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Prolactinoma and weight issues

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Old 12-28-2010, 01:10 PM   #121
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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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Old 12-28-2010, 04:35 PM   #122
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Hi all. Just thought I'd post an update. Well, with the aid of Dostinex and Nutrisystem I finally shed most of the weight I'd gained after 2 years of trying. Healthy eating and/dieting alone did not do it. Something about Nutrisystem, maybe the blood sugar control, was the key for me. The Dostinex twice a week also seemed to help once I added it in to the mix.

However, 2 months after I started the Dostinex, my periods returned and I decided to try for baby #2. I just did a pregnancy test today and it was POSITIVE so I shed the weight just in time to gain it back. LOL. At least I know I can lose it again later. This is the seconds time Dostinex has worked and I have become pregnant so it is definitely possible to have a baby if you use this medication to lower your prolactin and start cycling again.

Crystal
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Old 01-06-2011, 02:26 PM   #123
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Hi,

Im new here after looking for imformation on the medication I have been prescribed 'Bromocriptine'. To be honest I almost cried reading the comments. In the past 4-5 years I have gone from a uk size 12 to a 20 (I think that would be a US 8 to a US 16) Weight mainly on my stomach hips and bust. I was never big on exorsize but I wasn't unhealthy and never ate to an extreme. When I first started gaining weight and got to a 16 I began to diet, attended a gym etc, but didn't lose and kept gaining.

My periods stopped a year and a half ago and the weight really piled since then I have gained almost 40lb. Dieting and almost starving myself would barely shift anything which made me depressed and binge (which didnt help). I was too scared to go to the doctors as I was terrified of them telling me I was infertile. But under duress from my boyfriend I went and the results came back as high prolactin, my gp blamed this on my anti-deprassants and took me of them. After 3 months I returned and was tested again where they found my prolactin was even higher. I waited another two months for an appointment with an endocrine specialist where she explained about the tumour and the tests I would go through she also told me my prolactin was 3600 and something. I mentioned my weight gain but she blamed it on eating and lack of exercize (which I feel is unfair and does not explain the rate I gain weight)

4 months later I have just got the results from my mri and blood test and it is confirmed I have a secretring pituatary (also my levels are now over 3700). Even though the specialist had said weight gain was not linked forums online had confirmed my suspisions.

I was excited to get the medication, for the return of my periods (as I am getting married in two years) and, finally, to lose weight. I thought I was unlucky it wasn't noticed earlier, as because it was so high I assumed it had been affecting me for years. But from reading on here this doesn't seem the case and it seems I may gain even more weight. I honestly just feel so sick of it I am 25 and have spent my 20's so far embarrassed and ashamed of my body. I really hoped getting this sorted would help.

Sorry for the long post.
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Old 01-06-2011, 02:47 PM   #124
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I also have a question is prolactin measured differently in US to UK, from reading posts on here most people have a high of 200. But mine is currently over 3700! Has anyone else got one as high?
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Old 01-06-2011, 10:43 PM   #125
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Hello Ladies,
I finally went to see the endo and she put me on Bromocriptine 2.5mg. I have to take one tab daily. Uugh!! I do hope that it bring my level down enough so that we can become pregnant. I did ask questions but the answers were similiar to the one's above so...nothing new of course!! But hopefully things will get better and this tumor will dissolve! Hope all of you are doing well and getting thinner!! That's it for now, hopefully my new news will be good news next time ladies, Good Luck All!!

@ Clang (Crystal), Hope that i can get the same results one day =) Good Luck 2 U and ur little one!!

@ Shellebelle85, Not sure about the numbers, but you should ask your endo and hopefully she can give u a good explanation, Good Luck!!
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Old 01-22-2011, 06:04 PM   #126
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Well I have been taking bromocriptine for two weeks and doubled from 1mg to 2mg today, then next week I go to 2.5. Im having pretty bad headaches and am tired all the time but I cant be sure how much that is the tablets and how much is the fact that I started my teaching practice at the same time (I'm a trainee teacher).

Hopefuly it doesnt get much worse, the thing I hate most is the sinus pain I know that is the tablet as it always comes on about an hour after I have taken it. I dont understand why it happens though.
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Old 01-23-2011, 11:36 PM   #127
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I could not be happier to find this thread. I was diagnosed with pituitary adenoma in 1998. I had a baby in 2009 and I have been a mess since. My weight has skyrocketed and I can't lose a single pound. Breastfeeding did not work for me, yet I am still leaking. I finally went back to my endo 2 weeks ago and she is waiting to put me back on my meds until she get my bloodwork back and my MRI results.

I am tired of the lack of energy, the bloating, the moodswings, and I have been so depressed. I have not had my menses for about 8 mos. Never thought I would be so happy to say it , but I can't wait to get my period!!!!! I am hoping that I don't have too much side affects from the medicine. I hoping it helps me with my weight issues, but that is really was has me soooooo upset. I have stopped doing stuff I love because I am so ashamed with how I look, I just don't do anything anymore.

So happy to know I am not the only one.

Anyone so bloated that they can't get their rings on? I have never had it this bad.
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Old 01-24-2011, 12:53 AM   #128
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UPDATE:
I went to my first endo appointment and i was put on 2.5mg bromocriptine. I was having so much sinus problems that i couldn't hardly breath and sleep at night because i had so much nasal congestion, so she changed me to cabergoline .5mg and i take a 1/2 tab 2x a week. I am doing pretty good with that med because i have no side effects but it seems as if im eating more. For some odd reason, i have always had my periods every month but since i been taking the meds, my period is late this month, i took a pt but it was neg., so i don't know what to expect, but if it don't come, i will be calling my endo and take the next step! But n e way hope everyone is doing well and look forward to reading new post, i will keep you posted, later!

