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Prolactinoma and weight issues

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Old 07-14-2014, 09:08 PM   #211
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Only Macroprolactinomas are associated with vision problems or headaches, that is what I was told by the doc.

Also, I did finally see a specialist who basically said that the meds are risky and that my number isn't that high, no tumor is present and I don't want to have kids so don't worry about it, just check prolactin once a year to make sure it's not going up to truly high levels.

"Giving up because of one setback is like slashing your other 3 tires because you got a flat."
"If you don't sacrifice for what you want, what you want becomes the sacrifice"
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Old 07-16-2014, 06:00 PM   #212
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Oh, that is good to hear MauiKai! As long as you keep track of your health it probably shouldn't be a problem for you.
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Old 07-31-2014, 10:31 AM   #213
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Default Hyperprolactinomea

Hi Eleven11 and everyone,

My prolactin levels are around 1250, and i've put on around 60lbs, mine is caused by a medication though and is a side effect. My boobs have gone from 34C to 40F!!! I too do a lot of exercise, and was disapointed when one of the instructors in the gym came to tell me that someone had commented that they hoped I wouldn't break the machine Which was hurtful and quite offensive.

I have been going to my doctor for over 8 years since my weight ballooned literally within months and he just used to say try eating less try weight watchers.

Went to another GP a few weeks ago and and was sent for blood tests proving that my hormone levels of prolactin have sky rocketed, which is why i am so angry with the healthcare professionals for taking years to do this. Atleast I know now, for now.

They are sending me to see an endocrinologist, and referring me to a specialist to take me off the drug administered 8 years ago which was never meant to be on long term but was worried for adverse health effects of coming off which is why i never did this on my own and have saught support ALL of this time.

Please, am i going mad or could this easily be the reason I have gained masses, and i mean masses of extra body weight???? I work out, i eat healthy I don't even drink anymore.

I just need to know i'm not alone and that there is help out there.

Many thanks
swimmingfish123 xxx
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Old 08-13-2014, 10:08 AM   #214
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There is no proven link between prolactin and weight gain at this point according to my endocrinologist, but as you say the med you were on probably had something to do with it. If the docs help you to wean off of that drug, you may well find your ability to lose weight increased. I hope so anyway! And that person at the gym had NO business saying something like that to you. A gym is there for people who need to lose weight as well as those who just want to keep fit. If their equipment is so shoddy and cheap and that a person who is over the ideal weight can break it by using it then the gym is the problem, not you.

"Giving up because of one setback is like slashing your other 3 tires because you got a flat."
"If you don't sacrifice for what you want, what you want becomes the sacrifice"

Last edited by MauiKai : 08-13-2014 at 10:09 AM.
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Old 10-25-2014, 02:14 AM   #215
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hey! knew to this site i was diagnosed with pcos at 16 and with prolactona at 25. im 5'2 and iv always weighed around 125 -130 and in Nov 2012 my mom died and i started gaining weight and couldnt get it off tried exercise diets etc. now when i was diagnosed with pcos at 16 i didnt have any syptoms really except no periods so i didnt take any meds and birth control made me sick( and i was okay with not having a periode) so fast forward to after my mom died i was 130lbs wearing size 7 and then my weight starting geting out of control so i went to dr and they did so many blood test and everything came back normal of course and finaly i found a dr who tested my prolactin and thats when i found out i had prolactoma. so im seeing an endro dr now and im on glumetza 500mg 4 times a day and cabergoline .5 mg twice a week and im still gaining weight!! im also add/adhd and take adderall 30mg twice a day.

has anyone notice that they were diagnosed with prolactoma or the weight gain happened after something tramatic happen in their life? or any one find any way to lose weight? i went from a size 7 to a size 12 with in a 6 mnth time lapse!!
sorry my spelling sucks but if any one has any advoce etc that would be great thank you!!
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Old 11-12-2014, 09:28 PM   #216
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Default Prolactinoma

I was diagnosed with a pituitary tumor many years ago, it
Came back 6 months Ago im currently taking dostinex and i have put on 15lbs i have tried many things such as going to a dietian, bootcamp, working out And no far nothing has worked i would appriciate if anyone knows whAt to do! I need help i feel frustrated
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Old 12-26-2014, 11:34 AM   #217
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Hello, I'm new and 2 years ago I was diagnosed with a 2.5cm macro prolactinoma. Long story short they think I had it undiagnosed for about 10-12 years prior to it being caught. My levels in US terms were about 2,600. I think I am now down to about 70-80 and my new endo just increased my Cabergoline dosage to 3 pills twice a week as my hubby and I would like to try for kids next year. I never connected weight gain and my tumor, but I have noticed that I have a hard time losing weight and have for years now. Anyway, just thought I'd share my story.

