I have been diagnosed for 5 years. Still on the meds, without them the tumor starts to grow again. If it gets too big it can effect your eye sight. My endo says that taking that med will be harmful for a pregnancy. I am done having kids so I am ok with that. I gained 76 lbs in about year. It has been really hard shedding the weight but I am down 22 lbs. I am 38. It was really scary at first but I have learned to take my meds see the Dr once a year etc. I too was told it was stress and in my head until I found the endo I see now. He really was committed to finding out what was going on.
So hello you guys! I'm new here and I just got diagnosed with prolactinoma. I did my MRI and showed a 2mm tumor. My doctor gave me dostinex. So I have a couple of questions because my doctor couldn't really answer to any of them and convince me.
So is it true that you actually lose hair ?
I gained a lot of weight in the past year and that's how I found out about the prolactinoma. I was doing like a regular check up and the results didn't come out right.
And I'd like to know is it possible for me to get pregnant? Is it going to be difficult and do I have to be careful of anything?
I'm not planning on being a mother anytime soon I'm too young but I what to know about the future you know.
So go ahead and tell me anything more you feel like I need to know.
Well I guess I'm starting to walk the path yyou all are and I'm terrified. O noticed that my breasts were leaking first, then followed by gaining 35 lbs, and now my hair is thinning I'm exhausted all of the time and my whole body hurts. Has anyone had these same symptoms or issues with a lot of vaginal discharge? I've been To the gyno and done countless tests and cultures no bacteria or yeast, had a mammogram and I went for blood work. my prolactyin levels were 126 so I go for am MRI next Thursday. I'm really scared and not sure what to do or how to feel and the kicker is i lost my job I feb and have no insurance so I'm really losing it over this now. I'm just sick of feeling like garbage all of the time
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!
Be careful with Bromocriptine, I think it's a bad drug. I read the side effects, & I kid you not, one of the, was death. I took to doses for the very first time, the first day I got a headache out of this world, two days later took a 2nd dose, woke up & it felt like a elephant was sitting in my chest. First of all if a side effect of any medicine is telling you that u may experience a stroke, a seizure or even death, no thank u, I don't want it. Research this fo ur self, and I can't believe my doctor didn't tell me about these serious side effects. I've taken Cabergoline for 3-4 yrs, only side effect I experienced was some headaches but that eventually stopped and memory loss, went to using Bromocriptine thinking that was better, big mistake. Bromocriptine affects the heart so be aware
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. 😔
Sue I feel ur pain & anxiety, I've been there. I remember when I was first told about my prolatin level being hign. When I got tested by a MRI, I was told that I had a pituitary tumor! I freaked!! I was so scared, but my doctor explained to me that it wasn't ur normal Tumor, like cancer or anything, it was just a growth on my pituitary. Mine is 6mm, very small. The pituitary Kinda works with the Thyroid as well, my pituitary was secreting way too much of the hormone that controls the Thyroid. It's hard to explain, ll u have to do is research ur diagnose on the internet & learn about it, because the doctors ain't gonna tell you everything, well you might get lucky & get an phenomenon one. Also if and when they prescribe medicine for you, be sure to read the side effects! That is real important cause they won't tell you about that either! Cabergoline works for me, Bromocriptine to me is a bad pill, if you read the possible side effects, I guarantee you won't take it! So calm down, you ain't gonna die, a lot of people are dealing with this. Hope this help
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.
Thank you, I just started taking Bromocriptine. I only took 2 doses within 2 days a part and the first dose gave me a headache out of this world that lasted for 2 days, the 2nd dose I took before I went to bed, good thing I was awoken by my husband getting ready for work, cause I really think I would have died. When I woke up, I had this mass amount of pressure in my chest. It felt like an elephant was sitting in my chest, I couldn't breathe & every time I tried, it hurted so bad. I honestly thought I was having a heart attack, I was pretty close to putting on my clothes & going to the ER. I checked the side affects of the medicine & realized that seizures, stroke, chest pains, shortness of breath which lead to death by taking this medicine was possible, I immediately stopped taking it, I'm sorry but Any Med that says one of the side effect are death, are Fatally, stokes etc... no thank u, so I am glad to know, that someone knows about the heart problems this med can cause, I experience it
I have recently been diagnosed with a pituitary tumor called a prolactinoma. I have had about a 30lb weight gain due to my high prolactin levels. I am on drug therapy with bromocriptine. I would like to exchange information and ideas with other women who suffer from this problem.
