Anyone have high prolactin levels

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

Faithfully

These messages have really made me encouraged firstly to know I am not the only one and secondly to have hope that I can start a family soon. My fiancé and I have been trying for a year and a half without success. Never missed a period in all my life, until last year when I thought I'd finally conceived and actually skipped a month period. Negative pregnancy test. Then went to doctors with general concerns, who took numerous tests and found out that I ovulated a 3 month period! Also he told me that I had high levels of prolactin around 1200 which could be the factor in preventing pregnancy. Had my encronologist appt a month ago and MRI scan two weeks ago. Further blood tests revealed I had the same level of prolactin in the blood and scan revealed 6mm tumour on the piturity gland - which I was told was very small and is quite common - about 1 in 20 people will have it. So I have been prescribed with 2.5 of Bromcriptine to take half every night. I got them today and have already taken the first dose. I have another test due in 3 months to review levels. Hopefully the meds will reduce the levels and I can get on with planning my wedding for June and start trying again next year.

The only thing the doctors can't answer is how and why does this happen and when? Also how soon did you concieve from taking the meds? Once redices can it still increase and can this cause miscarriage?

Neyite

Faithfully wrote: »

These messages have really made me encouraged firstly to know I am not the only one and secondly to have hope that I can start a family soon. My fiancé and I have been trying for a year and a half without success. Never missed a period in all my life, until last year when I thought I'd finally conceived and actually skipped a month period. Negative pregnancy test. Then went to doctors with general concerns, who took numerous tests and found out that I ovulated a 3 month period! Also he told me that I had high levels of prolactin around 1200 which could be the factor in preventing pregnancy. Had my encronologist appt a month ago and MRI scan two weeks ago. Further blood tests revealed I had the same level of prolactin in the blood and scan revealed 6mm tumour on the piturity gland - which I was told was very small and is quite common - about 1 in 20 people will have it. So I have been prescribed with 2.5 of Bromcriptine to take half every night. I got them today and have already taken the first dose. I have another test due in 3 months to review levels. Hopefully the meds will reduce the levels and I can get on with planning my wedding for June and start trying again next year.

The only thing the doctors can't answer is how and why does this happen and when? Also how soon did you concieve from taking the meds? Once redices can it still increase and can this cause miscarriage?

Great news on your diagnosis. Its great to feel like you can do something to fix it. Once you get pregnant its recommended that you stop the bromocriptine (do check this with your doctor though!!) Prolactin increases naturally in all women during pregnancy and breastfeeding anyway, as its purpose is to assist other hormones sustain the pregnancy and produce breastmilk. My maternity endocrinologist told me that my levels (highest at 1028) was not a worry, and only if I started getting lots of headaches or visual field disturbances but they are very rare and usually are only accompanied by levels in the 4000's. Your levels would have to be off the scale to be a risk of miscarriage, 1200 is nothing to worry about.

Exactly a year to my diagnosis I was 4 months pregnant, but I have been told by 2 different Endo's that the prolactin levels returned to normal within weeks so when they started me on clomid in June I suspect that my eggs may have just needed a little help and nothing to do with the prolactin issue.

LegacyUser

It would be good to understand what causes the rise in the first place so that I can avoid or try and reduce whatever causes it to rise? I was told that the levels should return to normal but Engronologist didn't mention anything about a rise again. He more or less indicated that the meds should fix the whole issue.

I personally think its stress related and maybe its a natural reaction to prevent the body from concieving. In my teens and early 20's I went through a lot of emotional stress at home and as a result I stress very easily. But now I'm in a better calmer environment and I know how to de-stress and not worry so much. I eating healthily, exercising regularly, making sure I get lots of rest and sleep and having positive people around me.

In any case my partner and I want to wait a few months so my body can adjust and also plan for our wedding next year June in the hope that I can fall pregnant early next year - also to fill into my dress now that I've bought it.

I do feel so encouraged to know that it can happen aftter months of trying and wasted preganacy tests and watching all my friends around me fall pregnant so easily!

I'll keep you posted!!

