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Prolactinoma and weight issues

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Old 01-09-2014, 03:09 PM   #196
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I had a prolactinoma back when I was 21 (now 30) with my prolactin levels in the 300's (no, that's not a typo). I was horribly sick and skyrocketed from 170 to 300lbs (I will admit that my habits were not overly healthy during that time).

After 2 years of medications I was tumor free but have an "empty" space (I forget the term they used) where it was.

Like I said, I don't know if it made my weight gain worse, but I do know how difficult it is to live with a prolactinoma and how hard it is to just get out of bed in the morning.

Positive vibes to all dealing with this.
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Old 01-10-2014, 08:02 PM   #197
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Hi, it's been a couple of months since I last posted, it turns out I have something in my blood called Macroprolactin so my prolactin itself was at the borderline of the normal range, I think around 480 miUL. Anyway the doc still decided to treat me as I had a 4mm tumour of some form. Within a few weeks I had my 1st period in a year.

However I am still gaining weight very quickly, this seems to happening quicker and quicker for the last 3 years especially in the last 6 months. I am now officially obese, my net calorie intake (food-excercise) is anywhere from 900 cals to 1400 cals (4 out of 5 times around 1100 or 1150). However I am still GAINING HALF A POUND PER DAY!!! I dont understand how can possibly happen to gain half a pound you need to eat 1250 cals but I'm not even eating that, and I record generously and I even record things like a glass of squash.
I'm getting a little depressed as I 've gone from just needing to lose 6 pounds to my ideal healthy weight to being 50 pounds from it in 6 months (I've been dieting in the above way most of the time).
I don't know what to do, my endo said that neither the tablets or the high prolactin should be causing my weight gain (unless its in the hundreds if thousands), he wants to test me for thyroid and cortisol in 3 months, but I don't think my sanity will make it until then.

This will be the 5th time I will be tested for thyroid in the last 3 years and each time I come back normal, I know I've been tested for Cortisol recently aswell and it was normal.

I'm really at a loss now, stupid prolactin and tumour!

Last edited by Mash : 01-10-2014 at 08:59 PM.
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Old 01-22-2014, 12:56 PM   #198
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Hey there, everyone. I was dx with the pituitary tumor a little over 3 years ago while they were trying to figure out what caused the sudden onset tinnitus and hearing loss. All of my blood tests tell me that my prolactin, thyroid, etc, are in a normal range. The internist still felt that the tumor was still likely to blame (at least partially) for my weight issues, but did not feel that it needed to be medicated. It is still my sick dream that some doctor will feel the need to treat it some how, and the weight (I eat well, workout daily) will magically disappear overnight.

I can typically lose a few pounds during the first 2 weeks of a new diet plan, but then get stuck. My go to weight loss plan (South Beach) from my pre-tumor years no longer does much past the first 2 weeks anymore, even if I stick to it, count calories, and workout for 30-60 minutes a day. Very depressing.

I'm getting a MRI in a few weeks, and I'm seeing new doctors since I've moved 3 hours away. I'm hoping they can help me. I'm curious about the macroprolactin, and will have do do some research.

Glad to have found this thread...
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Old 04-14-2014, 09:19 PM   #199
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Hi everyone!

I googled "prolactinoma and weight gain" and found this site and thread. I am really surprised doctors don't say prolactinomas can cause weight gain since hormones regulate things like our weight and ability to lose it.

I was diagnosed with a 7mm microprolactinoma last January(2014). I finally had an answer! Around June 2011 I had lost my periods totally. Went to the doctor and she told me not to stress so much. Awesome. I started gaining a bit of weight in July 2011(10 pounds!). I was not amused but I figured I was stressing out because I had not changed my diet, routine or exercise. I slowly went from 115 pounds on my 5'4" medium build frame to 165 pounds within 2 years. I was getting looks and comments about my weight from my husband, classmates, friends, neighbors and family. I was exercising more and eating less. But who would believe me? Results speak for themselves?

I had gone to several different doctors throughout the time period of not having any naturally occuring periods at all and one doc had me on birth control just so my periods would occur. But at the time I couldn't afford birth control so that didn't help for long, plus I didn't feel like it made sense. It was just a bandaid.

