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Prolactinoma and weight issues

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Old 05-14-2008, 10:30 AM   #31
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Default Another Newbie

Hi All

Glad to have found this thread. I too have a prolactinoma. I have been on Cabergoline for the past year. Today I found out that my tumour has reduced in size by 2mm. Cabergoline has been a good drug for me but I am very tired alot and normally I am high energy.

I had a sudden weight gain of 8 pounds in a matter of 2months. I worked really hard about 3 years ago and lost 35 pounds. I gained back 6 and have been stable until recently so I was upset to gain. And I am not losing it.

It does not help that I am not exercising at present - am just too shattered.

So thats my story! I look forward to seeing how people are doing here.

Sarah
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Old 05-20-2008, 10:02 AM   #32
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Hi Sarah!
I too have always struggled with the weight thing for many years. What's really frustrating for me is that we can't tell how much of it is related to the prolactinoma. And, if that's the case, how long ago could I have dealt with the thing and have been thinner?! I could have spent my 20s with bikinis! Or at least some hot jeans!!!
Don't give up, and treat yourself well.
30 more pounds to go for me... I think about it all the time.
Anna
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Old 09-13-2008, 12:00 AM   #33
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Default Prolactin update

Hello,
No one has posted in a while, including me. I had a 6 mo. checkup today and discovered my prolactin level is nearly 20, which is up from 1.2 and thus the doctors are happy with it. I discovered I weigh a few more pounds than at my last visit, although still about 15 less than when this whole cruddy condition was diagnosed in Jan 2007.

Unlike some of you who have posted, these doctors, and today 3 interns, do not find the weight issue alarming. They sympathize with me, and tell me it's hard and to give myself a break since hormones wreak havoc on the body. They are putting me on low-dose birth control pills, insisting it won't affect the weight and could even help because it will even out my fluctuating levels.

I am curious to hear other posters' news . . .
Thanks , mg
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Old 09-27-2008, 12:57 AM   #34
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Default Long time

Hi - It's been a long time since I've been on - lost 20 and gained back 10. Very frustrating. Haven't been to a check up in four years and am finally set up with a new Doctor who I hope will spend more than 60 seconds with me! Have gained 60 lbs since my dx in 1997 but this is my second time around. I had mine removed in 1981 and immediately lost all 25 lbs I had gained that time. Unfortunately, I guess they frequently come back and this time they won't take it out surgically. Too risky to do twice. What aggrevates me is not knowing if it is the tumor or the medication that causes the weight gain!? I'm interested to see what a new Dr. says as my old one would never take time to even comment on my prolactin tests or any discussion on meds. I wasn't even aware that there was anything other than bromocriptine - and I despise it!! I have taken it for 10 years and it has been eating my stomach and esophagus. Hoping to get on something with milder side effects.
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Old 02-11-2009, 09:54 PM   #35
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Hello Everyone! I am so glad I found this site. I have been going through what seems like a whirlwind for the past year. Today will be the first day I will be taking Dostinex or Cabergoline (I think they are the same thing). Two days ago I had an MRI and it came back that I have a pituitary adenoma or whatever it is called.

Back in August I had been having irregular periods (however ever since I was about 15 they have never been really regular) and I thought it was due to the fact that I had started a different birth control (Yaz instead of Yazmin) which I had been on for at least 5 or 6 years. I was gaining a significant amount of weight and I wasn't really doing anything that different. I had noticed I was eating a little more, however I'm at the gym at 530am three or 4 days out of the week and I eat healthier than almost everyone i know.

So naturally my first intuition was that I was pregnant, but I had taken a few pregnancy tests at home and they were negative, so finally in August I told my OBGYN and they tested me for prolactin along with my thyroid, but prolactin was at 34 which they were not worried about. They I stopped taking all birth control and come January...still had not gotten my period and then that is when i noticed I was lactating (not cute!). I went in and after blood tests my prolactin levels were then at 172 (137 higher thanit was 6 months prior).

Anyways I don't really know anything about this other than the fact that no one around me knows what it is or has heard of it and seems to think its not a big deal so I am really glad to have found this as a way to ask question and gain some knowledge. Does anyone know if going from 34 to 172 in 6 months is normal for this or bad? Should I get a second opinion or be referred to an endocrynologist? Has anyone had success having children with this? I am 26 and want children more than anything so this is the most devestating part.

