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Prolactinoma and weight issues

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Old 09-25-2012, 05:17 PM   #181
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Hello, my name is Rose, I'm 20 years old, and for the past 4 years I have been lactating on and off, more on than off, and just recently I was diagnosed with a prolactinoma and a choroid fissure cyst. I thought I was literally going insane because I cannot sleep without the help of sleeping medication, my nerves are very shot plus I have IBS. The blood work I had done came back with a high amount of Prolactin, mine should be at about 18 and its 69, my doctor explained to me that all the hormones that are out of whack are causing my weight gain (which has been about 30 lb's in 6 months, I've been the same weight for atleast the last 5 years of my life), also I explained my insomnia to the doctor and he said that my hormone levels are that of a pregnant woman going threw menopause (YIKES!), I haven't had a period in about 7 months and had 2 of what I thought to be miscarriages about 4 months ago. Despite ALL my efforts to lose this weight I can't shake it, I lost maybe 3 lbs and gain it right back, I walk atleast 30 hours a week, and am a healthy eater, I hadn't changed my habits at all when I gained this weight. The mood swings are terrible and these hot flashes during the night make my skin crawl. I've been to a neurologist, neuro surgeon, family dr., and my gyn., everyone passes the buck to another doctor when telling me I should be on a medication called Bromocriptine, no one will perscribe it! The endo. is giving me a hard time about making an appointment now too! I'm going insane! I'm very relieved to see there are many other people who have the same thing and understand what I am going threw. My dad and mom just say I don't exercise enough and eat too much, which is NOT the case!! I've tried everything except surgery to lose weight and no such luck! Any advise would be very very muchly appreciated!
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Old 10-05-2012, 07:47 PM   #182
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which i don't know what this stupid thing is talking about! I just want to thank you so much and i hope that everything works out for me and i get pregnant soon and my level stay normal.
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Old 10-16-2012, 12:57 PM   #183
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Hi Everyone,

I am anxiously awaiting test results from my doctor who suspects I have a prolactin pituitary tumor. I gained a substantial amount of weight without any type of lifestyle change. Once I really became aware of my weight I started working out daily and eating much better. Didn't lose a pound. Not one. I was and am so frustrated. In this time frame I had stopped taking my birth control pills and broke up with my boyfriend. Didn't have a period for 8 months before going to the doctor. Had always had some lactation but it had been going on so long I never thought too much about it. None of my previous doctors seemed concerned. I mentioned it to my new doctor and she was fairly concerned! My question to everybody who has dealt with this issue is: with the prolactinoma, did you not only gain weight, but feel increasingly depressed?
Hi Stepharmi, yes, I definitely grew very depressed as well as put on slot if weight due to my Prolactinoma! I have not been on any medication past 7 yrs as Neurosurgery was not urgent back when diagnosed, so after I had a bad reaction to Bromocryptine, I stupidly got lazy and never went back to my endocrinologist. Bad move, and one I will be rectifying soon, as we Pituitary Adenoma suffered tend to accept our lives as being "normal" until we look around at others who don't live with constant weight gain, headaches, exhaustion, occasional leaking breasts when prolactin rises, and in my case, absolutely worst of all has been the excessive thick hair growth on my chin, side burns, chest and upper legs, and tummy areas...all the places where society deems it disgusting for women to grow hair! I will b getting my bloods retaken and ask for meds. Overall irls, I feel that my quality of life has slowly dwindled, and keep in mind our prognosis can also cause excess hormones like testosterone as well as hypothyroidism, the very thing that governs our metabolism, making weight gain probable, aweight ssharder. Msg me at [][/] for any tips
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Old 10-17-2012, 08:26 PM   #184
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Talking Prolactinoma Diagnosed At Age 42

I was recently diagnosed with Prolactinoma. My MRI indicates a 8 mm tumor. Needless to say once I received the news I was SCARED AND STRESSED OUT.. Being the control freak that I am I immediately came home and began researching and found this website. In the past 2 yrs I have not had a period and weight gain has been about 30 lbs. The kicker was my eyesight starting going south fast. I am very thankful for finding this website. I can't wait to start treatment, as I am being referred to Endocrinologist. I will keep all posted.
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Old 10-20-2012, 03:19 PM   #185
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Height: 5'6"