Hi I'm cathy. I have the same exact condition as you. My doctor said that my protlactin levels were really hign. I had an MRI done, and it discovered a Pituitary Tumor. All I can tell u is that Cabergoline worked better for me than Bromocriptine
The side affects of Bromo is to harsh, Seizures, Stokes just name a few. Everyone experience different side effects, ur body may not react to the medicine the way mine does. But if Seizures & Stokes, chest pain, shortness of breath, is in anyway possible, I'm not taking no changes. So just be careful, do ur research cause the doctors are in it he money, they won't tell you everything
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.
Girl I can relate to everything you are saying, I experience it all
Hit me back, let me know how your doing. Everyone needs support and someone to talk too, I know I did
I was diagnosed with a prolactinoma in 2001, I was on Dostinex until I became pregnant with my first child in January 2016. I remained off of it until I was done breastfeeding (Sept 2017). I've been back on it now for almost 2 months, the 1st month was rough with headaches and dizziness. I feel like I'm used to it now. However, I haven't seen the weight loss I was really hoping for. I almost feel like I weighed less while pregnant/immediately postpartum. About 8 weeks PP my milk supply (which hadn't been great) increased and as it did, my weight did too. I was 2lbs away from prepregnancy weight and now I'm almost 20lbs above prepregnancy weight....it's so frustrating! Just curious if anyone has been through this?
I googled Dostinex and Duromine (due to my own weight battle) and up came this forum and was staggered to see you are all struggling with the same issues.
I am a male, 44yrs old and a shocking 270 pounds at only 5'9".
Prior to being diagnosed I managed to lose 44 pounds by basically eating things like crackers and tomato's plus all sorts of other crazy starvation nonsense, but just after taking the first tablet my desire for carbs increased and my weight very quickly climbed.
In actual fact, whenever I have dieted since starting dostinex/cabergoline, if I start to diet my thoughts get very foggy, my memory is waaaayyyyyyyy worse than normal and honestly, I really feel like I don't function properly.
Without stimulants like coffee I am pretty much lifeless, boring, unmotivated, uninterested and unengaged.
So even to function solidly at work I feel like I need 2 multi-shot coffees a day.
Like many of you, when I engage in an educated discussion with my endo about side effects, weight gain, other hormone levels etc, after 4 years he will now engage back but kinda just acts like I should be happy that my prolactin levels are low again with only half a tablet every 2nd day.
I explained to him last time that dostinex makes me desire carbs stronger and even though I consume far fewer than most people I know and only drink alcohol when invited to someone's house for dinner (so maybe a 6 pack three to four times a year), I am pretty much the fattest and most unmotivated person I know.
Most men I know around my age and height are roughly 100 pounds lighter.
Even most drinkers only have an average middle aged pot belly and may push 180-190 pounds.
His answer to this was "well it sounds like the dostinex isn't "causing" the weight gain but rather your inability to control yourself in light of the side effects".
So he pretty much went on to suggest in a soft/kind way that I really am very big and should be mindful that carbs in general past 40 is a bad idea.
He used himself as an example but he would be 6'1" and quite lean plus looks to have always been that way.
So to then see you are all fighting this nearly impossible to move weight gain, it's yet again showing that these endo's only listen to the drug companies and will not listen to their patients/customers so just treat us like hypochondriacs......
In my late teens and early twenties I used to be busy most of the time but once I moved into a sitting role for work the weight climbed, everything became harder and only the most extreme diets ever had any effect.
Once you get diagnosed you start looking back and wondering when the prolactinoma started to develop. Was it always there slowly growing? Has it held you back for a decade or 2?
Was it partly responsible for the weight gain 2 decades ago? Have you been fighting a losing battle ever since and just getting bigger and bigger?
Over time I would present with symptoms (obviously it's much harder to diagnose in men) and they thought I was just depressed. So on and off anti-depression meds for many years because that's their fix all these days.
My strength lessened, I felt like I was going to have a mental breakdown because I couldn't cope with stressful situations, then my sex drive completely disappeared for maybe 2.75 years and I became very short tempered.
I regularly needed baths to relax and I seemed to heal slowly, especially if a muscle injury was involved.
Basically it felt like my body and mind was failing.
Interestingly, many men become so difficult they wind up divorced and with bad relationships with their children before ever getting diagnosed.
It's only usually when their side vision goes that it ever gets picked up.
I was lucky it never reached that stage but it certainly strained our marriage to the point where we simply existed under the same roof and couldn't stand each other.
If we hadn't have been so broke, we would have parted ways maybe a year before I got diagnosed.
So it's lucky we do have access to these meds and we can function again but this weight issue along with the other side effects can make it feel like we have a disability that no one but ourselves can feel and that no one else cares about.
I have commented to several people that if I was diagnosed with a brain tumour tomorrow people would cut me some slack but because I have a pituitary tumour and can function somewhat normally then I am just a fat lazy person who needs to "try harder".
