High prolactin levels

[mrsmesx]

Hi all, does anyone have experience of high prolactin levels?
Since TTC #2, my cycles have been very irregular and either not ovulated or have ovulated late I.e cycle day 21 ish

All cycles have had a 7-8 day luteal phase

I have also been leaking breast milk in my luteal phase (I've never breastfed or had this issue when I was on the pill)

I am wondering if I have a prolactin level issue

Anyoone got any experience?

Not directly but I did leak breast milk after ovulation a couple of months ago. Not quite so strange for me as I had stopped bf half a year earlier (although hadn't previously had any leakage). I'd also just had a MMC a month or so before so wondered if it had been pregnancy related, although my doctor thought it was unlikely due to the gestation I'd got to (milk would come in later in the pregnancy). I've now just had a CP last cycle and after some Googling I decided I wanted my prolactin checked out just in case. I'm actually booked in for bloods next week so can let you know if anything comes of that. I would say it's not a daft thing to go to your GP with though. Good luck! X

I have had high prolactin but didn’t have any symptoms, had regular cycles and was ovulating.

Get your GP to do a blood test and if it’s high then have it repeated and get a referral to an endocrinologist.

Interesting! Keep me posted

I'm scared that if it comes back high I'll have to wait months and months for a referral to an endocrinologist
I was hoping maybe if it comes back high a doctor can just prescribe medication at least while I'm waiting

Was a GP able to prescribe medication? Or does it have to be an endocrinologist?

I had this! I went to the GP, was referred to endocrinology and eventually diagnosed with PCOS. There are different ways of managing PCOS but diet and lifestyle are important, plus then i take a drug that was first prescribed by an endocrinologist but now on repeat from the GP.

Can I ask how long the whole process took?
I'm just really hoping it won't drag on for ages :(

This was 10years ago so i doubt the timeframe is still relevant. Our NHS trust publishes expected waiting times for referrals on the website so might be worth having a look at your hospital?

Once i was in the system, i had blood tests, an internal ultrasound and then an appointment with the consultant and that was it. He basically gave me the diagnosis there and then, and we agreed a plan. If it is PCOS then you might be referred onwards to gynae / fertility for help TTC (i had my first daughter with ovulation induction assistance). Obviously then you end up waiting again but sometimes getting the prolactin levels sorted can result in conception before you get seen by gynae.

Good idea thank you

I'm leaning towards thinking I don't have PCOS as I never had any problems TTC my son who is 14 months old
I was always pretty regular, ovulating around day 16-17 with a 12 day LP

I mean I know you can have PCOS with no symptoms but I'm doubtful.

I'm hoping it's a straight forward fix to be honest!

9 month waiting list. Urgh

Looks like this is going to be a long journey

I didn’t need any medication seeing as it wasn’t affecting me but the endocrinologist would have prescribed. I went private and was seen within a month.

Is that an option for you?

@Pollywoddles thanks for your feedback!
Was considering private yes. I can afford to do one consultation which I will do if it's a case of yes here's some tablets

But I'm concerned they'll say they want X test and Y test which I can't afford and it'll end up being a waste

How many appointments did you find you needed? Do you think they would have prescribed tablets there and then if you needed them?

I had a prolactin test as part of some (private) fertility tests last week. The prolactin came back high, 1300 where normal is up to 500. The fertility doctor immediately referred me for an NHS MRI and prescribed me something to bring it down, one pill a week.

I have no symptoms, and he didn't think it was a major issue for fertility as I'm ovulating fine, but he wants to understand the cause and given it's so easy to bring down there is no harm taking the pill.

That's interesting! Can I ask what private fertility place you are using as everyone I have spoken to have said they wouldn't prescribe anything to treat

Guys and St Thomas's Private Healtchare, which is private but within an NHS hospital so they have all my hospital records and can refer into nhs easily.

Thank you!

Anyone have any idea if a GP can prescribe the medication while waiting on a specialist appointment?

I really couldn’t say, I’m sure they’d have looked for a scan if they thought the high prolactin was down to a prolactinoma.

