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Prolactinoma and weight issues

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Old 09-14-2010, 12:58 AM   #106
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Hi. Haven't posted in a while so I'm here's an update. Been on Dostinex since Dec 15 2009 and periods returned 2 months later. Weight loss has been slow but steady, aided by Nutrisystem. I've lost 10 lbs since starting the Dostinex. I take 0.5 mg twice a week. Endocrinologist said I could half this dose if I wanted since my levels went to normal within one month of starting. He said I'd be on this drug for 2 or 3 years then a trial of coming off to see if my levels stayed low. He said many times this results in the levels staying normal.
However, he also said that if I decided to get pregnant again, I should be switched to another medication. I used Dostinex to get pregnant the first time 4.5 years ago. I didn't question him at the time since I was not planning on a pregnancy. That's now changed. I want to try for #2 now. Dostinex worked perfect the first time and I got pregnant the first time with no trouble once my periods returned. Has there been new research that shows Dostinex to be unsafe for early pregnancy? Not sure why he said I should switch or what to switch to since Bromocriptine made me sick when I tried it years ago. Anybody have any insight into the safety of Dostinex/Cabergoline when trying to conceive?
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Old 09-28-2010, 11:05 PM   #107
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I was so excited to see this site. I'm a 27yr old grad student from Virginia, and I was just diagnosed with prolactinoma last month; I had never heard of it until then. It's been a long journey that started with tests, upon tests to figure out why I'm perfectly healthy outside of the fact that I haven't had a period since October 2009. I've been nervous and scared among other emotions after finding out; it's nice to know that there are other women out there with this condition and that I'm not alone...
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Old 09-28-2010, 11:24 PM   #108
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I understand your frustration! I was just diagnosed last month. I just moved to go to school when I found out, so I haven't started any medication yet since I don't have insurance yet. I thought maybe something was wrong with me; I was a little depressed after my periods stopped (been absent for almost a year now), and even though I changed my eating habits (and I don't eat as much as I used to) I've gained at least 20 pounds (mostly in my stomach and thighs; I look pregnant!), and I'm definitely more tired than I used to...I thought it was just me...
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Old 10-18-2010, 07:50 PM   #109
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Default So tired of being fat

I was diagnosed with a Prolactinoma in 2005, really by accident. I'm also epileptic and started lactating after they had switched my seizure meds. I immediately called my Dr. and told him if this was a side effect of the new medication I wanted something else!! LOL! After an MRI and a lot of lab work I was finally diagnosed. My levels were 117 (which isn't that high compared to others on here) and was affecting the way my seizure meds. were absorbed, so I was having a lot of seizures. I don't have insurance and Dr. visits are expensive, so I slacked a bit on care and got meds. from my neurologist when I could. Bromocriptine plugged up my nose horribly and even worse, turned my into a *****! It actually ruined the relationship I was in during my diagnosis. I have an appointment in a week and can hopefully get on Dostinex or the generic. Because I'm uninsured and a student I am having to get my medication from Canada (I'm in Oregon, and the cheapest place to get it (costco) is $250+ for a month!!).

As far as weight gain, I am currently 60 pounds overweight and that's with working out 5 days a week and being in a health class at school. I have blood work done fairly regularly and everything is normal besides the fat. I tell my family, "If it wasn't for all this fat in the way I'd be healthy!" LOL!!

I think the worst is the people thinking I'm pg when I'm not and thinking I'm full of crap when I say I have a prolactinoma. I just want to be normal, as normal as I can be at least. I was always skinny (115 in high school and 125 before all this crap happened). I'm tired of being the fat girl!! :'(
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Old 11-03-2010, 06:56 PM   #110
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i am realli glad i found this site.. i just know i am suffering prolactinoma last week. i gain weight 11kgs in a yr and i was so depress.. i just took my first tablet of Cabergoline yesterday .... i can't even stand in that side effects.. i would like to ask sth that you guys know more than me.. can we lose weight by any chance if our prolectin level become normal?? Macylynn ... i am just like you .. fed up with being fat.. i dn't even want to look myself.
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Old 11-05-2010, 01:20 AM   #111
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Hi Mipone. I take Cabergoline (Dostinex) and as soon as I started taking it, I finally had success losing weight via healthy diet and a bit of exercise. It's still slow but at least the numbers are going down. I'm only able to lose about a pound or 2 a month but I'm also not a total diet or exercise fanatic so could probably work harder/cheat less and have more success. Prior to cabergoline, it took months to lose a pound.

