Hyperprolactinemia/prolactinoma (m/c, p/g & child mentioned)

[mishka1]

Hello everyone!
I'd like to start a thread for those with infertility related to Hyperprolactinemia/prolactinoma so that we can share info & lend comfort on our TTC journey.

I was diagnosed in October 2006 and I have a 5 to 6mm microadenoma. I started cabergoline and got pregnant in December 2006. Unfortunately, that pregnancy ended in miscarriage at 6w but it was complicatd. It was a missed miscarriage and I never bled. I had a D&C in February and had to wait for my HCG to bottom out before I could start on meds again, Bromocriptine this time. I had to wait out three "normal" periods before ttc again. That June, we stuck gold! I became pregnant our first month trying and though I was terrified of losing her, I ended up having the BEST pregnancy and DD was born on March 4th, 2008 via C-Section. We are so greatful to have her in our lives. She's just amazing!

So here we are nearly 20 months later TTC again....
We started ttc last month and I though (hoped is more like it) that we had gotten it the firts time. I was wrong.
That sneeky serum prolactin is in the way again. Though I have been back on Bromocriptine for nearly a year and have had regular periods since March 4th (yes, 1 year after DD's birth!), my prolactim levels have been inching up over the last few months and they suddenly spiked this past month. I had a feeling that I didn't ovulate in September and AF was about 4 days late (unusual for me).
As of October 26th my prolactin was 85. That's not much for many but I seem to be very sensitive to mild hormonal changes.
My Dr. upped my dosage of Bromocriptine for, 3.75 to 5 and we're hoping this will do the trick.

Best of luck to all on your TTC journey!

[Millie97]

Mishka - Thanks for starting this thread. I think it's definitely something everyone can be more educated about, so hopefully getting the info out will help others. Congrats on DD, BTW. She's adorable.

My story is very similar to yours. Unfortunately I went through 4 unsuccessful IVF's before being put on bromocriptine. I have a prolactinoma as well (although I have to look at my records to see the exact size). When I went off the pill to first try to conceive I didn't get my period for 6+ months. That's when I went to the doctor for evaluation. My blood work showed by prolactin at 20 (which is within the normal range), but my estrogen, LH & FSH were all very low. Hence, come to find out, a prolactin of 20 with the combination of the other hormone levels is NOT normal. The doctor never mentioned going on medication to lower my prolactin. Instead they suggested to cut back on stress, exercise and gain weight. (Those were definitely contributing to my hypothalmic ammenorhea and lack of period.)

To make a long story short, I proceeded to do 4 IVF's with poor embryo quality. While my prolactin was never monitored DURING an IVF cycle, whenever it was measured AFTER an IVF cycle it was in the high 80's. It was finally a neuroendocrinologist I saw last fall who put me on bromocriptine. She said that for "optimal fertility" prolactin should be around 10 or below. Well after starting the bromocroptine in November '08 I got my first natural period in Jan '09 (my first natural cycle in over 2 years) and I got pregnant in Feb '09. I'm due in 2 weeks.

DH & I definitely want to have more children (although I want to give myself some time to enjoy this precious gift we are about to receive!). I also just want to give my body/mind a break from the "job" of trying to conceive for so long. BUT, getting a natural cycle back is definitely a near term goal of mine once I have my baby. I don't want to revert back to old restrictive eating habits and over-exercising. I'm going to be monitored by my neuroendocrinologist once I stop breastfeeding to see if my prolactin returns to a normal level. If I have to go back on the bromocriptine to menstruate again, I certainly will.

Mishka, I wish you lots of success in your attempt to conceive again. I, like you, have always hoped that having a second baby will be easy given that I think (hope!) we have "figured things out". Please keep us up to date on how everything is going for you.

[mishka1]

Hi Millie,
Thanks for posting and congratulations on your pregnancy!!!
Isn't it wonderful what can happen when your hormones are all in balance.
I read a study while I was pregnant with DD regarding pregnancy and it's effects on prolactin secreting tumors. In some cases, they necrotize and reabsorb into your body. I wish that would have happened but no such luck...
Best of luck to you and keep us updated on how you're doing.

[jcall]

I am SO happy that someone has started this tread. My story-- I stopped birth control a year ago (november 08) and didn't get my period. Thought it was just my body readjusting from being on BCP, thought it was stress, my obgyn tried Provera and when I didn't get a bleed she wanted to put me back on birth control. Finally, I saw another obgyn who did blood work which showed my prolactin was 61. He started me on Cabergoline in July and ordered an MRI. When the MRI came back showing a 1.1cm macroadenoma, he suggested I consult with a neurosurgeon.

