Anyone have high prolactin levels

LegacyUser

hi all,
regular boardsie, but going unreg for this (for the time being)

i have been trying to concieve for 15 months now, i am 35, and never been pregnant before. last summer we decided to not prevent a pregnancy, i came off the pill and im sure like you all, i expected to get 'knocked up' as soon as he threw his trousers over the chair.

so up until about christmas, i just kept track of my cycle and let my body adjust to coming off the pill, in feb (after no baby from santa) i started using ovulation sticks and we are both taking pregnacare and wellman supplements.

so last month, i decided to go to my GP there is a gynaecologist at the practice so i saw her. i got my day 3 and day 21 bloods done and while the day 3 prolactin levels were outside the normal range, they werent excessive, however the day 21 were really high. i know stress can cause elevation and i was doing exams around that time, but i took another blood test and all is fine except prolactin is still high.

i am consulting with my GP, the next step is a referral to an endocrinologist, which i hope does not take long as im 35 already.
its not medical advice i am looking for, but i would be grateful if anyone has had this and can share their experience with me.

thanks

LegacyUser

Hi Coca Cola

Yes I have had high prolactin levels also. This was also spotted when I went to my GP after trying to conceive for about a year. My GP referred me to a gynae in the Rotunda private, they also diagnosed high prolactin levels a few times (numerous bloods done over the course of about a year) However my consultant at the time seemed to think they werent high enough to cause concern.

We were advised to do 4 IUI's & then consider IVF. We did one IUI which was horrendous & decided I wasnt happy with our clinic (Hari) We then switced to a new more advanced clinic (S*ms) & they immediately tackled the issue of high prolactin. I now take a medication called dostinex & since I am on this my levels are at normal.

I'm very annoyed my initial clinic did not tackle this problem at 1st as I feel we wasted so much time (not to mention $$$) having treatment that was never going to work while I had this problem. My highest levels from what I can remember was around 860.

Please dont let this slide as it could well be a factor in not getting pregnant, insist this issue is addressed before you start out on any fertility treatment. Good Luck

LegacyUser

hello highpro,

thanks so much for the reply, i cant believe that they let you go through so much with the IUI and so many tests when there is such an easy fix, you poor thing. i will make sure that it doesnt happen me.

my gp's office has a gynae, who seems to know her stuff. she mentioned that if they were still high on the third blood test, that she would refer me to an endocrinologist, to get it sorted. so it seems that they will resolve this before referring me for fertility treatment. she also is fairly prompt, which you really want in a doctor when you are trying to concieve in your thirties!

we are going on a last minute holiday - timed to coincide with my fertile time, so hopefully the combination of being away from work, getting lots of relaxation, lots of romantic nookie, might work, but if not, i will be rested enough to start in earnest on the next 'ttc' step.

thanks again - its great to know im not alone!

I am a friend

Are you doing the blood tests first thing in the morning? it can be artifically high first thing in the morning.

LegacyUser

i didnt know that. yeah, i go in before work, as i dont want anyone at work to know - so its usually straight in at 8am.

i will chat to my doc about it. she did say though that it was nearly 900 - think its well over double, and that fluctuations due to stress wouldnt make it that high. im being referred to a specialist now..hopefully it wont take too long

I am a friend

Yep definitely. I would have a test at lunch time before going down the whole specialist route. I went to Roselyn in Harcourt Health and she is great. I was going in before work too and it was bordering high. She called an encrinologist to see if it was high enough to cause problems. He told her (when I was there) that it was most likely due to the early morning test. It seems he had tested his own wife one morning and her levels were sky high and normal that afternoon..

Its worth a go before you start down the consultant route...

LegacyUser

Hi there - I had been diagnosed with high prolactin levels in June this year - I had gone to the doctor due to getting alot of period pains, I am 25 and I never had pain before - so she did the test and my prolactin levels were high. Since June, everything got alot worse. I have my period every day of every week ( Except for maybe a 5 day break, if I'm lucky, in the month), and I'm in alot alot of pain when I have them. My breasts have been so tender, and one of them leaked recently. I have also started getting really bad headaches, another thing I have never had in my 25 years.

I went and had one of those all over body checks done in the last month, and my prolactin levels came back as high again - at 765. It has been suggested to have another test done which is a test for macroprolactin - but I'm quite concerned because I'm constantly bloated, and I just don't feel well from all the periods, the pain and the headaches. And that's just the major bits!

Any advice??

