It was interesting to hear how your check up went. Ever since you wrote that note about the peeling nails - I have noticed it on my toenails! How weird. I increased my bromocriptine dose about 4 months ago and now I wonder if my prolactin is also too low and that is causing the nail thing. My endocrinologist sounds the same as yours. I have seen one on the news here where I live (Mpls/St paul MN) who has a private practice and is extremely involved in the obesity aspect of endrocrine problems. Mostly however, I have heard him speak to thyroid and diabetes so I don't know how he is with pituitary but I may give him a try and see if I get a bit more face time/ empathy/ helpful information than I get from the one at the big university medical center!
I haven't posted in a while because I haven't had much new to report. I went to my regular internist today to get some fresh prescriptions for allergy meds. He seemed to feel that seeking out another endocrinologist would be a mistake. The one I'm seeing at the University is really the only one in my city that treats pituitary tumors regularly, he claims. My doctor seemed also unalarmed by my weight concerns. He was a bit concerned that my blood pressure which is normally low, is now up a bit, but still in a very normal range. So much for the initial bromocriptine very very low pressure side effects--which clearly has gone away.
On the peeling, dry, cracking nails front--they seem to be a bit better with reducing the bromocriptine and also taking Biotin supplements from Whole Foods. I also treated myself to Barielle nail strengthener. One of the above is somehow helping, maybe all.
Weight-wise--a few people have told me I appear thinner. I now dread getting on the scale though and haven't checked, frankly. I know I haven't gained. The whole thing is draining. How about your progress?
thank god im not the only one who has a prolactinima and a weight problem here in uk its really unknown, when u say u have a prolactinima people never know what it is.
i have put on alot of weight since this was diagnosed, it doesnt help that have an 11 week old baby, i actually lost weight while pregnant as i was off the calbergoline tablets
Not sure which of the bizarre little emoticons displaying themselves as I write this apply to prolactinomas. Can you imagine what that image should be? Yikes.
I went to my 3-month check and saw a different endocrinologist although he wasn't an intern and he was a good listener. My prolactin level went from nearly zero at my last exam to 24, which he claims is good, given that they purposefully reduced my bromocriptine dose to make me ovulate again and regulate me. This has basically occurred. He emphasized that weight, particularly as I am over 40 and all that crud, would take a long time to come off. His phrase was, "whether you gain it from this prolactinoma or another person gains it from too much pizza, it still takes a long long time and a lot of effort to get rid of it." I didn't feel like he was picking on me, rather attempting me to stop beating up on myself. The orders were for me to stay the course, particularly since there has been no weight gain at all. I still find it frustrating, of course.
Also, on my shrink's suggestion, I asked about anti-depressants. This MD was against them as they would all mess with neurotransmitters in some way, as does bromocriptine.
I have my 3-month bloodwork check tomorrow morning. And it made me remember that I haven't posted at all here since my last check. Any news? Ideas? Progress? Oddly, I have met 3 women lately who all have this problem. Is it increasing in the population? Global warming?
Hi all. I read over all your posts and just wanted to say that I feel I have gained weight due to this as well. I was just recently, well I wouldn't say diagnosed but for lack of a better term, with prolactinoma. I am waiting to get the MRI done to see how bad it is which will probably be in January. My doctor has started me on bromocriptine a month ago and I still have yet to start my period. As for the weight gain I was 130 about 3 years ago and now am at 180. Actually the past month or two I think I leveled off.
Anyway I am supposed to have a follow up appointment on the 17th of this month to see how the meds are working and get the MRI setup. I am still learning about this and hoping it is the cause of the weight gain and can be reversed. (I previously thought the gain was from birth control but it didn't seem to be stopping so I was concerned.)
I would like to hear updates from all of you. Thanks
I was so glad to log on after a while and find a new post. My endocrinologist keeps insisting this is NOT such a rare problem, so I'm surprised there haven't been more posts.
You comment that your period has not yet begun after a month on bromocriptine. If it is a help I would tell you that I am now a year post diagnosis and on bromocriptine. I have only begun to lose weight in the past three months, and it's noticeable, finally, including baggy clothes. Also, my period took about 4-5 months on the bromocriptine to approach normal. When I first went to the endocrinologist they emphasized that the weight loss would be difficult because even though I didn't gain weight due to overeating, it is still just as difficult for it to go away. Bromocriptine is not the magic diet pill many websites proclaim. My nails and hair and skin are also normal now. But my advice would be to expect this to be a slow process.
I too was diagnosed with prolactinoma when I was a sophomore in college, I had a 60 lb weight gain. After trying bromocriptine (it made me very sick) and was not controling the prolactin that at times would reach in the 130's, I tried dostinex and love it. I have been on it now for 5 years and have been able to loose 50 of the 60 ten more to go though... Those are the toughest. But does anyone else notice that if you miss one or two pills you start to get big in the face (more round) I wonder why it goes to the face. If anyone would like to stay in contact, and discuss differnt things about the prolactinoma, let me know and put prolactinoma in the subject. ***Has anyone thought of using the cyber knife to have it removed**** let me know Thanks
By the way, I originally saw a regular non reproductive Endocrinologist who was very obsessed with weight and loosing the weight I had gained, I think any doctor should be, What helped me was having the prolactin controled and my endocrinologist put me on a strict diet of a 1000 calories a day, I had to doccument, and bring my list of foods every month when I had my levels checked I would weigh in he would do his checkup and then review my diet and suggest changes. AT The Time I hated it ,but I am so greatful because I truly believe I would still be struggling.