Finally, I went to a walk in clinic and explained everything to a fresh faced young doctor but also mentioned that I think I might have Cushings Syndrome. So he sent me for bloodwork. Came back negative. Went to the same clinic, a different fresh faced young doctor and she asked why I was there and I said "I have no periods". So she sent me for bloodwork checking a whole list of hormones. The only one that was out of whack was my prolactin. So I was sent for an MRI.

I honestly think the only reason why I wasn't sent for bloodwork to check my hormones in the first place was because I never had any milk coming out of my breasts, which is what prolactin is supposed to do. I naturally have smaller breasts and they weren't leaking so it never came under my radar. It's hard when the main symptom of something doesn't happen to you, how is anyone supposed to know?

Well, I'm now on cabergoline twice a week since January(2014) and I have my periods back. They aren't like they used to be but I still have tremendous cramps when my periods happen. Never thought I'd be so happy for cramps. Unfortunately my weight has only just recently started dropping, like within the last two weeks. I have 3 boxes of "thin" clothes that I haven't worn for 3 years. I am hoping by this time next year I will be able to wear them again. If I didn't have a pituitary tumor I would expect to lose the weight normally and be able to wear them by the end of the summer this year. I am not getting my hopes up.

Here's to good health ladies!

btw, I also look "pregnant". I think it has something to do with the amount of cortisol or stress or whatever hormones are going on that makes us put more weight on in the middle? It's not a food baby(pizza?), it's hormones!!
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Old 04-28-2014, 11:19 AM   #200
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Unhappy Prolactinoma

Hi All

When I was 15, I got severed headaches and constantly felt tired.My Mom told me not to worry, it was probably due to stress from exams. Shortly after that I started seeing "milk" coming from my Breasts which was very odd as I was not sexually active. One evening I was rushed to Hospital because of the severe headaches and also mentioned to my Dr about the "milk", I was then referred to a Gynae who ordered an MRI.

In short, I a 31 year old female. I have not met anyone with the same condition and often find myself searching for answers. I have been on Dostinex for years now, due to the fact that bromocriptine(not sure of the spelling) did not agree with me. I have stopped taking Dostinex for the past few months,in the hope that it will help me lose weight.

Is there anyone who would like to connect and chat about their experience??
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Old 04-28-2014, 11:37 AM   #201
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Hi Lizlivingless

Wow that's amazing.How are you feeling now that you are Tumorless???
Which medication were you on because 300 is really high, I am sure you have a guardian Angel
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Old 05-02-2014, 12:59 PM   #202
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Thank you all for this forum.

So many of the posts I've read here have been identical to my experience with having a prolactinoma and all the comes along with it.

I was a serious runner for 6 years and ran a marathon in 2009. I was always able to eat huge amounts of whatever I wanted, and my metabolism was so fast, I had almost no fat at all. I had so much energy I was bouncing off the walls. . .

Then I started gaining weight, feeling more tired and sluggish, no periods, and lactating. I diagnosed myself from what I read online and then it was confirmed with an MRI in 2011. My levels were at 832, and I have a macro-adenoma.

I read some posts where people weren't sure if the weight gain had to do with the prolactinoma or the medication. I was on the same dose of Cabergoline for about 3 years, but I only saw my weight go down when my prolactin level went down. Now my levels have gone back up again and are at 950, and I have gained more weight again. I have gained a total of 40 pounds. So from my experience it is DEFINITELY the prolactin levels that cause weight gain.

Also, some people were wondering if the weight gain is just a result of poor diet or lack of exercise. I have been on many diets in my life and done lots of exercise, and when I put my mind to it I could ALWAYS lose weight. With the prolactinoma, my weight just WILL NOT BUDGE. I eat really clean and small portions, drink green shakes every day, do workout videos and take long walks every day. So it IS the prolactinoma.

I agree that my body looks sort of pregnant. The main thing that grew was my chest- I went from a 34B to a 34DD. Its funny b/c a lot of women want their boobs to grow and to not have a period, but not me. It hurts to go running, I have to wear 2 really tight sports bras.

From what I've read in this thread, many of you have prolactin levels between 50-300. Does ANYONE else have levels as high as mine?
If so I would love to hear about your experience. . .

Does anyone know more information about the difference between Cabergoline and Bromocriptine? I'm on Cab and I've never tried Bromo. . .

Thanks again for this post. Very helpful!
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Old 05-02-2014, 01:23 PM   #203
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One more question. . .

