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Prolactinoma and weight issues

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Old 03-01-2011, 10:20 AM   #136
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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.
Hi girls, I am always glad to hear that people are able to conceive! I am not ready to have a child yet but want to in the future.
My questions for are:
-When you get pregnant, do you have to go off of the medication?
-How often are they monitoring your levels if they do?
-Did your physician require MRIs before getting pregnant or during?
-After Pregnancy did your tumor change at all?
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Old 03-01-2011, 11:33 AM   #137
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Hi girls, I am always glad to hear that people are able to conceive! I am not ready to have a child yet but want to in the future.
My questions for are:
-When you get pregnant, do you have to go off of the medication?
-How often are they monitoring your levels if they do?
-Did your physician require MRIs before getting pregnant or during?
-After Pregnancy did your tumor change at all?
Not sure about everyone else but I was diagnosed when I was 23 and I am 40 now. Gave birth at 27 and 29 both planned pregnancies and dr's where aware I was trying. My endo saw me every 3 months in addition to ob/gyn visits. At the time I was on parlodel not dostinex (cabergoline). With my first I was very sick to my stomach in the beginning figured it was due to pregnancy. My endo took me off parlodel in my first 6 weeks of pregnancy. I felt 100% better then started to get migrains about 3 months in and endo put me back on my tumor meds and I started getting sick again so she had me go off of it. With my second pregnancy as soon as it was confirmed I was pregnant endo took me off meds and I had no morning sickness again once I went off. I never needed an MRI during pregnancy had one after I was done nursing both times. My milk production was ridiculous but that's the nature of the beast. Again, I think most people including myself take cabergoline now so not sure how that may differ with pregnancy. I don't think pregnancy changed my tumor but it is barely noticable on MRI now and my prolactin levels hover around 20-50. Good luck it is a very livable condition.
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Old 03-01-2011, 10:04 PM   #138
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I have been trying to reply to u SJMS71, but for some reason it keep saying im trying to post a link, 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. I wish you the best also and i will keep you ladies posted. Lata'
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Old 03-01-2011, 10:20 PM   #139
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I have been trying to reply to u SJMS71, but for some reason it keep saying im trying to post a link, 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. I wish you the best also and i will keep you ladies posted. Lata'
For me being diagnosed was a blessing cause I started having some unexplainable health issues when I was 18 and I knew something wasn't right. Many test and doctors later I was diagnosed with a pit tumor at 23. Good luck and do keep us posted.
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Old 03-03-2011, 11:38 AM   #140
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Default Thank you all!

First just wanted to say this forum is great. I've learned a lot. Second just wanted to say you all are beautiful no matter how much weight you've gained. Plus, you all are special. Weight doesn't make the person, your personality, character and integrity does. My boyfriend has macroprolactinoma and he didn't have increased weight until beginning his medication (Bromocriptine). I can honestly say that all I see is the wonderful person that he is and I wouldn't trade him for a Brad Pitt, Ryan Reynolds, or any other actor/model/singer, etc that superficial vain people categorize as beautiful. Beauty is indeed in the eye of the beholder and I KNOW my guy is one in a million. Just know that all of you are also ONE in a million.
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Old 03-04-2011, 10:02 PM   #141
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Thank you (sjms71).....and i will!
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Old 03-05-2011, 06:36 AM   #142
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Smile There is hope!

Hello,
I was diagnosed with prolactinoma in August of 2010. The adenoma is

small but boy did it wreak havoc with my body. I gained upwards of 30

pounds

and appeared to be 6-8 months pregnant at times with cravings and all.

For those of you just diagnosed, I just want to say there is hope for your

weight gain. I was just told with my last round of blood work (about 2

weeks ago) that my prolactin level is normal. The doctor stepped my

cabergoline dosage up gradually and is now beginning to work on stepping it

back down.

I have lost about 16 pounds in the last 2-3 months and am getting my nicer

figure back.

