Prolactinoma or high prolactin levels

oh wow. I couldn't believe it when I saw this post. I (did) have a prolactinoma, and your description sooo closely mimics my experience. I, too, was always thin... had 3 kids, lost all the weight after each one and then suddenly and quickly started packing on pounds with no real explanation. Friend me and I will be able to share more with you privately : )

Hi Ladies,

I was diagnosed with a prolactinoma in 2007. Previously I never had weight problems, but the past couple years have been challenging. I have tried to talk with my doctors but they just ignore my concerns. Thank God for continuing to give me the strength and wisdom to make my fitness goal a reality. Praying for you ladies to reach your goals and for normal prolactin levels.

I know this is an old thread but I was just told yesterday I have a pituatary tumor and have been referred to a endocrinologist. I cannot get in to see her for a month so I have been reading up on everything since I've never heard of such tumor until recently. I was at 118 3 years ago healthy and happy and then symptoms started I gained weight went from 118 to 172 in 2 years I have gone down to 159 since with extreme exercise and diet. But still want 35 pounds off of me. My BMI says I am obese as I am 5'3" and my weight is mainly in my stomach. Other symptoms anxiety, memory loss, mood swings, horrible adult cystic acne, low energy, non existent sex drive. My drs over the last 3 years brushed me off tried to put me on aniexty meds told me I wasn't eating well or exercising well (when I clearly was I even brought them MFP diary logs) I've been fighting ever since and FINALLY my dr ordered a hormone test which showed very high prolactin levels which in turn he ordered an MRI and found the pituatary tumor. I feel great that FINALLY my persistence paid off and that I proved to my dr that there is a reason for my symptoms. I have a trip to Jamaica planned in 3 months and I have been working so hard with barely results to lose these 35 pounds I just hope it's possible and that I can start feeling like me again!! I would be happy to have y'all add me and discuss further I don't know very much yet on this and don't have anyone to talk to about it. Thanks! I hope you are all well!

I was diagnosed 3 years ago, and one of the first symptoms I experienced was weight gain, even though I was actively changing my eating habits to lose weight. It's been difficult to lose the weightm even while on Cabergoline, but I'm not giving up hope. Without being consistent with exercise, I'm down 8 lbs since they found the tumor. I've been doing a health challenge/journey with a friend, and I've been commited to consistency, so I'm hoping for good results! Until I see changes, I'm focusing on staying excited about how eating healthy and working out has made me feel awesome! I'm so glad there is a network of support for this. Sending well wishes to all of you! : )

I'm curious have you loss weight with cabergoline?

Jamelyn2075, I think you need to talk to you dr. As far as I know the BC itself can raise prolactin and any period you have on it isnt a real period, all it will do is mask the problem. Have you had an MRI? They should be checking that to see if you have a prolactinoma which is the main cause of high prolactin. It's important you get on top of it if you ever want to have children as high levels mean infertility. And if you are trying to lose weight it will make it a lot harder as it makes you less tolerant to Glucose meaning you store fat easier.

I've had symptoms of a hormonal imbalance for 3 years now, but each blood test everything came back normal - doctors were scratching their heads as I had all the symptoms of hypothyroidism but it always came back normal, I was also trying to lose weight but no matter what I did I could only lose water weight. I was on the BC at the time so I thought I'd stop it, which I did and 8 months later no period. Moved house so new dr, who thought I may have PCOS, did a blood test checking all possible hormones, turned out all along I had high prolactin. Its not majorly high: around 1300 with a limit of 550 but my MRI showed a 4mm prolactinoma. For the first and a half years i only put on about 6 pounds but I was running 10k 5 times a week and eating 1200-1400 cals a day, in June I moved house so didnt have time to run and have been woking majorly hard so still havent had time to run and my weight has shot up by about 30 pounds in 5 months despite eating heathily.

Tried Bromocriptine but it didnt agree with me so I'm now on Cabergoline, the first week was fine- no side effects but I'm on the second week now and I have a constant headache so is driving me nuts, especially since I wanted to start exercising again this week.

Is there a more secure place to discuss this? I am having the same issues.

Hey guys! I have high prolactin levels. I'm torn about going for an MRI as my levels are in the 50's. Would you recommend a MRI or seeing an endocrinologist first? I'm tempted to ignore it all. I too have had unexplained weight gain over the past 18 months and a mysterious secretion from my nipples. Please advise!!

Hi to everyone! I was sooooo pleased to find this conversation today. It seems like I am reading the story of my life in each one of your posts. I'll give you a (hopefully) short summary... When I was 14 years old I was diagnosed with a pituitary tumor (I am 42 now...). My symptoms at the time were severe headaches and the production of milk as if I was pregnant and later on, a delay in the coming of my period which I got for the first time at 18 after I started getting treatment...

The treatment for the condition at that time was by taking a medicine called Parlodel (Bromocriptine) which gave me horrible side effects, especially when they had to give me doses that went up to 12 pills a day (2.5 mg) in order to get my prolactin somewhat under control. Normal levels are from 0-25 and the lowest I have ever had it has been around 75. When I went to college I began being irresponsible with my medication since the side effects were so horrible that I could barely study. That meant that I would take it for some periods and then abandon the treatment for long periods as well. When I turned 23 I decided to get the tumor removed under the belief that I would finally get a permanent fix to the situation and that I could marry and have kids some day. However, after the tumor got removed, the prolactin never came down. I then began almost 20 more years of interrupted treatment with the same medicine for the same reasons.

