Raised prolactin levels??

[MarsMaiden]

Hello ladies, I am sorry to be statring a new thread again so soon but I am going out of my mind!

We are due to start IUI next month and I had CD3 bloods done last week in preparation. I phoned the hospital this morning for the results and she said that I had raised prolactin levels, she didn't know the exact numbers as they didn't have the paperwork yet but the consultant would have a look and probably ask for a new test. This leads to the first of my frustrations as the likelihood of starting treatment next month is now practically zero as I will have to wait for bloods to be done again!

But worse than that is that I went to my GP in October 2008 after we had been ttc for nearly a year and mentioned that I get milky discharge from both breasts (sorry for TMI! ) and could high prolactin be our problem. They did a prolactin test then and the levels came out at 593 and they didn't do anything because it fell just within the normal levels (up to 600). But of course now I can't help wondering if this has been our problem stopping us conceiving all along and I tried to tell them all that time ago and I have I wasted the last 2 years of trying to have a baby when all I needed to do was shout at them and make them investigate the prolactin further then? I just feel like all the hope and the letdowns every month for the last 2 years could have been prevented, I was always just wasting my time.

All I want to do is cry right now. I tried phoning the nurse at the hospital back to ask if the levels were the reason we weren't conceiving and she made it clear I had to wait for the consultant to take a look and that she just didnt have time to talk to me. So that will be another month before I get a request to go for a repeat blood test, another month or two before I get an appointment to see the consultant and discuss the results and then goodness knows how long before they decide to do anything about it!

I guess this post was more about having a rant than anything else but I am also interested to know how raised prolactin levels affect IUI - can you still have the treatment or do the levels have to be normal first?

Also, has anyone conceived naturally with high prolactin levels? What are the treatments to lower it, is there anything I can do myself?

 

[muncho]

Hi, sorry i cant help with your question but i wanted to welcome and good luck

I had some bad news today so i can understand how you must be feeling

hope you get some answers to put your mind at rest x

 

[helen1234]

hi hunni my fertility problems, try not to worry my level was 300 something when i conceived my son he's just turned one 3 yrs ttc. my highest level was 843
we're ttc again for a sibling for him and got my results back this morning and they were 427 talking to my doc prolactin is very sensitive to stress apparently but i'm going to get a 2nd opinion on it and a repeat blood test next month. i also leak milk and have done all my life

just try to keep calm till you get a proper face to face chat.

i dont know about iui, but i conceived with clomid on the 6 month but it doesnt seem to be working this time round
sorry cant be anymore helpful to you i know how hard this ttc malarki is

 

[babesx3]

Hi i'm not an expert on this. but i had trouble concieving 3rd child. my bloods came back high prolactin too. boarder line too so they didn't do anything. but i was told eating shell fish was good to help bring down. loosing weight if thats an issue. luckily i concieved naturally, before further investigation. good luck getting some better answers XX

 

[helen1234]

Hi i'm not an expert on this. but i had trouble concieving 3rd child. my bloods came back high prolactin too. boarder line too so they didn't do anything. but i was told eating shell fish was good to help bring down. loosing weight if thats an issue. luckily i concieved naturally, before further investigation. good luck getting some better answers XX

ewwwww shellfish why does everything that can help have to be gross or hard

 

[misskat29]

i have raised prolactin

dec 09 - 643
Jan 10 - 1360

saw a specialist today - who i thought would give answers or do something more, but no has just taken more blood.

i'm at a loss at what to do next, so cant give any guidance, just wanted to say i'm in the same place and know its hard. esp when told not to stress. i'm a healthy weight too so loosing isnt going to help (23bmi)

cd57 and no af? dont no when its going to arrive either

 

[pleasehappen]

Hi MarsMaiden,

I had raised prolactin a few months ago, I had 2 periods in 18 months after coming off the pill and certainly wasnt ovulating regularly, thats why they eventually found mine!

I was given bromocriptine to get the levels down and within 3 weeks I had ovulated and was told the prolactin was near normal again.

I got a BFP last month but unfortunately had an early m/c.

Once they found my high prolactin I was referrd to an endocrinologist who deals especially with this, so push for that if you can.

It takes alot of messing around and I had to have an MRI scan just to see if a benign tumour was causing the raised level, it sounds more scary than it is. Generally they can be treated with medication so please try not to worry too much.

Just make sure you keep pushing them on this, I think because its not that common its not always the 1st thing they look for.

Let us know how to get on

xx

 

[MarsMaiden]

Thank you all so much for your responses and positive thoughts!

