!
I am on 2 1/2 mg of bromocriptine and still fat! I am so glad I found this site I see I am not the only one feeling stupid trying to explain my weight gain is because of a tumor! I was a physical trainer for years and my husband was a professional body builder I have always been fit.. But I have gained 60 pounds and can not get it off I am wondering if I up my bromocriptine will it help?

This weight gain has taught me a lot My life did a complete 180

My husband left me because I got bigger!
My X superficial friends are gone!
People treat me different!

Funny story or not so funny!
An old boyfriend heard I was divorced and got a hold of me "on the phone"
told me he still loves me loves everything about me so I told him I gained weight and he said jeannie you will always be beautiful to me.
He flew out to see me we met at a restaurant and that night I learned a big lesson! I was so blind I thought he liked ME! the inside personality,heart, smile. But I found out that was all untrue when he told me Oh jeannie I can not fake this you did not tell me you gained 50 pounds! and asked me to leave!!!!!!! I cried all the way home!

My average weight was 102 top 115 when this happened I was 148 I am 5ft and now up to 183 This is now unhealthy screw the superficial people this is about me breathing to hard having a hard time with the stairs I need to lose this weight fast!!!!!!

Update, I've been taking 2 1/2 mg of bromocriptine now, still waiting to cabergoline to become available at my local pharmacy. Does anyone have any info on which med is better, or are the basically the same? Bromo still makes me feel super sick in the morning, as I take it at night right before bed. I just had a check up with my endo at the end of August and found out I am up ANOTHER 10 pounds.. even after being with a personal trainer for 3 months, working my butt off and eating healthy and staying active. When will this ever end?!?!?! I'm having relationship issues too now because I am lacking the self confidence I used to have and I know it really upsets my boyfriend. I know it probably sounds like I am babbling on, but honestly I don't know where else to let go of all of these problems. I'm emotionally exhausted and just wishing this would all end.. on the plus side, my prolactin levels are down to 24 now, my endo says that's almost normal. I just want this damn weight off and to be myself again!

My prolactin 'adventure'
 

I thought I would share my experience. Just over a year ago, I stopped taking the birth control pill (had recently gotten married and thought it might be time to get it out of my system). Well, 6 months later I still had not had a period and I had gained 35 lbs despite no change in diet. I was experiencing hot flashes, mood swings, and big time lethargy. My doctor started running tests and finally after a few months and an MRI I was diagnosed with a tumour of the pituitary gland that was causing elevated prolactin.

I started taking bromocriptine 4 months ago. At first I took 1.25 mg at night only and then graduated to taking 1.25 mg in the morning and again at night. During this time I experienced the common side effects - nausea, headaches, dizziness. I found each time my body was adjusting to a new dose it took about 2 weeks before the side effects went away. I have now been taking 2.5 mg of bromocriptine twice per day for the last 2 months, and finally my prolactin levels are in the normal range (as of last week!). I chose to take bromocriptine instead of cabergoline because it's a more established drug and considered safer for women thinking about getting pregnant. It's also more readily available where I live, and cheaper. The first two weeks on the 5mg per day dosage were ****. I felt so nauseas all of the time. But now I don't have any noticeable side effects. For those struggling with side effects my advice is to always take the drug with food, make sure you drink lots of water, and avoid alcohol completely if you can. Even a drink or two seemed to make the side effects much much worse for me - something to do with dopamine I expect. And know that your body will eventually adjust!

Anyway, since I started taking bromocriptine I have lost 18 lbs. I have a lot more to go, and the weight certainly didn't fall off. I have really taken a hard look at my diet and had to be very honest with myself. Sometimes when you have an obstacle making weight loss very difficult it's easy to put all of the blame on that and assume that nothing you do can make a difference. But even if it takes a long time, eventually the little things can add up to a positive change.

I wanted to share that part of my weight loss journey has included doing the Hormone Reset Diet (book by Sara Gottfried). It's essentially an elimination diet that is designed to help 'reset' your hormones by gradually cutting items from your diet that may be working against you and your hormones. This was the first method of eating that helped me see the scale actually move beyond a plateau that I was stuck on for almost 2 months. Maybe something others with prolactin issues would be interested in trying, so I wanted to share.