Obviosly the weight loss thing is an issue as well (20lbs heavier), but it seems after reading the posts that no one is really sure if the weight came on as a cause of the high prolactin levels, but people are not having the results they had thought from the medication.

Any news or advice is helpful! I feel like everyone around me just thinks I'm being a drama queen.
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Old 03-16-2009, 11:59 PM   #36
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Wow maybe I should have looked my issue up years ago. I was diagnosed with a prolactinoma in November of 2006 after over 5 years of doctors telling me that the secretion of breast milk was in no way possible unless I was still nursing. 5 different doctors thought it was all in my head.

Come to find out, they were all right but didnt even know it... Before my diagnosis I went from 105 lbs to 130. That was no big deal, I finally looked healthy. But once I was diagnosed and began taking bromocriptine and oral contraceptives. in the 4 months that I took the medicine went to 160 lbs. I was continuing my normal exersize and with the nausea from the bromocriptine, didnt have much of a choice but to eat several small meals daily, which is good for weight loss.

Well in March of 2007 my insurance carrier at work changed and my meds went from $10 to $190 monthly. Unfortunately I cannot afford such a dramatic increase, so I elected to quit taking the medicine. Within just a few months, following my normal routine with the exception of returning to 3 larger meals a day I returned to 140 lbs. I have not been able to drop the last 10 lbs in the last 18 months, but should be happy that i am no longer gaining.

Under no circumstances am i saying to stop your medication. I stopped only due to financial issues, but in the same breath must tell you that due to the same change in insurance I have been unable to afford the trip to the endocronologist or the radiologist department for another MRI (still question why i pay the premium on the insurance, it covers literally nothing) But i do believe that the prolactinoma and bromocriptine (possibly even the contraceptives) contributed to my sudden weight gain.

I have decided to live with the realization that i will have a very annoying issue with secreting milk, and even though i secrete, cannot get pregnant. But one advantage that i see in it, is i also do not mentruate(maybe i am just selfish) It is just another fact of life, 100 years ago I would have been unable to do anything about it. I know the possibilty of reducing my bone density so try to exersize daily and have a high intake of calcium and vitamin D.

Hope this helps someone, or if you would just like to talk I will be around now that i found this forum.

Have a great day!
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Old 03-23-2009, 05:09 AM   #37
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Default Diagnosed 1996

Hello

I just found this board today - sure wish I had found a support board way back when I was first diagnosed! Is this one still active? I would love to discuss various treatments by others and share what I have learned in the last 12 1/2 years.

Thanks!
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Old 03-30-2009, 08:22 AM   #38
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Talking Still here

Well...I don't know about everyone else, but I am still active on this post. I have not given an update since I first wrote, but after onlya month on cabergoline my prolactin levels are back to normal at 5. I finally got menstrual cycle that month and I have taken up "The Clean Eating Diet" and lost 9 lbs (this morning) over the last 2 in a half weeks.

I hope this gives hope to everyone that I feel great! I will continue on the .5 mg of cabergoline for the next year and go back to get another MRI.

I would love to hear how everyone else is doing.
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Old 04-06-2009, 12:57 AM   #39
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Hello,
I am the person who started this threat but I haven't posted in a long time. My update is small at this point--I had a six month checkup appointment with the endocrinologist last week. My prolactin and blood pressure were great, and they were happy with my results with the low dose birth control pills. I was dismayed that I'd only lost 3 more pounds. The doctor was amazed that I weigh as much as I do and said he would have guessed 25 pounds or so lighter, by my appearance. He scheduled a blood sugar and insulin test for me, though, and I will have results on that soon.

For "turtleange" . . . I find your story very sad and I wish I could help. I wonder if you are aware that bromocriptine is a generic drug, though. At my local pharmacy, it's only $8 a month, with or without insurance. Is that a possibility for you?

I will post again. I wish more of us did, more often, myself included.

