Prolactinoma (micro) and ttc
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gozal
May 17, 2011, 12:20:32 PM5/17/11
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Hi there, I am new here and really excited to find a group to discuss this with. I was (finally) diagnosed with prolactinoma 5mm after I stopped breastfeeding my first child. After a month on the base dose of cabergoline, PRL was still elevated and I still had amenorrhea, so we increased the dosage and finally my PRL is controlled. I've read that theoretically my chances of conceiving are as good as they would have been without the tumor, but I'm not convinced. (I'm in my early thirties.) My RE offered Clomid and I'm not sure to what degree it's necessary, since I did a monitored cycle and I am ovulating, lining is normal and the only thing was that progesterone was 9 whereas they prefer 10. However, I don't want to lose more time. I was planning at this stage to be trying for #3!
Anyone have any experience of advice to offer? I would really appreciate it. Thanks in advance!
Anyone have any experience of advice to offer? I would really appreciate it. Thanks in advance!
Erika Fleury
May 18, 2011, 1:11:42 PM5/18/11
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Hi Gozal (trma...@gmail.com),
I'm also ttc with a prolactinoma (for the first time). I'm 30 years old. I had a 7mm tumor diagnosed 8 years ago. PRL level has fluctuated between approx. 60 to 30 at various points, right now at 50. I've avoided meds thus far because I had no symptoms except for lactaction when it was diagnosed, but now we've been ttc to 8 months and I decided to finally try cabergoline. I just started this week with 1/2 a pill twice a week. Is this what you're on? I know technically my PRL levels are rather low but my luteal phase is shortened, so hopefully this works to lower my PRL just enough so that I can conceive.
My doctor told me about Clomid but since that encourages ovulation, it wasn't necessary for me since I am ovulating. Sounds to me like you don't need Clomid either. Elevated PRL causes lowered progesterone. I don't know how high your PRL is now, but I know a "normal" level is 27-30. So even if yours is slightly above that, or maybe even at that level, your progesterone is lowered just enough to inhibit pregnancy.
Maybe talk to your doctor about increasing your cabergoline dosage slightly to get that PRL down more?
I hope this helps. I know it helps me to talk to people who have experience with this. I've heard of plenty of prolactinoma-pregnancy success stories. I hope we can join them :)
- Erika
gozal
May 19, 2011, 11:16:19 AM5/19/11
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Hi Erika,
It does! It helps so much! Thank you.
It's interesting how different each person will be - with a level of 28 my cycle was completely suppressed. This was after one month of 0.5mg/week, taken twice per week in half-pill, 0.25mg doses (like you are doing). Before treatment my levels were in the range of 60-90. My RE did mention that some women with a level of 50 or higher might have regular cycles, while others (like me) won't have any cycle at all. I ended up needing to increase to 0.75mg before my PRL fell to normal range (about the middle of the lab's reference range). Now I seem to be cycling normally - I'm keeping a close eye on my luteal phase length, though, for the reasons you mentioned. So far, it seems to be normal, 13-14 days.
I spoke to my doctor again yesterday and she reiterated what you said, that Clomid isn't necessary and that our chances of pregnancy should be the same as the general population once PRL is in normal range. But, since Clomid has been shown to increase chances of conception for ovulating women, it's something we could try if I would like. We decided we would try without and if we don't get pregnant soon, we will add it.
I can tell you that once I hit the right dose of cabergoline, my body went back to normal immediately. I'm hoping that you have the same experience, and your lp is perfect this time! Let's add to those stories!
It does! It helps so much! Thank you.
It's interesting how different each person will be - with a level of 28 my cycle was completely suppressed. This was after one month of 0.5mg/week, taken twice per week in half-pill, 0.25mg doses (like you are doing). Before treatment my levels were in the range of 60-90. My RE did mention that some women with a level of 50 or higher might have regular cycles, while others (like me) won't have any cycle at all. I ended up needing to increase to 0.75mg before my PRL fell to normal range (about the middle of the lab's reference range). Now I seem to be cycling normally - I'm keeping a close eye on my luteal phase length, though, for the reasons you mentioned. So far, it seems to be normal, 13-14 days.
I spoke to my doctor again yesterday and she reiterated what you said, that Clomid isn't necessary and that our chances of pregnancy should be the same as the general population once PRL is in normal range. But, since Clomid has been shown to increase chances of conception for ovulating women, it's something we could try if I would like. We decided we would try without and if we don't get pregnant soon, we will add it.