Thumbs up After Surgery

It has been a few months since I had surgery to remove my pituitary tumor. For the record it was measured at 1.5 cm by 10 mm.
After surgery my Prolactin levels returned to normal within 2 weeks. After getting the O.K. from my Dr. that I could return to normal activities about 4 months after my surgery I have begun my old work out routines and for the first time in my life been able to see the effects working out actually has on my weight, almost immediately. The farther away the experience the more I realize how much the tumor was effecting me. I don't want to be a poster child for surgery but since I was never put on medication to suppress Prolactin levels this is the first time in years I have felt so in control.
I hope all of you just as much success as I feel I have had over this obstacle. Don't settle for a life you know you hate.
Message me for any extra questions you might have.
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Old 12-10-2012, 05:10 PM   #186
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hi i am so glad i found this site, i was diagnosed with a prolactinoma early this yr after not menstrating for 6 months and gained a lot of weight. which i thought was because of over eating. i have been on bromocriptine for 1 yr now. my tumor is shrinking and my prolactin levels are normalising. but my concern is for reoccurence. plus my doctors adviced me not to get pregnant now or even in the nearest future. that scared the **** out of me. this seems to be something one has to live with for long time.
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Old 12-29-2012, 02:31 PM   #187
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Question New here!

Hi everyone! So glad I found a website like this!! Ok for starters this is all completely new to me and I have a million questions and not sure where to start. I was recently diagnosed about 3 weeks ago with a prolactinoma (very small only 3mm), my prolactin was 33 (not super high) but my ACTH is 172 (normal is 6-50) & cortisol is normal. My doctor is going with the prolactinoma diagnosis rather than Cushing's Disease because my cortisol is normal. However, is anyone else's ACTH elevated like this with a prolactinoma?? I have had no issues with missed periods (my periods are actually too frequent!!) or lactation. I originally was experiencing a little weight gain (especially around the middle) no matter what I ate or my activity level and in a short amount of time, fatigue, bad headaches, bloating, mild depression/mood swings, I've experienced my hair getting shorter and shorter (it breaks off quicker than it grows no matter what I do!) and too frequent periods which is what led up to all the testing. I'm on cabergoline (Dostinex) .5mg/week. Side effects kinda suck as times but is mostly tolerable I guess. In my mind I'm not 100% convinced it's a prolactinoma. From what I've been reading, ACTH and prolactin aren't really correlated with each other. Any help would be greatly appreciated because I'm a bit lost right now. (and no, I'm not pregnant lol) Thanks!!

Last edited by btrflygrl24 : 01-05-2013 at 04:31 PM. Reason: additional information
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Old 01-30-2013, 11:27 PM   #188
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I was recently diagnosed about 3 weeks ago with a prolactinoma (very small only 3mm), In my mind I'm not 100% convinced it's a prolactinoma. From what I've been reading, ACTH and prolactin aren't really correlated with each other. Any help would be greatly appreciated because I'm a bit lost right now. (and no, I'm not pregnant lol) Thanks!!
I'm not familiar with the ACTH problem you refer to, but if you've been diagnosed, you should act on the basis of this info. I have higher Prolactin levels than you (around 50-55), but my CT scans show no tumor, so I don't know where my problem is coming from! If at least I had the certainty...

I suggest that you search for an endocrinologist that you're comfortable with. I've seen two endos with great reputations that dismissed me because my Prolactin levels weren't high enough, and sent me back with painkillers, and to a gynecologist. I saw a neurosurgeon with lots of experience who studied the CT Scan and told me his guess was that a tumor may be forming, on the basis that the prolactin levels keep going up despite treatment.