It was interesting to read your posts "muffin." I went to a checkup again last week and wound up having a prolactin count that was too low. The doctor wants it up a bit so we are ratcheting back my bromocriptine. It seems I am highly sensitive to it.
As for your query about gaining weight in the face . . . I have not noticed that but it isn't where I normally show weight gain anyway.
The verdict about my health at this checkup was that I have excellent blood pressure and weigh about 20 pounds less than when I began the bromocriptine 14 months ago. And am basically healthy except for this little, uh, brain tumor. I still want to lose about 30 more pounds.
Interestingly, while I was getting my bloodwork done, I met another patient with a prolactinoma, who has been on bromocriptine, on and off, since 1994. She said she had never met someone before me who had one. I am always surprised by the lack of support groups and other such information sharing mechanisms relating to this problem, particularly since my endocrinologist keeps telling me how NOT rare this condition is.
It was great reading all of your posts...as some of you have said, there are not many support groups out their for prolactinomas. They may not have an immediate danger to your health, but still a concern.
I am actually recovering from surgery that removed my prolactinoma last week. Searching on the computer and watching TV is all I currently do!
I was diagnosed with a prolactinoma last summer. It took about 1.5 years to find out what was wrong with me. I was constantly fatigued and did not have periods. Many other things happened from the prolactinoma....my hair falling out (or more so, breaking off as my hair dresser puts it!), fatigued, muscle aches, no period... however, my horomones only showed low LH and FSH, nothing else. Finally, my prolactin levels increased, and an MRI showed the tumor. I was put on cabergoline, however,I fainted multiple times and had orthostatic hypertension...not very good since I am on call most days becauase I work in healthcare.
After using cabergoline, I used bromocriptine. Yep, that did not work! A lot of the same issues and My prolactin went up to over 311! MRI confirmed concernable growth. So I had it taken out.
I have gained about 20 pounds, with most of the went gain in the last year. I have always been active, play soccer, and my roommate says I am a very healthy eater. Since I am 5'3, this has been very hard on my body and self image.
I meet a new endocringologist in the hospital who said that I should slowly lose this weight if I eat healthy and stay active. Gaining weight is a side affect and he was concerned about my weight. I thought I was going crazy, trying all types of different exercise classes and diets! Feels good to know there are other people out there who understand! I am feeling good and my prolactin is currently at 5.
I was diagnosed last week with a prolactinoma. I was at my OB/GYN, discussing the fact that I can't seem to drop these 30 pounds (getting married in September, so more motivated than normally...) and I had that lovely unexplainable leakage, and have never been pregnant or nursing. My prolactin levels were over 200! I have had more bloodwork done over the last 3 weeks than my entire life, and my very first MRI. I took my first dostinex last night. I am so happy to see this discussion panel, because, being 30 years old and getting married, I was crushed to hear the word 'Infertile', even though I'm told it's temporary. I couldn't find any real information about a corrilation between the tumor and having a weight problem, until I found myself here. I just wanted to introduce myself, and say thank you.
Thank you for posting and saying hello. I understand fully about all the issues and I am still amazed that more people haven't posted since my original one. I say amazed because I have met 4 women in the past 2 months who have a prolactinoma. It seems less and less rare to me all the time. I am still struggling with the weight issues. It feels daunting. Also, my bromocriptine dose has been decreased again to half a 2.5 mg. tablet, only 3 times per week because my prolactin levels are now considered too low for my age. That said, the lesser dose is messing up my menstrual cycles again. I'm hoping that will stop soon once I adjust.
One of the women I recently met who has this condition has been on Dostinex since 1998. I guess I am stuck with this for a long, long time. I hope we can post more often. Thanks for joining up.
That's actually how we caught mine, i was like, I dropped 20 - 30 pounds over a year, which in itself was like pulling teeth, but the rest is refusing to come off. So I spoke to my Gyn about it, and she was like, anything else weird? (and since I've never been pregnant or had to nurse there was that weird leaking thing...) and she ordered a whole set of bloodwork. So, a month ago I was just trying to fit into my wedding gown (5 months to go!!!) and now I have a tumer in my head.
But, I was really lucky in getting in to see a specialist, and the other symptoms she started naming were amazing, I couldn't believe that all these things were the result of this one thing.
So I am on the Cabergaline and crossing my fingers. I know it's a long process, but I'm determined.
I have had the prolactinoma since 2001, and the only thing off in my blood work has been prolactin. However the last time I went my cortisol levels were high. Have any ofyou had any expirience with this happening, I got it checked again last week and will talk to my doctor next week, but cortisol has a lot to do with weight, and I havent been able to lose any for quite some time. I am curious to see if any of you have had your other levels effected.