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]

You should. This is a long old post and mixed stories. It would be easier to find yours and only yours if your posted in a new thread.

[Circleooo]

I
Half of my adult life I had low tolerance to pain. moody uncomfortable in my skin. I kept getting addicted to pain meds and was told a bit of hypochondriac. I recently was asked by my urologist to take a brain MRI he felt I may have a pit... tumor. sure enough 4mm tumor. I get the strangest ailments. body cramps, bone pain, sinus issues, numb feet, vertigo, E.D on and off. Moody, hot and cold body feelings, and enlarged breast that shrunk after a month of Caber..... and  Endocronologist put me on cabergaline and Anastrozole due to hormone ranges. Also am anemic, low b12. low vitamin D. I need to find out is this a root cause to many of my medical issues. Can they rid me of this. should I seek top notch Doctors. My Endocon... is very good. seems to be very interested, caring  and on top of his game.

[rumpled]

I am so sorry! You have not found the right doctor. It has happened to so many of us - myself included. The size is not the factor, the hormones it secretes IS - so you have the MRI to show something is there - but do you have copies of the testing? I know my prolactin was only slightly abnormal so it was dismissed (as in, only a little off was not good enough to cause bilateral lactation, it could not happen yada yada so my symptoms were ignored for my tests were not considered to match my symptoms!!!) so you have to get copies of everything - tests, MRIs, MRI reports etc.

You have to find a NEURO-endo. Neurologists cannot and do not treat pituitary. Even some neuro-endos are duds - so you have to be persistent. BTW lactation can be thyroid and other hormones as well - so you have to get a LOT of testing to know what is really going on. So make sure you have the proper source.

You also may need a neuro-optho, not just a regular eye doc.

[Shannonrae2190]

I just joined this forum desperate for help and answers! I started lactating in both breasts a year and half ago.  I was confused because I had never been pregnant I have horrible anxiety, panic disorder. Mood swings, Vision problems, headaches, low blood sugar and super fast metabolism. I have been seen by two endos, a neurosurgeon, eye doctors, internal medicine, psychiatrists.. it is frustrating.  I had an MRI done March 2012, and it showed "Small ovoid focus of slightly diminished enhancement along the left aspect of the pituitary gland measuring 3 x 4 mm." Also, "Tiny 2mm punctate focus of gliosis left frontal subcortical white matter" All of my bloodwork has been normal, I was told I had a "freckle" on my brain. The symtoms have not subsided, and no one wants to help!  Some have referred to this as a tumor others a freckle?

[rumpled]

You need to see an endocrinologist to get the right testing. If you have a known pituitary tumor then get to a pituitary center for a neuro-endo so you get the proper care. Not all docs are super tho so get copies of all tests and read up so you know if the care is on the spot or you need to move on.

You need a lot of testing and it can depend on symptoms plus it cannot be done once.

[funnygirl64]

What tests should I ask for as I am having the same issues.

[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?

[rumpled]

Your case is not identical to my case. There is no saying that the doctors would be the same to you and hopefully they would have learned something over the years.

Giving up, well, means only getting worse. I have tried that. It is hard to move forward. I know. Sometimes you just have to take baby steps, as one wise Cushie once said, but just to keep moving sometimes is all you need.

Guys with hormone issues are more rare - you may get more attention.

[testdeprived]

buut yeh at 19 this is hard for me.

[testdeprived]

well youve been to all of the doctors  i would go to, and they've yielded you no results. im very symptomatic and the headaches are a pain the butt. but if no doctor wants to help me what can i do.. last time  i checked my adenoma was 2mm in size at most so no   one will help me i font think lol.s

[rumpled]

You are not alone in being told to see a shrink - actually it is well documented that pituitary tumors cause emotional issues.


There is a book out called Emotional Aspects of Pituitary Disease (Psychotherapy & Psychosomatics Ser. 3) (sadly sold out) but I have seen pit tumors noted in even regular books on emotional problems.

So it is your doctor that is missing out on a big clue, a hint, a symptom! OOOH!

I actually took the advise and went to the shrink - or at least a counselor. Most of them are smart enough (not all) to know that if you have a pit tumor, and you have issues, that many of them stem from it. Some of the meds can be supportive, but they can interfere with the testing so it is trade-off.

In my case, my guy nixed the MD and said my issue was physical, not mental. In my tumor twins case, she got labeled bi-polar, got on nasty meds, and is still having trouble getting treated as they still think everything is mental even though she has had all the same issues as me (and believe me, they are physical) but they play down the mental ramifications. Expletives deleted.

My advise - find another doctor.

[testdeprived]

i thought id update you guys. i saw the endo and he told me to see a shrink. i have since not gotten any treatment for my tumor, and i am having comprehension issues in school that i feel are from this tumor. i just wish someone would help me with this lols.

[North48]

Which tests pinpointed your problem?

[testdeprived]

by glad  i mean im glad that your test could pinipoint the problem!

[testdeprived]

im glad that the tests showed that your pituitary was malfunctioning. i dont know what ill do if my hormones come back normal. ill be very upset. i feel like sung the **** out of the neuro surgeon for being an idiot though hahas.

[jessssssster]

Hey I'm not really familiar with your med history but I have high hopes that you'll go through with seeing the Endo. The neuro's AND endo's also told me that my 3mm tumor was irrelevant to my symptoms, but after pushing for tests the data showed a dangerously malfunctioning Pituitary..  I would've never found any peace of mind if I hadn't found help here in the forums, and the encouragement to see the struggle through. Be sure you've got good vibes being sent your way :]

~Jesse~

*if you could use suggestions for specific lab tests to request, I know SOMEONE here could help w/ that!*

[testdeprived]

YES!!! i have had all sorts of symptoms and both the neuro  surgeon and the neurologist said that my 2mm tumor was just an incidentals finding. i know theyre wrong but i dont knwo what im supposed to do now. i have an endocronologist appoitment in may 30th but thats not gonna help so why bother with.

[North48]

I'm  so sorry to hear about the arteriovenous malformation. I know nothing about it but maybe if you post a question in the forum someone might know something. What is an MRA and what is arteriovenous malformation and what causes it? Sorry to sound so dumb but i'm just trying to learn too. I can totally understand why you are scared I would be too but the more you learn about it the less anxiety you will have "I think". I'm always here if you need an ear or a shoulder to lean on.

I wish you well and Thanks for updating me.
Take Care,
Care

[Frances133]

I just wanted you to know I had an MRI and MRA done.  I have to go see a neurosurgeon because the MRA showed that I had a condition called arteriovenous malformation that needs taken care of.  This is what has been causing this whooshing sound in my left ear and all the headaches.  The neurologist informed me that there is a risk of having a stroke with this kind of surgery.  I'm really scared.  It doesn't help when anxiety takes over either.  If you have any information about this condition please let me know.  I really appreciate your concerns.  Thanks.