LegacyUser

Hi all, I have been having the same problem and am really frustrated, was just two weeks away from starting my IVF, (I am also donating some eggs) had all my bloods everything was fine my doctor told me i had the highest fertility rate she had seen in her time of doing these tests (bearing in mind I'm only 27 and she normally tests older women who often find they have fertility problems, I didn't think I had fertility problems in the first place our problems are on the male side which is why we were going down this route) Any way things looked good was told i had low iron which was expected as i am a vegetarian. then my prolactin came back slightly high bummer, then was retested, this time normal yay, they wanted to retest to confirm slightly high again so they said one more if this one is normal we will start treatment right away (although because I am egg sharing it will take two weeks to sinc my cycle with my recepiant) so I'm all excited then slightly high again should have been no higher that 498 mine was 547 so not to much, so now I have to wait for a referral to a specialist grrrrr, still best its sorted now so i have a better chance of my treatment working first go.
fingers crossed, hoping for baby dust x
Becky xx

scared31

Hi everyone. Early last year i suffered a miscarriage and from then on i did not get a period. After changing my dr i was diagnosed with high prolactin levels. My first test showed my levels to b 1700 then they decreased to 1400 but my latest test showed they have increasing shooting to 2016. I am now being referred to have scans to check for a tumor and even though he explained it wasn't life threatening i was absolutely shattered and so very scared.Its my brain they are talking about! I was on anti depressants for 2 yrs which at the moment believe has helped my high levels to keep rising but i stopped them after i had my mc finding out that it was most likely caused from my antidepressant.(Prozac) I cry over nothin, get cranky over everything and some days i feel like everyone is against me. i thought for so long it was my depression but now im thinkin that they are symptoms of my high levels. Reading all your posts have given me a little bit of relief, just knowing im not alone and there can be a light at the end of the tunnel. Im 32yrs so time for having a just 1 more baby with my partner of 2yrs who has none of his own is slowly running out. I have never signed up for anything like this but i needed to let you all know that this site has given me hope and i have all you guys who have wrote on here to thank for that. I see my endo in a month i would love to keep u guys updated and keep reading everyones progress if you all don't mind.:) Sending all my love xo

lolly29

Hi all just new to this I was diagnosed with an underactive thyroid around november 2011 have been TTC since feb 2011 levels ok now newly diagnosed with high prolactin levels 1730 started cabergoline and after one month results were 530 going for bloods next week so hopefully it will have dropped again mri showed no tumours and everything else in working order. Found the posts really good and hopefull cant wait to see a positive result myself.

louglee

Somuchpain wrote: »

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??

Its good that your now doing better but on the whole in most people high prolactin levels (within reason, really high levels are another thing) are caused by things such as stress, certain drugs, some people just generally have a higher level but when macroprolactin test is done the results show that the prolactin level is fine.
Usually high Prolactin levels cause your periods to stop, its normally produced in high amounts while a woman is breastfeeding, which is why most women find that their periods don't happen or are significantly lighter when breastfeeding.

sinobri

Hi
I had the usual blood tested done 2 years ago and my prolactin levels were normal. Haven't been feeling great in myself for the last few weeks, bloatness etc. Got my prolactin levels checked and they are 1500. yep extremely high so am waiting to get a private apt to get an MRI. So fingers crossed they will be able to sort with medication

fy22

Hi
I am a female and 22 years old and requested a blood test as I have moderate-mild acne, and the blood tests revealed that I have very high prolactin levels ranging from 1000-1800 , I'm very scared and at the moment have no symptoms, I can't stop crying because now I wish i never had a blood test done. Does this mean I have a tumour and I am infertile, I have noticed a change in my menstrual cycle as its lighter than what it used to be a few years ago. Im just so scared . can you help with some advice? i have exams coming up soon too , I'm just wishing i never had a blood test, I'm so scared. Could I start lactating, Im scared even in the shower to wash my chest in case something happens, its just so depressing and having the though of having an MRI scan. everyone here seems so brave. Did you all have symptoms and then get your blood tested?

thanks.

LegacyUser

Hi
Dont worry. I had high levels of prolactin I know I quoted 1800 but was recently in with my doc and said it was 2000, my symptoms were no energy and a small bit of dried in skin on my nipple. I went for an mri on my pituatory and found that I have a 5mm Tumour , I call it a cyst. I just have to go and get an mri done every year for the next 3years to make sure its not growing. Its not cancerous. People are walking around with this and dont even know. Y wont start leaking or anything. so dont worry.
I think personallly that high levels of [rolactin is linked to stress as recently I feel I have no energy and if I squeeze my nibble fluid comes out. So am waiting for blood results and see. Try and do some meditation or exercise to keep your mind off of it. Hope this helps