I'm not sure if its the Prolactin or the Cabergoline, but it felt like my digestive system just STOPPED. I got really constipated and had to take laxatives every day. I tried to go off of laxatives and didn't use the bathroom for 6 days! That was really painful. Also have gotten pretty horrible heartburn and reflux.

Even thought my levels are still high and I'm still on the drugs, my digestion is better now. Still finicky, but if I drink coffee first thing in the morning with no food, and then make a green shake I will use the bathroom every day. But if there is a slight shift in routine, everything gets thrown off. Still, very thankful to be back on track.

Did anyone else experience constipation or heartburn and reflux?
If so, do you think it was the prolactin or the medication?

Thanks!
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Old 06-14-2014, 02:53 PM   #204
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It's been almost two months since joining this forum and I have lost only two pounds, despite my best efforts. Ugh, tumor, leave me aloooone. I saw online somewhere a girl name her tumor. "Frank is giving a heachache today". Haha!

My prolactinoma is getting better, according to my endocrinologist. He seemed a bit shocked that I told him I felt really dizzy, confused sometimes, slow, lethargic, etc when I first started cabergoline. But, since then the symptoms have become drastically better yet are still present. He told me with a worried look on his face that if I ever have questions or concerns to call him, email him, contact his office, etc. Oops. Maybe I should have told him right away and he would have taken me off the cabergoline? I'm not a complainer, so I didn't even think of questioning the side effects. Not smart.

Also, seeing people I knew from previous jobs, schools, etc... I can't remember their names. I recognize their faces. I know I liked them. I know I used to consider that person a friend back when I knew them years ago... but I can't remember ANYONE'S name! Not sure if that is tumor related or not?

But, my prolactin levels are lowering and I will have another MRI in January 2015. My endocrinologist didn't tell me the numbers, but lower is better.

I have had 5 periods in a time frame where I should have normally had six. So that is cool, compared to not having any natural period at all for two years or so. But, recently, my breasts hurt. To the point where stretching hurts, jumping hurts, some movement hurts, just being hurts. The endocrinologist said he didn't know what that was about and it could be unrelated. I'm not pregnant, just had my period two days ago.

As far as my endocrinologist is concerned, I don't think he thinks my weight gain has anything to do with my prolactinoma. Maybe he's right, and I have something else going on. He's checking my thyroid hormones(TSH and free T4) on the next blood test in November. Not sure if that is a normal thing to check when you have a prolactinoma or not.

I honestly hope I have a thyroid issue. It would just explain a lot. Meh.
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Old 06-26-2014, 12:06 AM   #205
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Hi,
So I've been doing alot of research sparked by some issues my wife has been having over the past few years since the birth of our child. First, I have question. Were any of you diagnosed with prolactinoma without experiencing any discharge from your breast? Second, what were your ratios of hormones? (TSH, FSH, LH, compared to prolactin)

The third thing I have is more of an informational piece as I have spent over 1000 hours researching medical topics leading up to this and including this. For those of you experiencing issues with your weight, and are diagnosed with prolactinoma. I would suggest beating your doctor up about checking your thyroid and adrenal glands for issues related to the prolactinoma. These tumors will typically interfer with the pituitary gland's production of signal hormones to the two other glands. Many of the respectable sites I have read through indicate that this should be common practice for physicians to do regular tests to ensure functionality in these other glands isn't disrupted. Given my current experience with doctors i'm convinced that the vast majority of them probably don't know which end of thier body thier head is attached to.
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Old 06-26-2014, 01:11 AM   #206
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Hello

I have high prolactin, MRI shows no tumor. My levels are in the low 70s. I spoke with an endo who said I didn't need to take cab or bromo because 1. the levels aren't that high and 2. I am completely uninterested in being fertile. So for now our plan is to keep checking the prolactin levels yearly unless something changes, like lactation occurring.

I'm not fond of the idea of the meds because of the side effects, as I already have orthostatic hypotension. Cabergoline/Dostinex is a particularly concerning med because of it's potential side effect of scarring and fibrosing around the heart and other organs.