I saw two different neurosurgeons who specialize in pituitary tumors. They both said the same thing that bc my tumor was a macroadenoma but my prolactin was only slightly elevated that the growth could be a prolactinoma, a non functioning tumor (exhibiting stalk effect), or a cyst (also with stalk effect) and that although my prolactin level would lower with cabergoline, only the prolactinoma would actually shrink with the medication. Given the fact that we were TTC and the cure rate for the size etc of my tumor was high, I decided to do the surgery.

I had surgery on August 5th. They said that I could get my period any time, but if I hadn't gotten it in three months to check back. Well, here we are at three months, no sign of AF. Right before surgery my prolactin was at 1.6 (from the Cabergoline), following the surgery (August 8) it was 5. October 1, my prolactin had edged up to 14.5. I have my follow up MRI tomorrow (oh joy) and am anxious to get blood work to see what my levels are now.

I will be SO disheartened if my prolactin is elevated further because I'll feel like surgery was pointless... Alternatively if it's within normal range, then I'm probably headed to the reproductive endocrinologist to figure out next steps....

Mishka and Millie-- It's good to hear your stories about conceiving... Millie- I know you've been on the HA board. My obgyn was speculating about HA before my tumor was found and I'll see what my bloodwork shows, but if my prolactin is normal I wonder if I'm not also dealing with HA. My E2 levels were 20.55(in August) and 22 (in October). FSH was 3.9 and 7.3 and LH was .35 and 2.4. My BMI is about 20.

That's really interesting about prolactin being 10 or below for optimum fertility but it makes me sad/nervous about my level being 14.5 most recently. I really wanted to avoid being on medication if possible. I was so hopeful that surgery would be a "cure" since the cure rate was 80-90% with my size tumor/levels of prolactin. Well, I guess I'll see what my bloodwork says....

Anyway this month has been a year without a period (before that I was on BCP)... which is so strange. I feel upset that my body isn't functioning as it should and, at times, overwhelmed at the thought that we're not even at the starting line of conceiving....

Thanks for starting this thread and hope others will also contribute...
Julia

[Millie97]

Julia - Yes, I totally remember your story from the HA board and reading about your surgery. Did your doctor suggest going back on the medication? As far as I know there really aren't any major detriments to being on the medicine. I did find the side effects difficult at first, but once my body got used to it I felt like it was very manageable. I can understand you being upset after going through the surgery and still no having AF.

How has your exercise/eating/stress levels been? I'm convinced that it wasn't just the prolactin that caused me to have difficulty conceiving. I made MAJOR changes in my life. A BMI of 20 is still very low. Maybe you need to tackle the HA side of things a little bit more now? It's funny b/c I was talking about it w/ DH over the weekend and how I wished someone had put me on the bromocriptine a year before they did. DH was like, "Don't kid yourself! You had to make a lot more changes to your lifestyle than just going on that medicine." And I know he's right.

This whole IF thing is SO hard b/c you just want to figure this puzzle out, and it can be extremely frustrating along the way. Hang in there!! Sounds like you're exploring all your avenues and that's all you can do. I just kept at it and kept consulting with doctors until SOMEBODY told me SOMETHING!!

[mishka1]

Hi Julia,
Welcome!
I'm so sorry you've had such a long and frustrating journey.
Are you continuing with the cabergoline after the surgery?
It's quite possible to have hyperprolactinemia without a tumor so the surgery is not always so cut and dry.
This is a longshot but I read that there may be a correlation between high prolactin & celiac or gluten intollerance. It might be wirth it to go gluten free for a while and just see what happens.
I really hope you get AF soon and start ovulating regularly.
Please keep us posted.

Millie,
Just wanted to give you a shout out and ask how you are feeling.

Best to you both!
Regina (Mishka)

[jcall]

Millie, thanks for responding. It is SO awesome that you're due in two weeks!!!! WOW!!!! How are you feeling? Amazing that after such a long road, you will soon be holding your baby in your arms.... Congrats to you and your husband and I hope you're feeling good.

I really appreciate the response. Each month with no sign of AF, I just get disheartened, frustrated and upset. DH is sympathetic, but I think he gets frustrated that he can't just fix it and make me feel better and so doesn't know what to say. I feel bad too bc my libido has been so low (maybe due to low estrogen?) and I was hopeful that post-surgery that would bounce back and... so far... not really... and without a period at all it's not like I can chart my temps or anything. Well i suppose I could, but it seems a waste at this point!

I have not been on the Cabergoline since surgery. My endocrinologist is sending me a perscription for bloodwork. She said if everything comes back "in normal range" to go see my reproductive endocrinologist, but if my prolactin is elevated that she recommends starting back on the Cabergoline. I've never been so eager to get my blood drawn (i hate needles)... to just know if it's the prolactin or not.

re: the HA thing, I'm kind of struggling psychologically with it. If a doctor came right out and said, you need to gain weight, cut some exercise and stress-- I think I would be able to embrace making changes... if my prolactin is normal and I see the reproductive endocrinologist I think I'll raise it with her. I don't exercise compulsively or restrict extremely; I'm just very health conscious. So, there's some part of me that needs to hear it from a doctor before I believe it myself... Maybe it's that if a doctor says it I can justify it to friends/family- why I'm gaining weight and relaxing more? .... and then there's a part of me that worries I'll do all that and STILL have trouble. ...and maybe it really is Just the prolactin levels. We'll see what the bloodwork says-- I'll post it when I get it.