Neyite

Hi Somuchpain,

Im the original OP who initially went unreg for this thread.

well, my prolactin levels were slightly high in august (days 3 & 21 tests) and doc repeated it in september, which were sky high so referred me to a fertility specialist and also an endocrinologist.

if you are being investigated for prolactin issues, the good news is that it sounds scarier than it is - i got an MRI which confirmed a growth on the pitutuary gland, causing the high prolactin, and the doc is starting me on tablets to control this. thats basically it really.

the MRI is painless, just noisy, and the statistics are reassuring - 1 in every 1000 people have a pitutary growth (which is the macro/micro adenoma,)but its only more frequently diagnosed in childbearing age women as a sideline to fertility issues. in a lot of cases, people never know they had them. in over 90 % of diagnosed cases they are successfully reduced through tablets, and its only a minute amount that require a surgical response.

try not to worry, just because your symptoms are severe, may not necessarily mean that the cause is equally severe - my prolactin was higher than yours - ranging from 600 to 900 depending, but i had zero other symptoms. I was almost relieved when i got my diagnosis - i had visions of needing expensive and painful IVF, so when she told me every test was fine except the MRI, i was relieved to know that a few tablets take me closer to my dream of being a mother.

are you being referred for an MRI or CT scan? I went private on VHI (billed direct to them) and had it 6 days after i was referred. public takes a bit longer i think.

feel free to ask any more questions you might have, and if you want to PM, you know my username now:)

LegacyUser

I got day 3 & 21 days bloods done in September & my prolactin was quite high - 780 I think. The Rotunda never spotted it the 1st time I went in as they were more concerned about a large ovarian cyst they found, which thank god has subsequently reduced in size.

Went back for my scan the other week & had a different doctor who said my Prolactin was too high, so am in the middle of getting a 2nd set of bloods done (wouldn't mind but I'd spotted that it was too high myself in September due to googling what the result should be). Don't care whats wrong once we get closer to having a baby - about 18 months trying at this stage.

Neyite

trying hard wrote: »

I got day 3 & 21 days bloods done in September & my prolactin was quite high - 780 I think. The Rotunda never spotted it the 1st time I went in as they were more concerned about a large ovarian cyst they found, which thank god has subsequently reduced in size.

Went back for my scan the other week & had a different doctor who said my Prolactin was too high, so am in the middle of getting a 2nd set of bloods done (wouldn't mind but I'd spotted that it was too high myself in September due to googling what the result should be). Don't care whats wrong once we get closer to having a baby - about 18 months trying at this stage.

Hi Trying Hard, I'm the original OP on this thread. I've been where you were a couple of months ago, now I'm on the correct meds to lower the prolactin. I got my bloods done several times, then a transvaginal scan, plus himself got his swimmers tested, they wont put you on meds if his are not swimming in the first place. Once those were ok, I was referred for a HSG and an MRI. The HSG was fine, tubes were good, but the MRI showed a small Pitutuary Adenoma which was causing my high prolactin. Mine had reached almost 900 on some bloods, yet I had no other symptoms and had regular ovulation pain. I was asked by the fertility doc if my cycles were short, so I guess this was a lesser known symptom?

Now I'm on Parlodel 1.25mg twice daily. I was really worried about side effects (thanks, Internet!) but I have had no side effects.

All in all, my second bloods were done in Sept, referred and saw a fertility doc by mid Nov, and all results of scans/tests and on the meds 2 weeks before Christmas.

If you have any questions, please feel free to get in touch.
Neyite.

LegacyUser

Thanks Neyite for all the answers, touch wood I'll be sorted soon.

Swimmers are fine thank got & I got both an ultrasound & a transvaginal scan, which showed that the cyst has gone down & all is fine. Got my 3 day bloods done last week, going to get my 21 day bloods in 2 weeks & am waiting to get a hysterosalpingogram done, hopefully in January. They said it all depends on numbers needing it as they only have a short window of opportunity to do it. Have to ring & book it on my first day! Tried to book it in December, but was the week before Christmas, so couldn't fit me in.

Due back in March for blood results, so hopefully the xray will have been done by then & all will be ok.

Mina24

Hi Ladies,

High Prolactin but never had any symptoms.

My story:

I have been trying to conceive for over a year too, I was always under the impression that once I have unprotected sex I will fall pregnant right away, sadly I haven’t.

At 1st I didn’t think there could be something wrong with me as I never had any health issues, I always have regular period, it comes exactly on the due date which is normally a 31day cycle. I never had another other symptoms that are related to high prolactin levels; in fact I never even knew or heard about this hormone before.

Anyway I got myself into a clinic and got full blood test done, when results came back everything was fine apart from low iron & high prolactin level. My prolactin level came at 906mU/L.

I was referred to an endocrinologist and my appt in on 1st of Feb., the wait is just killing me and I spend so much time reading & trying to find answers.

I have to also mention that I got some wired things happening my tummy is growing!!! Maybe is just my mind playing games, I still eat the same so I don’t see a reason to be putting on weight in fact 2.5 months ago (in October) I was convinced that I was pregnant as I had all the symptoms, brown discharge, tender breast, tiredness etc. Then when I got my period I thought no way( had normal bleeding which only lasted 3 days &then completely stopped, normally it goes away slowly with the last 2 days being light).

