High Prolactin?

[CareBear]

Hi Ladies

Its been a long time since I posted here and not much has really happened to me apart from finding out that I have high prolactin levels which could be and likely to be, impacted on my fertility. I'm on cabergoline 0.5 mg twice a week and I was just wondering if there was anyone else who has or had this? I'm really hoping this is it and I will finally get a but I also know what my luck is like and I still won't be able to get pregnant so I'm trying to be positive and realistic really!

Some support from you lovely ladies would be lovely and I hope everyone is doing as well as possible at the moment

CB

 

[ashknowsbest]

Hi! I had bloodwork done about 3 months ago in at my OBGYN and they said I have high levels of prolactin so they referred me to a FS. He then ordered an MRI of my brain and they actually found out that I have prolactinoma. I pretty much in not doctors terms, have a benign adenoma on my pituitary gland that is causing the raised levels. It's nothing that's really that scary as it's actually pretty common. I think I read somewhere that 1 in 1,000 adults .. mostly woman have this and it's monitored and they put you on medication. Sometimes they do surgery or radiation but that's only if you experience visual disturbances from it.

I wouldn't worry too much about it, I've heard that a lot of woman can get pregnant they just have to be monitored closely because I also read that prolactin suppresses progesterone, which you need a lot of until the placenta can take over!

Well that's all I know, but like I said lots of woman get pregnant with this problem as it's so common.

Good luck and baby to you!

Do you know what your levels were ?

 

[Amber3]

Hi there
Funny enough, about 3 months ago I had a blood test which included prolaktin. It came back high. I went to a gyn who immediately prescribed me pills to take 2 times a week and told me to go to a brain scan as well. Anyways, I went home and read about it on the internet and asked around and a doctor friend of mine told me that really one test is not enough to tell. So I did not take my pills but waited one month and had another prolaktin test made. And guess what, my prolaktin was completely normal.
Sometimes I really think that this whole field is totally crazy.
I wish you all the best
Amber

 

[ashknowsbest]

Prolactin levels always fluctuate but if you have an adenoma you should definitely be on the medication because they don't go away by themselves.

 

[CareBear]

Hi! I had bloodwork done about 3 months ago in at my OBGYN and they said I have high levels of prolactin so they referred me to a FS. He then ordered an MRI of my brain and they actually found out that I have prolactinoma. I pretty much in not doctors terms, have a benign adenoma on my pituitary gland that is causing the raised levels. It's nothing that's really that scary as it's actually pretty common. I think I read somewhere that 1 in 1,000 adults .. mostly woman have this and it's monitored and they put you on medication. Sometimes they do surgery or radiation but that's only if you experience visual disturbances from it.

I wouldn't worry too much about it, I've heard that a lot of woman can get pregnant they just have to be monitored closely because I also read that prolactin suppresses progesterone, which you need a lot of until the placenta can take over!

Well that's all I know, but like I said lots of woman get pregnant with this problem as it's so common.

Good luck and baby to you!

Do you know what your levels were ?

Thanks for this, I had an MRI scan which came back clear but my levels are still high - been tested 3 times, last time levels were 975, time before that was 1270 ish - so not majorly high but the endo guy said they were high eneough to need treating. I'm being treated for a micro prolactinoma as something has to be causing the high prolactin levels and these can exist but not show up on an MRI scan. I'm not worried about was just wondering if anyone else had this and were willing to share so thank you for replying

Thats really interesting that prolactin surpresses progestrone as that is what has always come out low and the FS said this just shows I don't ovulate. I though there had to be a reason for this as my LH and FSH come out at good levels. The high prolactin now explains it all especially as I believe I've had two chemical pregnancies in the past when I've had clomid. I've read a few stories that people couldn't get pregnant, found out they had high prolactin levels, started meds to reduce them and then got pregnant quite quickly after taking the meds - I'm trying not to get my hopes up but its so difficult not to get excited again with a glimmer of hope after having virtually accepted it wasn't going to happen for us.

