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High levels of Prolactin?

(16 Posts)
mangobrain Fri 12-Aug-11 17:06:30

Hello

I've been having blood tests to determine whether or not my hormones are preventing me from getting pregnant. All came back normal apart from my test for prolactin which came back high. Doc barely said anything and has booked me in for another 5 bottles of bloods. :-(

I've read that high levels of prolactin are normally found in pregnant or breast feeding women. Which I am neither.....

Wondering if anyone else has this high level of prolactin and what caused it? Also is it linked to not being able to get pregnant.

Thank you

HarrietJones Fri 12-Aug-11 21:13:55

Don't suppose you are on anti depressants?

It's a rare side affect which I had. Unfortunately I was bf at the time & it wasn't good!

mangobrain Fri 12-Aug-11 21:56:40

No I'm not on any medication at all so it's very confusing. Been googling it for the past hour or so and I read something about brain tumours...so I've stopped and will just let the doc figure it all out! confused

HarrietJones Fri 12-Aug-11 22:20:19

Google+ medical issues = death . Every time!

higgle Sat 13-Aug-11 18:49:51

Could be Prolactinoma? Where the Prolactin producing bit of the pituitary enlarges in size, squashes the bits that produce all the other hormones and things so they don't work too well. My son had this, though it is far more common in women. If that is what you have they prescribe medication to reduce the size of the overgrown bits and usually everything else then reverts to normal. ( it did take my son over 3 years for this, but it usually works much more quickly than that).

HattiFattner Sat 13-Aug-11 18:52:23

i second a diagnosis of prolactinoma...very common - estimated 1 in 5 people have it, but only a few show symptoms.

A1980 Sat 13-Aug-11 23:35:38

Been googling it for the past hour or so and I read something about brain tumours...

It isn't a brain tumour, it's a pituitary adenoma called a prolactinoma. I have one. It causes high PRL levels as does PCOS, stress, etc. High PRL causes irregular periods: do you have those.

You also haven't said how high the PRL is. Anything under 1000 isn't clinically significant.

A1980 Sat 13-Aug-11 23:39:48

i second a diagnosis of prolactinoma...very common - estimated 1 in 5 people have it

Where on earth are you getting that information from HattiFattner? Prolactinomas are actually quite rare. My endo told me that about 1 in 10,000 people have one. My GP has never even seen one before mine and he is in his 40's and has been a doctor for over 20 years.

I wish people would get their facts straight.

higgle Sun 14-Aug-11 08:56:46

I saw this information too - it comes frompost mortems on people who died of other causes ( I thinkiit is on the Pituitary Association web site) If it never causes you any problems then your GP won't ever know. It is very important to get a formal diagnosis if you have symptoms as the pressure on the optic nerve as the prolactinoma grows can cause blindness. I saw the results of my son's scan when his consultant went through the tests with us and you could just see this about to happen - the pressure on the nerve, as it was just abutting. Agood point that GPs don't often see this, my son only got his tests organised after the GP said he didn't think anything was wrong and then added as DH and DS had got as far as the door "I suppose blood tests wouldn't do any harm...." Provided it gets treated promptly it is not too serious ( though my son went through a reversal of puberty and had to take a full set of synthetic hormones for 3 years, which is not nice, aged 16)
Hope all goes well for you OP

Grumpystiltskin Sun 14-Aug-11 17:06:39

I have high prolactin levels and am about as pregnant as my husband. Gives me the worst night sweats but nothing can be done apparently.

I know this doesn;t help you OP but prolactin!! AArghh!

emeraldgirl1 Sun 14-Aug-11 17:35:09

Hi, please don't panic about this OP! I have high levels of prolactin - you don't say what yours are but mine were over 100 - and had very irreg periods for years and years. Several GPs sent me away telling me it was stress before one finally listened and sent me for tests. I have a prolactinoma - I have heard it's very common too and second what A1980 and higgle have said! Reading about it coudl sound scary because it's technically a 'growth' but my (lovely) specialist was kind and kept referring to it as an 'overactive pituitary gland'. This is really all it is. Yes, the pituitary is near the brain and yes it is a growth but it's NOT anything sinister. If left untreated it could - I repeat COULD - like higgle says, press on the optic nerve and cause problems with sight. But think it woudl have to get quite large for that to be a problem and it sounds as though you are getting this treated now.

Can you get your GP to refer you to someone (endocrinologist or gynae) who can do an MRI scan? I was terrified of this as am so claustrophobic but it was really fine and was the thing that picked up the image of the pituitary gland having something on it. This plus all the endless bloods was enough for a diagnosis of proloactinoma. There are - as far as I know - 2 drugs you can treat it with - I am on one called Cabergoline which apparently is easier to tolerate than the other drug. It used to be thought that you couldn't/shouldn't take this while pregnant/trying but according to my specialist the view on this has changed. The drug is very effective, I had minimal side effects (tummy ache etc) for a bit, and within 4-5 months my periods had gone back to normal and my prolactin levels were normal too. I did ocme off the drugs but pretty quickly my prolactin levels shot back up again sad so I am back on them.

The main thing is, don't panic and don't worry that it's something scary and sinister. I think it really is quite common and there are ways to treat or just monitor it. Push your GP for a referral if you can! Good luck!!

emeraldgirl1 Sun 14-Aug-11 17:41:01

sorry - I meant to say my levels were over 1000 - over 100 is totally normal!! blush

A1980 Sun 14-Aug-11 21:45:40

Lol emerald girl, I thought you were using the American scale for measuring prolactin which comes up lower.

Anything under 400-500 is normal. 500-999 is elevated but not clinically significant and not something that would be treated. Mine was about 2000. But treatment was very effective and it's fine and normal now. Treatment has to be continued for years thoguh.

To clarify the "common" thing, high prolactin levels are common and this can be caused by a number of things. Actual prolactinoms are not common.

HattiFattner Mon 15-Aug-11 07:39:10

A1980, the autopsy figure indicate that 6-25% of the U. S. population have small pituitary tumors. But the clinically significant ones account for c. 14 in 100,000.

I didnt just suck this information out of my thumb, thank you.

higgle Mon 15-Aug-11 07:41:18

My son tell me his reading was 10,000 - ever likely he was having nasty symptoms.

A1980 Tue 16-Aug-11 23:19:59

A1980, the autopsy figure indicate that 6-25% of the U. S. population have small pituitary tumors. But the clinically significant ones account for c. 14 in 100,000.

Hattifattner you said in your earlier post that 1 in 5 people have prolactinomas. That is wrong. The autopsy figures quoted above are a catch all for all pituitary tumours. You didn't acknowledge in your first post that only 14 in 100,000 are significant you simply said that 1 in 5 people have prolactinomas. That's just scare mongering. True prolactinomas are rare. Non functioning adenomas are perhaps common.

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