To make matters worse last month my period was wired pretty again heavy but only lasted about 1 and a half days & I still strongly feel that there is something very wired going on like feeling so bloated all the time. I don’t know what to expect anymore, I keep on thinking if I had high prolactin for a while then why didn’t I have any symptoms what’s so ever, if it weren’t us trying for a baby over I year I probably would of put of going to see a doc & wouldn’t of found out at all that I had high prolactin.

Has anybody or even someone you know gone through something similar? Could I be pregnant? They say high prolacin in normal during pregnancy…


If someone could shed some light it will be greatly appreciated.

Neyite

Mina24 wrote: »

Hi Ladies,

High Prolactin but never had any symptoms.

My story:

I have been trying to conceive for over a year too, I was always under the impression that once I have unprotected sex I will fall pregnant right away, sadly I haven’t.

At 1st I didn’t think there could be something wrong with me as I never had any health issues, I always have regular period, it comes exactly on the due date which is normally a 31day cycle. I never had another other symptoms that are related to high prolactin levels; in fact I never even knew or heard about this hormone before.

Anyway I got myself into a clinic and got full blood test done, when results came back everything was fine apart from low iron & high prolactin level. My prolactin level came at 906mU/L.

I was referred to an endocrinologist and my appt in on 1st of Feb., the wait is just killing me and I spend so much time reading & trying to find answers.

I have to also mention that I got some wired things happening my tummy is growing!!! Maybe is just my mind playing games, I still eat the same so I don’t see a reason to be putting on weight in fact 2.5 months ago (in October) I was convinced that I was pregnant as I had all the symptoms, brown discharge, tender breast, tiredness etc. Then when I got my period I thought no way( had normal bleeding which only lasted 3 days &then completely stopped, normally it goes away slowly with the last 2 days being light).

To make matters worse last month my period was wired pretty again heavy but only lasted about 1 and a half days & I still strongly feel that there is something very wired going on like feeling so bloated all the time. I don’t know what to expect anymore, I keep on thinking if I had high prolactin for a while then why didn’t I have any symptoms what’s so ever, if it weren’t us trying for a baby over I year I probably would of put of going to see a doc & wouldn’t of found out at all that I had high prolactin.

Has anybody or even someone you know gone through something similar? Could I be pregnant? They say high prolacin in normal during pregnancy…


If someone could shed some light it will be greatly appreciated.

Hi Mina24,
I never got the bloating, but someone else I spoke to with high prolactin mentioned that she has a lot of bloating, so it could be one of the symptoms of it. Until my blood test, I never had an iota of symptoms, except since being on the tablets my boobs dont ache as much as they used to - I put the discomfort down to wearing an underwire, but they are grand now, even though its towards the end of the two week wait and they normally would be sore. I have heard that prolactin levels during breastfeeding reduces the ability to concieve by 90%, so if that level was in my bloodstream all this time, its no wonder i didnt get pregnant.

If i were you, I would go back to the doc and get your prolactin tested. they might do a few blood tests to see if it is still high, and if so, they might refer you for an mri while you are wating for endo. It was the fertility doc that put me on my meds, but why not ask your gp if they can prescribe or if it has to be the endo consultant that does it.

Have you taken a pregnancy test? My periods were regular, but short cycles. It would usually be 3-4 days then almost stop all of a sudden, not taper off. and 26 or 27 days. I hear clearblue tests are very sensitive so maybe best to test with one.

all the best

Baby74

hi Girls,

Cant beleive i found this thread. It's great to know ur not alone.
Im 36 and I've been trying to conceive for over a year. had bloods done and transvaginal scan done in January. The scan was fine but my bloods were not. My prolactin was 1026 (i think i have the highest amoung u LOL) and my LH level was at 2.1 (not sure what that meant). GP is a lady and is expecting but she put me at ease and referred me after my 2nd consultation with her. She referred me to a Gynaecologist & have my app on 23rd March (feels like its forever away but Doc fit me in I could have been waiting til October).
Last week I started Acupuncture and have my 2nd session tonight just hope it helps.
From what I have read online it looks like theres more scans and bloods to be done for me.
Good luck girls!!! and please keep us updated:)
Baby74

Neyite

Hi Baby 74. Welcome to the club

Well, it looks like your prolactin is indeed the highest out of us all! you win a rather dubious prize!

but it can fluctuate. mine went from borderline high to 900, then back down to 600 etc, Its been tested 7 times now and each time I get a different number.

Your LH number is quite low. But that could be tied in with the prolactin as high prolactin can prevent ovulation, as it interferes with the FSH hormone and the LH hormone, both of which relate to the ovaries. It could well be that once you sort out the prolactin, that the LH regulates.

Im the same age as you, and its so reassuring when your Doc doesnt waste time, your referral is not far away if you consider its nearly february, and thats a short month in itself. I'm now on Parlodel as they found a prolactinoma on my MRI, but everything else checked out fine. I read a lot of horror stories about the meds side effects, but I have had none. I feel grand. The biggest problem for me is finding a chemist that stocks the bloody yokes! I had to try 16 chemists yesterday for my refill before one happened to have a half a box for me.

