What lead up to your diagnosis of Pituitary tumor?

[crwstar]

Would anyone be willing to share what lead up to you going to the doctor and finding out you had a pituitary tumor?

[North48]

I forgot to add that my fingers are numb and have been for about 6 years like carpel tunnel but that has been ruled out. The dr tried telling me it might be b/c of the weight gain and the wrist have just gotten to fat. LOL I'm not that bad but I could lose about 40lbs and I'm 5'5.

One other thing that has developed in the last 3 months is my neck has gotten large and hurts on the lower left side, on and off. I'm starting to wonder about thyroid. My youngest son has hashimoto and type 1 diabetes.  I have a huge autoimmune family history.

I was checked for RA with an ANA test because my brother has RA and that came back negative.

With all that has happened you would think they might have at some time done antibody tests for thyroid with my history but know one did.  It is finally on the list of test to run in April. I can't wait.

Does this sound like any of you?  The lactating is still going on. It's a small amount and I don't like to check it to often because I guess it stimulates it to continue if you check to often.  Dr's changed my blood pressure med to see if that was causing the lactation (Spironalactone) can cause men to lactate they said. It's been almost 3 weeks and I'm still lactating.

Hope this helps some of you or maybe it helps us all

[SarahB79]

fatigue was and still is a huge issue for me.  Mornings I drag and have a hard time through the day.  Then at night I seem to perk up some.  

My lactation went unnoticed by Dr's for awhile and was totally my fault... see I breast fed my son for 14 months... when I stopped my lactation just never fully went away.  I thought this was normal and would eventually clear up.  It was mostly only small secretions of the milk, especially after hot showers or if I was "checking" to see if it was still there.  It wasn't like I was engorged with milk like I had a new born baby at home.  But this went on for 3 years before I went to the Dr for yearly checkup... and said "oh by the way, I'm still lactating, is it ever going to stop?".  Her jaw about hit the floor. LOL.  

My prolactin was 50.5.  I take cabergonline/dostinex now once weekly and my prolactin last reading of prolactin was under 1.  My previous was around 3.5.  My dr. said in April she would consider lowering me to half dosage amount if my levels were still that low.  I am seeing an endocrinologist at the Cleveland Clinic March 12 for just a second opinion of what all is going on since I have this, Hashimotos, diabetes, PCOS, possible adrenal issues and whatever else.  :-P  

[rumpled]

Your sound like me in 1992. I was fully lactating, but since all my tests were normal except for one slightly off prolactin, I was dissed-missed.
I had symptoms all over the place, but the docs preferred to go by the labs.
I wish now that I had found a more avante-garde doc and been treated in the beginning, then I would not be as disabled now.
Also, I know lab error is a huge factor. If only we knew that are fates were in the hands of lab techs that don't know how to handle our specialized tests. *sigh*. My ACTH swings hundreds of points. Last swing was 800+! The range is only 4-27. How can the doctor can a true idea when that happens? My UFC came out zero. Thank goodness my doctor does realize that I am alive (LOL) and that he should question all my labs in that set.
Fatigue is a biggie.

[crwstar]

Hey - I can relate to the forgetfulness.....true and funny story..... Before my diagnosis I placed the jelly in the mircowave and blamed my partner for the offense. I use to have a razor sharp memory but that's subsided quite a bit. Now I give warnings when I know I'm having a particularly long episode of it. ;-)  Ah yes, and the irritation.....I sometimes use a wii to get some exercise and I box on the wii to release energy.  Didn't actually believe it could be fun but it is a great stress reliever.

How big is your tumor? And what testing have you had? Do you have a good doc?

[crwstar]

We seem to be in the same boat. I got my diagnosis roughly around the same time. I'm going on a year here pretty soon. Are you scheduled for a follow up mri? What's your next step..oh, you may have answered that in the note...*taking a look now*

You know what was essential to me with my docs since they decided my tumor was not the problem. I made sure I walked out of the office with a plan that said, I'd be back in a years time to do another mri to check on the tumor and more blood work. In this way I felt like it wasn't being left to *make believe* land. It is truly beyond me how any doc could assert that a tumor in one's head has no effect.

I'm suppose to be going to the endo again by the end of this month. I have decided to switch docs though and will let you know how the testing goes. I've written down some tests they didn't do last time from conversations on here which also makes me hopeful they may find somthing this time around.