How is everyone else?
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Old 04-06-2009, 10:54 PM   #40
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I am still here... Nothing much has changed for me. I am still taking the cabergoline (generic dostinex) I was so happy when it finally went generic... I now pay 20 for 3months compared to 130! I do not get my blood checked but once a year... just because I hate needles and I take my meds regularly and have no symptoms... I have been on the bc pill for about 8 years because of the tumor... but this month I am going off of it to see if I can have a regular cycle.. we will see I am not trying to get pregnant (actually I just got out of a long term relationship)just trying to see how my cycles are with out the pill.. I have dropped from my 199 at my highest post tumor from a 130 pre tumor. to 140! I am 5lbs away from my goal though I am happy with what I look like now. I hope everyone else is doing well.
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Old 04-07-2009, 06:10 PM   #41
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Hello Everyone! It's so nice to see that I am not the only one with a weight issue due to my Prolactinomas. I was diagnosed in 2000 after 2 years of no period, depression, low libdo, hot flashes. After I gave birth to my son I tried to breast feed but he wouldn't take. My breast kept producing milk for 2 years. I finally was fed up with my doctor telling me there was nothing wrong I just need to let my milk dry up. I demanded him to check my thyroid. When the test results came back he said my thyroid was normal but, he also checked my prolactin levels. It was at 369. I then was diagnosed with having a microprolactinomas & PCOS. I have since then been put on Dostinex and it is now a normal 17. I only gained 12 pounds while I was pregnant with my son but, I gained 65 pounds 8 months afterwards. I eat very healthy and very little. I have been to 8 different doctors telling me I am just FAT and my pituitary problem has nothing to do with my weight gain. Over the past years I have gained another 35 pounds ontop of the 65 which I am now a little over 100 pounds overweight. I have done much research online and spoken to Naturalpathic doctors both stating your thyroid and pituitary go hand and hand. I have fatigue and extremly bad trouble with losing weight. My doctor won't put me on thyroid meds because he states it normal but I KNOW it's not. I am going to have to out pocket money to see a Naturalpathic doctor to get a low dose of natural thyroid.

Has anyone else had problems with their doctors telling them that your weight gain has nothing to do with your pituitary disorder? And your Thyroid is normal but, you continue to gain more weight?
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Old 04-13-2009, 08:57 AM   #42
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Red face Response to the weight gain question

I'm sorry you are going through that, it must be awful to hear that from a doctor. I can't speak for everyone, but I can directly correlate my weight gain with the prolactinoma. Not 100 pounds, but about 25-30 and I think the fact that I was getting frustrated so I just went to the gym more and ate less and less, was the reason I only gained that much. It's very frustrating, but hang in there....really do what you can, and if you're taking medication for the pituitary tumor now and symptoms are gone then the weight will progressively come off....

The frustrating thing is that it will not come off just doing nothing...and that's where you will need the motivation to continue eating healthy, building your metabolism back up, and working out.

My OBGYN flat out told me that the weight gain was due to the prolactinoma, and was very supportive of me knowing that, so I would suggest a new doctor maybe...again...sorry that you are going through that.
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Old 04-18-2009, 12:34 AM   #43
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Default Also, sorry to hear that

Hi,
My heart goes out to you. I also am sorry to hear that a doctor has said your weight issues are unrelated to the pituitary tumor. OF COURSE they are related. I would also suggest you see another endocrinologist. I have to say that my endocrinologist was recently rated as one of the top ten in the U.S. and he has always told me weight gain is one of the first symptoms of this disease. I have only lost some of my prolactinoma weight so he tested my insulin last week but I am still awaiting the results. I will post when I hear more. In the meantime, stop assailing yourself--your doctor is incorrect.
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Old 04-20-2009, 09:14 PM   #44
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Quote:
Originally Posted by asestina View Post
For "turtleange" . . . I find your story very sad and I wish I could help. I wonder if you are aware that bromocriptine is a generic drug, though. At my local pharmacy, it's only $8 a month, with or without insurance. Is that a possibility for you?
Where did you find this at if you dont mind, i am always given prices ranging from 150 to 180 for the bromocriptine and birth control upwards of 50 always
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Old 06-17-2009, 01:49 AM   #45
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I am relieved to have found this website.

I am sooo frustrated that I could scream!! I've been telling every doctor for 20 years that I'm lactating. I haven't had a period in many years, and my gyn was never concerned. By accident, a 9mm prolactinoma was discovered on MRI. I thought that maybe that was why I've struggled with weight and want to sleep all the time and had thinning hair and no energy and headaches. Now my doctors say that the prolactinoma has nothing to do with those symptoms, and my thyroid tests are all normal.

I started on bromocriptine. I'm hoping that some of these issues are related and will reduce after awhile.
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