Can I ask what your levels- prolactin etc were? Have you stayed on the bromo throughout your pregnancy?

Mishka- Did you notice a difference btw the bromocriptine vs the cabergoline? Did they think the cabergoline played a role in the miscarriage? Your daughter is beautiful and I hope she gets a little brother or sister in 2010... please keep us posted.

[mishka1]

Hi Julia,
First of all, thanks for the comment and the baby wishes.
I was initially put on cabergoline because the side effects were less than with the bromocriptine. I discontinued cabergoline as soon as I became pregnanct (on doc's orders) and no one thinks it played a role in the miscarriage. In fact, the genetic testing of the "products of conception" came back as a normal male careotype. So in esence the miscarriage is unexplained.
I was put on bromocriptine rather than cabergoline after my hcg levels bottomed out because cabergoline was shown to have caused heart valve prolapse in certain people and my dr. didn't want to take a chance. The people who has the prolapse were mostly very elderly, with parkinsons and had been taking at least 10 times the dose I was on.
Though bromocriptine does have some initial side effects they do fade as your body grows acustom to the medication. It usually takes me a few days to adjust to and increase in dose.

After having DD, I didn't start taking meds again till 9 months post pardum and didn't get AF till her first bDay. I was a raging lunatic from all the hormonal fluctuations and I felt like AF was about to come at all times. Forget about libido (poor DH is a saint).
I have been getting regular AF since then but have purchased some OPK's to check for an LH surge this month to confirm ovulation.

I really hope going back on the meds works for you. Balanced hormones make a huge difference in all areas of your life.

[Millie97]

Julia - Sorry I'm just writing back. I didn't realize there were a few more posts! As far as HA goes...I never had a doctor sit me down and tell me flat out, "you are not getting pregnant b/c of your exercise/eating/lifestyle". However, the majority of the girls on the HA thread have not either and look at all the success we've had!!! Honestly, there is NO WAY I would've been able to stick with my new lifestyle if I had not found the HA thread on this site. The girls on there have been SO amazing and supportive. I thank God all the time for pointing me in the right direction. I think TONS of us have felt the same way. If a doctor isn't telling me that's my problem, then I guess it isn't. The fact that I got thrown into IVF round after IVF round is a perfect example. There is no way my body was ready to accept a pregnancy with the kind of stress I was putting on it. Meanwhile, I, like you, thought I was eating/exercising a "normal" amount, but everyone's threshold is different. Some of us are more sensitive than others when it comes to getting AF.

I believe it was definitely a combination of both the prolactin and the eating/exercising. My prolactin initially was 20, so not super high. However, when you take into account my estrogen, LH & FSH were basically non-existent, a prolactin of 20 is definitely too high. It was during IVF rounds that it shot up into the 80's.

Please let us know what your b/w comes back at.

[jcall]

So I had my post-surgery MRI on thursday and got the report back yesterday. From the sound of it, there is no trace of tumor (yay) but it did mention that the stalk was still deviated to the left which worried me because I know the stalk is how the dopamine gets through to control prolactin, so I was worried that the deviation could mean increased prolactin...

I just got the results of my bloodwork back and would really, really love your thoughts. The good news, I think, is my prolactin is 15.4-- so that's in normal range. It is slightly up from 14.5 in October.. but I was worried that there might have been a spike in prolactin.... It's not less than 10-- which would be ideal, I guess.. but I'm glad it's "normal".

Now here's the unexpected part- if I'm reading this correctly my Estradiol is <7(?!?!!) That's literally what's written, not even an exact level. It's in bold and next to it is "Low" (uh, yeah, that sounds low!). Before I actually had the report, my endo emailed to say, "Your blood work was all normal, except the estradiol was a little low, which means your system is till suppressed from the prior prolactin elevation." What I don't understand is my levels in October were Prolactin 14.5 and E2 at 22. So why would my estrogen go down!?

She wrote, "At this point I would recommend either starting a low dose of the cabergoline, or seeing the reproductive endocrinologist and seeing what they recommend. "

I think I'll email my RE to get her take.... but I have to say that I am puzzled myself.... and have no idea what these means for moving forward. (although such low estrogen probably explains my complete and utter lack of any libido

Any thoughts-- or questions I should be asking?

FSH also went down to 5.1 (was 7.3 in October). LH stayed the same at 2.4.

Thank you guys so much,
Julia