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Prolactinoma and weight issues

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Old 06-27-2009, 10:28 AM   #46
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Did anyone else find that they didn't just put on weight, but that they put it on in a very 'looking pregnant' way? My stomach has totally ballooned as if I'm several months along. Does this go away once you start on the medication (I don't mean do you lose all the weight straight away, but does your stomach at least stop looking like a beach ball?)? (P.S. This is my second time around with a prolactinoma, but I don't remember having this problem last time)
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Old 07-04-2009, 11:22 PM   #47
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Yes! I, too, am looking pregnant. My belly and breasts are huge! I've just been diagnosed with a prolactinoma. My doctors have told me it doesn't have anything to do with my weight, but I just feel that something is abnormal with my metabolism or something. I've been reading that there is a link between prolactinomas and weight, so I'm hoping that I'll start to slim down. I just started on bromocriptine, which reduces my appetite, so that feels promising.
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Old 07-21-2009, 05:25 PM   #48
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Default It's so nice to find this forum!

I have been searching for a group like this forever! I'm a 23 yr old and was diagnosed with a prolactinoma 2 years ago.. Have struggled with so many side effects from the pill I am taking (Cabergoline) and just recently started a blog in the hope of helping people who could use someone else's experience to relate to (because I dint have anyone to talk to about it).

Niloufer.
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Old 07-26-2009, 01:31 PM   #49
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Hi.

So I got my diagnosis from my endo in the mail on Friday (after 1,5 months of waiting...). I have hyperprolactinemia (prolactin is 58.9, it should be below 25 I think?). I know it's not the same as prolactinoma but it also says they have to take a MR of my pituary gland to check for adenomas and come back for more hormone testing asap.. I was in total shock. I am only 22. My parents are on vacation and I was all alone when I got this little peace of paper that explained NOTHING to me. After the initial shock I hit the internet hard for information about this.
I was trying to find out what is wrong with me for over two years. Now at least something came up NOT 'normal'. I still have to find what is causing the excess of prolactin. My TSH was always ''high but still normal'', a few months back it was 4.15 (0.4 - 4.2 range), fT3 and fT4 were low but also in the normal range, thyroid antibodies were fine. The other blood test I did this time around were free testosterone, cortisol and DHEAS which are normal. LH is lower than FSH and they are both on the low side of the normal range (I don't have actual numbers, this is what my endo wrote in the diagnosis).

I suspected I have PCOS and that is why I got myself tested. I've had severe migraines, trouble losing weight no matter how much diet and exercise I did, no libido, acne, no period, bloating and pain in the abdomen and breasts (which are getting bigger and bigger it's just insane, I am also like a pregnant lady)..

I don't really have anything smart to say. I hope I will get to the bottom of this. I am angry. I am angry at all my doctors. I am always really careful and nice to doctors and they treat me like it's all in my head, 'it's normal, you'll grow out of it' they say. One day I am going to snap at someone and tell them to go f.. themselves, I find more information on my own that any doctor has ever bothered to explain to me. If the endo I am seeing now doesn't call me in for explanation of the MR and further testing, and instead sends me a stupid note I am changing my doctor because this is just ridiculous. She is a doctor, she is supposed to explain to me what is wrong, what can be done, what are the causes... Especially if it takes her almost two months to diagnose and for me to pay her 80 for it!!!!!!

Anyway.. I hope I will start losing weight, having sex with my poor boyfriend, having regular periods and gain a little confidence. I don't even think about the effect this has on my fertility. I try to be positive but it seems I'll be the one with 'hormone problems' until I die.

I am sorry for my bitter post but I am just so upset with this.. I know it's not the worst medical thing that can happen to a person but I am just so angry with doctors and the lack of support. Some compassion sure would be nice.