I don't know if the medicine helps to shrink the tumor or not. I am scheduled

for another MRI in August which, will make it around the anniversary of my

diagnosis, and will find out then.

I hope this helps you and all the rest who read it!
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Old 03-05-2011, 06:28 PM   #143
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Default New member..Pituitary Tumor!

I am thrilled to have found this site. I was diagnosed with a pituitary tumor in may of 2010 at the age of 20. After lactation I went for a check up and I had prolactin levels of just 53 which my doctor was not to interested in, so I was told to get an MRI. After my MRI I was told my tumor was just 3mm. I was put on Cabergoline and have been on it for about 6 months and have a few side effects. Random times of nausea, and some mild head aches. I have not suffered from weight gain that much but am concerned about that. I was also told that I would have a hard time starting a family, which was very hard to take in. I have been a relationship for about 6 years, and plan to get married and start a family in about 3-4 years. Has anybody had trouble getting pregnant? and my doctor informed me that i will have to swith to the other med Bro something? I heard those side effects are horrible and am not looking forward to switching when trying to start a family? is there any known reason as to why you have to switch? My doctor is not to good about keeping me informed! I went back to get my blood tested a week ago and my levels were down to 7.11!! I was so excited until my doctor told me I would have to be on this medicine for the rest of my life. Any idea why? I go for an MRI July 1 and am curious to see how the tumor looks! My main concern is having children, my dream! I am so glad that I found others that I can try and get answers from and reach out too!

Sarah!
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Old 03-05-2011, 10:42 PM   #144
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I am thrilled to have found this site. I was diagnosed with a pituitary tumor in may of 2010 at the age of 20. After lactation I went for a check up and I had prolactin levels of just 53 which my doctor was not to interested in, so I was told to get an MRI. After my MRI I was told my tumor was just 3mm. I was put on Cabergoline and have been on it for about 6 months and have a few side effects. Random times of nausea, and some mild head aches. I have not suffered from weight gain that much but am concerned about that. I was also told that I would have a hard time starting a family, which was very hard to take in. I have been a relationship for about 6 years, and plan to get married and start a family in about 3-4 years. Has anybody had trouble getting pregnant? and my doctor informed me that i will have to swith to the other med Bro something? I heard those side effects are horrible and am not looking forward to switching when trying to start a family? is there any known reason as to why you have to switch? My doctor is not to good about keeping me informed! I went back to get my blood tested a week ago and my levels were down to 7.11!! I was so excited until my doctor told me I would have to be on this medicine for the rest of my life. Any idea why? I go for an MRI July 1 and am curious to see how the tumor looks! My main concern is having children, my dream! I am so glad that I found others that I can try and get answers from and reach out too!

Sarah!
Hey Sarah, Try not to stress about getting pregnant it will only make the situation worse for you. I was on parlodel (bromocriptine) for years because cabergoline wan't out yet. I had horrible side effects always felt sick made my nose stuffed up at night. After I got married my gyn basically told me I would probably have a hard time getting pregnant and start tracking everything because she didn't want to see me until we had been trying for 9 months. Well, I got pregnant the first month. Second pregnancy the same went to the dr. for a check up and to let her know we wanted to try for our second and she informed me it wouldn't happen as quickly the second time. Well, it did, that was 13 and 11 years ago. Not sure if the bromocriptine helped me be more fertil or what but I know me getting pregnant both times was a blessing. The side effects I hated on parlodel however, worth it if that was what helped me. Good luck I am living proof it's not a lost cause .
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Old 03-09-2011, 10:01 PM   #145
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***Sfast***

Hello! I have a microadenoma also. I have been going back and forth to my Fertility Dr. and my Endo trying to get my levels down and get pregnant. They told me that my prolactin malfunction can cause infertility, so now i am taking cabergoline and i just started on clomid to. Hopefully i will become pregnant soon. My prolactin level is down to normal so hopefully this clomid will help me do the trick, but its kinda scary to me taking both meds, but i guess the doc's know what they are doing. Bromocriptine is definitely a NO for me!! It cause me to not sleep at night because i couldn't hardly breathe through my nose, so yes, the side effects are horrible. But I hope everything work out for you and me both so we can have a BFP!!! =) Good Luck and I will keep you ladies posted!

