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Old 05-15-2017, 10:24 AM   #241
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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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Old 07-30-2017, 11:19 PM   #242
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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.
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Old 08-11-2017, 08:21 PM   #243
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Default 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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Old 09-27-2017, 09:17 AM   #244
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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
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Old 09-27-2017, 09:38 AM   #245
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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
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Old 09-27-2017, 09:51 AM   #246
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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
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Old 09-27-2017, 11:03 AM   #247
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Hello,

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
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Old 09-27-2017, 11:11 AM   #248
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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
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Old 11-11-2017, 06:24 PM   #249
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Default 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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Old 11-12-2017, 03:43 AM   #250
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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.
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Old 12-10-2017, 06:57 AM   #251
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Well I tried 15mg for 3 days a couple of weekends back.
It made me feel grumpy and depressed.
I also felt lethargic and weak in my legs but of course that could have been a virus I was fighting or something unrelated.

My Wife is on it and it's helped a lot.

I wasn't in the best frame of mind when I started it due to pressures at a new job so I may try again soon.
It does have a lot of side effects though so I will keep an eye on those.

My Wife has stopped snacking since being on it where as I have realised how often I snack. I just got hungrier more often since starting Dostinex.
I don't feel like I can control the hunger.

Will report back after attempt number two.
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Old 02-18-2018, 10:17 PM   #252
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Default 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 didnít 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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