I am glad I found you guys. I will post again after I cool down a bit

K.
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Old 07-26-2009, 09:48 PM   #50
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Glad to find this group...I had a baby one year ago and did not breastfeed. Three months later, I still hadn't had a period and was experiencing leaky breasts. My ob/gyn wasn't overly concerned at the time, but over the course of the year, I ended up having an MRI and prolactin levels checked several times to find out that I had had a prolactinoma and that it had burst sometime in March (had lots of headaches). Now, I have blood sitting in there that will eventually reabsorb but my prolactin levels still aren't in check. I just started bromocriptine last week. This is all kind of scary and frustrating especially since I know that I want to have another child, but am considered "infertile" right now. I did successfully have 2 periods, both after a series of estrogen and progesterone, but the endocrinologist said that they were "synthetic" periods and I will need to bromocriptine in order to start cycling on my own. As for my weight, I noticed that I couldn't lost the last 10 lbs of baby fat, while working out and eating right, until about March (when the tumor apparently burst!) I am currently right around my pre-baby weight, and wondering how the bromocriptine is going to affect my weight...
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Old 07-27-2009, 04:30 PM   #51
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Hi I found this blog because I googled "prolactinoma weight gain". I have very recently been diagnosed with prolactinoma. I have an MRI and endocrinology appointment this week. I have gained about 45 pounds in the last 5 years. I am 29 years old. I eat moderately healthy and exercise pretty regularly. I would understand if I had gained 5 to 15 pounds but 45 doesnt make any sense to me. I don't know much about drug therapy for prolactinoma. Does the medicine make you gain weight or is it supposed to regulate your hormones to help lose weight easier. Any info on the subject would be helpful. I also have had abnormal hair growth and vision problems do you think this can be corrected with drug therapy? Also what kind of negative side effects of the drug therapy have you experienced? I would like to go to my appointment as informed as possible. Thanks for blogging it helps to know I am not alone.

Stephanie
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Old 07-27-2009, 04:30 PM   #52
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Hi I found this blog because I googled "prolactinoma weight gain". I have very recently been diagnosed with prolactinoma. I have an MRI and endocrinology appointment this week. I have gained about 45 pounds in the last 5 years. I am 29 years old. I eat moderately healthy and exercise pretty regularly. I would understand if I had gained 5 to 15 pounds but 45 doesnt make any sense to me. I don't know much about drug therapy for prolactinoma. Does the medicine make you gain weight or is it supposed to regulate your hormones to help lose weight easier. Any info on the subject would be helpful. I also have had abnormal hair growth and vision problems do you think this can be corrected with drug therapy? Also what kind of negative side effects of the drug therapy have you experienced? I would like to go to my appointment as informed as possible. Thanks for blogging it helps to know I am not alone.

Stephanie
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Old 08-01-2009, 08:43 AM   #53
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It's official. I have a 20mm macroadenom on my pituitary gland.. I don't know what to think or expect. Will the doctors put me on meds to shrink it, will I get it removed one day..? Would Cabergoline work in my case? Does/did anyone else have a tumor this size? Please PM me if you have any encouraging experience with this I am so freaked out..

K.
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Old 08-08-2009, 01:28 AM   #54
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I just found this forum and can't believe I didn't find it 3 years ago when I was looking EVERYWHERE for research, or just one person who gained weight with their pituitary tumor as well. I got weird cravings, gained 20 lbs in a year, and when I went through my labor/delivery clinical in nursing school found that I had all the symptoms of pregnancy. I can't tell you how many times I relayed my symptoms to various doctors who ALL asked me if I was pregnant. Back then I found NOTHING anywhere about gaining weight with a prolactinoma.

I gained 20lbs my senior year of high school and another 25 in college. I was diagnosed my sophomore year of college with my tumor, and while emotionally I felt a little better after starting meds, it wasn't until a friend suggested if I got on birth control my hormones my regulate. I had gained so much weight that I hadn't tried it before because I didn't want to gain even 5 more pounds. But I immediately dropped 15 lbs, and then slowly crept back down to a more reasonable weight without much chang in my eating/exercise habits.

I am on dostinex, and tolerate it well. The first time I took it I passed out and hit my head, but other than that; no side effects :-) Also after diagnosis, not sure whether it's related or not; I had SEVERE nausea that would hit at the most inopportune times, all I could do was curl up in a ball and hope it would end. Also, the parts of my skin exposed to cold would break out in hives. Even if it was hot outside, if I dipped my legs in a cold lake...hives.

Khat: I can't tell you whether or not Cabergoline will work for you, but from what my endocrinologists (I've had 3 d/t moving around) have told me; I think they treat micro/macro similarly...try medication first, but depending on just how big, you may need surgery and/or radiation. Mostly it's dependent on how you respond to medication and whether or not you have visual impairment. You'll probably also be checked more often. I often forget I even have a tumor, but I'm teetering on the edge of a micro/macro. I'm getting another MRI this month, so we'll see. I gained 8 lbs in the last 6 weeks, so either I'm eating too much, or the tumor is growing. I have a feeling it's the tumor, but we'll see.

