has anyone been told the pituitary tumor is an incidentaloma

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?

[crwstar]

Hi, I wasn't told that mine was a incidentaloma but I think by the way the doctors have responded that its what they think it is because so far I too have been told it isn't the cause of my symptoms. I think for a lot of us that some of the first doctors we see our of the group that believes the size of the pituitary tumor dictates whether or not its the cause of your symptoms, most doctors fall in this group. My last neurology appt I asked her which group she fell into and thankfully she was honest and said, she believes tumor size dictates symptoms. She's a good doctor but will not be the one I see for the pituitary tumor. There's way too many of us with the same symptoms for this to 100 percent be the case.

If I may suggest or ask - are you working with doctors who have experience with pituitary tumors?

All the best to you.

[enzymelover]

   How the tumor affects your hormones would also depend on it's location on the pituitary, not it's size. Various areas of the gland are responsible for specific hormone signaling.

I think more experienced doctors would not be so quick to say the tumor is not causing your symptoms. Did they actually tell you your eye pain and blurred vision were menopause symptoms?

I wanted to believe my son's symptoms were just allergies; fatigue, eye pain, sinus drainage, stiff neck, nausea. Alas, it was a large pituitary cyst.

I believe your symptoms are from the tumor.

I wish you the best.  (And a great doctor, too)

[Super_sally888]

Hi,

I guess I'm in the same boat.  I have a 5 x 5 mm pituitary microadenoma.  

I am told it is too small to cause symptoms (though I was on bromocriptine for a while to reduce high prolactin levels - currently pregnant - probably as a result of the bromocriptine).

I also have thyroid failure (unknown cause) and now diabetes - no family history, plus all sorts of weird allergies.  My TSH does go up if I get very hypo, but generally is very very low while FT3 and FT4 are normal range.

My endo says I don't have any symptoms that would be related to or explained by the pituitary findings, so no testing on that.  I really don't know!  Maybe it is incidental.

Apparently pituitary adenomas are pretty common (often found during autopsy or MRI for other reasons) and often don't cuase problems or symptoms...

Best regards

[North48]

Hi - Thanks for your respond.  My internist is the one that called it a incidential  but the endo was very careful with her words but she did want to wait and see what happens in 6 months.  Thank you for the info I'm very new to this and not sure exactly how all this works on the forum so bare with me and hopefully I'm  in the right spot.  This has given me some good questions to ask.  

[crwstar]

No problem, I think everyone here has different levels of experience with this. You are in the right place for asking questions and getting support for sure. We are all at different stages with it. Mine was found in Feb of this past year along with a aneurysm of all things. My pituitary tumor is about the same size as yours. Even the endocrinologist who specializes in pituitary tumors said, Its not the cause of my symptoms so, I am in a place where I am regrouping and figuring out what my next step is.  

Enzymelover made a very good point about location of the pit tumor. From her point you have some good questions to ask.

All the best.

[SarahB79]

I agree with super sally... my MRI officially didn't even find a tumor, but my Dr. (endocrinologist) is still treating it as a tumor.  I am taking Dostinex once weekly for the prolactin levels and this is supposed to also shrink the tumor.   Like Sally, I have developed a thyroid condition, Hashimotos, as well as diabetes and high blood pressure.  

My symptoms were lactation, fatigue, headaches, irregular periods, hair loss, drastic vision change, depression, etc.  

I met with my primary yesterday and he said that "anytime there is a problem with the pituitary it messes just about everything else up".  

Stay strong and postive, you'll get it figured out. :-D

[rumpled]

I was told my 5-6mm pituitary tumor on the left side was an incidentaloma in 1992. I was lactating fully out of both breasts, but oddly, my prolactin was only slighly elevated. Rather than take that as being odd, it was dismissed.

I progressively got sicker throughout the years. I was regularly told it was just a thyroid issue (I did have nodules, hashimoto's and am hypothyroid) yet that was very hard to regulate as well I had PCOS and endometriosis. I did not heal.

Finally, in 2004, at double my body weight, after diet pills, anti-depressants and acne pills all failing, I was diagnosed with Cushing's disease and a dynamic MRI found the second pituitary tumor on the right. That one was the prolactinoma. The one on the left was the Cushing's disease.

Nothing at all was incidental. Now, for not having been treated (but badly) for all those years, I am disabled and on SSDI. I have no more thyroid, ovaries, adrenals and half a pituitary. But 98% of the endocrinologists I saw felt I was just fine. Go figure.