Hang in there - the side effects should go away after a bit. I have no side effects at all anymore.

Crystal
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Old 11-09-2010, 09:46 AM   #112
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Hi ladies- I found this thread last night and read all 111 posts. It was really nice to get some hard to find info. on the weight-gain. I am going to tell you all a little about my history- hopefully I might help someone and maybe someone can help me too!! I am 34 with no children. I've always been about 30 lbs over weight, and about a year and a half ago my mom & I decided to join a gym. After a year of working out and eating VERY healthy, she lost 35 lbs, I lost 10. I gave up on it and went back to my normal habits, and within 2 months, I had gained the 10 lbs back plus 25. I thought to myself, this is not normal, but didnt do anything about it. In order to keep my state insurance (in WI we have badgercare) I had to go get a full physical. I told the nurse practitioner about my concerns with the weight gain and also that I had been "leaking". When the tests came back she said my prolactin was high, but did not give me a number. She told me it might be a pituatory tumor and we would wait a month and retest my blood. Nothing like waiting a month to find out if you have a brain tumor!! So, 2 weeks ago I went back and it was still high so I have an appt on Friday with an endocrynologist. After reading all of your posts, I'm about 90% certain that I have a prolactin- secreting pituatory tumor. I have had alot of headaches- almost every day, my vision has been blurrry and I have been an emotional wreck. My periods have been irregular, but they have not gone away completely (darn). I cannot pin-point when all of this started. It really makes me wonder how long I've had this!!! From what I've read, the medicine they will put me on is going to make me sick and even fatter (GOD, I hope not). But some of you on the Dostinex seem to be losing the weight. I will keep you all posted and look forward to us all helping each other through this. I have had very bad breakouts of acne on my chest and back. Anyone else have this? Thankfully, no unusual hair growth, but I DO look pregnant. Has anyone had to have surgery or will this more than likely be treated with pills? Thanks again.

Last edited by S1shine : 11-09-2010 at 10:46 AM.
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Old 11-12-2010, 08:28 PM   #113
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In case you are one of the few who stumble across this I would like to share my progress in the hopes it might help someone in a similar situation as mine. Please read my previous post for other background info. I was supposed to have my MRI today but when I got to my endo appt I was informed that noone got a pre-approval from my ins. co. so they would have to wait until Monday to schedule an appt... GO FIGURE. I atleast got a chance to spend a few minutes with the doctor- a nice young woman named Dr. Andrews. We went over my symptoms and she said that due to the fact that I am still getting a period and it is not too terribly irregular, she can be almost certain that this tumor is small. She said 1 in 5 people have tumors on their pituitory gland, and some dont even experience any symptoms. Like a dummy, I never asked her my prolactin level. Sure wish I would have. She told me that she would more than likely put me on a pill and given her past experiences, I shouldnt have to be on it for more than a year, and the tumor should "dry up". She also said once the pill starts to take effect, my headaches and fatigue should go away. She never said anything about the weight. I am going to make it my own personal agenda to monitor the effects of the pill lowering my prolactin and my weight. I am almost ceratin the two go hand in hand... I will try to keep posting my progress. I guess if I dont get any responses in the next couple of weeks I will chalk it up to a lost cause... Thanks for reading...
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Old 11-24-2010, 02:01 PM   #114
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Default MRI results

