Anyone with raised prolactin whilst TTC?

[AlexT221]

Been trying for nearly a year, had repeated blood tests done and I have had raised prolactin for past 3 months. Referred to endocrinologist but have paid to see one privately. Had Mri scan today.
Levels were 661 then 730 and last bloods showed 771.
Just wondered if anyone had anything similar and if they didn’t have a pituitary tumour/growth, we’re you offered medication to bring levels down even if it’s unexplained or to do with stress.
Any info would be great, I’m quickly becoming very deflated and upset with this process :(

I have had a pituitary tumour for the last 15 years. My prolactin levels were 3500 at their highest, they’re now hovering around 900. When I wanted to conceive both my dc I took cabergoline and had regular eye tests to check the tumour wasn’t growing. I conceived my dd within 2 years and my son took about 18 months. When I am not trying to conceive I just take a lower maintenance dose of cabergoline. Ask for a referral to endocrinology. Also check everything else is okay - if you have high prolactin it’s worth checking all your other hormones (thyroid, cortisol levels etc).

Sorry just re read and seen you’re going to see an endocrinologist. I’m sure they will start you on medication.

Even if you don’t have a visible tumour they will still probably give you the medication. Some tumours are so tiny they never show on an MRI.

I had raised prolactin due to stress after being very ill. Had MRIs like you to rule out a growth pressing on the pituitary, I was referred to an endocrinologist, who thought it was caused by stress. I didn't take any medication for it, and after a year it came down. Are you on any medication? Once mine went back to normal it did increase again twice which both times was due to medication Pregabalin and Amitriptyline

@Bagelsandbrie nhs referral not til October! So I went private, just had my mri scan, appointment with consultant next week. All my other bloods came back within normal range. Cortisol normal too. He said thyroid normal. I’m just a bit miffed.
I know my levels aren’t crazy high but it’s going up so I’m hoping maybe he’ll give me meds! I just don’t think I can afford more private appointments

@HotWeather I think Mines going to be stress related too but even when I don’t feel stressed it’s going up. I’m not on any medication and have no symptoms. My progesterone showed I’m
Ovulating and I have a period every month albeit being a few days different every month. Praying for meds and a baby soon

If you’re ovulating every month that’s really good as the main aim of the medication to reduce prolactin levels it to ensure regular ovulation- before I began meds I wasn’t having periods at all. Gradually they went to every 2-3 months and then every 7 weeks ish and then eventually to a regular monthly cycle as I kept taking the cabergoline. Just wanted to reassure you really, already having regular ovulation is really good.

@AlexT221 Let us know what the endocrinologist says. Like Bagels said it is good you are ovulating, I was having periods very rarely. I hope you conceive very soon. It is better to get the Prolactin sorted before you get pregnant though, imo. Best of luck and do let us know what the specialist says.

Yes, me. Went to see endo last week and he said it's not raised enough to justify treatment and I'll just repeat it in 1-3 months or so. The rest of the bloodwork is perfect (mild pcos). I'm worried too...

Thanks ladies!

Do you think it could be fluctuating with stress then if I have no other symptoms really, next appointment is next Friday I will let you know!!

Just want to be a mummy

I also have high prolactin, thought I was actually diagnosed nearly 10 years ago. Been on Cabergoline since then, minus a small break where my prolactin shot back up and thyroid was playing up so now been told I have to stay on the tablets forever (incl pregnancy 😬).

If you've had no symptoms then that's a pretty good sign. My periods stopped and had daily headaches and fainting, though I also had a small (4mm) lump. Cabergoline works pretty quick, I got ovulation pain after 2 weeks then a period 2 weeks after that.

If you are ovulating normally, then they might want to wait a while. Time of day, stress/ fear of blood test, any boob stimulation, what you are can all affect it. My levels were just outside of the normal range but we tried it as I hadn't had a period for 3 hrs. Also, withdrawal from it when you've been taking it for years isn't fun, trust me.