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Prolactinoma and weight issues

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Old 07-14-2010, 04:18 PM   #91
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I'm really glad I found this thread. I don't know anyone else with a prolactinoma, so it's hard finding someone to voice my frustrations to. I was diagnosed in Jan '09 with a prolactin level of 242 and was started on Parlodel, 2.5mg once a day. After 6 months of torture on that medication (it made me soooo sick!), my prolactin levels increased!!! Almost to 300!! My medication was increased to 2 times a day, which has lead to me breaking the pills in half and taking it 4 times a day so I don't get as sick. It's amazing that they say it doesn't relate to weight gain. Before I was diagnosed, my periods had stopped in July '08 and by September I had gained 20 lbs. I've always been in shape and was still running at least 2 miles a day then...so why else would I have gained that weight? My levels have come down a little but are still lingering around 200 now and I am now experiencing this constant fatigue! Does anyone else have that? I mean, I can wash dishes for 5 minutes and have to go sit down. It is unruly. I'd like to talk to people from this thread because this tumor is frustrating and it really pisses me off that it's still causing chaos in my body and no one I know can understand.
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Old 07-14-2010, 05:55 PM   #92
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I'm really glad I found this thread. I don't know anyone else with a prolactinoma, so it's hard finding someone to voice my frustrations to. I was diagnosed in Jan '09 with a prolactin level of 242 and was started on Parlodel, 2.5mg once a day. After 6 months of torture on that medication (it made me soooo sick!), my prolactin levels increased!!! Almost to 300!! My medication was increased to 2 times a day, which has lead to me breaking the pills in half and taking it 4 times a day so I don't get as sick. It's amazing that they say it doesn't relate to weight gain. Before I was diagnosed, my periods had stopped in July '08 and by September I had gained 20 lbs. I've always been in shape and was still running at least 2 miles a day then...so why else would I have gained that weight? My levels have come down a little but are still lingering around 200 now and I am now experiencing this constant fatigue! Does anyone else have that? I mean, I can wash dishes for 5 minutes and have to go sit down. It is unruly. I'd like to talk to people from this thread because this tumor is frustrating and it really pisses me off that it's still causing chaos in my body and no one I know can understand.
Yup i agree.. like humm everyone seems to gain weight.. so how can it not relate?!!! Wow.. really!!! It's annoying when the Dr.s' dont listen or pay attention to the weight. I've never heard of the meds your on. My levels went up 20 in less than a week... I hope they have gone down now that i'm on the cabergoline. However, I KNOW my weight hasnt.

I'm not as tired as i used to be. I used to just wanna sit there. I'm thinking of calling my insurance and seeing if a nutritionist is covered. I'm sure they cover it for diabetics....why not this?.....oh wait cause 75% say it's not due to prolatinoma?
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Old 07-20-2010, 03:58 PM   #93
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Hello! I finally gave in and created a new account I can't get my old one to work... I previously was muffinl.

I have been dealing with my prolactinoma for almost 10 years wow it doesn't seem that long! Anyways everything was good I was on .5 dostinex mon and fridays, and had even lost my 60lbs.
This last year I started gaining weight again, eventhough I was runnin 2-3 miles a day, and went to the doctor in november and my prolactin was back up. The MRI showed no changes in the tumor size. So the doctor doubled the dose... it did not work so he added a day so now I am up to 3 mgs a week, we are going to have to raise it again because they are still not back down. Has anyone had this occur? Everything was going great and then it decided to act up!
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Old 07-27-2010, 02:54 AM   #94
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hi everyone. just an update on my progress so far-i have been on dostinex for almost 2 months and have noticed slow and subtle changes like the feeling of constant bloating has diminished. I have lost 3 lbs which to me still doesnt seem right in relation to how hard i am dieting and working out. i used to be able to drop that in a couple days if i wanted to. I think that one of the most important things for all of us to remember is to always listen to our bodies because WE know when something is off. I wish there were more answers out there for us but I guess its good that we are raising awareness and supporting each other!!
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Old 07-28-2010, 12:58 AM   #95
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I was diagnosed with prolactinoma last april, the doctor put me on dostinex for 3 months and my period went back to normal, my prolactinoma level dropped to normal, and i went back to weightiing my regular 140 lbs. This january 2010 i started taking birth control, i then read that birth control makes the prolactinoma lebel rise up so i stopped about two months ago. I have not had a period, i have gained 30 lbs, and i dont have my insurance no more to go to the doctor. I am extreamely fustrated and feel really depressed with all this weight gained, I just need someone to talk to that understands. All my friends just think I am getting fat, i feel soooooo ugly!!
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Old 07-28-2010, 01:03 AM   #96
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THE SAME THING HAPPENS TO ME! i lost like 3 lbs in a week.. went out and bam! right back up again. i take cabergoline
The first time they put me on dostinex, i took like 4 to 5 months for me to loose the 30 lbs i had gained. So stay strong
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Old 07-28-2010, 01:09 AM   #97
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I too have a Prolactinoma (micro adenoma) and unfortunately, first time around 5 years ago, I had a negative reaction to Bromocriptine, which is only one of two medications I know of to shrink the tumour.