Just got a call from the Dr. MRI came back normal. No pituitary tumor. She said my high prolactin levels are from a "hyperfunctioning" pituitary gland. I find it funny that while spending hours and hours researching high prolactin, this never came up as a cause- only the tumor did. I am relieved- especially to know that I wont be going back for an MRI any time soon. HATED IT!!! My prolactin at my last appt was 33. Next week I will start Cabergoline (Dostinex) 0.5 mg (1/2 a pill 2x a week). This does not explain my every-day headache, but I am optimistic that I will be able to lose some weight now. I'll post an update if I have any significant changes...
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Old 12-09-2010, 11:15 PM   #115
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Hello all,
I just want to thank everyone for sharing their stories of the weight gain that comes along with a prolactinoma. Reading the postings made me tear up because im so frustrated with the weight ive gained over the years..and feel like ill never lose it (no matter what i do).
My journey to finding out i had a prolactinoma was a long one. My breast began to producing the milky substance when i was about 16. This was the first sign, but my doctor ran test and my levels were fine..so the chalked it up to puberty. Once i went to college, my cycle became irregular my first year, and was non existent by my second year. I began to gain a little weight around the time my period stopped, but i thought it was the good ol freshman 15. I was scared to tell my parents that i was no longer having a cycle because i had no clue what was causing the problem, and it didnt help that the school clinic just kept giving me pregnancy test. It ended up taking my boyfriend to force me to go to the doctor.
Once i went to my endocronologist and found out about my tumor..i asked if weight gain was a side effect. Of course, he told me it was not. In my heart i know the weight comes from the tumor. It is very frustrating when a doctor tells u that it is not a side effect at all. Since ive been on the medication, my levels have been normal..and my cycle has returned. I havent taken my medicine in about 4 months, but my cycle is still normal. But the weight has never left.
I just dont know if i should accept the pounds i have put on, and not stress about losing it, because it seems it may be out of my control.
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Old 12-11-2010, 02:50 PM   #116
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Hello ladies! I am also battling with a prolactinoma. I am 24 yrs old, married, and no children, although this is the reason how i found out about my prolactinoma. I recently went to my Dr and told her that we wanted to plan to get pregnant. We have been trying for quite a while now. So we did blood work to check my hormone levels and everything else. Everything else was fine and pow, my prolactin level was 32.7, we retested the same day and within a week it was 32.9. So we scheduled a MRI and that came back, my tumor is 5.7mm. My life changed from that moment. I was so speechless. I have an apptmnt coming up, so i have lots of questions. I read everyone's issues, but i am having problems gaining weight instead of losing weight. I do have slight headaches and i have sinuse problems, but everything else is ok, well from my perspective. I do still have my periods every month, but the day it comes on, i never know, so i can't keep up with ovulation. I would like to know do you gain weight before the meds or after the meds, but i don't want to gain to much and if anyone is trying to conceive or have conceive, is the medicine effective for helping you have a successful pregnancy? I am glad we all came together to discuss this issue, because i felt like i had no one to turn to that would understand. Thanks ladies and be blessed!
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Old 12-13-2010, 01:40 PM   #117
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Hey there,
i have recently been to see the endocrinologist about my high prolactin levels
at first it was over 250 then it went back a little to 180... but its still very high
the endocrinologist told me it is most likely a prolactinoma and i have an MRI on thursday to find out for sure.
In the past year i have gained quite a lot of weight. I used to weigh 106lbs but now I'm on the verge of 155, but majority of it stays around the belly region, making me look quite pregnant even though I'm not.
Unlike the other stories ive seen on here my doctor actually asked about weight fluctuation and told me that it can be a symptom.
I first realised something was wrong when i hadnt had my period for a few months (i never really kept track, so it took me a while to notice)
I was very excited to find this community and will try to post everything i find out on here
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Old 12-15-2010, 07:41 AM   #118
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Hi all, Hope that you are all doing well.

Just an update.
I had my echo-cardiogram today, the radiologist didn't really comment weather she saw something or not.
The hard thing is now to wait and see what they tell me next appointment. or if i get the call telling me that i need to come in and see them.

