Pituitary Tumor Support Group

Hi everyone!

Ive been having bowel problems for a year now and have just been discharged from the gasterontology clinic as they cant find anything. In the mast four months i have start lactating (im 21 and on no medication that has this side affect) , a loss of peripheral vision, hot flushes, violent mood swings and severe migraines. Im exhausted and finding this so difficult. No one understands what its like being in constant suffering with no diagnosis.

My GP told me i may have a prolactinoma and i saw the endocrinologist on thursday, they didnt seem to fussed and told me as i had an MRI in may for a seizure disorder it would likely have picked it up then and so its unlikely i have a pituitary tumour. I really want an answer and my symptoms certainly fit.

Has anyone else had similar problems with diagnosing or anything they can relate to? Has anyone had to push to be really evaluated properly?

xx

Hey hannah2e,

Yes! I have been trying to figure out what is wrong with me since I was about 15. I am also 21. I don't have lactation or loss of peripheral vision, but I have hot flashes, very violent mood swings and headaches, along with a long list of other symptoms. I have been to my family practitioner, a gynocologist, 2 weightloss clinics, a naturopathic hormone doctor, a urologist(for my kidney stones), and 4 endocrinologist. I changed doctors because some didn't have an idea or said there was nothing wrong with me, a couple gave me diagnosis that I knew were not right, and one just told me not to eat chocolate and drink more water haha. The endocrinologist that had me get an MRI said there was nothing to worry about, although you can clearly see on my MRI that there is a growth on my pituitary gland. The last endocrinologit I went to said there is definately something wrong and now I am waiting for a referral to a neurologist. It is frustrating to have symptoms a 21 yr old should not have. You just have to be very persistent and remember you are in control of your health care. I have had to really push to be evaluated properly, and change doctors more than once and maybe be a bit demanding and persuasive And I am still in the process of getting fixed. I hope you make progress soon, I understand what you are going through. Here is a video and site that I thought was interesting pertaining to getting diagnosed. http://www.hormones411.org/mambo/index.php? option=com_wrapper&Itemid=187

Hang in there and keep trying. I hope soon you find a doctor who you trust and can diagnosis a final conclusion.

Keep asking questions.

terry

I just found out I have secondary adrenal insufficiency (my pituitary does not make ACTH)It took me Many doctor visit before I was taken seroiusly.I had to reasearch a lot of my symptoms on my own. I was just told over and over I had anxiety when I knew that was not the case. Be persistant in finding the answers. If you don't agree with the answers your doctor gives you, then get another answer/ opinion. I will be getting a Pituitary MRI soon. Also, a BRAIN mri is Different than a Pituitary MRI which focuses only on the Pituitary region and surrounding tissues I believe. They were not going to do an MRI for me until I told them about my bad headaches, pupil changes off and on, blurry vision and off and on loss of peripheral vision as well... It sucks, but hang in there. Again, if you don't like the answers from the doctor, do what I did an get a new opinion. I actually researched my endocrinologist before I went to see him and he and his staff have been great and take this stuff very seriously. waiting on insurance approval before I can have my MRI. I had a Brain MRI, but again a BRAIN Mri and PITUITARY Mri are different.

Several scary questions:

Had a macrodrema removed early nov. from my pitiuary & the recovery is so slow.most of th e time I'm tired.

1. eyes are worse than 'fore surgery, blurred & they hurt but what can I do without using my eyes. docs say that when th e inflammation of the brain goes down it'll improve - does anyoone know how long this takes> docs doont commit.

2. incontinence- it's so bad now, I'm in pampers. I fought so hard against this. Iiiii use a nasal spray to control but it has to be used cautiously max twice a day.

3. unquenchable thirst - I just drink & drinkkkk & this makes the above prob worse bu t I cant control; the thrist.

4. alsmost daily headaches, maybe cos I use my eyes but what can I dio?

docs say I'm progressiing welll but no one tells me when these symptoms will stop; I'm only told that I shldn't stress so much. can anyone not stress when they have to wear pampersto prvent dripping???

Pls someone tell me they had similar symptoms & hey al went away with theinflammation of he brain.

pls excuse mistakes, I cant see very well.