Elevated Prolactin!!! Please Help!!

[solanaj]

Hi I am new to the site and am seeking information on elevated prolactin levels, but with normal periods. DH and I have been ttc for a while, but just found out that I have a really tiny prolactinoma that is causing my prolactin levels to be elevated. Thus far I have had several test done and most are in the 40's ng/mL. I have had soooo many other fertility test done and everything comes up normal. This is the first time we have had an abnormal finding regarding fertility. However, mostly I read that most women who have this problem just don't have periods and don't ovulate. Well, every time I've charted and used the OPKs, I've gotten positive responses indicating ovulation. I've had two progesterone drawn to even make sure and both were above 10. One was 26 and another was 15.  If there is anyone that can shed some light on this I would be very thankful. TIA

Sol

[milliesmummy]

how is your little one doing?

[Want2BeMama]

wow now looking back at this i last posted my message on march 12th saying everything was great....but i dint know what was coming to me....the very next day i was admitted to the hospital....1 week later i gaved birth to a 1 lbs 7 oz. baby boy ....the saddest thing ever i coudnt believe it...anywas to make a long story short im leaving everyday into a bad dream...it will be 8 weeks on wed. and my little one is still fighting for life now weighting in at 2 lbs 10 oz and having many many medical issues...but so far nothing to major...they are going to be doing some important testing in the morning and im sitting here freaking out because im so anxious and worried on what tom. may bring...i hope by now solanaj you got your BFP and i say it now to all the new expecting moms if this is your first pregnancy be very careful and dont just take the drs. words ask more questions and if you feel somenthing is wrong than somenthing problably is trust your insticts and be very persistant (sorry sp?)....good luck to everyone!

[dani1111]

Hi,
How many times have you had your prolactin tested?  And did you fast before the test?  Year ago, during routine blood testing, not ttc then, the doctor pulled me into the office and said, that she thought I may have had a brain tumor because my prolactin was high.  I got another blood test, and was told to fast before.  They told me that the first test, which I did not fast for, wasn' t accurate if I did not fast.  The results were low normal prolactin - no tumor.

Also, if you get anxious about blood tests, this can influence the prolactin and increase it.  Some websites even recommend waiting and calming down before gettting the blood drawn.  Another thing is prolactin increases when you are sleeping and shortly after you wake, so you may want to re-test in the evening.  

I don't know about the progesterone, but I have the same thing, normal and actually really good hormone blood levels, and confirmed (with pee stick) ovulation for 4 months.  I think re-test, you aren't too far out of range.  My doctor said that 3-30 ng/mL is normal, but each lab is different, so check with your doctor.  
GOod luck and I hope you get pregnant really really soon,  Julia

[marion1]

WOW!! congrats on your prolactin level!!!  That is fantastic news!  I will keep sending out the positive vibes for you!  It will happen :-)

Yes, the bromo has made me so tired.  I used to exercise 4-5 days a week and I am lucky to do make 1x week these days.  when I first started taking the higher dosage last May, I was so tired all the time.  I didn't want to do anything.  I was so social but I stopped wanting to do anything with my friends...just because I was so tired, I'd rather just sleep.  It wasn't until my best friend talked to me about it in October that I made the connection (I know a little slow).  So i had to put so much effort into "doing things".  Once I started taking it vaginally at the lower dosage, I wasn't as tired.  Don't get me wrong, I am tired still - but not like I was.  I think the lower dosage and the "power of intent" has helped.  

I think it is good you are recognizing it so quickly.  Talk to your doctor and see what he/she says.  But I have a feeling, you won't be on it too much longer.  In a matter of time you will be tired for another reason...a little someone :-)

hang in there and again, congratulations on your level.  

want2bemama - glad you got the little pill!!  Have fun getting ready for the baby shower - it will be here before you know it.  How perfect is an April shower?!?

[Want2BeMama]

Hey that is great 8.3 is super! thas where mine was about when i was told to go ahead with the injections.

