how dangerous is a pituitary gland tumor

[adamqball]

Hi my name is Adam and joined this group to get some info on what people have had to deal with having a tumor on their pituitary gland. i have felt unwell for over 4 months i have zero energy my arms and legs ach like i have just done a workout and i am allways short of breath my legs and thumb twitch and the left side of my forehead is numb. My gp told me i just had a virus and it would pass then he thinks there might be a problem with my heart and sent me to hospital in a ambo then the hospital telling me there is nothing wrong and its all in my head and getting their ward psyc to see me and telling me i am suffering from depression and trying to give me meds for it and now 4 months down the track i went to see a endo chrono something sorry my spelling is real bad anyway he sent me off to get a mri and some blood tests and said if it all looks normal he would just refer me back to my gp and today he called me and told me i have a tumor on my pituitary gland and he wanted to see me next wednesday after my blood tests come in. I was a work when he called i was so shocked i just walked out to my car and drove home to try process what i was just told and i will admit it i was in tears i was real scared i am still scared i am the father of 3 young girls and i havnt told them i dont think i will they will freak i told my wife and she is freaking out i feel a bit better after reading posts on this forum but i still know so little about whats going on and whats going to happen

[rumpled]

There are long waits even here in the US...

Pituitary tumor is pretty general - what blood tests were done and what kind do they suspect? There are many kinds. Do research and make sure testing is done accurately as well as getting a good quality MRI.

[adamqball]

Hi colleen what sort of symptoms do you have ?. i was thinking the same as you at first its just part of getting old or having a few gps telling you its all in your head im so glad they put 2 and 2 together and worked out what is going on with me.

2 months is a bit long to wait colleen sometimes i think that is one of the hardest parts of being sick is waiting to see what the doc has to say

[colleen1970]

Hi there, I'm in oz (Sydney) i just got told i have a pituitary tumor only last wednesday,its so hard to know what you actually have as now reading all this info on the net i have symptoms i put sown to getting older etc but they all fit in together ..... is going to be a bit of a wait for me as the specialist i was refered to has a two month waiting list arghhhhhhhh

col :)

[rumpled]

I am being checked for carcinoid or Nelson's syndrome. I have a lot of muscle weakness - diagnosed with myasthenia gravis etc. I had Cushing's disease and a prolactinoma and it took over 12 years to get diagnosed so it took a toll on my body. Oddly my test results were never that high but my bones are all beat up and my muscles are too. So walking, standing etc. a problem. I have had 12 operations so far.

Bali sounds nice!

[adamqball]

Why can't you travel sorry I have been so caught up with my own health problems that I don't stop to think about others are you ok sorry to hear you can't travel i hope I pick up I'm ment to be taking my wife and 3 daughters to Bali at the end of the year anyway I hope it all works out for you mate and you get to travel and do all the things you want to :)

[rumpled]

My dream is to visit oz one day! Maybe that will happen... but I am not in shape to travel at the moment... dang.

[adamqball]

Thanks again rumpled you are a great help here if you lived in oz I would love to shout you a beer or coffee for all ur help thanks :)

[rumpled]

You can usually call, if you live in the US, the place where you got the imaging 24 hours after the scan and ask for a report and they will either mail or you will have to pick it up.

Before you get the labs - ask for a copy. Then they can put it on the order. They don't always come so I leave the office with a copy.

Size is not always the factor here (alas) in pit tumors - it can be 3mm and putting out hormones like gangbusters. Also it can be sitting on a portion of the pituitary where it is interfering with other hormones. The MRI co-pays bite.

[adamqball]

Well I could not wait to see what my endo has to say on Tuesday so I have done alot of reading and feel a bit better after doing so. I think my tumor is anterior because it's affecting my trestoserone and there is a good chance that it's macroadenomas because I have numbness on the left of my forehead and the tumor might be putting pressure on cranial nerve 5 which supply feeling to the face. So my guess is they will try and shrink it and then watch and see what it does and put me on a testosterone replacement program or shrink it and remove. I'm still not sure what drugs they will use to shrink the tumor and what side affects they will have I have not reached that part in my research is there anyone on here that knows about this?
So any experts on this subject tell me if I'm on the right track here or have I got it all wrong

Cheers
AdamQ

[adamqball]

I got to speak to my endo today when I called to see if my blood tests were in and I asked him about the size of the tumor and all I could get out of him was it's not overly big and that it's blocking the production of testosterone so I will ask about it again on Tuesday when I see him I don't like the vague answers from him it's my head and I want to know what is going on in there and I am the one that had to pay out $ 590 for the MRI I want some answers

[rumpled]

Make sure you get copies of all your tests - then you will know what kind of tumor you have.

[rumpled]

The twitching etc is probably stress. Hormonal issues usually cause fatigue. depression, libido, skin and issues like diabetes and effect other hormones - so it can effect your entire body and it can be subtle or in your face.

As for the eye - there are certain types of eye docs called neuro-endos that you should see so you can get a baseline visual field and a good exam of the optic nerve.

[adamqball]

Hi thanks for your reply the doc didn't tell me alot apart from I had a tumor and he was waiting for some blood tests to come in and in the meantime I am left to worry and I feel my symptoms are getting worse my thumb won't stop twitching my left forehead is numb and I see black floating things in my left eye and it's happend 3 times in the last two days when I get up and start walking I start turning right it's the strangest feeling I just turned into the wall ? Anyway I'm going to my gp today to talk to him about it as I am worried about it nut it's prob nothing

Cheers
AdamQ

[rumpled]

There are different kinds of tumors and they can vary. You have to get more blood work and a proper pituitary MRI (dynamic technigue).

Depending on the type of tumor, some can be treated using medication. Some require surgery. Either way, you should go to a neuro-endocrinogist at a pituitary center so that you get the proper diagnosis and follow up. I would also get a copy of all the tests and imaging so that you know and read up just to make sure the doctor is doing the right testing at the right time (duds are everywhere ) so you need to be on top of what is going on.

You did not indicate the size of lesion noted in the MRI report or anything from the blood tests so it is hard to comment any further. They are 99.9% benign - the effects come from hormones or if they are large - mass effect.