I have my endo appointment at the end of march, so hopefully he can tell me that my levels are getting more normal.

Let us know how you are getting on - there are a few of us here newly diagnosed with it and its all new to us as well.

LegacyUser

Yeah it's really nice to have other people in the same boat, not that any of us wouldn't just off the both at the earliest stage if we had an option.. I find on another site I've posted on, anytime I ask a question, no one answers.

I'm not back in until the 3rd of March for the results of my 2nd round of bloods, so really hoping that my 1st result of Prolactin was higher than normal & that it wont be high this time round. The doc last time said from my other results that I'm definitely ovulating & I always get a positive on the cheap tests, so hopefully thats a good sign.

I work in a hospital though, so at least if I have to get any weird & wonderful tablets, I should be able to get them from our Pharmacy & not have the trouble you have Neyite!

Baby74

Hi girls, thanks so much for your replies.
I've had a pretty bad week, i have been so weepy its unreal and my poor hubby doesnt know what to make of it. have any of you had bad mood swings with the high Prolactin? i know it could be due to the fact that i am due my period around 4th Feb but the crying is just uncontrollable. scary even for me to say. I feel like I will never get home from work today just to give him a huge hug and say sorry.
Hubby is getting checked on Wed so thats another thing off our list.
My GP did second prolactin test and have to ring in the morning for the result. January has been an endless month for me and I think 23rd March to see Gynae will never come.
Neyite, I did hear that if they found something on the MRI that they can be treated with meds so that great that your on the Parlodel and that you have had no side effects. that would be my worry too. Do you mind me asking how long you are trying for baby.
Trying Hard i did use Cl*** Bl** Ovulation kits and found they good but havent used them this month cause we're trying to have some head space from it, but come March i will be trying them again.
Sorry for the rant..... x

Neyite

Hi baby74. Poor you! Hugs!
I dont know if the prolactin causes mood swings, but because it affects other hormones and maybe they in turn cause the moods. I do know that headaches, sore boobs and some girls can feel very uncomfortable with bloating so all that combined with your normal pms, or TTC stresses are bound to make one narky woman. Are you stressed at work or anything? I get seriously misty-eyed and grumphy the week before im due, so it might just be that.

March will be here hopefully before you know it.

Baby74

Good morning girls.
thank god the moods seem to be lifting a little. Thought i was going crazy. Even after years of PMS it never gets any easier! Still dont have my period though but am only due around the 4th. I went home last night, ran a bubble bath and had a glass of wine, hubby just sat and listened to me!!!!

Hubby went to get his manly goods tested this morning so will have those results in about 2 weeks but Id say he's ok. It would make things so much harder i think if he had something wrong.
Have been trying to get Doc over the last few days for the results of my last prolactin, said they would ring me back but havent heard from them, as i type im trying to get them. its so frustrating!

Onwards and upwards girls. x

Neyite

How y'all doing ladies?

I got a pm from someone who is looking for either a GP or Gynae Doc who will do all the necessary referrals for a prolactin issue in Dublin - preferably a female doctor.

She is not trying to conceive so fertility specialists are not really suitable and my doc, while she was brilliant in getting my prolactin referrals and tests in record time but is in Galway so its no good to her.

If anyone can recommend, you can either post on thread (if its allowed in the charter?) or I will happily accept PM's.

Many thanks!
Neyite

LegacyUser

Hi
I am 26 and have been traveling through all this for about 5 years. My prolactin levels in the begining were almost 2000 I had a tuma which was just under 2cm.

I found it after many visits to many doctors with symtoms such as dizziness spots in my vision, milk coming from breasts, sickness and lact of period all together. They discoved endo first then had it cleaned. then pso and then the tuma.

I went on meds which caused a great deals of sickness while they uped them but when i got onto the full level i was fine.

After being on the meds for almost a year we decided to try for a bub ( my levels had droped to about 1200) we fell within a few months. I had my gift in december 2007 and with regular tests found out my levels had droped to around 1000 so was able to breast feed for a year.

I went back on the meds after feeding only to fall pregnant again a few months later. I had my next gift in december 2009 feed her for 1 year and have stoped now to find my levels sitting just over 1000 i have an mri booked and will go back on meds to try for our 3rd bub.

It was all so scary in the begining i had three speacilists telling me i may never have children and now i have 2 wonderful children and have still not had a period since march 2007.

anything is prossible never give up, do lots of research, always trust your gut

good luck ladies

Neyite

Two bubs,

Thanks for sharing your story - since I started this thread, there have been a few of us in the same boat, and one just announced her pregnancy on the chat thread, which is excellent news for us prolactinettes as it gives us all hope.