It's great to hear the positive stories here and that really gives me hope. As always it is just the time it takes to do things that is frustrating, you would think I would have learned some patience by now!

misskat - I can really sympathise. It seems obvious what the problem is, why do they need more bloods? I too am a healthy weight and I know that I wasn't stressed when the bloods were done so it is not down to stress. Luckily I have regular cycles (although they have been very short recently) but it looks like I may not ovulate regularly so I think there is defintely more work to be done. Just frustrating that they have waited this long to start!

pleasehappen - that is great to hear that the levels can be brought back down so quickly and that a bfp is possible although I am very sorry for your loss. I have had the leaking milk symptom for many years, even when I was on the bcp and it never bothered me too much as there were no other symptoms so hopefully there is nothing else really to worry about. If I wasn't ttc, I am not even sure they would do anything at all!

In the end, I have found some PMA and I have decided that I am going to stop being so British and just make a bit more noise about all this! I have an appointment at the fertility clinic on the 17th so will take that as my opportunity to start! I will keep you updated on progress and any other information I come across...

But I have to agree with the shellfish comments - I'm sure they're very good for me but ewwwww!!! Maybe some supplements instead....

 

[3yearsttc]

Hello all! I'm new here, and came in hoping to find some other members with the same prolactin level issues as mine. After living abroad, we've been trying to conceive for 2 years (before this I had two miscarriages about 4 years ago ), then I ran a marathon and took a year off ttc. I went to two different infertility experts, the first wanted to give me a blood transfusion claiming that I had some kind of allergic reaction to my husband! And the second, after making me take many tests gave me 2 iui's and neither of them worked. Now I'm trying a new expert (seems better) and it turns out my prolactin levels were high. I've been taking 1/2 cabergoline pills twice a week for two weeks, and my levels went down. She says I can try iui again during my next period, which is about to start. I'm wondering how long it might take to get pregnant, and whether my original miscarriages could've been caused by this. I also recommend doing an MRI - they found a small tumor in my pituitary gland too, which is important to follow up on)... I can't wait to have a ! All my friends are conceiving and I even convinced my husband to move away with my job to avoid the pressure.

 

[helen1234]

Hello all! I'm new here, and came in hoping to find some other members with the same prolactin level issues as mine. After living abroad, we've been trying to conceive for 2 years (before this I had two miscarriages about 4 years ago ), then I ran a marathon and took a year off ttc. I went to two different infertility experts, the first wanted to give me a blood transfusion claiming that I had some kind of allergic reaction to my husband! And the second, after making me take many tests gave me 2 iui's and neither of them worked. Now I'm trying a new expert (seems better) and it turns out my prolactin levels were high. I've been taking 1/2 cabergoline pills twice a week for two weeks, and my levels went down. She says I can try iui again during my next period, which is about to start. I'm wondering how long it might take to get pregnant, and whether my original miscarriages could've been caused by this. I also recommend doing an MRI - they found a small tumor in my pituitary gland too, which is important to follow up on)... I can't wait to have a ! All my friends are conceiving and I even convinced my husband to move away with my job to avoid the pressure.

:wave: hi hunni and welcome to bnb
i think there's more common to have high prolactin than i thought. it is possible to concieve i have a yr old son so thats proof, i think my levels go up and down
good luck and keep us posted

 

[Mummytofour]

Hi
I'm a newbie here too, but have had raised prolactin for nearly nine years!
It has ranged from borderline to 1800!
I have four kids ranging from nearly ten to nearly 3yo, so my levels must vary month to month.

I underwent an MRI but they found nothing and my peripheral vision has never been affected which can indicate a growth on the pituitary.

The only advise I can give is keep bugging your GP! I booked my own blood tests with the practice nurse, then let the doc know! Cheeky huh?!
At the end of the day, us ladies know our own bodies better than any GP and must insist they take us seriously. If two blood tests show consistent high results, insist on a referral to an endocrinologist as these are the real experts in their field.
I played on the fact that due to my medical history, (pelvic and spinal fracture), I was at increased risk of osteoporosis due to high prolactin.
High Prolactin also causes decreased oestrogen and low progesterone, meaning you may not ovulate and the lining of your uterus may not build up sufficiently to secure a foetus.

I had a miscarriage in Oct 09 due to low progesterone and Doc finally prescribed Bromocriptine in January 2010!! Still not managed to get that BFP but my last cd21 test showed 38 progesterone level which proves I did ovulate!

Just had full bloods done again today to get a baseline reading again for Prolactin to see if all my hormones are okay now....will let you know how I get on.

So....sorry for the long post, got a bit carried away!!! Don't worry about your levels, because with a bit of persuasion from you, your GP can prescribe a number of drugs that will work, although normally it takes 4-6 weeks to get the correct dosage.
I am proof that you can conceive AND carry to term, so don't worry...stress makes it worse!!! Good Luck!

 

[3yearsttc]

Thank you for your answer! It feels like time moves so slowly when you're TTC. How long did it take you to conceive once you started the prolactin medication? It's incredible I've been TTC for two years without knowing. There must be so many people with this issue who don't realize it!

