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New member saying hi.

PostPosted: Mon Aug 03, 2015 7:11 pm
by member_41961
Hi there, ive just joined up....And I just wanted to inroduce myself.
My name is wayne, im 29 years old and I was diagnosed with a pituitary tumour (in my case it was prolactinoma) when I was 13yrs old and I have been on medication ever since and it seem to be under control now.
But i did struggle terribly when first diagnosed, well who wouldnt when being so young and finding out you have a tumour, especially whilst still in school, it was pretty hard trying to explain away whyI had 2 wet patches on my chest where where the prolactin was leaking due to the tumour, I put on loads of weight rapidly.......... well im sure all of you know the symptoms......etc. but ive just got on with it it still does upset me even now though.
Feel free to say hi... glad im not the only one dealing with this condition, one thing id lilke to know though is if it is still rare in my age because it was at the time I was diagnosed the doctor's said my case was unique!!!!!!!

Re: New member saying hi.

PostPosted: Mon Aug 03, 2015 8:01 pm
by Carl
Hi Wayne, and welcome. I had a Pituitary adenoma removed in 2013, a non functioning one in my case so it suppressed hormones rather than made them - different to the type of tumour you have/had.

It was difficult for me to deal with in my 50's, so must have been very tricky for you at such a young age!

Re: New member saying hi.

PostPosted: Tue Aug 04, 2015 3:27 pm
by member_41961
Thanks for the reply carl it really means a lot.
Yeah i ve had nothing but a struggle with this..,. I have to be honest ive tryed to ignore it up until now as I feel like an alien.... but having looked at some of the posts on here im glad its not just me.
the docs did say to me at the time (when first diagnosed at 13 yrs old ) itll be a case of : as
you go along through your life process and we'll act on what it presents. At the mo all has been good but im suffering a bit of depression at this time and my consultants have asked me about coming of my meds which ive been on cabergoline since day one .......
Ive had a trial off the cabergoline once before but after 6 months the symptoms start to show again enlarged glands in chest.... weight gain etc .....
so how I feel at the mo is:....... its better the devil you know,
shall we say.

Re: New member saying hi.

PostPosted: Tue Aug 04, 2015 8:29 pm
by Carl
Luckily I've had precious few complications after the first 9 months or so, so far at least. But as you say reading these forums certainly makes you realise what a complicated beast the Pituitary gland is, annoying little blighter!!

Re: New member saying hi.

PostPosted: Thu Aug 06, 2015 3:30 pm
by Pat
Hi Wayne

Welcome to our forum; I haven't heard of someone as young as you were diagnosed with a prolactinoma. Youngest female I heard of was around 15/16. However, a lot of us on here are classed as 'rare' so in some ways it's like a special club we belong to.
I would imagine your specialists have kept a good eye on you and your other hormones over the years? You would have possibly seen a peads endocrinologist for diagnosing then transitioned to an adult endo and clinic.

If you'd like any information about hormones which may or not have been affected and any tests you've had over the years, and how you are feeling now, don't hesitate to get in touch with Alison, our endocrine nurse 0117 370 1317 Mondays 10am to 1pm /6pm to 9pm & Thursdays 9am to 1pm, or me we'll be happy to hear from you.