I have a prolactinoma diagnosed in December and I'm on parlodel for it. though I didnt think I had symptoms but now I'm on the meds I can really feel a difference in my boobs - they dont ache anymore. Also, I used to get a very short LH Surge on my Ovulation Predictor sticks but the last two months its been lasting 2 days instead of a couple of hours.

In a way, I am glad that this is the type of infertility problem I have (ideally would love to have none at all) because it seems so treatable, and there seems to be a lot of success stories that dont require injections or endless trips to the clinic. I got my first bloods after the meds done last week so it will be interesting to see if the Prolactin comes down much , and I have to see an endocrinologist at the end of march.

your tumor seems from what I read seems to be at the extreme end of the scale - and your prolactin levels are off the chart, so if you can have 2 babies with it its great to hear - it gives me hope. hopefully it wont be long before we have our babies.

jez838

Hi Girls

I'm so glad to find this thread. I also have high prolactin levels 1060 the doctor said. I had been TTC for over a year before getting the blood tests. I'm also getting acupuncture.
I'm going to see an endocrinologist in Tallaght hospital on the 28/02/11. Hopefully he'll be able to do something.

Neyite - How were you diagnosed and how long did it take before you were able to start taking the Parlodel?

Neyite - My doctor referred me immediately after the blood test results came back. I live in Dublin. Let me know if you are still looking for this Doctor and I will PM you her details.

Neyite

jez838 wrote: »

Neyite - How were you diagnosed and how long did it take before you were able to start taking the Parlodel?

Hi Jez838,
I first went to my GP in mid July, as we had been trying for a year, with no luck.
My timeline was like this:
15 july, Day 3 Bloods Prolactin at 534 (only slightly elevated)
3 Aug, Day 21 Bloods Prolactin 798
1 Sept, Non specific cycle day 891 - Referred to Fertility Specialist.
Prior to the fertility appointment we had to get the following tests done:
Bloods - Both of us: HIV1 and 2, Hepatitis C, Syphilis
My bloods - Day 3 FSH, LH, Prolactin, Free androgen Index/Testosterone/ SHBG Androstendione and Thyroid Function. (I dont know what half of these are! just copying it from the letter I got)
Day 21 Bloods: Progersterone, Rubella, Smear test
He also had Semen Analysis an hour before the appointment.
19 Nov, Fertility Appointment - All tests fine except prolactin at 969 on 2 November and 750 on 15 Nov. I had a Transvaginal that day and referred for a HSG and an MRI, which took place on the 24th and 25th of November. HSG was clear.
On 3 Dec, the Fertility Doc rang me to say they found a small prolactinoma in the MRI and she would post me out the Parlodel prescription , which I started on 10th December. She also referred me public to an endocrinologist and that appointment is on the 31st March.

So, All in all, it all began on 15th July and by 10th Dec I was on the meds. You may be able to get a referral direct from the GP, which might shave a few weeks off it.

jez838 wrote: »

Neyite - My doctor referred me immediately after the blood test results came back. I live in Dublin. Let me know if you are still looking for this Doctor and I will PM you her details.

Please do, I would be happy to pass it on for you.

PS. forgot to say, My GP mentioned that I could request a CD of the MRI, so I did in order to give them a copy and also to bring to the Endocrinologist. Naturally I had to peek - I dont know if I saw the pitutuary gland or if it was the tumor but it was kinda cool looking at my brain. Himself claimed to be surprised they found a brain, that they must have mixed up the Discs- he he.

jez838

Wow Thanks for the run down Neyite. It looks like you've been through the mill with this. I have normal Thyroid levels. I had them checked a while ago because my sister has Hyperthyroidism. She was told she would find it hard to get pregnant but she has two children now (7 and 8 months).
I only had day 3 bloods done so I guess I'll have to have more tests as well. I'm going to request that I get an MRI to rule out prolactinoma when I see the endocrinogist.

Did anybody ever hear of a link between Aspartame and Prolactinomas. I drank a lot of diet coke when I was in college at night to keep awake. I found the following study on the internet. Anyway I'm steering clear of Aspartame from now on.
http://www.ajcn.org/content/49/3/427.full.pdf

LegacyUser

highpro wrote: »

Hi Coca Cola


I now take a medication called dostinex & since I am on this my levels are at normal.

Hi Highpro...I just did a search for Dostinex because i've also been just perscribed this for high prolactin. Just wondering how you're getting on with it? Any side affects, any success etc? Thanks!

Neyite

Parlodel is working!

last months bloods 126!

highprolactin

Just wondering if anyone can help... I've high prolatin, mri was clear so was put on parladol for 3 months...had my prolactin checked during the time i was on parladol & it came from 1050 down to 79 i was thrilled. However just 7 days after i came off paradol i had my prolactin rechecked & it was 2235...i'm going for another mri this week. I'm really nervous. I had a miscarraige last May at just under 8 weeks & their not sure if the high prolactin levels had anything to do with it. I've been ttc for over 2 years & at this stage i'm really low & my husband doesn't seem to understand. He thinks it will all work out in the end but i'm beginning to lose faith. Has anyone been in a similar situation...or can anyone offer me any advise?