So, long story short I hate this prolactin stuff and I wish it would magically cure itself! (As most of us probably wish)

Oh and those who had the surgery, PLEASE, for goodness sake would one of you post what the surgery/recovery was like for you? I kept seeing people on this thread say they had the surgery and then no one bothered to really come back and describe it for those who may yet face it. I currently have no tumor showing up on MRI but I'm still scared that it's just because it's tiny and will show up later. Surgery may be the best option and I really want to hear from others what that was like.
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Old 06-26-2014, 03:17 AM   #207
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Hi ResearchingXYZ! I'm sorry about your wife's diagnosis. I wasn't diagnosed for about two or three years because I had no discharge from my breasts. The doctors told me there was nothing wrong, I was just stressed. I was finally diagnosed by a young female doctor who decided to check a whole bunch of my hormones with a blood test. I never asked the numbers, sorry.

I see an endocrinologist now and I'd like to trust that he knows what is up but I ask him questions and he tells me it's unrelated and doesn't give me a clear answer of what I should do. Maybe he actually only knows stuff about endocrinology and nothing else?


Hi MauiKai! It's good that the tumor isn't big enough to show on an MRI but I can understand why that would worry you. Mine was 7mm in diameter back in December last year(2013). My endocrinologist put me on .5mg of cabergoline twice a week. Little pill but it packs a punch, I would have preferred it if I didn't need medication to take care of this tumor! My numbers are going down and I'll have another MRI next January(2015). I'm hoping the lil bugger has shrunk enough to not be seen by then!

You should look things up that you can do that will naturally regulate your hormones! Like changing your diet a bit, adding certain spices(I love tumeric now!!), sleeping better, finding ways to treat yourself and relaxing(ie bubble baths, etc). I hope everything works well for you!

My Endo also told me that surgery for me would be unnecessary. I think he was right... I would also like some of the ladies(and guys?) to write about their post-op experiences, too! It must be an adjustment!
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Old 06-26-2014, 09:35 AM   #208
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Originally Posted by pinksunshine View Post


Hi MauiKai! It's good that the tumor isn't big enough to show on an MRI but I can understand why that would worry you. Mine was 7mm in diameter back in December last year(2013). My endocrinologist put me on .5mg of cabergoline twice a week. Little pill but it packs a punch, I would have preferred it if I didn't need medication to take care of this tumor! My numbers are going down and I'll have another MRI next January(2015). I'm hoping the lil bugger has shrunk enough to not be seen by then!

You should look things up that you can do that will naturally regulate your hormones! Like changing your diet a bit, adding certain spices(I love tumeric now!!), sleeping better, finding ways to treat yourself and relaxing(ie bubble baths, etc). I hope everything works well for you!

My Endo also told me that surgery for me would be unnecessary. I think he was right... I would also like some of the ladies(and guys?) to write about their post-op experiences, too! It must be an adjustment!
It's not that it doesn't show up, there isn't one, period. I have "idiopathic" high prolactin. I have very bad sleep and they are suspecting that is the culprit at this point. I worry though that a tumor could eventually appear. That is why I wish to know how the surgery was, what recovery was like, etc. I'm not willing to take such a horrible and risky med as cabergoline, and so surgery would likely be a first line treatment if a tumor were to show up.
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Old 06-26-2014, 04:53 PM   #209
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Oh, sorry I must have misread your post MauiKai! Hormones are tricky. Have you tried seeing a naturopathic doctor? If you don't like drugs, that kind if doctor may help you! Sleeping regular hours helps regulate our hormones. I hope you can fix that soon, I know that can be difficult.
My endocrinologist told me a story about one of his patients going nuts because despite the medication working to eliminate his tumor he felt it was still there. I think they eventually did a surgery on him that the doctors saw as unnecessary but the man was very relieved after.
Surgery itself can be a major thing. They have to go in through your nose and get through your skull in order to access that area and sometimes they are unsuccessful in taking the tumor out! I feel better taking this crazy medication, personally.
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Old 07-14-2014, 08:39 PM   #210
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Well-it generally goes with headaches and blurred vision- but , beyond this - it very much depends of the kind of the tumor- if it is a tumor of the pituitary:if it's secretory- I mean secreting these or other hormones- or non secreting...so- it may be about hormonal changes, weight changes, probably mood changes as well..anyway- the one responsible way to accurately establish what exactly is it about- is real life medicine- rather than ''phone medicine''...probably additional investigations- including blood tests and others- have to be done...being examined by her Primary Care physician- first- may be a good idea...
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