It's comforting to know that others have experienced this and that I am not the only one!

Cabergoline Suggested
 

Hey Dipso, my experience was almost identical to yours!

I had been on birth control for years - but I was advised to skip the placebo weeks to avoid my menstrual cycle altogether (long story about being epileptic) and I truly believe I would have never experienced all of the symptoms of a prolactinoma (galactorrhea, major weight gain, no cycle, etc.) if it hadn't been because of my gynecologist's recommendation (of course there's nothing that can be done about it now!).

I think I will actually get the book you suggested. I haven't started taking the cabergoline medication because I have to have another visit with the endo to discuss how the meds could effect my epilepsy. I am 5'7-5'8 and gained around 30 lbs. to where I'm about 170-175 but I want to stop the weight gain while I can. I am 26 and definitely don't want to have to buy a whole new wardrobe, plus I can see how the weight gain has already kept me from being as active as before with hiking and such. Hopefully this blog will get more traffic to have more up to date information and treatment options.

Hi acklablover, good to see that someone still reads this page! I am planning to try the hormone reset diet again to get back on track after the holidays. I hope you do try it and let me know how it goes for you! In the book she shares a lot of the science behind how different types of food act in the body, their impact on your hormones, and how it can cause fat storage especially in the mid-section. I found it very helpful and it's not something doctors really seem to know a lot about usually when I try to ask for weight loss help.

I really wish doctors would explain better about how the birth control pill actually works in the body before prescribing it so readily to teenagers. I started taking it when 17 and had I known what I do now, my decision might have been different!

I'm still plodding away trying to lose the weight. Little by little!

Weight loss and Prolactinoma
 

Hello everyone! I found this forum a few months ago but just decided to post today. I was diagnosed with a 5mm microadenoma in June of 2015. I noticed my periods being more irregular than usual and gaining 20 pounds in a 5 month period. Since then, my microadenoma is the same but I'm still struggling with weight loss. I've been unsuccessful thus far but really hope to lose 30-40 pounds this year. However, my periods are nonexistent now (I've suffered with amenorrhea for the past six months now), which is the greatest concern since I want to become pregnant with our second child this year. I've been trying to research weight loss strategies for people with hyperprolactinomas that's how I found this site again.

Has anyone found success with weight loss? I haven't been placed on medicine yet. When I went to my Endo. in August, she recommend I go on birth control since at that time I'd only missed four months of my period and had just gotten on again. Since seeing her last I haven't been on my period again and it's now March (going on 7 months with no period). I'm praying medication and a nutrition plan will help with returning my periods and weight loss. Any suggestions?

Prolactin adventure
 

Hello, I too have had ups and downs with my prolactin levels. I was 27 when I was diagnosed, I am now 34. I have had ay least 4 different endocrinologists. There were only 2 that I really liked. I have taken both bromocriptine and cabergoline. I prefer cabergoline because it works for me. I had an endocrinologist in October 2015 suggest taking birth control also. I didn't want to take more hormones just to have a period. My current endocrinologist agrees with me. I will be starting cabergoline again after my levels are checked. When I was taking cabergoline the first time, in 2009, I did experience weight loss that was in the normal range. I have been off all medication for at least 2 years and have gained everything I lost back. I was going to a neurosurgeon for possible surgery, but he didn't seem confident about it after sending me to an ENT and the endo that suggested the birth control. After 2 years of being strung along, I decided to revisit one of the endocrinologists that I like and here we are. I wish everyone here luck, just think about birth control very carefully of you are going to go that route.