I had my first treatment with Cabergoline (Dostinex 0.5mg) in 2010 and it worked really well. My Prolactin lowered to -0 and stayed low for about 6-8 months. Then in 2011 the levels went up again, but I was able to control the symptoms (mainly breast pain) with painkillers. Right now my levels are high again and a doctor switched me to Bromocriptine, which I could not tolerate at all. My body responded awfully to this medicine: panic attacks, stomach issues, tachycardia... So I may begin on Dostinex again.
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Old 01-31-2013, 01:24 AM   #189
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Hi everyone! I recently switched drs (to a more reputable one that I can actually talk to) and got some different answers. He thinks my tumor is not producing prolactin like the other dr did but instead that my prolactin is high on its own or as a secondary symptom of the tumor and that I will need to stay on cabergoline until menopause it sounds like :-/.My prolactin is now down to 3 which is good i guess but side effects of the meds are still unpleasant. I had a scary incident driving on a busy highway during rush hour and my blood pressure just plummeted out of nowhere! Not very comforting and a bit scary. I couldn't imagine being on bromo! :-( My ACTH which i mentioned before is still high...cushings disease is another type of pituitary tumor that secretes ACTH rather than prolactin. They usually confirm this thru blood tests for cortisol but mine is normal. He think this just could be the early signs of cushings disease so it'll have to be monitored. Unfortunately there's no medication to fix that type of tumor, just surgery. This would make sense and answer my ACTH question I guess! On top of that my TSH is a little high which might also explain my sudden weight gain and extreme fatigue and too frequent periods (rather than too few which many of you have) so I'm supposed to start taking synthroid. So in a nut shell 1 problem has now turned into 3. Ugh. Trying to stay positive here!
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Old 04-09-2013, 08:41 PM   #190
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Hi everyone - I am from the Uk and I have had problems with very high prolactin levels currently 1245 I was scanned and tested for a pituitary tumor and they could not detect any on the ct or MRI only that my pituitary tumor gland was enlarged and deviating to one side - I have not had a period for 2 years and have gained so much weight despite not being a big eater and going to the gym regularly. in fact when I should have lost weight I was gaining. I am so depressed as I have gone from a size 10 to a size 18 My breasts have gone from a 34B to a 38DD and I look like I am six months pregnant. I spoke to the GP and the endocrinologist from the hospital and they still do not think the weight is pituitary related but from reading all of your posts I think we can safely say that it is. I have just had a course of provera to bring on my period and have just started taking cabergoline so far I have only had the one weekly dose and it has already given me headaches and dizzyiness but it's a small price if it means the levels will drop - What I want to know is whether I may lose weight if my prolactin goes down - Prior to any treatment I felt lethargic, headachey and very down - this could be due to the fact that I have got so large it has affected my self esteem. I am more worried about the weight gain and hope that the medication will help stabilize it. has anyone had any success with weight loss or do you have any tips x
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Old 07-19-2013, 09:35 PM   #191
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After over a decade of complaining to 6 doctors of breastmilk (and being told to stop self-stimulating even w/elevated Prolactin labs!) and weight gain when I have eaten the healthiest & exercised the most I ever have (told to eat better!) finally my new GYN listened and I have since been Dx'd w/Pituitary Tumor via MRI. Just getting over the issue of NOT being listened to by many many doctors--been on 2.5 mg of Bromocriptine for 6 months and still haven't lost a pound. I am quite upset over this where I REALLY do eat so healthy I'm surprised I don't look like a Spinach leaf Did anyone else take a looong time before they started seeing weight loss?
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Old 10-25-2013, 06:08 AM   #192
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Hi all,

I'm new here. I have been diagnosed with hyperprolactinemia a couple of months ago and am now waiting for an MRI to confirm prolactinoma.

Just wanted to find out whether anyone found it easier to lose weight after treatment/once prolactin levels were back to normal?

My levels aren't crazily high: 1300 miU/L but I haven't had a period since quitting the pill 10 months ago. My TSH is 284 (which I understand the limit should be around 300) and high TSH= hypothyroidism which is strange as my previous doctor was sure I had hypothyroidism as I had pretty much all the symptoms ie: feeling cold all the time, tired, gaining weight a bit too easily, sparse hair on the outer part of the eyebrows but yet said I'm in the normal range so I'm fine.

To sum up my weight history:

I've always been a little on the heavier side, not massively although I went from a UK 12 to 16 during my teenage years. 3 years ago I went on a diet which involved exercising 4 times a week but still eating whatever I wanted. Within 6 months I lost 15kg/2 stone/30 pounds. During this time my periods which were already painful got even more so, so my doc switched my contraceptive pill.
Within a week I go night sweats, low blood pressure and was completely unable to lose anymore weight, I tried exercising 6 times a week, restricted my diet down to 1200 cals. Stopped any dieting, let myself put some weight on in case it was a plateau, tried it all again - no weight loss ( well I'd be able to lose approx 2-5 pounds which would all go back on the minute I ate over 1500 cals aday so my guess is that it was water weight).

