Put my mind at rest - Prolactinoma
Discussion
I've been digging around the internet, speaking to medicos, and need to know that the Prolactinoma my 21 year old daughter has is entirely curable. Any medical types on here care to allay my fears? I'm used to being able to fix anything my kids throw my way, and this has me at a disadvantage. That makes me angry.
I'm sitting here pissed and furious that I can't help my little girl. This time cuddles don't work.
I'm sitting here pissed and furious that I can't help my little girl. This time cuddles don't work.
Very sorry to hear Tunku. I'm not of a medical background but, if it helps, I just had a look at this link. It states it is non-cancerous which may be a good start. It also goes to state that it can be successfully cured.
Here's the link:
http://www.patient.co.uk/health/Prolactinoma.htm
Edit - it doesn't state it can be totally eliminated but have a read of the link.
Here's the link:
http://www.patient.co.uk/health/Prolactinoma.htm
Edit - it doesn't state it can be totally eliminated but have a read of the link.
Edited by TotalControl on Monday 6th September 03:53
Sorry to hear about your daughter. There is a new member who registered on PH just to comfort you/ help you out and because of the rules about the lounge, he won't be able to post here. Here is the link to his thread in the website feedback section.
http://www.pistonheads.com/gassing/topic.asp?h=0&a...
What a great person to register here and help out. Good luck
http://www.pistonheads.com/gassing/topic.asp?h=0&a...
What a great person to register here and help out. Good luck
Hi Tunku, I'm the member that Rodimus mentioned above.
I was diagnosed with a Prolactinoma about 4 months ago, having gone to the doctor thinking I had depression.
Please note everything below is written by a patient not a medical expert, so please don't take it as gospel - just wanted to share to try to help you realise that things are not as bad as they may seem - I was in shock for a good few days when I was first diagnosed, but I reckon if you are going to have a lump in your head, this is the one to have....
I have a Pituitary Macroadenoma, which if prolactin secreting are known as prolactinomas. According to my specialist, they are actually very common, as many as 1 in 5 people have them but they stay so small that they never cause any symptoms. I believe that small tumours are microadenomas, larger ones (like mine) macroadenomas. In about 15 in 100,000 cases they grow to a point that they can cause problems. A key point is that they are not cancerous (i.e. won't spread).
As said, prolactinomas secrete prolactin, which can cause hormonal problems - my prolactin when first diagnosed was 5183, against a normal level of 350. This had caused my testosterone (I'm a bloke by the way) to drop to a level that wasn't even registering.
I saw a neurosurgeon, and an endrocronologist (who I am still under), and they decided to treat via medication. I am on a medication called Dostinex, which is a dopamine agonist (no, I don't know what this means either!), but fundamentally it blocks the prolactin secretion, which in time should re-balance my hormones, and also shrink the tumour.
I have been on the medication for a few months now, and my prolactin is now below 500, with my testosterone starting to recover (still way below normal, but heading in the right direction). Initially the medication made me feel a little nauseous, but these days I don't appear to have any side effects at all, and I can honestly say it has changed my life completely - my wife says she has got the man she married back (my tumour had caused signficant mood changes for me, but over such a long period that I hadn't realised how bad I had got).
There are a number of drugs that can be used, and surgery is a last resort, and in most cases unnecessary - even if they do decide to operate, they can go in through the nose, so whilst by no means ideal, makes it signficantly less risky than other brain surgery (again, so my neurosurgeon told me...)
I haven't yet had another MRI to see if the tumour is shrinking, but I can say that I don't see it as a problem anymore, and that I'm confident that the medication is doing its stuff - the one downside is that I'll probably be on it for the rest of my life, but a small pill a few times a week is a small price to pay.
I'd be more than happy for you to pm me if you'd like to discuss privately, but there is a lot of info on the web - drop prolactinoma into google and you'll find loads of stuff.
So, in summary, it's not as bad as it seems (imho) - in a lot of ways I see my situation as pretty positive - could have been something far worse, and has changed my outlook on life for the better.
I wish your daughter the very best - perhaps we can compare scans to see whose is the most impressive!!
Oh, edited just to add, when I read the results of my MRI, once the shock had settled down, the worst part was reading, 'the rest of the brain is unremarkable.' Well, thank-you very much for that, kick a man while he's down why don't you...
Edited again coz I canna type.
I was diagnosed with a Prolactinoma about 4 months ago, having gone to the doctor thinking I had depression.
Please note everything below is written by a patient not a medical expert, so please don't take it as gospel - just wanted to share to try to help you realise that things are not as bad as they may seem - I was in shock for a good few days when I was first diagnosed, but I reckon if you are going to have a lump in your head, this is the one to have....
I have a Pituitary Macroadenoma, which if prolactin secreting are known as prolactinomas. According to my specialist, they are actually very common, as many as 1 in 5 people have them but they stay so small that they never cause any symptoms. I believe that small tumours are microadenomas, larger ones (like mine) macroadenomas. In about 15 in 100,000 cases they grow to a point that they can cause problems. A key point is that they are not cancerous (i.e. won't spread).