Last edited by Sammypants : 12-31-2014 at 02:06 PM.
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Old 01-09-2015, 12:39 AM   #218
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Default I wish this wasn't happening

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.

Last edited by B8666 : 01-09-2015 at 12:44 AM.
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Old 01-24-2015, 02:53 PM   #219
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I also have a prolactinoma. I was diagnosed about 5 years ago when i was a sophomore in college. I have been on and off with dostinex, and just started it again yesterday. During this time I have put on about 50lbs (yikes!). I was also very active, healthy, etc, and my good habits have slipped now that I am in grad school, but I do wonder how much is from the prolactinoma/medicine. I am hoping as I continue with the Dostinex ad my prolactin levels normalize I will lose weight (I also plan to get back into great habits)!
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Old 02-07-2015, 12:58 PM   #220
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Default Prolactinoma causes Obesity

I have a macro prolactinoma. Twenty three years ago, it was micro and caused infertility. The dopamine agonists ruined my life so I had transphenoidal surgery to remove it. Then I was able to have my first child! And five years later, my second. Befor I had my third, it grew back. I went on Dostinex to be able to be pregnant again. It took a couple of years and some infertility work. Then my fourth child -- which was from donated gametes so even though my prolactin level was over 200 on the day of embryo transfer, I gave birth to a beautiful baby. So prolactinoma infertility and I wrestled for 20 years but I bleeping won!!!

For a lot of the past 10 years I'd been asking my (world expert) pituitary endo about weight. I was sure my overweight was caused by having enough prolactin to nurse a full grown football team or two. She said the two were not connected. FINALLY OVER THE LAST YEAR SHE HAS CHANGED HER TUNE. There are many good studies proving the connection, especially with macro prolactinomas, to obesity.

I want to hear from anyone who has ever had success getting back to normal weight with a prolactinoma. The two dopamine agonists used today have ghastly side effects and I can't live on them. And they never did squat for my weight. I'm about 80 lbs overweight and my prolactin level was 550. I had debulking surgery (the tumor is around the carotid artery so I can't have it all removed) and got the level down to 100 but it will just go back up.

I eat healthfully, sort of primal / paleo. I gain on average 20 lbs a year without even trying. The only success I've had was pregnancy. When pregnant, I lost 40 lbs while my baby grew big and healthy. I was not nauseous. The fat on me just finally dissolved instead of just sticking to me like glue. WHAT CAUSED THAT? A HORMONE??? I ate the same as now.

I'm dying to know if anyone has been able to lose 40 or more pounds and keep it off with a prolactinoma!! Is it even possible?? Someone please write your success here. It would help so many of us.

Wondering about Hcg injections plus a normal diet, NOT THAT 500 cal stupid hcg diet. Does hcg as a hormone counteract the prolactin? How did I lose 40 lbs effortlessly while eating exactly the same? My high risk pregnancy doctor was not happy with my weight loss in the final trimester so he asked me to add calories. In the last months of pregnancy I added a big bowl or bar of high fat ice cream every night, for the doctor. I STILL LOST WEIGHT. The baby gained normally! I was losing fat as effortlessly as we all with prolactinomas gain it. Is hcg a way to counteract prolactin?

Anyone had weight loss surgery with prolactinoma and kept the weight off? Anything???
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Old 03-24-2015, 05:13 PM   #221
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Default Frustrated and working on it