Everything is good here! im 1 week shy from reaching my 6 month mark! i cant believe it, seems like its going by so fast, but im not complaning i cant wait!
Im getting some things together for my baby shower next month, so ive been pretty busy and i would like to finish the nursery before the shower also, so im on a roll lol, ive been having the worst heartburn ever even if i just drink water, but my Dr. called in a RX for me and i tool one pill last night and omg its a miracle!!!
So far so good, i will keep my fingers crossed for you..best of luck keep me posted...
~Hugs~





-LM

[solanaj]

Marion1, thanks so much for your response. I think I will ask if I can take this bromo tab vaginally b/c I am having a difficult time with the drowsiness and a little depression. I just don't feel like myself. Marion1, I will keep my fingers crossed for you. I am sure you will be ovulating very soon and have your baby. It's really good to speak to someone who is going thru a similar situation. Well, my results from yesterday can back today. And the level is 8.3ng/mL. This is exactly where I want to be. I will begin monitoring ovulation tomorrow. Wish me luck. I will keep you all updated. Want2BeMama, how is your pregnancy going?

[marion1]

Hi there.  I was just reading your comments.  I actually don't have a period due to my high prolactin level.  I was diagnosed with a prolactinoma on my 16th birthday - and back then, unfortunately, nobody was familiar with it so my endocrinologist had to put my case in front of "the board".  My prolactin was 987 and my ovaries were a size of a 5 year old.  I was put on bromocriptine but the side effects (vomiting) were so intense, i really didn't stay on it like I was supposed to.  Every now and again I would take it, but I figured I didn't want to get pregnant at that point anyways...so why put myself through it.  Last year, I felt I was in a place where I wanted/should check "things" out...being in a spot where I was ready to have a family BUT I was scared to death because I have had many friends go through infertility procedures that haven't worked AND I wasn't looking forward to the sickness.  Honestly, there were days I couldn't get up and going until noon!  I HATED it.  I started the bromocriptine at 2.5mg last February...but took it depending on what I had planned at work or socially the next day.  Finally, I went to the fertility specialist to see IF I had eggs.  I had put off the u/s for SO long because I was scared to know.  I was in tears when she told me I had beautiful, healthy ovaries with many eggs!!  Being concerned about my prolactin level being high (117 then) she asked how the medicine was going.  I explained how often I actually took it and WHY it wasn't daily.  I was so tired on the bromocriptine AND so sick I had lost 15lbs...and the endocrinologist had me shooting for 10mg!!  I could hardly be ok on 2.5 but over the months I had worked my way to 10mg twice a week(splitting the pills 4 ways throughout the day).  She was amazed how much I was taking but disappointed that I wasn't taking it like I should...explaining I wasn't helping my fertility.  I was so excited about "having eggs" but close, if not more excited when she told me that I could take the bromo TABLETS vaginally!!  She said I didn't have to take as much...starting at 2.5mg because it absorbs more than taking it orally. NOBODY ever told me that before. I started that immediately and within 1 month, my prolactin went down to 36...and the BEST news...I am not sick so I am taking it daily, like Im supposed to.  I go back tomorrow for my next appointment to figure out what to do next because I have not started to ovulate like they had hoped...BUT I still have lots of faith.

I kind of got carried away with my writing...I actually was just writing to tell you both how sorry I am you had to go through SO much before being diagnosed with high prolactin.  it breaks my heart to hear the stories of miscarriages, IVF, etc., when a SIMPLE blood test could of saved you both all that heart ache.  Prolactinomas (and higher prolactin) is so much more common these days, I don't understand why bloodwork isn't the first thing done.  I am sure you both have gone through your scenarios for a reason (want2bemama this baby was meant for you) - I just wish the pain could of been avoided.

Anyways, solonaj ...good luck and I am glad the bromo is working so quickly for you.  I hope you aren't experiencing any side effects.  If you have the tablets, maybe you could ask your doctor to take it vaginally.  DO NOT do it if you have the capsules (which I believe are the 5mg dosage).  I am sure you will be "expecting" in no time.

[solanaj]

Of course. I will definitely try. I go on Monday and will get my levels checked again. I am guessing that my levels will be under ten, which is my goal. I just hope that it's low enough to actually have a real shot at this. We will see. I will post my results from Monday too. Thanks for taking interest LM.

Sol

[Want2BeMama]

Thas good news! im glad everything is going as plan. Now are you doing anything this cycle?? or they just want to wait till its lower yet?

Good luck hun :)

~Hugs~



-LM

[solanaj]

Hello Ladies.

Well I just wanted to report that my level as of Monday was 17ng/mL. Yay!!! I am so excited. Just ten days on bromo and we are getting somewhere. Another bonus, AF came this morning and I barely have cramps. This is so fascinating to me. I have always needed pain killers on CD1. Today, I barely even know it's on. Has this happened to anyone when prolactin decreased? Neither my mom nor sister had cramps. I felt like the outcast growing up. Now I see what I've been missing. I hope this continues.

