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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.
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new here
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. Thanks for any help you can give me. |
Justv got my blood work back
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
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Be Careful
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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 |
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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 |
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Hit me back, let me know how your doing. Everyone needs support and someone to talk too, I know I did |
Prolactinoma, pregnancy, weightloss
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?
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Hi All,
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. |
New- is anyone still following this topic?
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!
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Hello!
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. Good luck to all of you. C |
Hopeless
Hello,
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. |
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I appreciate and thank you for your reply. Just to comment though, I have been in a loving and faithful relationship for about three years now and he does no care one bit about my weight and stretch marks and is understanding of my “condition”. I am not one to constantly self evaluate, count calories or live at a gym. I am saying that being this young I should not have to worry about having stretch marks alllll over my Boobs and having the only people to relate to are women who have had children. I don’t think you would understand that feeling. I should not have to worry on a day to day basis about leaking through my bra when I have not been and am not planning on being pregnant for a very very long time. I completely understand the risks of surgery, TRUST ME. I personally feel that living a truly happy life should not consist of taking harsh medications everyday that make you feel physically and mentally ill and that are not improving your “condition”. If you knew me, I would probabaly be one of the most grateful people you would ever meet and I never ask for anything more than I need. I have been blessed with many many challenges in my life and this little one is just a number on my list, nothing I cannot handle. This forum is for SUPPORT. I came here to talk to people who understood what I was going through and maybe them sharing how they’ve gotten through or giving words of encouragement. I was not looking for a lengthy reply from someone who takes me as an immature, ungrateful girl who does not know much about relationships, support systems, societies view on women, and what truly matters in life. So my first post on here did NOT make me feel any sort of “support” at all. So I guess that will be my last post. Thanks. |
Keto and Prolactinoma
Hey all!
I have known about my pituitary tumor for about 2 years now. No period still. First little bit I tried meds and had such a HUGE problem with Cabergoline and I was SO sick. I had to srop taking it only after a couple weeks. It Made my headaches worse, made me feel so ill, and it was so expensive! After a couple months of struggling with my weight, MASSIVE headaches for 3 years straight and crazy prolactin levels I decided to try keto. I finally lost about 15 pounds (i was 150 and lost to about 135). It’s not that I ever felt fat, I just always held so much extra water weight, especially in my stomach area. I was so tired of looking pregnant all the time!....definitely has helped. After about a year of being on the ketogenic diet, I had another MRI and it looks like my tumor shrank! No meds. Just keto. Mind you it’s still there, but my results said “a continued decline in size” How awesome! I also take turmeric (Curcumin) pills every day. Anyone else try keto yet?? |
Keto & Prolactinoma
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I was diagnosed with a pituitary ademona (prolactinoma) in 2006, had surgery to remove it May 2006. Prolactin Level was 117 when I had the surgery. Over the last 12 years levels have been anywhere between 30 & 76.7 (highest it’s been since surgery ((Aug 2018)). Symptoms before surgery were no periods, headaches, very irritable /moody, enlarge, leaky breast, and weight gain. I am having missed periods now, (Every couple months) and my breast feel engorged, absolute impossible to loss weight. I am 41 years old and in the military so I’m pretty active and eat clean most of the time. Im just starting the keto diet using cookbooks from Maria Emmerich, she is very interesting. And really dives into the science of it. I’ve never been on the medications,I thought my dr. would put me on them this month because of my levels but he just told me when I feel like I can’t live with these side effects anymore we could start them. I would rather live with my current side effects that those from the drugs so I’m not planning on taking them anytime soon. My dr. too, thinks I’m lazy and need to clean up my diet and exercise more. He doesn’t think there is a connection with weight gain and the adenoma. Just blames it on being 40. No mater what I do I can’t lose weight. That’s why I’m trying a Keto diet the Maria Emmerich way to see if I can heal my body and balance my hormones. I mean if your body is producing prolactin, it “thinks” you are pregnant or breast feeding so doesn’t your body hold on to everything since it thinks you will be expending that energy while breast feeding. That makes perfect since I’m my mind. I just can’t believe every single one of us talk about weight gain and very difficult weight loss and there is still no connection made. Maybe our dr.’s should read this forum. Best of luck everyone!!! EH |
