[maybebaby2007]

I was diagnosed with a macroadenoma (12.5 mm) 7 years ago. It has been a microadenoma (smaller 3.5 mm or less) for 5 years. My prolactin levels have been normal (<25) for 5 years. Does anyone have success stories with hyperprolactinemia?

[Andi]

I also have a prolactinoma that I was diagnosed with about a year ago. Mine is a microadenoma. I have been ttc for about a year and a half. I have not yet been successful and I am also looking for those who may have had success. My levels in March were 29.7 so I upped my dosage of Bromocriptine and had a blood test last week. I am still awaiting those results. I hope that you are able to conceive!!! It would be nice if you were the success responding to me.

[Anastasia]

I also have hyper prolactinoma, but mine is not super severe. I have been on bromocriptine for 10 mo and my levels have remained around 4-5. They think that my levels are stable and have taken me off for 2 weeks to see if they remain low. Of course, even though my levels are low and I am O'ing, no success here. Good luck to you.

[Kris]

I am new to this site and I guess just need to know that I am not the only one going through this.....
Husband and I have been ttc for 1.5 years now. I am 28, and was diagnosed with a pituitary microadenoma when I was 17. I started off on Bromocriptine, switched to Dostinex and was on that for nine years, tried Chasteberry for nearly 3 months, and have most recently been taking Bromo. again. I am on the highest dosage I have been on (10 mg a day) and my prolactin level will just not go down....it was most recently at 34.7, still too high! I am seeing an ob-gyn for the time being, and I think even he is at a loss now. He would now like me to have another MRI to see if my tumor has changed at all, since the Bromo. doesn't seem to help. Anyone in a similar situation?

[Andi]

My situation is different, however I would strongly recommend that you see an endocrinologist instead. I had an obgyn tell me that I didn't even need meds... I went to the endo and she had a better understanding of what was going on. You may be the only patient that your obgyn sees with a prolactinoma, at least that is what the research is showing me. Have you ever tried cabergoline? I hear that it is a good choice if bromo isn't working for you. Hang in there... and

[Andi]

Success then disappointment. I did conceive this past cylce and miscarried yesterday. It did show me that I could conceive...(on a positive note). Will this emotional roller coaster ever slow down? Anyway, there is some hope for conception with prolactinomas.

[mizgee]

I also have a Prolactinoma and recently joined this forum. I am new here and I am looking for some success stories as well. I am TTC and no success yet. It has been 2 years. I am taking Bromocriptine and AF has not been regulated yet. I am just looking for some hope. I am so tired of disappointment and I feel as if some success stories would really make this easier for me.

[sami]

I have a prolactinoma. It was diagnosed this past spring, and I was started on Cabergoline (dostinex). After several months on an initial dose, my doctor doubled my medication, and I had a cycle. I couldn't believe that I actually bled for the first time in a year and a half. I didn't bleed again, and I assumed there was something else wrong because my prolactin levels were fine. Ten years ago, I was (mis)diagnosed with PCOS, so we thought that might be the problem. My doctor was about to start me on metformin, when she decided to do a pregnancy test, just in case. It was positive! By the time we figured out I was pregnant, I was 12 weeks and moving past the first trimester miscarriage worry stage. I'm due in June.
So, yes, success can happen. Evidently all I needed to do was reduce the prolactin levels, and everything went just fine from there. In fact it went so well for me that I feel a bit guilty; I was prepared for a much longer fight. Fingers crossed for you.

[Andi]

Yeah!!! Congratulations on your . It is so nice to know that there is hope! No need to feel guilt, you deserve to be successful.

[mizgee]

Congratulations!!! I was starting to get worried when there were no replies. I have been searching the internet for success stories and I haven't found many so this is wonderful news. Your story is encouraging and gives me hope. I am so happy for you! Did you have any pregnancy symptoms at all? Were there any signs that you were pregnant since you found out when you were 12 weeks?