Neyite

highprolactin wrote: »

Just wondering if anyone can help... I've high prolatin, mri was clear so was put on parladol for 3 months...had my prolactin checked during the time i was on parladol & it came from 1050 down to 79 i was thrilled. However just 7 days after i came off paradol i had my prolactin rechecked & it was 2235...i'm going for another mri this week. I'm really nervous. I had a miscarraige last May at just under 8 weeks & their not sure if the high prolactin levels had anything to do with it. I've been ttc for over 2 years & at this stage i'm really low & my husband doesn't seem to understand. He thinks it will all work out in the end but i'm beginning to lose faith. Has anyone been in a similar situation...or can anyone offer me any advise?

Hi there,
I dont think that the prolactin would have affected your MC. While it affects the luteal phase and sometimes implantation, once pregnancy is established then as far as I know your prolactin naturally raises anyway during pregnancy. Dont be thinking that it was something you could have changed - Nature is cruel regardless, and does not need a reason to take your baby away. Dont blame yourself.

If your progesterone is also low on your post-ovulation bloods then they might do further tests to see if PCOS is a possibility. In my case, progesterone was fine so they ruled out that. My MRI showed a prolactinoma, so Im on parlodel for 4 months and counting.

I have been TTC for nearly 2 years now, and I understand your frustration - every month it gets harder and harder to take it on the chin, y'know? My fella is the same - telling me that it will be ok etc, today being the latest time. (period today )

In a way it would be good if your MRI showed something - that means that you have something to fix, rather than not having any answers. I am seeing the Endocrinologist on Thursday so will post again any information I get from that consult. Are you seeing an Endo /been referred to one yourself?

highprolactin

Thanks! I have my Mri tomorrow so we'll see as the first one last june was clear so i don't know what to suspect. My progesterone levels have been checked a few times around day 21/22 & it's been high so that's fine. I got checked for pcos & that seemed okay as well. To be honest at this stage i'm hoping that something will show otherwise i'm at a loss. Good luck with the endo...i'm seeing one too next month

Neyite

Had my Endocrinologist consultation today.

She took the history of bloods - what date the blood was drawn, what level the prolactin was, and what day of my cycle it was on the day the bloods were drawn.

I brought a CD of my MRI, but she didnt need it as it was already on the system. She asked questions such as, if I had irregular cycles off the pill, body hair, weight gain/loss, what age I was when I started periods, I got a breast exam and she checked my visual fields.

In my case she will continue to keep me on parlodel, she explained that bromocriptine is better for ttc treatment, but after I am finished with pregnancies etc then she would switch me to cabergoline (donsinex). As my progesterone and other hormones were normal, she ruled out PCOS.

She said that with a prolacintoma, I would have to see her ever trimester of a pregnancy, and to stop the parlodel when I find out I am pregnant. I am to tell her when I get pregnant so she can begin to monitor me.

So, I am to return in 4 months, if I dont get pregnant. She did say that I am a mild case, my prolactinoma is only 3mm, and as I had very few symptoms, and if the levels are in the thousands then its more severe. She feels that now my levels are normal, that I will either conceive, or the fertility specialist will take the next step in tests.

Highprolactin, your levels and mine seem to be similar, both on and off the parlodel, and like me PCOS was ruled out too. You might be put on it until you get pregnant like me. Might be no harm anyway.

highprolactin

Hi Neyite,

Thanks for the update it's good to know what to expect. I had my mri today so i'll know my results next week. Had my bloods done again on Monday & got my results today still over 2000 so i'll just have to wait & see. It's great that the parlodel is the better one to be on for ttc because i heard the side effects of donsinex were less than parlodel.

Can i ask who gave you your mri cd i asked for a copy today & then said that it would go straight to my doctor. I thought they'd give it to me at the reception.

Thanks

Neyite

highprolactin wrote: »

Hi Neyite,

Thanks for the update it's good to know what to expect. I had my mri today so i'll know my results next week. Had my bloods done again on Monday & got my results today still over 2000 so i'll just have to wait & see. It's great that the parlodel is the better one to be on for ttc because i heard the side effects of donsinex were less than parlodel.

Can i ask who gave you your mri cd i asked for a copy today & then said that it would go straight to my doctor. I thought they'd give it to me at the reception.

Thanks

Mine was in galway, it was private so I guess the least they could do is burn a cd for me. It was my GP that mentioned did I get the CD and when I said I didnt, she suggested I ring them as it would come in handy if I needed to bring it to other doctors. I rang them up and just told them that my doctor told me to get a copy for the specialist, and they posted one out to me, at no charge.

