Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Anyone had trouble with prolactin levels / prolactinoma?

14 replies

PavlovtheCat · 01/08/2012 06:52

I was going to name change. But then thought. sod it.

Have symptoms that clearly indicate increased prolactin levels. Have had them for months, but due to a back problem my initial contact with gp re this got put on the back burner (me, not doc).

Anyway, gone back, and blood test taken the following day to check prolactin levels. I already knew this would be considered as the symptoms are quite specific and can't really be much else from what I can tell.

I asked gp if it was easy to rectify if it was prolactin problems and she said 'weeeeelll, not really! you will need to see a specialist to find out why it is high, but lets wait and see the results first'.

Can high prolactin be anything other than prolactinoma? Has anyone had/got a prolactinoma? is it really a big deal? i seems to be a pain in the ass, and I am a bit worried I have left it too long. I had suspected it was hormonal due to the symptoms, but thought it would be simple like just taking some pills to kick start my body working properly again. But it seems not Confused.

Also, could the contraceptive implant have had a bearing on this/would it help it was taken out?

OP posts:
Original poster
PavlovtheCat · 02/08/2012 07:57

anyone?

OP posts:
Chaotica · 02/08/2012 18:48

I've had symptoms for years, and nothing obviously wrong with me. My doctors are pleasantly surprised. I hope you find something similar.

Original poster
PavlovtheCat · 02/08/2012 18:59

oh that is reassuring!

OP posts:
Chaotica · 02/08/2012 23:57

Also, if it makes you feel any better, my friend has a prolactinoma (diagnosed by scan) and it's no big deal, in her case anyway.

Original poster
PavlovtheCat · 03/08/2012 07:44

oh that is also reassuring too! I am concerned mostly with the faff of it all and had hoped there would be an 'instant fix' to it all. When it seems there might not be, but rather a long haul of sorting out meds etc at the right levels and all the side effects.

OP posts:
zara206y · 03/08/2012 21:12

I was told that because of my raised Prolactin levels i had a Pituitary gland tumour! After a weekend of stressing and upset...my specialist said its cause i am Hypothyroid. (A condition i was being treated for but crashed so badly that made me have intensive headaches)...discovered that i didnt have a tumour was just due to that. But can also be for other reasons too!

Original poster
PavlovtheCat · 03/08/2012 21:53

zara what treatment did you need for it, to get it back to the normal levels, or did you not need anything additional to the treatment for hypothyroid?

OP posts:
Melodyrose · 04/08/2012 11:07

Hi Pav,

I have had a prolactinoma for many years, it was confirmed by MRI scan. I was prescribed a drug called Bromocriptine and every six months my neurologist would monitor me. About a year ago the prolactin levels started to rise so my drug was changed to Cabergoline which I only take once a week. The doc says I'll probably have it for life but it's no big deal although I have suffered headaches for as long as I remember. The hospital check you twice a year to make sure the tumour doesn't grow but apparently it's teeny, tiny anyway. I don't enjoy the scans particularly but they are done every few years. I was very worried at first because when I was told I had a pituiatary tumour it sounded alot worse than it is. They are benign which is the most important thing. Before I was diagnosed I had trouble conceiving my last child, within a month of taking Bromocriptine I was pregnant! I have always had weight issues and have been told that is a common effect of high prolactin. I hope this has been helpful and that you will be properly diagnosed and treated soon. By the way prolactin levels also rise when you are very stressed or breast feeding.
Good luck
Melody

Melodyrose · 04/08/2012 11:11

Hi Pav,

I have had a prolactinoma for many years, it was confirmed by MRI scan. I was prescribed a drug called Bromcriptine and every six months the my neurologist would monitor me. About a year ago the prolactin levels started to rise so my drug was changed to Cabergoline which I only take once a week. The doc says I'll probably have it for life but it's no big deal although I have suffered headaches for as long as I remember. The hospital check you twice a year to make sure the tumour doesn't grow but apparently it's teeny, tiny anyway. I don't enjoy the scans particularly but they are done every few years. I was very worried at first because when I was told I had a pituitary tumour it sounded alot worse than it is. They are benign which is the most important thing. Before I was diagnosed I had trouble conceiving my last child, within a month of taking Bromocriptine I was pregnant! I have always had weight issues and have been told that is a common effect of high prolactin. I hope this has been helpful and that you will be properRly diagnosed and treated soon. By the way prolactin levels rise when you are very stressed or breast feeding.
Good luck
Melody

Original poster
PavlovtheCat · 04/08/2012 11:38

thank you for posting melody. glad it was quite simple to sort, in time. I am ok with scans, I think. well, i have had one MRI already but that was not on my head so we will see if it needs to happen.

re stress. I have actually been a bit stressed lately, so certainly is possible that this has increased the prolactin, but the symptoms that I have, they most obvious ones have been there for around 7-8 months now I guess. And some of the other less obvious ones have been present for about 1 year +. I had my thyroid levels tested (not indepth, just a normal blood test) due to excessive tiredness and it came back as normal. that and other symptoms (shant' write them all down Wink) were put down as due to being a mother of two young children! but time has gone on and in addition I have more symptoms which can only really be prolactin related. Not sure those ones would be stress related. but I am happy to be wrong as I dont intend to be stressed forever!

Not breastfeeding now, but did until about 1 year ago, just over.

OP posts:
Original poster
PavlovtheCat · 04/08/2012 11:39

and i obviously did not have prolactin probs prior to DS as I conceived immediately after having my implant out last time, whatever is going on has not been longer than 2.5 years.

OP posts:
reshetima · 04/08/2012 21:38

Another reassuring story, I hope: I had a prolactinoma for many years, diagnosed age 30. The symptoms kept perfectly at bay with low dose bromoctiptine (was given too high a dose by GP, but once I was seen by an endocrinologist, this was sorted). Only one scan ever, then annual blood tests to monitor levels. Now in my late 40s and symptoms and levels have both sorted themselves out without any intervention.

reshetima · 04/08/2012 21:39

p.s. I think this was called a 'microprolactinoma'. It is very small, you know!

zara206y · 05/08/2012 14:31

I am on Thryoxine 150mg a day to give me the throxine i need now. BUT i feel shit! I am lightheaded, headachey all the time and its a struggle with day to day. I may go back to doc and tell him that something is not right still. They said to just ignore my prolactin and it should go back to normal, as they also said that my thryoxine levels are not great but basically will do. Erm when i feel like this i dont think so.

New posts on this thread. Refresh page