Diagnosed recently
 

I was recently diagnosed in January of 2016 and it has been a roller coaster. Currently searching for a new endocrinologist that is more educated on prolactinomas. I feel like most doctors think irregular or no menstrual period, headaches, and leaking breasts,are the only symptoms of a prolactinoma and they're not! It's so frustrating that there are so many other symptoms that go unrecognized by these doctors. Fortunately, I've been put on Cabergoline which has brought my prolactin levels down to normal and is shrinking my tumor. However, still no menstrual period and lots of weight gain. I've gained 30lbs! It's frustrating! Also, has anyone else ever questioned the correlation between being on birth control and these tumors? I was on birth control for several years and once I got off all of a sudden I have a tumor. Obviously it's not always the case for everyone but it's a pretty big coincidence for others. I'm going back and forth with wanting to have the surgery to just get rid of it. I'm wondering if the neurosurgeon will even do it now that the tumor is shrinking.

High prolactin
 

Hi
I also have been diagnosed with high prolactin. I do not have a tumor but a negligible cyst..?? I also have had a major issue with weight. I've always had a weight issue but the last 2.5 years have been awful. I run, walk, bike use elliptical. To an exhaustive end. All this combined with watching what I eat. I have an app for this purpose 🙄 My periods during this time were mostly regular. Then this past winter happened. No period for 4 months. Went to doctor, then sent to gyn then endocrinologist. My prolactin came down a lot when my stress level went down & I thought yay!! Well now again, no period and the same bloating, engorged breast feeding again.. I never took the cabergoline but it looks like I'll have to start.. When I try to explain to the docs about how much I exercise and Really watch what I eat, I almost feel as if they do not believe me.. It's frustrating. When I saw this site I thought, finally, I'm not crazy! Other people are going through this too!!! Even people that have known me look and say " are you pregnant?" Ugh It is just so depressing. When I tell them that I ran an 8k. I can they think I'm lying! I'm 5'8 and now 200 lbs, my usual weight prior was 175 ish. I exercise more then I ever have in my life! I'm hoping by taking the cabergoline this will help..,

Prolactinoma and Fat
 

I too have a prolactinoma (9mm) and have gained a ton of weight especially after I started on bromocriptine. 5'7" weighing 200 (used to be 150). Was wondering if anyone has tried a ketogenic diet for weight loss?

Also side note regarding bromocriptine - they don't want people to take this drug for "long periods of time" (we are talking about 5 yrs plus) since it can weaken the right heart valve. So not only will you have an tumor in your pituitary, but then you will have heart problems.

Correlation with Birth Control
 

Originally Posted by pressi82:
has anyone else ever questioned the correlation between being on birth control and these tumors?

I never took birth control pills, but when I first got married (22 yrs ago) I had the depo-provera shot - which totally screwed my body up. Had a period for 6 months straight, gained weight and was uncontrollably moody - worst time of my life. Anyways I'm pretty sure that is what cause my tumor, but nothing to back it up.

In response to some posts. I think that cabergoline is the best meds for high prolactin levels. For you to develop heart problems, you have to be on really high doses, like greater than 1000 mg. Hmm the birth control issue is a good question. The birth control pill may have been masking the problem, it makes you get your period. It control the hormones. But in retrospect did it have some cause for prolactinoma? It really could be some sort of correlation. I myself was not on birth control prior to being diagnosed. My docs were not concerned with my weight gain but it is significant for me���� I'm starting a very low dose of cabergoline 2.5 mg twice weekly. My prolactin has come down due to less stress but still with erratic periods, bloating and engorged breasts. Have a follow up appointment in 6 months but my doc is really good, I can call her whenever I have a question.

Prolactima / Dr doesn't link weight gain
 

It's been 5 years since I've been diagnosed with a prolactima. For 2 years I've been on 2.5 mg of cabergaline one day a week. I've seen no weight loss results. Instead I've gained 150 pounds.
I was never a small person. I'm almost 6 ft tall. At my highest weight I was 375
7 years ago I changed my lifestyle and lost 125 pounds. I stopped losing with no reasons why because I was still eating healthy. I was having severe migraine and a scan showed the tumor had developed. 2 years after losing all that weight it started to come back on, now I've gained back the 100 i lost plus 50 more. I am seeing the supposed top specialist in my state but he does not seem sympathetic to my plight. He says the weight gain is not from the tumor. I'm at a complete loss as now am about 410 pounds. My body is miserable and I don't know where to turn for help.