Stay in touch ;-)

[North48]

Fatigue has been a hugh problem for me.  What a originally sent me to the dr was fatigue, weight gain, hands and fingers cramping, joint pain in the fingers, dizzy spells and strange feeling behind the eye. I was sent to an eye dr and he said the eyes looked fine but recommended an MRI just to rule anything out behind the eye.  My gp didn't want to do the mri but then I started lactating.  Prolactin level was in the normal range but she went a head with mri and that showed 3x4 micro tumor.  That was April 08 and they called it an incidental.
So here I am nothing has changed except I don't get the dizzy spells and the feeling in the eye went away.

They will not treat me with anything b/c my blood levels are normal range

[gulfgirl60]

I have had a pitutary adenoma for five years, I am thristy all the time.  I am incontinent around my menstrual period.  It stopped for a year and a half then started up again like a teenager. LOL  I have no energy, I get forgettgful and irritated easily.  I have been diagnosed with thyroid desease since then.  I refused to take the bromocriptine after horrible dizzines.  I feel so exhausted all the time

[crwstar]

I wonder if fatigue is a symptom across the board with all pituitary tumors?

I'm curious, when you all speak of lactating is it a lot or can it be a little. Does this depend on the individual? I wouldn't say that I lactate but I do have minimal discharge on a regular basis.

[SarahB79]

I went to my OB for birth control and to discuss the fact that I was lactating.  They ran a few simple blood tests but only after they put me on birth control.  

The only thing that showed up was insulin resistance.  

I then gained weight, suffered from depression, stopped lactating, severe fatigue, headaches, vision changes, etc.  

Went to endocrinologist about insulin resistance, he ordered a few blood tests and only thing that came back was type 2 diabetes.

Went to second endocrinologist who said "and your still on birth control? no wonder the tests came back with these resuls! Go off BC for 4 weeks and repeat all these tests"  

High prolactin, started lactating again, still gaining weight, thyroid antibodias, high TSH, felt LOUSY.  She ordered an MRI.  Started me on Dostinex and Levothyroxine.

[crwstar]

Thanks enzymelover - what you said is perfect. Every bit counts and has helped!! I am literally sitting here taking notes - so that I can put this into my own words and go into my appt feeling more empowered. I thank you for what you add. You have always answered my posts and I'm grateful ;-) Its been a year now and I am much more equipped and less fearful this go around. This is good ;-)

You take care of yourself and get rested!!

[enzymelover]

Antidiuretic Hormone, secreted from the posterior pituitary, controls thirst and urination.
Adrenal hormone imbalance can cause dry mouth, through sodium regulation.
I know this isn't much info. I'm tired today. My son often has dry mouth.

[crwstar]

I was having headaches everyday at exactly the same time ( this lasted for 11 months)- at night my right eye would droop, veritgo, dizziness...nauseau, forgetfulness. I think the fact that i was having a headache in exactly the same spot every night was very bizarre to me. irregular menses forever ;-) fatigue......It is amazing how many of us must fight to get heard. Being so sore you can't shave must have been quite painful - I've had the normal pms pain which is unbearable but yours sounds worse *ouch*  

I almost forgot, I actually tried to get pregnant for 11 months prior to the headaches starting. Had one miscarriage. They had me on metformin cause it looked like I had PCOS. I had a deep feeling that I was not going to be able to get pregnant and so am pretty ok with the outcome....I just sorta knew it wasn't going to happen. It was more painful not succeeding each month than it was to decide to just stop. Stopping was a smart and healthy decision. I was also on some drug to try and make me ovulate and a few other things.....wondering if those drugs could have added to my current problems.

remember I'm educating myself ;-) Here's a question...I never feel like I'm quite quenched when it comes to thirst. its like my mouth is always dry and I'm not on medication that would cause this...also lately I have this metallic taste in my mouth. I thought it might be the clariten and so stopped taking it last week but its still going strong. Maybe I need to give another week or so to get it out of my system. Even if I drink a lot of water it still seems like my mouth is dry. There is a hormone that deals with water, right? Have either of you heard about this particular effect?

Boy and I talkative today - I'm kind of symptomatic after feeling pretty darn good for a few months and wanted to chat ;-) vision is off, headache, nausea, forgetfullness etc....

Thanks ladies for chatting today - I needed it.

[enzymelover]

  First symptoms were light sensitivity, intolerance to stress, abdominal pain, sinus problems, nosebleeds, symptoms of Sensory Integration disorder, loss of appetite and fatigue.

[rumpled]

I was lactating, and I was very very tired - like I had mono again. The doctor ran tests, told me I had an incidentaloma and told me to ignore it. I had to fight to get the meds to dry me up. I was so sore I could not even shave my armpits. I was also very paranoid, depressed and out of sorts mentally. My period was off but for me, that was normal. I had headaches and vertigo.