I've even said to my Wife that one wonders if the consequences of carrying extra weight plus the potential for heart valve damage and inflammation around the heart will be what shortens my life? On 3 occasions I have tried stopping or reducing the medication but have gone downhill very quickly.
It really is like your darned if you do or darned if you don't when it comes to medication and this disease.
Sorry that I am so negative.
I was just pondering if duromine/phentermine might be a temporary answer plus a way to be more alert and alive without ingesting 700 kilojoules per tall flat white in order to feel alive.
And also if it will help lower this bulk as this weight seems to be right where breathing has become harder and my BMI has hit morbidly obese.
I found out a few days ago that I have a prolactinoma (micro 6mm). My prolactin levels have been elevated but not super high like many I have read about on this thread. What a huge relief it has been to find this thread and learn that I am not the only one with unexplained weight gain despite my best efforts to lose it with clean eating and exercise. I lose heart when I expend all the effort and see no results. It helps to know there is a medical reason for it. I am hopeful the meds will make a difference. I am starting on the paleo autoimmune approach this next week. Would love to know if anyone has had success on whole30, paleo, hormone reset or any thing else. Or if certain types of exercise are preferable. I trained for and ran full and half marathons and never lost more than 2 lbs (but I didn’t gain either). My joints complain if I run at this weight (up 25 lbs) but I have to DO something to slow this down. Thanks for any tips or encouragement!
I'm not sure if anyone follows this thread anymore, but I was so grateful to find this tiny prolactinoma community!! My name is Kate, and I just wanted to share my experience with you all. I have experienced EXTREME weight gain, while using Bromocriptine, over the last 9 months. Here is my story so far:
I was diagnosed with a prolactinoma 1.5 years ago, in October 2016, and I suffered from unbearable side effects initially beginning treatment with Cabergoline (in October 2016). Side effects included nausea, dizziness (to the point that the entire room was spinning, and I was in a chronic state of vertigo), breast tenderness, anxiety, back pain, heartburn/acid reflux, and depression. That being said, I did not last long on Cabergoline! Then, I took a break from medical therapy until I was ready to try Bromocriptine.
I started taking Bromocriptine in June 2017. I weighed 145 pounds. By September 2017 (3 months later!) my weight had climbed up to 160lbs!! I am a very healthy eater, and I exercise every single day. This weight gain has been very hard for me to understand and accept, especially with most of the doctors telling me "we just don't know"...or "it has nothing to do with your prolactinoma"...BULL ****! Do not let anyone, especially any doctor, tell you that weight gain is not correlated to prolactinomas! The pituitary glad is called the "master gland" for a reason! As the “master gland” of the body, it produces many hormones that travel throughout the body, directing certain processes or stimulating other glands to produce other hormones...and therefore it can obviously effect/cause weight gain!
I recently moved to Los Angeles, and have a new (fantastic) Endocrinologist (she's the Chief of Medicine for SoCal Endocrinology!), who I saw yesterday. After discussing my concerns about weight gain, she told me point blank that [SIZE="7"]SHE SEES WEIGHT GAIN IN MANY OF HER PATIENTS ON BROMOCRIPTINE, ESPECIALLY IN THE BEGINNING!!![/SIZE] To be honest, these words came as a relief, just to hear! I have now been on Bromocriptine for a total of 9 months and I weigh 165 pounds.
I am 5'4 inches, so 165 is very big for my frame, and definitely the heaviest I have ever been, by far! So, I have gained a total of 20lbs in 9 months (but really the majority of the weight gain all happened in 3 months!)...This is insane to me, especially since I keep gaining, while I'm eating super healthy, working out every day (I jog/walk 3-6 miles every single day AND go to hot yoga classes 5x per week -- each class burns approx. 500 calories!). I eat a very healthy diet, with lots of protein, vegetables, whole grains, and low sugar. For example, a typical day consists of 1/3 cup oatmeal with almond milk, berries, hemp heart seeds, and homemade cashew cream for breakfast, a salad with chicken or open-faced tuna sandwich for lunch, hummus and veggies for a snack, and salmon, salad, and wild brown rice/quinoa with carmelized onions for dinner. On this relatively strict diet and exercise regimen, any normal human would LOSE A TON OF WEIGHT!! Also, I eat clean and healthy because it makes me feel good and I LOVE cooking and I LOVE to eat good food! I run and do yoga because I enjoy it, and it helps with my mental clarity and overall happiness! I always have and always will, but it's very upsetting when all you see is the scale climbing!