Depression and other symptoms
 

Originally Posted by Marls:
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 Maris,

Thank you for sharing. If what has happened for you is possible, I'd consider it a miracle. From questions asked by docs recently, I think I've had an issue with prolactin for about 14 yrs but it was discovered only a month ago. In the meantime, abnormal weight gain has been a side effect that I'd flogged myself over & thought was a side-effect of depression. Rock bottom depression, loss of memory & fatigue have been symptoms that have cost me years. Still struggling with these. While Caberlin has brought down the prolactin levels within a month, none of these symptoms have reversed. To imagine a life without depression, now that would be something :).

Maris how long did you suffer from the "opposite of optimism"? Also when you gained weight, was it a pregnancy- like weight...like a crazily bloated tummy and abnormal puffiness in the face?

Thanks,

SR

New to the prolactin world
 

Hey everyone, In December of 2016 I went to see an endocrinologist to find out why I'm not losing weight after eating healthy for two years. Also my periods being a week late just recently as of last November, when it's always on time. I have two kids and I never use birth control. After years and years of trying and never getting pregnant. I decided to go to a fertility dr. I told her please tell me what's wrong with my body. I lost 40 pounds four years ago eating 1,200 calories a day of what ever I wanted like junk and healthy food. Now I'm eating only healthy and 1,000 calories. I track what I eat on my fitness pal. I got a Fitbit and try to put in 10,000 steps a day and nothing I do is working. This so called dr. Told me I'm healthy and there is nothing wrong with me. It's all in my head. So she says I'll do some blood work on you if that makes you happy but I would suggest you see an endocrinologist. I finally see one and he says the same thing. You are healthy but you are also 40 yrs old. Supposedly he says when you hit in the 40's it becomes much harder to lose weight because your metabolism slows down. He says it just so you don't leave my office feeling like you've accomplished nothing I will do some blood work to see if you ovulate. A week later I get a call saying the reason you are not losing weight and getting pregnant is because your prolactin level came back and it's really high.. you might have a tumor in your pituitary gland so we have to do an MRI, and sometimes the MRI will not even see it. I freaked out and cried because I've never heard of anything like that. I to be honest I didn't even know what a pituitary gland was. Anyway I'm still waiting to have this MRI since first of January because his secretary is slow as **** doing her job. I decided to go see an endocrinologist fertility dr as well. I told her my story. She was amazing. She told me yes once you hit your fortys it does get hard but people that have a prolactinoma have to eat clean all the time. She said stay on track and prescribed me cabergoline and femura to get pregnant because I really want one more child. She says hopefully in three months when I see you again you will tell me you are pregnant and if the other dr doesn't do the MRI call means I will take care of that for you. I depressed because after reading every single story on here that it seems as though this is something I will be dealing with till I die. I'm happy that hopefully on cabergoline I can get pregnant. Mixed feelings and I dont know if I have anymore fight in me to deal with this. Btw I called first dr. And asked them to tell me what my level of prolactin was and they told me 40.5 whatever that means. So I don't know as much as everyone else does about this stuff but I'm hoping it will not be stay with me forever. I do get headaches and sometimes I feel as though I'm going to pass out when walking or driving. No breast leakage and the fertility dr. Was surprised I didn't have that. I started googling and I came across this forum. I really though I got this because I was taking melatonin supplements for two years straight. And I think I also read that it can mess things up in the pituitary gland. Who knows I just dont know how I got this and how long did I have it if I lost forty pounds four years ago so easily. Sorry for rambling on and on but I'm
So confused and I hate to take medicine. I'm thinking if I get pregnant on cabergoline that I might not take this medication anymore if this is something I have to deal with forever. I mean if it doesn't go a away and it only shrinks and some people still don't lose weight than I'd rather just keep eating healthy and see if I can do it without the medicine. Please share your thoughts with me everyone cause I feel hopeless. 😔

weightloss
 

I was trying many diets, exercises for weight loss, but I'm kinda lazy :P

2 months ago i found green coffee plus (producer website - igreencoffee.pl) and that really helped me

Now when i'm slim I feel more confident too :)