Hi everyone!!
I'm so glad I found this forum. I was starting to think it was just me who is struggling to lose weight. This condition was diagnosed after a very frustrating journey that ended in me having to change my family doc. I have been on Caborgoline and have been feeling better but not great. I'm still tired a lot and have been struggling to take the weight off. I started at 230lbs(yikes!) and have managed to lose 15lbs but cannot get past that. I recently got so fed up by my endocrinologist's being condescending or apathetic about it, I have consulted another doctor. He has a traditional medical license and is also an alternative medicine practioner. He said that is not reasonable to think that prolactin is acting alone and has not effect on other systems. He has recently tested my hormone levels for EVERYTHING!! (Estrogen, all the thyroid hormones, glucose,testosterone, Dhea, morning cortisol and many others) He said that thinks my thyroid might need to be addressed. I'll keep everyone posted. But finally some help...
P.S. He did mention that HIIT (30mins no more)is better than steady state cardio for people with our hormonal disarray. More effective glucose metabolism and less stress on the body
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Old 04-17-2015, 02:01 PM   #222
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Hi every one!
I came across your forum, upon searching the words PROLACTIMONA AND WEIGHT GAIN... I was astounded to read the entries by ladies experiencing the same life as I do, and I have been for the last 40 year!!! that right! I found out about my micro adenoma in 1975 by a specialist in London ( don't remember his name... sorry) since then, thanks to Bromocriptine, (I was the 1st human to have this drug tested on... :-))I gave birth to 2 children that my eldest is 39 years already...
The only doctor that acknowledged the correlation between Prolactinoma and wight gain was Dr. Hardey,(Canadian) a doctor I went consult with him, regarding removing the tumor, by an operation he developed, through the nose/top of the mouth. Then, he advised against the op, due to calcification around the growth.
After the birth of my 2nd child, I just about stopped taking the Bromocriptine, due to ill feeling while taking it, and gradually extended my size to being obese!!!
Yes, me too, although not a frick of sport, definitely like to eat healthy! not overeating!
Recently, I decided, since the only way I managed to reduce weight, was only by fasting... to go for an operation, to reduce the size of my stomach...
Among the tests I had to go through, was to pay a visit to an Endocrinologist, one that supposed to be an expert in Prolactinomas... She too gave me the feeling that I'm fibbing regarding my food intake, and as far as she was concern, I can submit my self for this op...
Now, girls, does any of you have any info to contribute?
Has any of you considered this kind of operation?
Has any one gone through and can you tell the results?
Now that the date of the op is coming close, I'm having second thought about it, all that bother and pain, for very little future success...
My present Prolactine count as of 4 months ago... 882...
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Old 07-09-2015, 01:13 PM   #223
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Default Prolactinoma & Bromocriptine & Weight Gain Issues..

Hi Everyone,
I am so glad that I have found this site, as well as other ladies going through the same issues that I have been going through. I was diagnosed with Prolactinoma in February of 2015, when my doctor first looked at my prolactin levels there were at 80, then jumped to 140. Since, I have been put on Bromocriptine to help drop my prolactin levels (now at about 44, which they still tell me is too high), my endochronologists would much prefer to have me on Cabergoline? but in Canada, there is a shortage for this prescription. Since February, and since I have been on the Bromocriptine I have gained about 25 pounds, my face has become much rounder, nails are brittle and always chipping, feet swell, my stomach literally looks like I have a baby bump, and it definitely has not helped with my self esteem as I used to be so comfortable with my body. It is very comforting reading everyone's post and realizing you're not the only one going through this frustrating battle, but also that it could be worse. I have just recently joined the gym again and am going to be meeting with a personal trainer to hopefully get me back down to wear I feel more comfortable. I really hope people keep posting more, it is so comforting to see you're not the only person struggling with this issue..
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Old 07-21-2015, 05:50 PM   #224
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Question Did you have gastric surgery?

I cannot control my weight, refuse to go on the horrible meds, am done having kids (my history with my macro prolactinoma is above somewhere), and I am considering gastric sleeve or something next year (2016).

Even if I can have 10 years at a normal weight, it might be worth it. But I have a fear of vomiting and I love eating so I am scared. I'm just sick of being obese solely because my body has a super high prolactin so it takes everything I eat and stores it as fst, and never lets me feel full. It's not fair.

I want to know if anyone has had weight loss surgery after struggling long term with a prolactinoma. How did it go? If you had the gastric sleeve, did the removal of ghrelin help you have a feeling of fullness ever?
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Old 08-27-2015, 11:27 AM   #225
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Default prolactinoma

I also have prolactinoma and have had it for 10 years now and fighting my weight gain every step of the way!
I am on 2 1/2 mg of bromocriptine and still fat! I am so glad I found this site I see I am not the only one feeling stupid trying to explain my weight gain is because of a tumor! I was a physical trainer for years and my husband was a professional body builder I have always been fit.. But I have gained 60 pounds and can not get it off I am wondering if I up my bromocriptine will it help?

This weight gain has taught me a lot My life did a complete 180

My husband left me because I got bigger!
My X superficial friends are gone!
People treat me different!

Funny story or not so funny!
An old boyfriend heard I was divorced and got a hold of me "on the phone"
told me he still loves me loves everything about me so I told him I gained weight and he said jeannie you will always be beautiful to me.
He flew out to see me we met at a restaurant and that night I learned a big lesson! I was so blind I thought he liked ME! the inside personality,heart, smile. But I found out that was all untrue when he told me Oh jeannie I can not fake this you did not tell me you gained 50 pounds! and asked me to leave!!!!!!! I cried all the way home!

My average weight was 102 top 115 when this happened I was 148 I am 5ft and now up to 183 This is now unhealthy screw the superficial people this is about me breathing to hard having a hard time with the stairs I need to lose this weight fast!!!!!!
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