I can tell you that once I hit the right dose of cabergoline, my body went back to normal immediately. I'm hoping that you have the same experience, and your lp is perfect this time! Let's add to those stories!
ramani dasi
May 19, 2011, 1:02:17 PM5/19/11
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Hi,
Date: Tue, 17 May 2011 09:20:32 -0700
From: trma...@gmail.com
To: Hyperpro...@googlegroups.com
Subject: Prolactinoma (micro) and ttc
maybe this would be helpful for you and others- my prolactinoma ( 5 mm) was diagnosed three years after the birth of my second child, because after the breastfeeding I still had some milk and my period was unregular. The prolactin level was 90. Last year, when I reduced Dostinex, my prolactin level was about 28 and two Endos said to me I'm not ovulating anymore, which wasn't bad for me, because we didn't want one more child. But suddenly I stayed pregnant, on a day which is quite difficult to conceive. The endo and the gyn said both, this is a little medical wonder, because I wasn't fertile at all. But it has happened. Unfortunately the pregnancy didn't last due to my undiscovered hypothyroidism.
I wanted to say- don't lose the hope, even with high prolactine level it's possible to stay pregnant! So many women stayed pregnant during the breastfeeding period, although their prolactin level were very high. Everything is possible, just keep the faith!
All the best for you!
Ramani
Date: Tue, 17 May 2011 09:20:32 -0700
From: trma...@gmail.com
To: Hyperpro...@googlegroups.com
Subject: Prolactinoma (micro) and ttc
Shyanne Hathaway
May 19, 2011, 2:39:37 PM5/19/11
to Hyperprolactinoma
With my first baby the doctor gave me clomid right away with the bromo
and I got pregnant the first month and then miscarried 9-12 weeks
later. I'm pretty sure my progesterone was really low due to my
prolactin being so high for so long. It took me 5 months (on bromo and
clomid) to get pregnant again and I gave birth to a happy baby boy
almost 2 years ago. I think the clomid helped me get pregnant both
times, but with my miscarriage I feel like my body wasn't balanced
enough (not enough progesterone) to maintain the pregnancy. I feel
like after that, my body kind of knew what it was doing and waited to
be balanced before I was able to get pregnant again. With my current
pregnancy it took 5 months for my cycle to get "normal" (my luteal
phase finally dropped under 20 days) and I was pregnant that month. I
was ovulating fine with each pregnancy but I feel the clomid helped.
I was able to get pregnant fairly quick without it this time too but I
was obviously doing a lot of natural things to help and I know it
helped ALOT. I think as long as you are proactive in one way or
another it will happen. It also takes patience and I think you have
all mastered that one pretty well! Good luck to all of you!
Shy
> maybe this would be helpful for you and others- my prolactinoma ( 5 mm) was diagnosed three years after the birth of my second child, because after the breastfeeding I still had some milk and my period was unregular. The prolactin level was 90. Last year, when I reduced Dostinex, my prolactin level was about 28 and two Endos said to me I'm not ovulating anymore, which wasn't bad for me, because we didn't want one more child. But suddenly I stayed pregnant, on a day which is quite difficult to conceive. The endo and the gyn said both, this is a little medical wonder, because I wasn't fertile at all. But it has happened. Unfortunately the pregnancy didn't last due to my undiscovered hypothyroidism.I wanted to say- don't lose the hope, even with high prolactine level it's possible to stay pregnant! So many women stayed pregnant during the breastfeeding period, although their prolactin level were very high. Everything is possible, just keep the faith!All the best for you!
> Ramani
>
and I got pregnant the first month and then miscarried 9-12 weeks
later. I'm pretty sure my progesterone was really low due to my
prolactin being so high for so long. It took me 5 months (on bromo and
clomid) to get pregnant again and I gave birth to a happy baby boy
almost 2 years ago. I think the clomid helped me get pregnant both
times, but with my miscarriage I feel like my body wasn't balanced
enough (not enough progesterone) to maintain the pregnancy. I feel
like after that, my body kind of knew what it was doing and waited to
be balanced before I was able to get pregnant again. With my current
pregnancy it took 5 months for my cycle to get "normal" (my luteal
phase finally dropped under 20 days) and I was pregnant that month. I
was ovulating fine with each pregnancy but I feel the clomid helped.
I was able to get pregnant fairly quick without it this time too but I
was obviously doing a lot of natural things to help and I know it
helped ALOT. I think as long as you are proactive in one way or
another it will happen. It also takes patience and I think you have
all mastered that one pretty well! Good luck to all of you!
Shy
> maybe this would be helpful for you and others- my prolactinoma ( 5 mm) was diagnosed three years after the birth of my second child, because after the breastfeeding I still had some milk and my period was unregular. The prolactin level was 90. Last year, when I reduced Dostinex, my prolactin level was about 28 and two Endos said to me I'm not ovulating anymore, which wasn't bad for me, because we didn't want one more child. But suddenly I stayed pregnant, on a day which is quite difficult to conceive. The endo and the gyn said both, this is a little medical wonder, because I wasn't fertile at all. But it has happened. Unfortunately the pregnancy didn't last due to my undiscovered hypothyroidism.I wanted to say- don't lose the hope, even with high prolactine level it's possible to stay pregnant! So many women stayed pregnant during the breastfeeding period, although their prolactin level were very high. Everything is possible, just keep the faith!All the best for you!
> Ramani
>
> Date: Tue, 17 May 2011 09:20:32 -0700
> From: trmar...@gmail.com
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