Good luck to all of you! And thank you for posting, it's really comforting knowing I'm not alone :-)
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Old 08-13-2009, 09:09 PM   #55
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I've been looking for this for over 4 years. I've been to two endos...my primary care doctor....taken Parlodel and now on Dostinex....but no one wants to listen about the weight gain. After I got my prolactinoma under control the first time around 2 years ago, I was able to lose 60 pounds. Unfortunately, prolactin levels started rising again...and here I am 55 pounds heavier...only kept five of it off. No one wants to believe me....Endocrinologist just looks at me like I'm crazy. I'm so happy I found this site. Things have been so frustrating....it's almost depressing sometimes. Thank goodness I'm not alone and I'm not crazy!!! Yeah!!!
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Old 08-16-2009, 12:15 AM   #56
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Default An Apple a Day...

Ok, so I'm not sure if this will help everyone or just me; but when I moved 2 years ago I lost about 20-25lbs. People kept asking me what my secret was and I honestly had no idea. I figured it was the stress of the move, but recently I read an article about certain foods to eat for weight loss. Among those listed were apples and calcium. When I moved here I would crave apples & peanut butter and ice cream. I would have at least 1-2 apples a day and probably at least 2 servings of icecream (lowfat) a day. I kept wondering WHY the lbs were falling off when I was eating so much icecream, it's bad right!? Anyway, enough rambling. In the past 6-8 weeks I gained about 8 lbs. After reading the article about weight loss foods I realized that I had stopped eating apples a while back. I started trying to eat at least 1 apple/day. I've lost a couple lbs already, so I thought I'd share this in case it works for anyone else! Also, I've never had problems with cholesterol, but comparing my 2008 labwork with my 2009 (lots of apples vs no apples), my cholesterol rose...and apples are supposed to help with cholesterol as well :-) Good luck!
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Old 08-17-2009, 02:29 AM   #57
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Default Khat - Hang in there!

i am a 29 year old gal who just found out about the macroadenoma prolactinoma i have in late June. I was put on .5 Cabergoline (generic dostinex) twice a week. I would recommend you start with half the dosage and work your way up to the full dosage. I also find taking herbs (new chapter tranquilnite) to help me sleep with the pills and eating at bedtime when taking the pill is also helpful. Its a pretty scary thought to think you have something growing in your brain thats not supposed to be there, but at least you know now and not years from now. - Hope that helps Khat

Also to the group - i was sub-clinical hypothyroid and my PCP was awesome enough to let me try low dose .5MCG Synthroid ( i pay cash for the good stuff (brand name) on this because generic is non-standardized for thyroid) and once i did this i was able to loose 35 pounds with my tsh in check. However, it has been impossible to loose the belly - it is almost the same size as when i was heavier (im 5"2, so 35 lbs is ALOT for my frame) - so I am hoping the cabergoline will help alleviate some of that belly bulge that doesnt seem to want to leave no matter how hard i diet/excercise.

I am excited to see others posting about hair loss as well! My hair has been falling out and super thin for a few years now... I think it is finally starting to slow in terms of falling out - anyone else start to see this on cabergoline?
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Old 08-18-2009, 12:29 AM   #58
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Default Bromocriptine

I started on Bromocriptine in June. The first 2 days, I felt really nauseous and just bad, but I'm tolerating it well now. I still feel a little woozy if I move my head too fast and feel a little confused, but these side affects are not bad. One good thing - my appetite has decreased and I don't have uncontrollable cravings for sweets!! I've lost 10 pounds without really trying too hard. Don't know if that's a side effect of the medicine or a result of my prolactin level regulating. It has decrease from 200+ to 20 in this short time. I'm very interested in the post about the thinning hair. My hair has been thin for a very long time. Wonder if this prolactinoma had anything to do with it. Also, my knees are really sore and have some swelling for the last month or so. I haven't done any strenuous exercse for a long time. I'm thinking this also may be a side effect of the Bromo but can't really find definite information that it is. Anybody else on Bromo have sore knees or joints?
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Old 08-18-2009, 12:49 PM   #59
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I have the weird woozy thing too if I turn too fast! Weird! I am on Cabergoline though. Any one else have a dizzy/woozy feel if they turn too fast? I am hopeful that my hair will start to get thicker soon
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Old 08-26-2009, 03:24 AM   #60
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Default Me too!

Hi Everyone, I also have a prolactin issues and a tumor. In the past I looked everywhere for some insight on my suspicion that my "unexplained" weight gain was possibly due to my prolactinoma. I can't believe I never found this thread! At this point I am much better informed that 7 years ago when it was first suspected, but the weight question remains. Same story as so many of you ladies, doctors tell you to work out and can't seem to fathom the idea that weight is associated. I am trying with all my might to limit calories in an effort to lose weight. I have had twins and what's left isn't too pretty and this extra weight isn't helping. I am just about to start Bromocriptine (stop some leakage) so I wanted to see what if any relation it may have to weight. I hope to have pleasant updates in the near future.
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