SN: Endo apptmnt 3-11, wish me luck!!
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Old 03-10-2011, 01:04 AM   #146
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I was diagnosed in 1998 and tried bromocriptine but decided that breast leakage was better than the side effects so I quit. I decided to get pregant in 2001 and the doctor put me on cabergoline. We had to do IVF to get pregnant since my husband was sterile from chemo but I got pregnant the first try at IVF. A bonus of this condition is I had no trouble breastfeeding!!! However, after failing to lose weight after much trying and a bout with mastitis 2 years after stopping breastfeeding, I decided to try cabergoline again. I immediately started losing weight. The endo who prescribed the cabergoline had also mentioned if I decided to get pregnant, I should switch to bromocriptine but I didn't ask about this as I wasn't intending to have another child anytime soon. But life changes and I decided to get pregnant again 8 months after starting. Since I had my first child on cabergoline with no ill effects, I decided to ignore the endo's advice. I also asked the fertility clinic if I needed to switch and they didn't think so, so I didn't check into the reasons why it was recommended to switch. Anyway, I kept using cabergoline and after first try with frozen embryos I am pregnant on twins!!! As long as your prolactin is low enough to allow you to ovulate, you should be able to get pregnant (if you or your partner have no other underlying conditions). Hope this info helps some of you. Don't give up hope of having a family if that is what you want.
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Old 03-14-2011, 02:08 AM   #147
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****Clang****

Thank you so much for the encouraging words! I do have faith that it will happen soon, my level is down to normal 11.4, so hopefully we will become preggo soon! We both got good lab work back with no other conditions other than my tumor so hopefully things will work out fine. I did start and finish my first round of clomid, apptmnt with OB 3-15, for midcycle ultrasound, wish me luck. I will keep you ladies posted and i hope you all levels are coming down to normal also. Good luck!!
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Old 03-15-2011, 06:57 PM   #148
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When I was diagnosed, my endo told me that I would probably have to be on Cabergoline for 1 year to 18 months. She said given her past experience with former patients, the dopamine would eventually destroy the tumor. I have been following this link and a few others for a couple of months. More and more I am reading that people have these tumors for years and years. Is this something I'm stuck with? Has anyone heard of instances were someone was eventually "cured" (besides having surgery).
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Old 03-20-2011, 09:09 PM   #149
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***Sfast***

Hello! I have a microadenoma also. I have been going back and forth to my Fertility Dr. and my Endo trying to get my levels down and get pregnant. They told me that my prolactin malfunction can cause infertility, so now i am taking cabergoline and i just started on clomid to. Hopefully i will become pregnant soon. My prolactin level is down to normal so hopefully this clomid will help me do the trick, but its kinda scary to me taking both meds, but i guess the doc's know what they are doing. Bromocriptine is definitely a NO for me!! It cause me to not sleep at night because i couldn't hardly breathe through my nose, so yes, the side effects are horrible. But I hope everything work out for you and me both so we can have a BFP!!! =) Good Luck and I will keep you ladies posted!

SN: Endo apptmnt 3-11, wish me luck!!
That was the worse side effect of Parlodel (bromocriptine) not being able to breath at night. My nose would be so stuffy, ugh. But that is the only thing that existed back then. Good luck!
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Old 03-21-2011, 11:58 PM   #150
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Hi S1Shine, I was diagnosed at 20 I started on Bromocriptine, but do to the constant sick feeling and vomiting I switched to dostinex (cabergoline). Which was a blessing! I am now 29, the tumor is still going strong, if I miss a dose my prolactin goes up. So some of the tumors are very persistent, hopefully yours will shrink! My neuro surgeon said that sometimes they just burn out. Mine actually last year started defeating the medicine and I had to up the dose from .25 twice a week to .5 three times a week.
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