has anyone been told the pituitary tumor is an incidentaloma

[North48]

I have been having all kinds of symptoms like -
Carpel tunnel, weight gain, fatigue, blurred vision, nipple discharge, muscle cramps, eye pain, missed periods
They finally did a MRI and found a 3x4mm pituitary tumor.  They checked all my hormones and they were all normal even the prolactin was at 20 in March 08 and in May 08 was down to 12.  The Dr said this was a incidentaloma and my symptoms are most likely "menopause".  I am 48 yrs.  Next week I will go for a MRI because it's been 6 months and they will recheck the hormones again.  My new symptoms to add to the list are headaches,loss of pubic hair (not all but 1/2 at least) sore neck, sinus drainage, dizzy.  Does any one else have these symptoms and been told it's an incidental?

[rumpled]

I lactated fully in both breasts with a normal level - or even just a barely abnormal one. That caused the doc I saw to say mine was not a prolactinoma (j#$k) and say it was incidental as his rationale was it was impossible for that level of blood test to have full lactation... bah! Turns out the tumor that they were looking at was Cushing's anyway and the tumor causing the lactation was hiding on the other side.

He even went so far as to adjust my records to say I did not lactate - even though he saw it with his own eyes - but he felt my blood tests did not support it! Labs trump real symptoms - never went back again.

[North48]

When they discovered my pit tumor my prolactin level was at 20 and as you said in the normal range for a non-pragnant female however I still lactate. The levels seem to have fallen the last 2 times they have tested it at 10 and 16 so far all in the "normal" range.

From my own expirence I'm starting to believe that the pituitary can cycle or have waves  of functioning well and then not functioning.

I'm seeing a new endo riight before x-mas and maybe I'll find out more or something will finally show on the tests

I'm going to keep plugging away at this until I find the answers

I think I'm starting to forget what normal is and maybe that is good.

[SarahB79]

My first reading of prolactin was over 50... and my dr. started treatment for a prolactinoma by starting me on dostinex.  I hadn't even had an MRI confirm it when she started treatment.  That said... when I went off the dostinex about 8 months ago to see how the tumor was responding and if the prolactin would go back high, it only rose from 3 to 14.  14 is still within range of being a non-pregnant female, however I was lactating again at that level.  

Basically... your dr. is wrong.  You don't get a tumor on your pituitary gland that causes NO problems at all.  Find a new Dr.  :-)

[rumpled]

Yes. I have friends that are much more up on the tests, the latest medical studies, clinical trials etc. than I am - and all I learned from being sick is that if I did not learn, that there was no way I was going to get diagnosed.
I learned from others - just paying it forward.

[ZeeIn]

Do you ever feel we are much more educated than our doctors since we have to research so much to figure out what is "really" happening to us when they are so ready to dismiss?  It is so exhausting.   Reading these posts make me feel some relief knowing many of us are going through the exact same thing.  

[testdeprived]

i think if  i ever do decide to go to another doctor,  iwill print this forum page out. although i doubt it wil lserve much help, since doctors are convinced they are always right. it also really frightens me that mayo clinic, which is considered the best clinic i nthe world was of no help[.

whats everyones opinions on st judes?