2019 Post
Hi,
I started a journey to lose 70 lbs in May of this year. It has been slow going and I’m trying to not get discouraged by that. It has been slow for me because of my high prolactin level. I am happy to have found this thread and hope others see it too and can participate/support. I have been fat my whole life and was never successful at losing weight until I discovered my high prolactin issue and started taking Cabergoline in Jan 2007. By February, the weight started falling off as I continued to eat healthy and exercised 5x/week. I lost 130 lbs in about a year and kept that weight off until 2015 when life happened and I went off the Cabergoline. From 11/2015 to 5/2019, I gained 70 lbs. In May, I successfully started another weight loss journey. This time without Cabergoline. I realized when I went off the medicine that it was causing brain fog and I am not willing to live with that side effect. I had a pervious very bad experience with bromocriptine so that is not an option either. I have attempted the homeopathic and naturopathic routes, but they have not worked. I went to see a bariatric doctor who explained to me why the high prolactin was causing the fat loss to be an uphill journey and told me that I either go on the medicine and lose 2x as fast or I don’t take the med and be patient. So far I have opted for patient. I’m looking for support because patience has never been a great virtue of mine. I would also love to support others who are going through this with this same issue. Thanks for reading. |
Cabergoline & seizures
Hi All!
I posted here back in 2014 because of my prolactinoma & weight gain (page 14 on here I think). I was given the drug cabergoline to help shrink the tumor. It is a STRONG drug (Ugh!). I was on a low dose. I had started losing weight, not sure how else to say it, but because of being in a new relationship and experiencing sexual activity with him that made me extremely hyper and motivated. Even afterwards I was more energetic, so I would work out and SWEAT. Sweating is what helps you lose fat, once you start sweating, keep going for a while. I had lost about 30 or pounds(within a year or so). But then I suddenly had a seizure. I think it was due to emotional stress, lack of nutrition, plus my body trying to use the cabergoline to fight the tumor. I had three more seizures within a few months of each other. I saw a neurologist and I was put on epilepsy drugs with the cabergoline. At first I stayed the same weight, being really weak from the seizures, but then the weight came back on. It’s been a rollercoaster ride. Seizures take all your memories and throw them in a blender and some fly out, never return, other’s are hard to understand and you can’t figure out the timeline. I can’t remember faces. Sometimes I can’t remember words. Sometimes I can’t remember whole days. I don’t know who people are until they remind me who they are. It’s confusing, I don’t know what I don’t remember. I have to keep a diary or I’d forget everything. I’d forget names, people, events, the day, what my schedule is, etc. I’m not taking cabergoline anymore and my periods are very sparse. It’s be 60 days since my last one. I had asked my endocrinologist if I could go off of cabergoline before I even had the seizures because of how it was making me feel but she said not until the tumor was gone. I don’t trust the drug anymore so I left that endocrinologist and the drug. TL;DR? It’s our hormones and our metabolism that we’re trying to improve and regulate. What affects your emotional/mental health can affect this tumor we have. Please, have good emotional support. The gym isn’t enough, even if you do see results. Take care everyone :) |
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I experienced the same kind of stuff with cabergoline, I didn’t like how I felt on it either, I had brain fog, episodes where I would just black out, wasn’t interested in food and forgot to eat often and finally had seizures. You’re not alone. I have about 45 pounds to lose to be a weight I was when I was healthy. I feel so sluggish and slow. Tired for no reason. Depressed. No motivation. No energy. Sorry for not responding back in December, I had forgotten about this forum for years. I was reading old emails and found the email from when I signed up. It’s not a very active forum from what I can remember. Currently, I’m expecting to be able to work out at home when I have the time & energy lol I hope you’re well! :) |
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