Sol

[solanaj]

I think your doctor is right. I believe that you would have gotten pg naturally. The key is that you got those levels down before hand. I don't blame you for proceeding with the injections. Those meds are expensive. And if, I can't tolerate bromo, I will get on dostinex. I read too that is worked faster. I will definitely keep you posted, and thanks again for responding.

Solana

[Want2BeMama]

Hey hun! no problem thas why we come on here for!
i dint get pregnat naturally although my RE had said to me if i wanted to try naturally because he thinks this was the only reason why i wasent getting pregnant and along with having PCOS it could have taken longer but he said it wasent somenthing unrechable! but i had already the meds home for the injection cycle and i just figured i would have used them! so i got pregnat on the first cycle of gonal-f with ovedril and IUI, if  you went trough IVF and all those IUIs and injections they should have checked your prolactin than,...thas how my RE figured out about my prolactin when i was going to do my first round of injections with a base blood work so i skipped that cycle....bromocriptine is like dostinex i did some research when i found out about my prolactin i knew my dr. was goin to put me on a new med but i dint know which one, he chose dostinex because he says its more effective but im sure ull done fine too!
keep me posted on your progress!
Good luck.

[solanaj]

Thank you both for your responses. I really appreciate them.

Julie1615 and Want2BeMama: I have done clomid with and without IUIs. I just finished one cycle of injections /IUI two months ago. I've done one IVF which resulted in two miscarriages. That is what led to the further testing. No one has ever tested me before. I guess b/c I had regular periods and ovulated with all treatment and as Want2BeMama has said, apparently this is rare. It's been such a long process. I began with a pelvic u/s, an HSG, a lap and nothing ever came up abnormal. I was considered unexplained. I had to have two DandCs from my miscarriage b/c my body just would not let go. All of this to find out that I have a pituitary tumor that can be treated with a little medication.  I just started bromocriptine last night. I have a slow start up protocol. I really hope that this is the reason and we should be okay now. I have put my poor DH through so much. I have him taking all these vitamins to make sure his boys are perfect. It's so sad. I just pray and keep faith that this struggle will be worth it in the end. But I just want to thank you both for responding. It's nice to hear from people who are/have gone through something like this. Oh and congrats on your pregnancy Want2BeMama. I am going to strive to get my prolactin down to below 10 but greater than 5. Hey, 8 sounds perfect!!  Did you get pg. naturally after your number came down?

Sol

[Want2BeMama]

Hi,
when i was ttc after many months of using clomid and one failed IUI decided it was time to move into injections i went in my RE office for a base u/s and blood work and i was told to start my injections the same night...well couple hours later i got a call from the nurse saying that my prolactin levels were really high (43) at the time, and that my chances of getting pregnant were slim to none, and since i pay everything out of pocket it was not worth the money trying anywas, so that month we skipped the cycle, was put on this new meds called DOSTINEX which i only took half of a pill twice a week, and i was asked to go for an MRI for pituatary glands, it freaked me out when i came on line and read so much things about it, it took almost 2 weeks to hear back from my RE office for the results, and those were the worst 2 weeks of my life ever, finally when i got a call and everything was fine i was asked to go back for another blood work and this time the prolactin were down to 8! i was told by my RE that having high prolactin isint very common so if u dont get any response on here its because not a lot of us have the same problem, when i was first dx with it i came on here too and posted a question, nobody bothered to answer than i figured out why!
So dont get discorauged i ended up getting pregnant and im 20 weeks 3 days now!! :) and my period were never irregular i was having problems ovulating but thas because i have PCOS...if i were you i told talk to my dr. about dostinex and take it from there!
Good Luck hun i hope i kind helped you a little!

[Julie1615]

Hi there, I too had a borderline elevated prolactin level when I first went for my blood tests almost a year ago. It was about 24.2. It was in the normal range, but still on the "high" side is what my OB-Gyn told me. Since then I had it tested again and it was about 20.1 about 4 months ago. I suppose your body produces more prolactin as a stimulation to the mammary glands... but not sure why. Hope this information helps.

What kind of fertility tests have you had done till now? Are you seeking any fertility treatment? Hope everything turns out fine!! Good luck:))

-Julie

[solanaj]

ANYONE????