Pituitary Tumour

neversuitedher

Hey all,
this is my first time using Boards.ie so I’m not too sure if this is even the right place to post this or not.:o Apologies if its wrong.

I went to the doctors a few months ago because I was having headaches, blurred vision and absent periods so my GP took a blood test. I received the results over the phone and was told I may have a tumour on my pituitary gland and was going to be referred to a endocrinologist. As I didn’t have the opportunity to sit down and discus my results I didn’t really know what was going on. One thing I did remember her saying was that my prolactin where “slightly elevated” at over 2,000.

When I got home I frantically searched the web for what I though was a brain tumour and luckily discovered it wasn’t as bad as I first though. Although I did find that my Prolactin levels are extremely high as the normal range is between 25-30. I asked my endocrinologist during my visit but she couldn’t display my results on her computer. I just had my MRI and am waiting the results (nerve-racking). I was just wondering if anyone here has had a pituitary tumour? And if anyone knows if high prolactin levels indicate that the tumour is particularly large or not? Or if this can mean to tumour is either secreting or non secreting? Just a bit nervous about this. Thanks in advance for any replies.
Ps. Sorry to bore you with the long thread:)

neversuitedher

thanks for all the helpfull advice people:rolleyes:

LegacyUser

1stly I've nothing very helpful to say because I've never had a pituitary tumour and I know nothing about prolactin levels. I do know about coming home from the Dr terrified out of my mind and relying only on the internet for comfort or insight into a frightening medical condition.Its a very scarey place to be so I do really feel for you.

I know it's very little help to say that looking up the internet can be the worst thing you can do at times like these but it's true. Until you have all the facts you can scare the life out of yourself reading worst case scenarios and learning little factoids here and there that go on to worry you more. Your doctor will be able to assess everything much better than you are able to.It's terrible waiting but distracting yourself can be the best thing you can do.

I can't tell you many of the details but I actually have 2 friends who had pituitary tumours a few years ago.(yes freaky coincidence)Both were teenage girls at the time and they had odd symptoms like excessive weight gain,acne and loss of periods.(those are the only symptoms that I knew about anyway). One of them had a very bad tumour at the time and after attending her GP for an initial appointment about her symptoms he took blood tests.Once her results came back they called her into hospital that night because her levels of whatever it was were so high. She had an op in Dublin within a day or so of that.They definitely didnt hang around with her or leave her waiting once it was obvious she needed surgery. She said the operation itself wasnt too scarey and I think she was back home within 2 weeks.She had to take it easy after the op obviously and give up hockey and some sport but she had a normal life back again quite quickly and she didnt have the same long recovery time that most brain surgery patients have. Same with the other girl who's condition didnt necessitate such emergency intervention.I hope thats some comfort.Very best of luck with it all. I hope you'll be well soon.

Star Lord

I had a pituitary tumour removed back in 1999. If you check the topic on "Cushings Disease" you can find my full history there.

Long story short: The tumour caused me to overproduce Cortisol, I had the tumour removed and over 9 years later, I'm still here, and doing great.

tbh

neversuitedher wrote: »

thanks for all the helpfull advice people:rolleyes:

I know it's frustrating, but you have to give these things time. If no-one has any advice for you, then that's just the way it is, I'm afraid. rolleyes won't help you

robertbradyjnr

I was always small, had headaches, blurred vision, constantly drinking & running to the loo. went for bloods & cat scan in 1991, and the tumour was found. I was diagnosed with a craniopharyngioma Pituitary gland tumour, that was there from Birth. It had doubled in size in 6months & was as big as two grapes. my pituitary gland and the tumour were rremoved in beaumont Hospital By Dr Rawluk 1992. since I have been taking medication & will be for the rest of my life. If any 1 has any questions please contact me

tbh

welcome to boards Robert, and thanks for contributing. Just to let you know, we don't allow email addresses on thread. Thanks!

LegacyUser

hi all ☺️ first time posting here i was diagnosed with pitituarty gland tumor in june i was suffering bad headaches that no painkiller wud cure i had periods tat stopped nd eye sight blurred i was back in clinic week ago to be told my results of my second scan that i have sinusis that cud be alot do wit my pitituary tumor my prolactin levels was overboard got more bloods done waiting on results was put on dositnex 500mg twice week as u no with fas they want me to work but im not sure weather to work or not can someone help wud i be entitled to disability?? this pitituarty has me bonkers 😡😡