Last edited by dazzle819 : 01-24-2011 at 12:55 AM.
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Old 01-26-2011, 08:25 PM   #129
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My prolactin finally is down to 22 which is great! So I am supposed to stay on the .5 Monday, Wednesday, and Friday. My Endocrinologist doesn't care that I am 30lbs heavier than the year before even though I am calorie counting and running 4 times a week. So I asked my regular doctor and suggested I try Phentermine for 2 months I started 2.5 weeks ago and have been able to lose 6lbs! So I don't feel so helpless about the weight now.

I had my MRI last week and will find out when I see the neurosurgeon next week if it has grown. My Goldman's field of vision test showed that my blind spot has not enlarged so that is good news too.

Just curious still what the highest dose of Dostinex people have been on, and if your Endo's tell you that you may need to stay on it for the rest of your life.
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Old 01-28-2011, 03:21 AM   #130
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Hey everyone, I forgot I posted on here a while ago...my mind has been somewhere else obviously. Well, I still don't have insurance and I've still been without medication(s) for my prolactinoma for a year and a half and it is really taking it's toll on me. I am a full time student w/ good grades and can not see a doctor! I went to my local health clinic and the financial lady had to see my papers from school (ok??) about my student loans/financial aid. She said I got too much money back from student loans last year (about 4 grand for the WHOLE year and not all at once) and I would have to pay an outrageous amount to be seen there. I've been denied medicaid about 3 times. I'm sooo frustrated!! Any advice??
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Old 02-01-2011, 04:03 PM   #131
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Natalie- My dr had me on Phentermine too. I loved it, of course. I had so much energy and it made me so thirsty I was drinking water like crazy- which is a good thing. I was on it for 3 months and lost 15lbs. Unfortunately the last time I seen the doctor she said she had to take me off of it because one of the side effects is a possible "leaky heart valve" which is also one of the possible side effects with Dostinex. We both decided it wasnt worth dieing over... My endo said most of her patients with small tumors are on the medication for 1-3 years, but from what I read on here and another site, some people are on it for alot longer. Theres another support group on a page called "daily strength" you might want to check it out.
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Old 02-13-2011, 05:15 AM   #132
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Smile medication

Kbrooke, I may be able to help you. Which med. and what dosage do you need?
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Old 02-20-2011, 04:28 PM   #133
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Default You have my empathy

I'm reading the experiences here, and it's all so sad... And I can relate to having hormone based weight issues AND how bad it stings when people look at you and just assume it's because you're lazy and eat like crap... and how heartbreaking it can be to work so hard only to NOT lose, or seem to gain it all back just by EXHALING *lol* OR to lose in ALL the WRONG places like me... I would work my *** off in the gym, only to lose weight in my FACE, arms and BOOBS, making me look like an emaciated, flat chested crackhead from the WAIST UP... From the waist down I looked exactly the same. There was a point where I got fed up with my body's lack of cooperation (which is REALLY the problem here, NOT diet or exercise) so I decided to resort to chemical warfare. Really dirty chemical warfare. I WANTED to take HCG, but the real thing is very UNaffordable and the "oral homeopathic" is (what I found out the hard way) a ton of B.S. Homeopathic is just a really fancy way of saying "watered down" and if you don't believe me, look it up. Imagine paying 20+ bucks for A DROP of real hormone suspended in 3 oz of water...especially in the name of a CHEAPER ALTERNATIVE (20$ per drop in a vial vs. 20+$ a dose of the real stuff?). Insanity. I tried it and found out that not only was it NOT working (even after taking MORE than the recommended dose a day...which is what the person whom I bought it from suggested I do if I wasn't experiencing results. I took as much as 4x the recommended dose multiple times a day everyday, and nada), but that my body was going through the same changes and symptoms that I would have if I were experiencing starvation...because, DUH, I WAS!!!. So I looked for another option that would produce results at a similar rate. I found it, and oh believe me it works...but it's VERY dangerous. And it's not for everybody. And it requires savvy to find, as I'm guessing it might not be legal considering what it took for me to find a place to get it *lol*. It's called Dinitrophenol.
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Old 03-01-2011, 12:20 AM   #134
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******UPDATE******
Hello ladies, hope everyone are doing great!! Just wanted to drop by and write an update. I have been taking Cabergoline 0.5mg, half a tab, twice a week for a month now. I went to my doctor appt. friday and she told me my prolactin level is normal its down to 11.4....Yay!!!!! So now we are going to move forward with trying to conceive. I'm so EXCITED!!! But i can't get to happy because now i want to know if this tumor is strinking! I hate MRI's!! But n e way, i guess i have to wait a year to get another MRI. Well just want to let you ladies know, don't give up on faith because, when there is a will, there is a way!! Will keep you ladies posted...later!
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Old 03-01-2011, 08:12 AM   #135
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Quote:
Originally Posted by dazzle819 View Post
******UPDATE******
Hello ladies, hope everyone are doing great!! Just wanted to drop by and write an update. I have been taking Cabergoline 0.5mg, half a tab, twice a week for a month now. I went to my doctor appt. friday and she told me my prolactin level is normal its down to 11.4....Yay!!!!! So now we are going to move forward with trying to conceive. I'm so EXCITED!!! But i can't get to happy because now i want to know if this tumor is strinking! I hate MRI's!! But n e way, i guess i have to wait a year to get another MRI. Well just want to let you ladies know, don't give up on faith because, when there is a will, there is a way!! Will keep you ladies posted...later!
Good for you!!!! Good luck conceiving, I was able to conceive twice with no problem however, that was 13 and 11 years ago and was taking parlodel because cabergoline didn't exist yet. My dr. could not believe how quickly I was able to conceive both times. She was expecting a long road but, not sure if it was the tumor meds that helped.
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