Thank you all for replying, if anyone else has any stories they would like to share I would love to hear them.

CB

 

[ashknowsbest]

If you don't mind me asking, how are they treating your high prolactin levels?

 

[izzy29]

Have u had your thyroid checked? I thought I had read somewhere there was a connection between pro lactin and thyroid levels but I could be wrong

 

[ashknowsbest]

Don't know if you're asking me or the original poster, but I have had my thyroid checked and that is fine.

 

[Redfraggle]

Hi Carebear! Good to see you around, it's been a long time. Hope you are ok.

No advice or help I'm afraid. But really hope that this works for you. Been a long time and you really deserve it.

 

[CareBear]

I'm taking cabergoline to reduce my levels.

My thyroid has been tested a number of times over the years and been fine, its not been tested recently but I think the plan is to take the meds for three months then re-test and see if the meds have worked, if they haven't I guess they will then look at other possible causes - I have another appointment already arranged for three months time.

 

[ashknowsbest]

I'm taking cabergoline to reduce my levels.

My thyroid has been tested a number of times over the years and been fine, its not been tested recently but I think the plan is to take the meds for three months then re-test and see if the meds have worked, if they haven't I guess they will then look at other possible causes - I have another appointment already arranged for three months time.

are you having any side effects on the medicine and what dosage are you on ?

just curious because if I'm not pregnant this cycle I have to take dostinex which is the same as cabergoline...and im nervous about it

 

[threebirds]

Hi ladies, sorry for asking a stoopid q, but what levels are considered normal & what high for prolactin? Thanks xx

 

[CareBear]

Ash - I'm on 0.5mg twice a week so a pretty low doseage. I'm getting some side effects but nothing major - tiredness, feeling queasy, feeling a little dizzy and a bit of a stuffy nose - nothing that can't be lived with. I find the side effects are worse a day of two after I take the pill, I take mine Monday and Thursday evenings so I find Tuesdays and Fridays I feel the worst. You are advised to avoid alcohol whilst on these as it makes the side effects worse but after doing some reading and experimenting last week I can get away with a glass of wine on a Saturday night. I have found though that my desire for wine has gone which is good as I wanted to cut down on how much I drink! We're also meant to be using contraception for the next three months.

Threebirds - normal for prolactin is 0 - 500, if your level is only slightly over this its nothing to worry about as stress can increase prolactin slightly and levels will change a lot as well. Mine were 683 then went up to 1270 ish within about 6 weeks and 6 months later they were 975 so still high enough to need treating.

 

[ashknowsbest]

Ash - I'm on 0.5mg twice a week so a pretty low doseage. I'm getting some side effects but nothing major - tiredness, feeling queasy, feeling a little dizzy and a bit of a stuffy nose - nothing that can't be lived with. I find the side effects are worse a day of two after I take the pill, I take mine Monday and Thursday evenings so I find Tuesdays and Fridays I feel the worst. You are advised to avoid alcohol whilst on these as it makes the side effects worse but after doing some reading and experimenting last week I can get away with a glass of wine on a Saturday night. I have found though that my desire for wine has gone which is good as I wanted to cut down on how much I drink! We're also meant to be using contraception for the next three months.

Threebirds - normal for prolactin is 0 - 500, if your level is only slightly over this its nothing to worry about as stress can increase prolactin slightly and levels will change a lot as well. Mine were 683 then went up to 1270 ish within about 6 weeks and 6 months later they were 975 so still high enough to need treating.

Thanks for the info! I'm on .25mg once a week. My doctor suggested taking it Friday night that way if it makes me feel crappy it'll be over the weekend. I'm happy to hear that your side effects aren't unbearable. After reading about the medication and some of the side effects people experience I was petrified! I hope my side effects are as calm as yours to deal with!

Anyways, thanks a lot, I appreciate the information.

Oh and my doctor told me and my OH that we can keep trying while taking it. My levels were at 50 the first time they took it and 35 the next so they're not very high at all.