Over the next 2.5 years I had god knows how many blood tests, heart scans, ECG each time checking my hormones and thyroid. Once a doc mumbled something about hyperprolactinemia (but then mumbled that he couldnt do anyhing), but all the docs were ever concerned about was finding why my blood pressure was so low.
I also tried many different contraceptive pills in case that was the issue until 10 months ago when he doc told me he thought I had hypothyroidism and if not I just need to drink more water (I drink plenty!), blood test came back normal and certain it was the pill I decided to stop it.

The night sweats stopped but I was still unable to lose weight and my periods stopped. On top of this despite exercising and eating 1200-1400 cals a day I have put on 15 pounds.

Fast forward to september, I got a new doctor as I'd moved house and slightly dislocated my jaw. Whilst I was there I mentioned oh by the way, I've been struggling with my weight and haven't had a period. For the first time the doctor actually seemed truly concerned with my weight issues and tested my hormones again which came back with high prolactin and was immediately reffered to an endocrinologist.

This is really getting to me as I am assuming that my prolactin probably had been high for a while and stopping me from losing weight and causing symptoms but yet chose not to do anything about it!

I am also thinking that the high prolactin (and hormonal imbalance that come with it) is probably what caused me to have painful periods and other side effects on the pill.

Also I'm sure I read somewhere that you actually need to be outside of the normal range for Thyroid for it to cause symptoms. Anyone here had that experience?
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Old 11-03-2013, 02:01 PM   #193
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Default high prolactin and weight gain / Cabergoline

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Originally Posted by Mash View Post
Hi all,

I'm new here. I have been diagnosed with hyperprolactinemia a couple of months ago and am now waiting for an MRI to confirm prolactinoma.

Just wanted to find out whether anyone found it easier to lose weight after treatment/once prolactin levels were back to normal?

My levels aren't crazily high: 1300 miU/L but I haven't had a period since quitting the pill 10 months ago. My TSH is 284 (which I understand the limit should be around 300) and high TSH= hypothyroidism which is strange as my previous doctor was sure I had hypothyroidism as I had pretty much all the symptoms ie: feeling cold all the time, tired, gaining weight a bit too easily, sparse hair on the outer part of the eyebrows but yet said I'm in the normal range so I'm fine.

To sum up my weight history:

I've always been a little on the heavier side, not massively although I went from a UK 12 to 16 during my teenage years. 3 years ago I went on a diet which involved exercising 4 times a week but still eating whatever I wanted. Within 6 months I lost 15kg/2 stone/30 pounds. During this time my periods which were already painful got even more so, so my doc switched my contraceptive pill.
Within a week I go night sweats, low blood pressure and was completely unable to lose anymore weight, I tried exercising 6 times a week, restricted my diet down to 1200 cals. Stopped any dieting, let myself put some weight on in case it was a plateau, tried it all again - no weight loss ( well I'd be able to lose approx 2-5 pounds which would all go back on the minute I ate over 1500 cals aday so my guess is that it was water weight).

Over the next 2.5 years I had god knows how many blood tests, heart scans, ECG each time checking my hormones and thyroid. Once a doc mumbled something about hyperprolactinemia (but then mumbled that he couldnt do anyhing), but all the docs were ever concerned about was finding why my blood pressure was so low.
I also tried many different contraceptive pills in case that was the issue until 10 months ago when he doc told me he thought I had hypothyroidism and if not I just need to drink more water (I drink plenty!), blood test came back normal and certain it was the pill I decided to stop it.

The night sweats stopped but I was still unable to lose weight and my periods stopped. On top of this despite exercising and eating 1200-1400 cals a day I have put on 15 pounds.

Fast forward to september, I got a new doctor as I'd moved house and slightly dislocated my jaw. Whilst I was there I mentioned oh by the way, I've been struggling with my weight and haven't had a period. For the first time the doctor actually seemed truly concerned with my weight issues and tested my hormones again which came back with high prolactin and was immediately reffered to an endocrinologist.

This is really getting to me as I am assuming that my prolactin probably had been high for a while and stopping me from losing weight and causing symptoms but yet chose not to do anything about it!