I didnt find any side effects of the parlodel, but I know some do. I take mine after dinner or with a small snack before bedtime. It is strange that with a level like that, they havent kept you on the parlodel. I got my first prescription for 6 weeks, then the next one for a year.

highprolactin

I had a good few of the side effects so i was only put on the tablets for 3 months. But he mentioned that he'd half the dosage & i'd be put on it for 6 months. I'm not what's going on at the moment because my period still hasn't come & this is the first time that it's really irregular...i guess it's because of the prolactin as it's never been so high. I'll know more this week when i get my results!

highprolactin

Hi Neyite,

Just confirmed today that I am 5 weeks pregnant! I'm not allowing myself to get excited tho as I miscarried at 7.5 weeks the last time. I still can't get my head around it because my prolactin levels were so high end of Feb start of March when I came off the parlodoel. The doc explained this morning that the overall figure of 2235 needs to be broken down so that it's not a true figure & although I thought it impossible to get pregnant with such levels that this was not the case.

The downside is I had an mri last Thursday (this also happened to me last year when I was pregnant) I did a test which was negative on the morning of the mri (day 31!) they inject dye as they won't do this if you’re pregnant.

Fingers crossed that this time will work out xxx

Neyite

highprolactin wrote: »

Hi Neyite,

Just confirmed today that I am 5 weeks pregnant! I'm not allowing myself to get excited tho as I miscarried at 7.5 weeks the last time. I still can't get my head around it because my prolactin levels were so high end of Feb start of March when I came off the parlodoel. The doc explained this morning that the overall figure of 2235 needs to be broken down so that it's not a true figure & although I thought it impossible to get pregnant with such levels that this was not the case.

The downside is I had an mri last Thursday (this also happened to me last year when I was pregnant) I did a test which was negative on the morning of the mri (day 31!) they inject dye as they won't do this if you’re pregnant.

Fingers crossed that this time will work out xxx

Oh My God! Brilliant!!! Congratulations!!! You should ring them in the MRI centre to talk about the dye though - I am sure that they err on the side of caution, and it will all be fine. With prolactin, they will monitor you every trimester just to be careful, so make sure you get those checkups too.

My levels are normal again, and have been for months now, so if I dont get pregnant in the next couple of months I will go back to the clinic and find out if there is another reason preventing me.

LegacyUser

Hi...I have high Prolactin level was 56... I had had .2 miscarriages in the past 2 year. I always had a regular period..28 days 14 day ovulation..since being put on cabergoline my period is now 24 days and my ovulation is not consistent.. has anyone taking cabergoline who had a regular cycle but due to it now has a shorter cycle?? Confused..info I'm reading says a shorter cycle couls be due to bad egg quality...thank u in advance for any advice

Neyite

I'm not on cabergoline - they put me on Parlodel (Bromocriptine) as its considered the better one of the two when TTC. I got my dosage increased there last week by an extra 2.5mg on mondays and fridays - I was already taking 2.5mg daily anyway.

my fertility doc more or less assumed that I would have a short cycle with the high prolactin, and I do - its pretty much 26 days with ovulation LH surge varying between 9 and 12 days into the cycle for me. I would guess a short cycle is a symptom of the prolactin level rather than the meds.

I have not heard of a shorter cycle being indicative of poor egg quality. It certainly has not been discussed as a test for me with either my gp, gynae, fertility specialist or endocrinologist. Hmmm. I might add that question to the list. A short cycle is fine I think, as long as your luteal phase is 10 days or more - thats the important time frame to keep in mind.

Is it your gp that is treating you or a specialist?

LegacyUser

Thank you for your quick reply

I have an app tomorrow to check my prolactin levels again...gonna ask about my shorter cycles...I'm 36 sh 38..we havebeen able to concieve naturally in past but no live births..only problem my doctor ( the ART OF MONTGOMERY) HAVE FOUND WAS RAISED PROLACTIN OF 59..SAID NORMAL SHOULD BE BELOW 20...I HAVE HAD NO SYMPTOMS AS I HAVE ALWAYS HAD A REGULAR 28 DAY CYCLE...JUST SOO STRESSFUL AND EXPENSIVE...NO INSURANCE...IT HAS HELPED TREMENDOUSLY READING EVERYONE POST AND EXPERIENCES...THANKS AGAIN...

LegacyUser

Hi, I'm 31 years old and have always had irregular periods but was never given a definite reason for it. I have had a few ups and downs with my prolactin levels over the last few months. I had my hormones checked in November as my cycle had gone very long. My prolactin levels came back at 1200 and the doctor told me it could be stress or a sign of a pituitary tumour but not to worry as they were usually benign! I was then sent away and told to come back in a few weeks for retesting which I did and the level had gone to 750. I was then sent away again and was tested a few weeks later and was told it was at the higher range of normal and nothing more was said about it. I was told it can just happen. I also have an underactive thyroid and that is monitored regularly so when I went my bloodtests last week I mentioned that my previous cycle had been quite long again and could that be a sign that the prolactin levels were up again so they rechecked while I was there. I just got the results from the surgery nurse and my levels are at 1042. My doctor is away for a few days so it will be next week before I can see her. Not looking for medical advice just wondering what kind of questions should I be asking as they seem very laid back about the whole thing. Also, all my bloodtests were at different times of the day and different times in my cycle, just wondering does anyone know if this would make a difference.
Sorry for the long, rambling post. Just typing things as they pop into my head as I'm quite upset about the whole thing. I spent the few weeks around the initial blood test very worried and was so relieved when the levels dropped. No they are almost back to square one again.