As said, prolactinomas secrete prolactin, which can cause hormonal problems - my prolactin when first diagnosed was 5183, against a normal level of 350. This had caused my testosterone (I'm a bloke by the way) to drop to a level that wasn't even registering.
I saw a neurosurgeon, and an endrocronologist (who I am still under), and they decided to treat via medication. I am on a medication called Dostinex, which is a dopamine agonist (no, I don't know what this means either!), but fundamentally it blocks the prolactin secretion, which in time should re-balance my hormones, and also shrink the tumour.
I have been on the medication for a few months now, and my prolactin is now below 500, with my testosterone starting to recover (still way below normal, but heading in the right direction). Initially the medication made me feel a little nauseous, but these days I don't appear to have any side effects at all, and I can honestly say it has changed my life completely - my wife says she has got the man she married back (my tumour had caused signficant mood changes for me, but over such a long period that I hadn't realised how bad I had got).
There are a number of drugs that can be used, and surgery is a last resort, and in most cases unnecessary - even if they do decide to operate, they can go in through the nose, so whilst by no means ideal, makes it signficantly less risky than other brain surgery (again, so my neurosurgeon told me...)
I haven't yet had another MRI to see if the tumour is shrinking, but I can say that I don't see it as a problem anymore, and that I'm confident that the medication is doing its stuff - the one downside is that I'll probably be on it for the rest of my life, but a small pill a few times a week is a small price to pay.
I'd be more than happy for you to pm me if you'd like to discuss privately, but there is a lot of info on the web - drop prolactinoma into google and you'll find loads of stuff.
So, in summary, it's not as bad as it seems (imho) - in a lot of ways I see my situation as pretty positive - could have been something far worse, and has changed my outlook on life for the better.
I wish your daughter the very best - perhaps we can compare scans to see whose is the most impressive!!
Oh, edited just to add, when I read the results of my MRI, once the shock had settled down, the worst part was reading, 'the rest of the brain is unremarkable.' Well, thank-you very much for that, kick a man while he's down why don't you...
Edited again coz I canna type.
Edited by Barberdownunder on Monday 6th September 08:21
Edited by Barberdownunder on Monday 6th September 08:24
Hi Tunku
Another prolactinoma person here
Female, mid 30s. I can echo the words of Barberdownunder above, having nodded all the way through his post. Mine was diagnosed in 2006, prolactin levels of about 4000. Four years of Dostinex / cabergoline later, and the prolactin levels are below 50 and the tumour itself is now non-detectable on an MRI. So, yes, it's a very treatable condition. I've to keep taking the cabergoline for about another year and then will be stopping it to see what happens.
I found the Pituitary Foundation a really worthwhile source of info, and very supportive too if you or your daughter need to speak to someone: http://www.pituitary.org.uk/. As above, feel free to PM me if you want to know more, or happy to share info here.
The main thing for me was that once people realised it was non-cancerous, they quickly lost interest and couldn't understand why something like that could have a psychological impact on your life, especially if you were totally unused to being ill or having a medical condition. Hope your daughter is ok
Another prolactinoma person here
Female, mid 30s. I can echo the words of Barberdownunder above, having nodded all the way through his post. Mine was diagnosed in 2006, prolactin levels of about 4000. Four years of Dostinex / cabergoline later, and the prolactin levels are below 50 and the tumour itself is now non-detectable on an MRI. So, yes, it's a very treatable condition. I've to keep taking the cabergoline for about another year and then will be stopping it to see what happens.I found the Pituitary Foundation a really worthwhile source of info, and very supportive too if you or your daughter need to speak to someone: http://www.pituitary.org.uk/. As above, feel free to PM me if you want to know more, or happy to share info here.
The main thing for me was that once people realised it was non-cancerous, they quickly lost interest and couldn't understand why something like that could have a psychological impact on your life, especially if you were totally unused to being ill or having a medical condition. Hope your daughter is ok
I love PH!
PHers may be a bunch of piss taking b
ds, but when needed they come up trumps! 
Thank you all so much for the information, especially from those of you with the same problem. I wish you all the best. Haven't had news yet of an MRI scan, daughter is having to wait for word from the hospital. It is a relief to learn it is not quite as uncontrollable as I first though.
I may ask more questions later if I may, but for now I'm just trying to let my daughter know we are all behind her.
Thank-you.
I may ask more questions later if I may, but for now I'm just trying to let my daughter know we are all behind her.
Thank-you.
Barberdownunder - totally agree on the hugs thing! General understanding and lots of patience means a huge amount. You sound as if you're being well looked after - a good endo is worth their weight in gold.
I have my 6 monthly check up on Thursday to see if it's come back any since I reduced the cabergoline by two-thirds earlier this year. Keep fingers crossed!
I have my 6 monthly check up on Thursday to see if it's come back any since I reduced the cabergoline by two-thirds earlier this year. Keep fingers crossed!