I am also thinking that the high prolactin (and hormonal imbalance that come with it) is probably what caused me to have painful periods and other side effects on the pill.

Also I'm sure I read somewhere that you actually need to be outside of the normal range for Thyroid for it to cause symptoms. Anyone here had that experience?
Hello -

I have been back and forth trying to figure out what is wrong with me this last two years and final had MRI that found very small growth 4mm and prolactin is high (not crazy like 50-60 ) also had low corisol and then TSH also went crazy but now been coming back to normal.

I also told them I have gained SOOO much weight all in the middle like beach ball. I hate the way I look but no dr can tell me anything just tell me to lose weight.

I feel like something has been really wrong with me for over a year but they all say just take this pill and lose weight.

I hate my body and hate living in it.

Hope the Cabergoline help but this is first website I have seen so far that even talks about weight gain and high prolactin.

Best wishes everyone!

Cynthia
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Old 11-17-2013, 04:37 PM   #194
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Hello -

I have been back and forth trying to figure out what is wrong with me this last two years and final had MRI that found very small growth 4mm and prolactin is high (not crazy like 50-60 ) also had low corisol and then TSH also went crazy but now been coming back to normal.

I also told them I have gained SOOO much weight all in the middle like beach ball. I hate the way I look but no dr can tell me anything just tell me to lose weight.

I feel like something has been really wrong with me for over a year but they all say just take this pill and lose weight.

I hate my body and hate living in it.

Hope the Cabergoline help but this is first website I have seen so far that even talks about weight gain and high prolactin.

Best wishes everyone!

Cynthia
Aww I know this whole prolactin thing is horrible, I'm the same as you, it all went to the middle, I feel really disgusted with myself and no matter how hard I try I can't lose the weight.

I'm pretty much got the same situation as you - now had my MRI which came back with a 4mm prolactinoma, and not massively high levels - 1300 mIU/L for a limit of 500mIU/L.

I mean I can understand why doctors are tough with the weight thing, I think lot of people are sure there's something wrong with them when they haven't even tried losing weight. However for the few of us that do actually have a problem it's a little distressing. One of my docs solutions was to simply drink more water!

After researching the net on hyperprolactinemia it appears to be a fact that high prolactin causes obesity as it decreases glucose tolerance - which would make you put on fat around the middle. I also read somewhere that part of that reason is when prolactin increases in pregnancy it also helps women store fat ready to breastfeed.

Starting Bromocriptine tommorow! Wish me luck! I'm a little worried about the orthostatic hypotension though as it's already quite a bit of an issue for me before even taking the pills..
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Old 01-05-2014, 11:57 AM   #195
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Default Oh, hai!

Hi there. Ow ma gawsh. So glad to have found this thread. I figured I was just a regular fatty. But when my weight started going up for no reason (from a comfortable 65kg to umm. I dont know. Too scared to weight myself but last check it was well over 85kg) despite all efforts to lose it, compiled with severe galactorrhea and my everchanging moods, I figured something was a miss. I had some blood tests run before Christmas which indicate my prolactin is off the charts at over 3900 mIU/L, indicating prolactinoma. A flipping brain tumour. Fan-flipping-tastic.

My MRI is scheduled for next week. And Ill be honest, all of this is a bit much. I already have PCOS, IBS, BPD, OCD and anxiety. I didnt really need another thing to go wrong. Im only 26. I kind of already have my hands full.

From what I can gather from this forum, everyone struggles with this for years! Please tell me it isnt true! Can this be cured?
Im also very hesitant of taking any medications that are going to interfere with my current psychiatric medications (I take Amulsipride and Mirtazapine - taking these are non negotiable) and hormone/PCOS meds (I take Noromin-1 - also non negotiable). From what I have been reading online, the two medications on the market for prolactinoma may have undesirable side effects when taken with my current medication. Is there anyone else out there in this situation? Does this mean my only option is surgery? And if so, what is the success rate/risk?

Argh. So many questions.
Id be keen to bounce any experience of you guys, especially anyone from Australia (Im from Melbourne) or the UK, as our medications/terminology and measurements/healthcare systems are very similar.

Sigh. So over looking like Im pregnant. From a size 10 to a size 18 (UK). Ridiculous.

Thank you all for sharing and making me feel like Im not so effing alone in this.

Be nice. Be brave. x.
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