In 2008 however I began to gain weight rapidly. I had quit my treatment yet again and I had stopped playing tennis because some knee injuries. I have always battled with weight problems but I had always been able to go back to dieting and loose the extra pounds. Not this time. I gain more than 25 pounds in the blink of an eye and have been struggling to loose them. I changed doctors and he put me on a different medicine (Dostinex or Cabergoline) a year and 3 months ago. The same day I changed doctors I began at the gym doing about 2 hours a day 5 days a week. I even did 48 sessions with a personal trainer and have visited three different nutritionist and a bariatric doctor. In one year, I have been able to loose only 10 pounds which now I am sure don't have anything to do with all the exercise or diets. They most likely are the result of a slight reduction in prolactin levels (I have around 250). I do think that all the exercise probably has prevented me from gaining more weight. Now I take 6 Dostinex pills a week. The doctor is going very slow with the dose increases because apparently for most people the medicine works with much lower doses and there is not that much literature for people like me who have such stubborn prolactine...

I hope this helps some of you out there... It was very helpful to read your experiences. Good luck to all!

Hi I am also thankful to have found this thread, I have had a weird on and off battle with my prolactin levels and my doctor said he found a micro tumor on my pituitary gland 4 years ago. My prolactin levels weren't off the charts but I was having rapid weight gain, thyroid tests were all coming back normal but I was also having headaches. So he put me on cabergoline and my levels were normal again and after like 6 months he stopped the medication. I lost about 40 lbs going from 210 to 160 in that time, and I felt great. However I recently had another child and now I am trying to exercise again and have ballooned to probably close to 215, the highest weight I have ever been. I have been exercising, eating extremely healthy, I also cut out gluten and dairy because I have borderline celiac disease and a dairy allergy and I am gaining weight. I also feel tired everyday like I haven't gotten sleep the night before and also feel agitated. I just went in today to get my prolactin levels checked and my thyroid again as well. I was able to lose weight after having my baby immediately, but it just seems like my body has cycles where it cannot lose weight and will gain it rapidly. Anyways, friend me if you would like, I need all of the support I can get.

Hi, I recently learned that I have hyperprolactineamia. Its at 224. Its not a prolactinoma. I'm a diabetic since 2011. I also have been diagnosed with PCOS this year. Other hormones are slightly off too. My doctor has me on long release insulin, and cabergoline. I've always been obese but have been trying very hard to lose the weight over the past month. I've taken some time off from work to focus on just my health. I'm concerned because we're TTC and its obviously not working out.

I work out 1.5 hours a day in the gym, eat healthy, and get plenty of rest. I haven't been able to lose a lot of weight so far and I'm concerned that my hard work will not result in good outcomes. I'm really glad I found this thread because it makes me feel less alone in this battle. Friend me so we can work together on this journey.

Wow, this is insane that I stumbled onto this feed. I use to be in amazing shape never had any issue's with my weight at all. Then when I turned 20 I started gaining. I seen three different doctors, because my period had become spotty and I was gaining weight rapidly. They all said the same thing, its from working shift work and eating habits. One straight up told me I need to lose weight. Which is strange I eat really well, play hockey and soccer and really active. My periods then stopped completely, I was super tired and had to really push myself to do anything, doctors said the same thing, it was because of working shift work and put me on BC. I then moved so I started with a new doctor. She told me the same thing and kept me on BC. Once that doctor went on a mat leave I started with another doctor, while going through my medical history he decided to check into things, sent me for blood work, ultrasounds and finally an MRI, he also referred me to a gyno. It was the gyno who discovered my extremely high prolactin levels, in the 1600. She finally sent me to see an endocrine specialist who has been amazing. She put me on cabergoline, which has been helping with my energy levels. I no longer have to drag myself out of bed I actually am motivated to go to work and it dosnt kill me. I just hope the weight loss will start soon, once my normal cycle returns. Its really nice to hear about others who have been dealing with the same things that I have.

I'm so happy I found this post. I had no idea so many people were going through the same thing I am. I gained a lot of weight really fast without changing my diet or exercise. I was just diagnosed and have only been taking cabergolene for a week. I haven't gotten my mri back but this has made me feel much less alone in this

Holy crap, I just got diagnosed with this, though I got the MRI back on Saturday that says I thankfully don't have a Prolactinoma. Just really high Prolactin levels. Yay for no testosterone

I don't really have a weight problem per se, but I work out quite a lot and strictly control eating, so maybe that's masking it. Just noticed that my Libido basically evaporated about 3 years ago, unfortunately right when I changed another medication that has that rare side-effect (Stratera for ADD). Went through some pretty tough times with my wife (always stands by me, but lots 'o frustration) but very, very happy now that I have at least figured out the cause of my very low Testosterone. Wish like hell that I had gotten a blood test years ago.

First appointment with the Endocrinologist next Wednesday, excited to finally get treated correctly.

I too have very high prolactin levels. I have done well, and lost about 30 pounds since last year and kept it off. However I can't seem to get below 180 and it has been like this for months. I am almost always under my calorie goal but can not lose any more weight and I think it is because of the microadenoma that I have. I start cabergoline today and I hope it helps me get to a healthy wright with diet and exercise. Has anyone else had good success using this drug?