I had no symptoms and I was pregnant again by the time I saw him so needed no more appointments. My GP referred me just to have that aspect checked and my insurance covered it.

hi@mrsmesx i hope your well. I recently had bloods done after ttc for over 2 years, they stated my prolactin was high just above 1 thousand but all other hormones were normal...they are unsure of the cause so they claimed to have referred me to endocriniology for guidance and advice. I am just sat here waiting, no meds etc. They also kept advising my partner should also get all his fertility checkes before they can refer me on to a fertility clinic. im in my 30s with no kids and dreading the wait but still hopeful will conceive naturally...apparently the increased levels can be caused by stress among other things...i suspect i may have to do a mri scan to rule out tumours etc

@mrsmesx Also i forgot to add my periods have always been regular between 26-28 days but now im late and worried its due to the prolactin level being high. im 5 days late and been having period pains over two weeks if after a week or so af dont arrive ill contact my gp. i did do tests incase but were all bfns.

Managed to get a blood test on Friday and today confirmed high prolactin, doc is putting me on Cabergoline

However can't get it from the pharmacy til cycle day 7

I'm pretty sure I've been ovulating, just late and luteal phase very short

Do you think there's any chance of getting my BFP this cycle? Or am I starting the medication just too late?

@mrsmesx wow gp prescribed meds for you already no further investigation? I asked if I could have meds to lower mine but they stated they needed to ascertain the underlying cause. Anything is possible i think some people managed to get pregnant despite having high prolactin...

I was surprised too, I've been referred for further tests but prescribed meds to lower in the meantime

Op were you later pregnant

I was diagnosed with prolactinoma nearly 35 years ago and was part of the original drugs trial for cabergoline.
There are lots of causes of high prolactin, it can be a result of pregnancy but a pituitary tumour needs to be ruled out. Pituitary tumour can also cause secondary PCOs which I suffered from but had no physical symptoms.
My pituitary tumour has been active from my early 20s and although I was assured that it should resolve after menopause it didn’t.

I would be inclined to have a private consult with endocrinologist. GPs are really not qualified to tinker with endocrine problems.

Other things to be aware of:
High prolactin during pregnancy will significantly increase the risk of pregnancy related hypertension and pre-eclampsia.
Taking cabergoline during pregnancy is discouraged.
Prolactinoms are associated with longterm blood pressure problems and also there is a link with increased risk of breast cancer.

I’m not trying to scare you but my experience of a pregnancy complicated by unexplained hypertension 20 yrs ago and recent diagnosis is of breast cancer have lead me to do some pretty hefty research
My endocrinologist 20yrs ago was fairly certain that my higher than normal prolactin during pregnancy was the cause of blood pressure problems but there was no research available at the time. Mine was 1300+ during pregnancy and because I wanted to breast feed I had to wait until I stoped to go back on cabergoline . It’s a great way to stop supply immediately though. 1300 is far too high during pregnancy to be due to pregnancy alone.
My blood pressure never quite made it back down to normal so endocrinologist prescribed anti hypertensives in order to prevent longterm cardiovascular damage.

Finally cabergoline is a drug from hell. Even after 35yrs of taking it I still have problems with it. I have to time it so that I am not doing anything important for 24hrs after taking it.
It causes an overwhelming tiredness and often dizziness ( twirly wurlys), horrendous reflux and sharp pins and needles in my face/cheeks.
I’m currently taking a break but I know that my prolactin is increasing because of the way I feel. Fortunately my endocrinologist has always been supportive of treating me when symptomatic and allowing me to take breaks.

That's interesting - doc did say I'd have to stop taking it once confirmed pregnant but not about not taking while on it
I've been on it coming up a month and just had repeat bloods and prolactin is wayyyy down so I'm very happy.

Still TTC, no BFP yet but my luteal phase was 10 days last cycle, so an improvement already!

Op I’ve just edited my post.
Be aware that once you stop taking cabergoline your prolactin may rise rapidly during pregnancy. There is evidence that prolactin increases the risk of miscarriage which was definitely my experience.
I would push for an urgent referral if you become pregnant.