Neyite

Hi Anxious,

I had those tests too - my levels were all over the place. I was diagnosed via MRI with a 3mm pituary adenoma (benign tumor) and put on bromocriptine to bring down the levels. last couple of blood tests came back grand. Its very easy to treat.

Its scary to think that there is a tumor in there :eek: but its so tiny and about 10% of the population have them and never find out. I think that sometimes it can be indicative of PCOS which was ruled out for me so its worth asking if there is any connection.

talkin

my prolactin levels on cd 3 were 371 is this normal?

Neyite

Talkin,
I think that anything under 400 is grand. Between 400 and 1000 is slightly elevated, and over that, I think is very elevated.

Certainly my Endocrinologist was happy with my score in the 300s.

worried777

Hi everyone, I am so relieved to have found this website and read all the posts. I have prolactin levels of 1114, only found out coz i missed a couple of months periods which is very unusual for me as I am always very regular, so my gp did some bloods and thats when I found out. I have ben so worried about this, dont know anyone else who has this same problem so very relieved to hear your stories. I am 27 and I am desperate to become a mummy, although we are not actively trying at the moment as we are planning to after we get married next year. I am so worried that this prolactin level will hinder my chances of having a baby. I am being referred to an endocrinologist for further investigations - scared me to hell when GP said about a tumor, OMG I have been so worried. Would be very grateful if someone would chat with me about their experiences....thanks so much in advance ladies xxx

Neyite

Worried777, If prolactin is an infertility issue for you, then at least you can be reassured that its one of the easiest infertility causes to fix. I was actively trying to start my family when I was diagnosed so I considered myself lucky that we didnt have bigger problems, like poor egg quality/ovulation or low sperm count, if you know what I mean, its a much tougher road to achieving your family.

I was diagnosed in November, and the prolactin issue resolved itself in March, so I am considered unexplained infertility, but they specifically ruled out prolactin causing it, as its been normal levels since I went on the meds in November.

Feel free to ask any questions that you have, and I will do my best to answer them for you.

worried777

Thanks for your reply, i do feel reassured knowing that your levels came down so quickly on the medication. What medication are you taking and how often do you have to take it? I am hoping the endocrine consultant will see me soon so i can find out why the levels are so high. I was so worried when the gp said the word "tumour", it instantly makes you think of cancer, so scary. I have been told they are usually benign, have you heard of any that aren't?? sorry for all the questions but all these things go through my mind - so anxious about it all.
Thanks again for sharing your story with me x

Neyite

No Probs - they are all the same questions I had when I was first diagnosed.

I am on 2.5mg of Parlodel (Bromocriptine) per day. I had to have a blood test 5 weeks after I started the meds in my GP's to see if the dosage needed adjusting, but I noticed the effects within days on my boobs - they didnt feel half as sore as the usually did.

The tumor itself is only 3mm big in my case- the pitutuary gland where they grow is the size of a pea. My endo says that 10% of the population have them, they are so common and people have lived and died not knowing they ever had one. I dont remember the stats I came across but it was something like one in every 100,000 of prolactinoma are problematic - i.e might be larger and need surgery (again very standard and successful procedures) but you would have massive headaches and vision disturbances if it was that big, and probably be lactating too. malignant turmors are extremely rare.

worried777

Hi Neyite,

Thanks so much for your reassuring reply feel much better about things now. Still waiting to see the endocrinologist, I'll keep you updated with my news. xxx

Baby74

Just thought Id see how everyone is getting on!!

My update is that I had MRI scan and got the results today, the pituity gland is normal and no sign of tumour. I was so relieved.

I had my first Endocrinologist app yesterday. she confirmed pituity gland normal and have to get bloods done on day 25 which will be next Thurs. The last bloods i had done my prolactin level was at 1500... and I've been taking Parlodel for a few weeks now so im looking forward to getting bloods done next week to see if the level has come down.

the way she has left it was i have to go back to see her in Dec and i am to relax - I mentioned IVF but she said not to rush into anything yet - for someone who is soon to be 37 its a bit awful.
Trying to be positive

any up date girls xxx

Neyite

Just to add in an update for everybody here... I got my positive yesterday .

I have stopped the Parlodel (as per Endocrinologist instructions) and it seems that the second round of Clomid+Pregnyl Ovulation Induction did the trick and finally got me pregnant at the ripe old age of 36.5. and 2 years trying.

LegacyUser

SOOO happy to hear that Neyite! Been reading all this conversation as I begin my wait for an endo appt