My biggest concern though, was the weight gain I have experienced, along with the course hair growth I have grown out of nowhere on my chin, side-burns and chest! Being a 34e year old woman, I have found this most embarassing and my self-esteem ahs sufferred greatly.

I hardly eat, and yet my weight has become a problem for me. I used to be an Australian size 10 to 12, and I am now a size 16!

The worst thing of all is that even though one can lower testosterone levels and lower Prolactin (both my levels are up and down), appreantly the hair follicles "remember" the growth, and regardless of the "evening out" of ones hormones; the course hair continues to grow. Has anyone else had this problem with weight gain and hair growth too?

I lost my last baby at 21 weeks, and I have been researching the prolcatinoma and its' affect on pregnancy...and I was suprised to note that high prolactin releases Oxytocin - the chemical that brings on contractions in a pregnant woman! Does anyone feel that this could've been the reason I had 2 very premature births for my first two kids, and lost the third child?? Your thoughts?
i was told by my doctor that due to the prolactinoma i will have a really hard time getting pregnant, and if i do the chances of going through the whole pregnancy is really low. And the hair yes is really embarrasing, I am 21 i bounce from a size 5-10, and my prolactinoma never seems to be controlled. I have facial hair, i have had hair on my chest, its just horrible!!! i really understand how you feel and I am so glad to finally find somewhere where there is girls with the same problem.
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Old 07-28-2010, 01:12 AM   #98
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My prolactin level is down to 7.4!!! Woo hoo! I'm supposed to stay on 5 mg of Bromocriptine for another 2 months and be rechecked and have an mri in Dec. to check the status of my pituitary gland
hi kelly, i will love to know how you are doing?
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Old 08-06-2010, 09:16 PM   #99
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Hi all,

I just ran across this forum and am happy to read about other people dealing with prolactinomas. I was diagnosed in 2007 by "accident." I had an MRI for another problem and they found it. They did bloodwork and at that point my prolactin levels were in the 70s, but I had no symptoms. After 8 weeks on cabergoline my levels went down to 2. My doctor took me off in January 2009 and my levels slowly rose a few months later. I had a 6 month check-up this past Monday and I knew it wasn't going to be good. I gained 7 pounds in 3 months, had horrible mood swings, and just pretty much was not a very pleasant person to be around. My levels were in the 90s and since Monday I am back on cabergoline for at least 2 years according to my doctor.

Does anyone remember what it felt like to be you before the prolactinoma? I miss the days when I was 20 pounds lighter and didn't have mood swings.
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Old 08-08-2010, 08:56 AM   #100
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i was told by my doctor that due to the prolactinoma i will have a really hard time getting pregnant, and if i do the chances of going through the whole pregnancy is really low. And the hair yes is really embarrasing, I am 21 i bounce from a size 5-10, and my prolactinoma never seems to be controlled. I have facial hair, i have had hair on my chest, its just horrible!!! i really understand how you feel and I am so glad to finally find somewhere where there is girls with the same problem.
Hi Cinthia,
i cant remember the statistics they told me of the chances of me actually getting pregnant were, but the week after "that" conversation, i went to the doctor and suprised them with the news that i had a 'positive' pregnancy test. ( we had been trying on and off for nearly 2 years, was told it wasn't going to happen. and hey the one day we did it (that i actually felt like i could) not expecting anything. voila!!