Barberdownunder, I have just seen you other thread on Feedback. Sorry I never noticed sooner. Thanks for the effort you made. As Stuart said, it is very well appreciated. Incidentally, my name is Stuart too, so Stuart, many thanks from this Stuart.
c8bof, Thanks for your input too, between you and Barberdownunder, I feel a lot better, and so does my daughter.
Hugs do help a lot, but you know what I meant. A few weeks ago, before all this came up, my daughter got this -
His name is Stig, he belongs to my daughter, and he is a perfect excuse to go and see her. I've had dogs and kennels all my life, but managed to marry someone who is allergic to dogs. Luckily my daughter takes after me.
c8bof, Thanks for your input too, between you and Barberdownunder, I feel a lot better, and so does my daughter.
Hugs do help a lot, but you know what I meant. A few weeks ago, before all this came up, my daughter got this -
His name is Stig, he belongs to my daughter, and he is a perfect excuse to go and see her. I've had dogs and kennels all my life, but managed to marry someone who is allergic to dogs. Luckily my daughter takes after me.
I mean no offence when I say that this thread has made me smile.
PH is indeed a font of knowledge and I hope your fears are somewhat alleviated and I hope your daughter ( and the other two sufferers) make a good recovery.
P.S I hope the MRI scan goes well for you c8bof
ETA: Just saw it's not an MRI but you get the idea
PH is indeed a font of knowledge and I hope your fears are somewhat alleviated and I hope your daughter ( and the other two sufferers) make a good recovery.
P.S I hope the MRI scan goes well for you c8bof
ETA: Just saw it's not an MRI but you get the idea
Edited by Ross1988 on Thursday 9th September 06:10
These symptoms sound very much like things I experience which makes me wonder...
Would this be something that would usually be looked for in a standard pituitary and/or testosterone test following an endochrinologist referral? Or could you reasonably have both tests and it slip under the radar?
Another Stuart.
Would this be something that would usually be looked for in a standard pituitary and/or testosterone test following an endochrinologist referral? Or could you reasonably have both tests and it slip under the radar?
Another Stuart.
Just glanced back in here and found a pic of what's possibly the most gorgeous puppy in the world 
I make no excuses for turning into girly mush and squealing!!
To the first Stuart, just noticed you're in Fife - don't know what hospital your daughter is being looked after after, but I think the Western in Edinburgh have a support group based there with some knowledgeable folk from the Pit Foundation in attendance.
To the second Stuart, good luck on your pit journey
To the third Stuart (!), pituitary problems can be notoriously difficult to diagnose - again, can't recommend the Pit Foundation highly enough for advice - keep plugging away at your GP with symptoms. Some GPs will never deal with a pituitary condition in their career, so they aren't all used to it.
Looking at the above, I can see why I got tagged as Little Miss Busybody at work today - must learn to shut up sometimes, LOL!
I make no excuses for turning into girly mush and squealing!!To the first Stuart, just noticed you're in Fife - don't know what hospital your daughter is being looked after after, but I think the Western in Edinburgh have a support group based there with some knowledgeable folk from the Pit Foundation in attendance.
To the second Stuart, good luck on your pit journey
To the third Stuart (!), pituitary problems can be notoriously difficult to diagnose - again, can't recommend the Pit Foundation highly enough for advice - keep plugging away at your GP with symptoms. Some GPs will never deal with a pituitary condition in their career, so they aren't all used to it.
Looking at the above, I can see why I got tagged as Little Miss Busybody at work today - must learn to shut up sometimes, LOL!
Stuart (no. 3!), mine was identified pretty much becuase my GP had the insight to have a discussion with the Endo that she worked with whilst training, who (luckily for me) has a particular interest in Prolactinomas, so suggested the MRI. As I said above, originally went to her with depression - if she hadn't suggested the blood tests to make sure there was nothing else going on I might still not know. Even then it was only because she had the foresight to talk to the Endo...
Blood tests will be the first indicator though, as they will identify Prolactin and hormone levels - again, assuming they test for the right things (my first blood test did not test for prolactin levels, only testosterone - it was the Endo that suggested testing for Prolactin). Of course there could be lots of other reasons for how you feel, but the right blood tests will be able to help the medicos look in the right directions.
I feel lucky to have the GP I have; I reckon a lot wouldn't have suggested the blood test ('to make sure there is nothing physical causing this' in her words), and would have just treated the depression.
Best of luck getting yourself sorted.
Blood tests will be the first indicator though, as they will identify Prolactin and hormone levels - again, assuming they test for the right things (my first blood test did not test for prolactin levels, only testosterone - it was the Endo that suggested testing for Prolactin). Of course there could be lots of other reasons for how you feel, but the right blood tests will be able to help the medicos look in the right directions.
I feel lucky to have the GP I have; I reckon a lot wouldn't have suggested the blood test ('to make sure there is nothing physical causing this' in her words), and would have just treated the depression.
Best of luck getting yourself sorted.
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