[sami]

The beginnings of the pregnancy coincided with a trip I took with my husband. Neither one of us came back feeling well--we both felt awful after eating, tired, not sleeping well -- so we just assumed that we picked up the same low-grade virus. The confusion was further compounded by incredible stress at both of our workplaces that started a week or two after our return, which we also assumed was taking a physical toll on both of us.
In retrospect, there were moments where I felt some symptoms, but there were plenty of other explanations/justifications that came to mind. Not once did I vomit. I never experienced morning sickness. And since I was still on the cabergoline, my breasts remained the same size (I'm off it now and popping through). But in the end, I didn't go to see the doctor because I was feeling awful and was seeking answers; I went because I wasn't having cycles, like I had many times before. Only this time when they asked me if I might be pregnant, and I said "I doubt it," they didn't believe me.

[Wannababy]

hi

I'm not sure if anyone is still talking about this but i'm new to this site. I was diagnosed with Prolactinoma just over 10 years ago. My prolactin level was as high as 428!! I had leaky breasts, terrible headaches and was not seeing my period at all. This was going on for about a year before I actually went to the doctor which is why I guess my levels were so high. I first started taking paralodel but couldn't deal with the side affects so I quit it.......I stopped taking the meds after one year and still not having a period.. I just got so fed up that I quit on myself. I did nothing for 8 years and during that time I never saw my period. Since then I've been put on dostinex and finally my menses came back and was regular for one year 2006. Then in 2007 I started missing my menses again!!! I'm married now (3 years)and just turned 34 on Monday and my husband and I have never used ANY kinds of contraceptive, but I've never gotten pregnant. I just recently went to a specialist and was placed on a 3 month cycle of clomid 100mg. I had to take provera first in order to see my menses during december 2007 and then I took my first round of chlomid........my menses came again in Jan 08 and I took my second round of the clomid and i'm hoping that we were successful.......I'm just curious to know if there is anyone else out there like me.

[Andi]

I am not just like you but am dealing with a prolactinoma. My cycles haven't been very consistent... I thought I had them figured out and then my last one was much shorter than they have been. I have been given the opportunity to take clomid but wanted to get my levels into the normal range before taking it. My levels in October were finally in the normal range but I had a miscarriage in November so just trying to get back on track. My cycles have been anywhere from 65 days to 31 days long...
Are you doing OPKs to detect your ovulation day? They aren't perfect but can help you plan bding.

This is such a great site for support. Good Luck for this next cycle. for you.

[Wannababy]

Hi Andi

Thanks for writing.....I know that my situation is a bit ridiculous because of my neglectfulness, but it's still somehat comforting to know that there are others fighting this prolactinoma.........you know I still don't know what caused this............I was normal as a teenager but somewhere somehow........things just changed..............I haven't been doing any opk's (??) just counting 14 days from the beginning of my period and going from there.............my next step..if i'm not successful this month will be to check my tubes ....I see so many people with children who seemingly take it for granted and I'm wanting so much to have a child that sometimes it gets overbearing......and all people say is well try not to think about it...HUH???? .....n e way thanks again for your kind words and support.............i wish lots of baby blessings on you

[Andi]

You can take this for what it's worth... I would start taking my BBT and using an Ovulation Predictor Kit (OPK) for the next cycle prior to having my tubes checked... but that's just me. The only reason I say that is because it will also give your doctor information about your cycle and then you will know if your ovulating or not. From my understanding if you have a temperature rise in your cycle then you have ovulated. I use Fertilityfriend.com to chart my temps. I just use the free version because I feel that it gives me the info I want. It's nice to know there is someone else with the same diagnoses.

OPKs are similar to home pregnancy tests. The kind I use you pee on the end wait for at least 5 minutes and it detects your LH surge which is the hormone that surges right before your egg is released.

I purchased the BBT thermometer from Walmart. I use a digital one so that I can take it at the same time and if I fall back to sleep it remembers my temperature so I can record it later.

From what my endocrinologist has shared with me... There is no known cause for prolactinomas. They grow fairly slowly. They used to link the Pill to them but have disproved that theory.

My teenage years were not "normal"... I was an athlete and always attributed my very irregular periods to lack of body fat. When I started the Pill at 17 I gained 15 pounds in a month so I am thinking that I may have already had the prolactinoma and a lack of estrogen so the introduction of the synthetic estrogen in pills caused my weight gain. Of course this is all my theory.