[North48]

Were your cortisol test levels always high and what test did they run to find it? On my tests they did blood cortisol test and it came back a little elevated so they did a 24 hr test urine and that came back normal.  What other test should I ask for?

Thanks for your time

[rumpled]

My cortisol was up and down.  I was cyclical and that is part of the reason that is took so long to get diagnosed.
However, I did find out that in later testing with a better doctor that I was high at night and very low during the day so the 24 hour tests averaged out. But the 10 hour urine tests would be high as those would test only the urine from 10pm to 8am. Midnight salivary tests did better for me.
Have you had your DHEA sulfate tested, ferratin, vitamin D, and all your other hormones checked from thyroid to male/female  - all of them.
I had a lot of doctors dismiss me on normal tests even though some were abnormal even though if you looked at me, I was plainly and obviously sick - but they would tell me to come back in 6 months. I got so mad I would just say why - just to get sicker?

[North48]

6 months ago I had thyroid TSH, FT4, LH, FSH, Estradiol, IGF-1, prolactin, PM Cortisol, Free Cortisol urine, corticotropin (is this ACTH?) all came back in the normal range.  They did a 25-Hydroxy D total which showed a deficiency.  Ferritin was normal and so was Folate and Vitamin B12.

Now when I went back 2 weeks ago they did another MRI and that showed the tumor had not changed and the only hormone test that they did was prolactin and Vit. D, I only know this because of the bill I received I don't have the full report yet.

My question is do you think it is wise to wait 18 months to check my hormones again?  When I left, the dr said I didn't need to return for another year but that would make it 18 months before they would check the hormones.

I'm still lactating from both breasts and the answer they gave me was possible fibroids (spelling?) or my blood pressure meds have Spironolactone which has been documented to cause lactation in men.  So if I'm still lactating in 2 months I should call and they will change the blood pressure med and see if that will stop it.

Thanks for all your support

[AGHDman1]

I am so glad I have found this forum. I was beginning to think I was crazy. From a person who has had years of exposure to the healthcare field (I have been a pharmacist for 21 years) it has stunned me as a patient to see how many gaps in medical knowledge there are, especially in the area of endocrinology. I find it difficult to believe, in view of this,that a rational endocrinologist would completely rule out our microadenomas as being a cause for our hormonal symptoms when no other cause can be found.
Has anyone else been tested for growth hormone deficiency? I ask,not only because this is the area where my health and insurance problems are currently focused, but also because I find that the need for growth hormone in adults is poorly understood by many healthcare providers. My general practioner, urologist, and ENT(who actually does surgeries to open the sphenoid sinus for surgeons to remove pituitary tumors) were unaware how important growth hormone is for adults. My endocrinologist, the best in my area, also seems to be "feeling out" the proper way to evaluate me for this syndrome.
In view of this lack of understanding and the fact that growth hormone secretion is often the first pituitary function to be lost in hypopituitary states I encourage all of you that are in the same boat as me with our pituitary related symptoms to ask you endocrinologist to evaluate you for AGHD if they haven't already.Then, good luck getting you health insurance carrier to cover the expensive hormone!

[North48]

I had my IGF-1 test run 2 times 6 months ago and both were on the high end of the normal range.  I suspect that it may be if anything Acromagely.  But like you said GH is the first Pit. function to go and I have read that too.

[rumpled]

I have had the test for GH deficiency. I had the arginine stim test. There is all the ITT test.
It took over a year to get the insurance company to pay for it. I finally sent such a nasty letter that my husband was embarrassed to send it but I got my money after sending it. After all, they make you take the test to get the medication and then turned me down on the basis for get this, not medically necessary! Never tick off a person with about 11+ hormones off kilter. ..grrrrrr.
I drive and travel to get to doctors - it is the only way. My local ones do not have a clue.
I do get covered for GH. But it did take fighting. I sure feel better on it than off it.
It is amazing how endocrinology is so poorly understood - and still the endos still do not understand that it is a system of feedbacks and loops and if one hormone is off, dollars to donuts, others are too! I just adjusted one and now have to change two more. Thankfully my one doctor is smart.

[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.

[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

[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.

[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]

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.

[testdeprived]

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

[North48]

Which tests pinpointed your problem?

[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.

[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]

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

[testdeprived]

buut yeh at 19 this is hard for me.

[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]

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?

[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.  

[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.

[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.  :-)

[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.

[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.

[funnygirl64]

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

[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.

[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 (symptoms) have not subsided, and no one wants to help!  Some have referred to this as a tumor others a freckle?

[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.