 

[3yearsttc]

I would like to know whatever happened to Mars Maiden. Was she eventually able to conceive?

 

[helen1234]

Thank you for your answer! It feels like time moves so slowly when you're TTC. How long did it take you to conceive once you started the prolactin medication? It's incredible I've been TTC for two years without knowing. There must be so many people with this issue who don't realize it!

it took me 6 months with clomid hun. but 3 yrs to find i had high/raised prolactin

currently my level was 427, is this borderline

 

[misskat29]

Hi,

I posted on here the other day about my raised prolactin levels:

Dec 09 - 643
Jan 10 -1340

When i posted, i wrote telling you how my GP had referred me to a specialist. So i went Tuesday and was really annoyed as all he did was take more blood from me.

So, this morning the specialist called me with the blood results. and you'll never guess what my prolactin is now..............wait for it.......250!!! YES 250!!

I could not believe it when he said. I commented to him how mad it is for that single hormone to fluctuate so much in a space of three months, and he said it is perfectly normal.

The time for concern is when the prolactin remains elevated for months on end and stays up in the 1000's.

What i think i'm trying to say is get your doc to keep track on them, and try not to stress as this has an effect on it (i know its easier said than done, but i was V stressed in Jan when i went for my second blood tests, as i had just found out i have pcos - and look what it did to them!)

Now i just have to tackle my pcos and i should get my bfp again soon.

All the best you x

 

[underthestars]

Thank you! this thread has made me feel so much better. I have high prolactin (760) this is only from one blood test. Having cd21s on monday so maybe will see then.

Anyway I am convinced mine is stress - and that it's the cause of my sometimes (but not always) irregular periods. Doc has been useless on this just saying it is high but has referred us on to the ivf clinic and also me to the obg clinic (which i am surprised is a different place for me) for them to look into it. Had an ultrasound which came back fine. Now having reflexology to calm my sen down!

It's just made me feel ace that people have a) managed to concieve with 'out of range' levels (I was told it would be pretty impossible - which didn't affect our circumstances but was still a little gutting to hear) and b) that you can affect you levels so much.

 

[misskat29]

underthestars - i started accu & refloxology monday. and made me feel loads better. hoping it sorts my cycles and pcos out now.

 

[MarsMaiden]

WOW, thank you to everyone, all your replies have been so helpful!

3yearsttc - I am not sure if high prolactin would have been responsible for your m/c as I understand that it affects ovulation and the ability of the egg to implant, I am not sure what its role is in early pregnancy... Good luck with your IUI, do you have a date yet?

mummytofour - that was great information, thank you! It is great to hear that a BFP is possible even with such fluctuating levels!

misskat29 - that is fantastic news! I can't believe it dropped so low so quickly! FX that this means your BFP is not far away now

My appointment at the clinic is next Tuesday, it can't come quickly enough for me! It is just for injection training for my IUI (although I think that will probably be put off now) but I hope that they will answer some of my questions and I'll find out what the actual level was. I am also going to push to make sure that they get the request out for the repeats so that they can be done on my next cycle rather than having to wait an extra month. Does anyone know if prolactin has to be tested on cd3 or can it be done at any time of the cycle?

Interestingly, I know that I have not ovulated this month and my skin is absolutely horrid with acne, I assume this is as a result of the prolactin and is something I can look out for in future...

 

[Mummytofour]

MarsMaiden good luck with your appointment on Tuesday! You'll be an expert injector in no time!!! LOL!
I asked my GP the very same question re timings for blood tests for prolactin, and he said as long as the lab know what cycle day it was, they can interpret it correctly.
I do however always try to have bloods taken cd3, cd7 and cd21 as I request a full blood screening to rule out probs with TSH, FSH and LH etc...
My MCH and Folate levels were all screwy too, so I believe that just taking one hormone level into account doesn't always give a true picture of whats going on?

A quick update on me I got my prolactin results back on Friday after test on Thursday...down from 987 to 87!!!!!
Even my GP was over the moon!!!
So we've started the already!

 

[helen1234]

MarsMaiden good luck with your appointment on Tuesday! You'll be an expert injector in no time!!! LOL!
I asked my GP the very same question re timings for blood tests for prolactin, and he said as long as the lab know what cycle day it was, they can interpret it correctly.
I do however always try to have bloods taken cd3, cd7 and cd21 as I request a full blood screening to rule out probs with TSH, FSH and LH etc...
My MCH and Folate levels were all screwy too, so I believe that just taking one hormone level into account doesn't always give a true picture of whats going on?

A quick update on me I got my prolactin results back on Friday after test on Thursday...down from 987 to 87!!!!!
Even my GP was over the moon!!!
So we've started the already!

thats fab news
does anyone know what levels should be?