Anyway, my doctor suggested that I switch to Cabergoline, at the lowest dose possible (1/4 of a pill, 1x per week), to see if this helps. She assured me that NONE of her patients using Cabergaline experienced weight gain, while MANY of her patients using Bromocriptine did. I have also been experiencing a sever breast tenderness/swelling/pain, so my doctor hopes this will subside once I switch. Although I am nervous to try Cabergoline again, I feel like I am in a better place, now that my body is adjusted back to normal prolactin levels and is "used to" the medicine.
So, I will let you all know how things go, once I switch to Cabergoline. I really hope that I am able to lose the gained weight, and keep it off. I just want to feel healthy again! I want my body back! If anyone wants to stay in touch please feel free to email me at katecdevor at gmail. I remember how hard it was for me when I was first diagnosed with my prolactinoma, and I had nobody to talk to...there should be a bigger community! The best I have found so far is the facebook group. Anyway, please do reach out! Good luck to you all and thanks for listening
I too have a prolactinoma. Many years ago (like 20), I was started on bromocriptine. It was terrible for me and made me really sick. I could barely work. I also spend a large portion of time lying on my bathroom floor with my head against the tub because it felt cool. Every once in a while (maybe once every two weeks) I would skip one day of it so I could have a normal day. The doctor at the time did not take me seriously about how poorly I felt. I switched docs and was put on cabergoline and tolerated it much better. I was only medicated for about 5 years and it seemed to resolve (not longer visible on the MRI). Sometimes I wonder if it was ever even there. I also feel like the bromocriptine damaged my metabolism. At this time, my prolactin still runs a bit high. My current endo ran a separate test that indicates in my case the prolactin some how clumps together in the blood which can cause a high result.
Long story short, I have a miserable time trying to lose weight and feel my pituitary contributes to that in a large way.
Hi everyone. While I'm not happy anyone's got to go through this horrible disease I'm happy to see there's a lot of us here talking, albeit sporadically.
Mine started getting out of control after having a dermoid cyst removed in 2010. After that I put on a lot of weight, was deeply depressed, no sex drive and generally unpredictable for a long time. I was bedridden with exhaustion and pelvic pain until October 2011 when my breasts started leaking. A month or two later I developed a weird rash-like texture to the mucous membrane of my eyes. I also had a rough patch of skin on the inside of my lower lip. After weeks of horrible heachahes and prolactin at 1610 the doctor sent me for an MRI and I had a 4mm prolactinoma. They put me on daily Parlodel (bromocriptine) and I was fine after 6 months. A second MRI showed the tumor was gone.
I started working out a lot, lost weight, then about 3 months later I started getting sick again -- moods, sleeping a ton, headaches, etc. New prolactin check saw it was back up to 1180, back on the bromocriptine. After about a year I moved to another country and consistently healthy I didn't think about the prolactin until about a year ago my depression and anxiety started getting out of control again.
I have responded pretty consistently to working out and eating healthy in terms of weight management though it seems that the second I stop the routine I blow up, and fast. Big belly, big breasts, wide upper back, headaches. In March I was at home and found making a cup of tea one of the hardest things in the world; my body felt like it was moving in liquid concrete and I realized I hadn't felt like that since 2011. So I asked the doc to test my prolactin and bam, I was up to 1572. I'm now on Dostinex as of today and already feel WEIRD. Some people apparently shut down within hours, it's been 4 for me and I feel like I could run around the block. Did anyone else feel this in the beginning? I'm mainly worried that I'm going to be one of those people who go manic on the medication.
I have had my Prolactinoma for about 4 years now. I have been on and off bromocriptine and cabergoline. But there have been long stretches of steady Med taking and my levels have never reached low enough to how they should. Now for my tumor size is has only grown about 1mm since I’ve been diagnosed and it hasn’t shrinked at all. I got a new Endo and she says she can get this tumor to go away within 6 months. I have zero faith in this because I have been taking meds for this little guy in the brain for about 4 YEARS! I’m starting to feel hopeless that I will never get it to go away. Whenever I mention surgery to my doctor she brushes it off like my condition isn’t that serious and that there is no need for surgery. I am just wondering if it will every go away or will I have to be taking medicine for another 20 years or the rest of my life.
Sorry for the depressing post, I’ve really just struggled with this tumor. I have gained weight because of it and then I have lost a ton of weight then gained it back. I have so many stretch marks on my body for how much my weight fluctuates that I look like I’ve been pregnant before and I’m just a 20 year old girl trying to have fun but I get so self conscious about all of it that it really gets me down sometimes.
Hopefully someone will have words of encouragement or advice to help me get through these hard times. Anyone else who is going through the same thing, just know I feel for you and it does suck.