Hopefully i find out sooner rather than later, i might leave it a week and phone for the results.

Hope everone has a great christmas, it is hard this time of year.....trying to lose weight (that just wont go), and watching everyone else eat all that yummy christmas food.

natalie
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Old 12-16-2010, 08:14 PM   #119
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Default Oh No- Bromo!!!

OK, where do I begin?? I was supposed to start Cabergoline a few weeks ago but my insurance wouldnt cover it and I did not have $180 so I left it at the pharmacy and called the endo. Her nurse told me I would have to go on Bromocriptine, because that was the only other option. From all I have read, I was so frustrated!! So, after much hesitation I started it (1/2 a pill 2X a day). It made me tired, and nautious. I had alot of muscle soreness and within the 1st day my hands and feet were freezing!! I thought I would just suffer through it until, after the 2nd week, my entire right leg went numb!! So, I called the endo again and of course I had a million questions, so the nurse made an appt for me to come in and talk to the Dr. I went today. Here's a breakdown of the conversation: Q- if I do not have a tumor, why is my pituitory gland "hyperfunctioning? A- I DO have a tumor (or a small "mass" as she called it- too small for the MRI to detect. Q- What causes these "tumors"? I read it could be from too much stress. A- In no way has it been proven to be related to stress in any way. People tend to blame everything on stress. Noone knows why it happens, but it is a very common condition. Q- If the symptoms of the medication are worse than the actual symptoms of the high prolactin, can I just go without treating it? A- as long as I am still getting a period atleast every three months, prolatin has no negative effect on my health. If I stop getting my period, I can go on birth control to regulate my period. But if my prolactin starts to get way too high, they will have to monitor me with MRIs to make sure I dont have an enormous tumor that is going to make me go blind. Q- Is there anything else I can do to lower my prolactin? A- no. Cabergoline and Bromocriptine are the only thing that will lower prolactin. Q- I read that these drugs will lower levels, but they will not cure the condition that is causing them to be high in the 1st place. Does that mean that I will have to take a pill the rest of my life? A- it could take 1-3 years for the pills to "cure" me. The dopamine that they produce will eventually "drown out" the masses that are making the gland hyperfunction. So, I told her, if it wasnt for the weight issue, I would just deal with it, but I really want to get my weight under control. She chuckled, and told me prolactin had absolutely nothing to do with weight. I told her I beg to differ due to the stories I have read on here. She told me she has treated hundreds of patients who have high prolactin that do not have any weight issues. BUT, she also said that since the pituitory gland is malfunctioning, it may be over-producing something else that has an effect on the weight. She said they are still discovering new hormones and their effects on the body every year. It could be something noone has diagnosed yet. INTERESTING!! What do you guys think about that theory? Maybe you can ask your doctor the next time you are there. For all I know, she's out of her mind. So, here's what I am going to try: She thinks since I cannot handle the Bromo, the insurane will cover the Cabergoline since there is no other option. If not, she said I should be able to get it from some Canadian website. I'm supposed to give it a week for her to try to work out the issues with the ins. co, and then, by God's good grace I can start the Cabergoline and get on with my life!!! I would really like to show her that there is a direct connection between this condition and my weight- even if it isnt the prolactin thats doing it. I hope you are all doing well. Please keep posting updates- you never know who you might help!! And have a very Merry Christmas and skinnier new Year!!!
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Old 12-27-2010, 09:31 PM   #120
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Default Prolactin back up...

I know I have previously asked this but not sure if everyone saw it, has anyone had their prolactin go high again, after years of being controlled on Cabergoline? Nothing has changed (as far as other health issues) I guess my tumor got tired of responding to the medicaiton.

What doses are you all taking of cabergoline? Right now I am taking .5mg 3 times a week. For years .25mg controlled it at 2 times a week.
I am still back up to 25lbs pre tumor weight.

I go back to the endocrinologist on the 4th so hopefully I can get some answers.
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