they then proceeded with all the " it wont be a 'viable' pregnancy, and not to get to 'attached' as i probably wont make it full term". and their comforting "you may not make it to the next trimester" talk at each drs visit. (yay thats realy what you want to hear from a dr.... )

but hey, i now have a ten month old little boy who is happy and healthy. and was delivered normally ( or as normal as one of my births get - but thats another story lol) at a reasonable due date,it was early, but that was due to my births.
so i think each person and pregnancy is different. i cant say my good news will be the same for everyone, but we can hope....

so what i suppose i am trying to say is try and stay positive. They may be doctors, but they can't see anything past their text book sometimes. look at us with our 'irrelevant' weight gain for example.

and as for the extra hair, i get it on my chest, but the ones that irritate me are the inch long couple that keep sprouting from my throat. i have found out, but am yet to get there, that laser removal is good for removing them, and because it is only a few stray hairs you dont need multiple treatments. as for my 'hairy top lip' i just get it waxed every 2 weeks along with my eyebrows..... things women do to feel good???

so take care.
as usual my thoughts are with everyone,
stay strong, and as a combined group together we will get through it.

natalie


**oh by the way, i have lost about 15 kgs and 2 dress sizes. on 0.5mg dostinex 2 times a week since 3rd march 2010. seems to be working... so far...****

Last edited by prinny p : 08-08-2010 at 09:09 AM.
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Old 08-09-2010, 03:03 AM   #101
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Hello all,

I am the person who began this thread/topic but I do not get on to this site often. I just read the past months of posts and I realized I need to be on here actively.

I just went to my endo on Friday due to the fact that the pituitary issues began to affect my thyroid function in this past year. I was doing well on the bromocriptine, but then my levels went back up, though not super high. I was put on Synthroid, which has caused me to gain more weight and balloon in pregnant-esque fashion. After complaining about this to the doctor, I researched Synthroid and found that weight gain is a common, and often complained about, side effect. I begged and pleaded and begged and got the doctor to switch me to Armour. I just took it for the first time today.

For any of you who have posted who are saying that your doctors do not believe weight gain and prolactinomas are related, please consider seeing another doctor. It is the number one symptom and my doctor certainly agrees. Further, the pituitary gland and the thyroid's functions are co-dependent. So, if you haven't had your thyroid tested, you should.

More soon, for real.
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Old 08-22-2010, 11:16 PM   #102
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hello girls just updating, i was in the icu because my tumor was bleeding, now i dont onlt take dostinex, they a.so have me on steroids for my brain to swell down, therefor my weight is going up. Only good news i have is that my prolactinoma level is 125, so it has lowered some. my neuro said that if that tumor dont get smaller and that if it bleeds anymore i will have to go throough surgery. My question for yal is, HAVE ANYONE HAD THE SURGERY? if so how was your after results?
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Old 08-30-2010, 10:48 AM   #103
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hi all.
just a quick update.
i went to my appointment last wednesday. according to dr i dont need to come back for a visit until oct next year. ( i don't know if this is a good thing or not)
it seems my levels are 'regular' on dostinex, and he is happy with the quantity i am to take. i am still getting the headaches, etc but he still isn't worried about that.
one thing i need to do before then is to get an ecg done. has any one else had this done.
apparently 'dostinex' is also used to treat parkinsons... and in larger doses in older people can cause leaky heart valve.....so they are woried that smaller doses in younger peolpe may have the same affect.
any one else heard this???

thanks
natalie.
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Old 09-12-2010, 07:19 PM   #104
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Hey. I have just been diagnosed with a prolactinoma. Was having some strange symptoms and went for OB/GYN check up, long story short...after an MRI they found the tumor and I've been referred to endocrinologist. Very nervous about the whole thing and trying to find as much info as possible.
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Old 09-13-2010, 11:46 AM   #105
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Hi everyone and welcom Shaunabee7. I thought I would post a quick update, I go to my endo next week, I am thinking things haven't changed much, after the original 60lb wait gain (when I first got the tumor), then losing it allwhen I got regulated. Fast forward to now that the prolactin counts are back up I am at a 23lb gain. I am so frustruated, my cup size has gone from a B to a D and nothing fits!

I wanted to ask again, has anyone had their prolactin go high again, after years of being controled 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 used to joke that if I had to have a tumor this was the best kind to have... now I am so frustruated... its driving me crazy .
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