Hi Rosie, an interesting thread that I will follow.
It looks like you have been thru the mill and have done your research on this. Thanks for posting because I have been wondering about this also. Have an MRI skeduled for mid Feb for post surgery prolactinoma removal.
I have something simular between the left and right fissure of the brain.
It is about the size of a dime,and has not grown since discovered a year ago, 3 MRI's and no change, but all the markers are normal as well. The Doctors just want to moniter it with an MRI for now because they are not sure what it is and the primary focus was the Prolacinoma.
I am not sure what to ask the DR's and your post was more informative Then all 4 of the specilists that I,ve been to.The more I learn, I will be sure to pass it on.
Please keep us updated here with the valuable information you have.

Happy Holidays to you as well.

Hey Rosie, though I have not yet been diagnosed with MENs I had to undergo some testing back in March when I was diagnosed with a tumor on my parathyroid gland (primary hyperparathyroidism) and usually if you have this disease under the age of 15 (I was 13 when i started gettting symptoms) it is because of a genetic reason. As you probably know MENS can effect your pancreas, pituitary and also you parathyroid gland. So I had to get an MRI of my pancreas and pituitary. The pancreas came back fine but my pituitary showed a small 4mm somthing or other on it, so i have to go back next week for another scan to see if it has gotten any bigger. I am also being tested again and everything came back fine except my prolactin was slightly high.

Does anyone else in your family have any thyroid/parathyroid/pancreas/pituitary or other endocrine disease? MENs is genetic so I am pretty sure someone somewhere in your family would also have to have it.. My mother has thyroid and one of the aunts has pituitary problems and another has parathyroid problems. My moms brother also had non hodkins lymphoma. So it seems to me like maybe there is some kind of endocrine problem in my family. I won't know for another month if the thing on my pituitary is a tumor or not, or what that will mean.

I hope all of your tests go well and I am happy to hear that you are going to see an endo. Have you had any blood tests?

If your doctor does decide to test you he will probably test you for things accosicated with it like blood work and a couple urine collections. The actual test for MENs though is a genetic test, which will probably be my next route.

Do you have any other symptoms accosiated with MENs?

Best of luck :)

Thanks FXST123 and luli88 for your interest and reply to my post. I do have aunts in my family with thyroid problems. I was reading that with MENS1 70% of the patients have parathyroid problems,which would mean my calcium levels would be high or low. At this time my calcium level are normal. No one else in my family has had problems with pituitary problems other than me. I am hoping for the best. I really have a great Endo. I just hope she doesn't blow me off. i just can not knock this feeling that these two tumors are linked. I will posted after my appointment on Tuesday. luli88, I wsh you the best of luck. FXST123, look for my post on Tuesday.

Hi everyone, just wanted to update everyone on appointment with Endo. I discussed with her my concerns about MEN 1. However because I did not have any symptoms of problems with my parathyroid gland which is present with the majority of MEN 1 patients, she was not to convinced that I had MEN1. She also expressed that she did not think that the 2 lesions were related. So because I really think she is a good doctor and out of respect, I sat quietly and tried not to disagree. However, I am not convinced about everything she said, because of the way she was reading over my medical reports of MRI and Ct scans.
I think that she does think that the 2 are related and perhaps , she will discuss with other drs. She did do routine blood work, and promised to get results back to me ASAP. Thanks to everyone for listening, more post to come.

Thanks for the update! I'm glad to hear that she doesn't think it is related but I think it is good you aren't completely convinced. For me I know i would want to be completely sure that they are not linked. Like you said a large amount of people have parathyroid problems but most isnt everybody. She is probably right that it isn't connected but if you still feel it may be, be sure she checks. Best of Luck :) again, keep us updated.:)

I know it's been a year since the last post on this thread but was hoping for an update. Do others with secreting prolactinomas get tested for MEN1?

Yes, I had the 5HIAA test performed. Only problem is...the liver does such a superb job of processing the blood in the body that...usually, you don;t know you have a problem until it's truly progressed.

Hi everyone, I posted this discussion in 2011 which seems like a long time ago. I was never able to get my doctor to test me. Tigertales , How did you convince your doctor to do the test? I still have a tumor on the pituitary gland and the pancreas. I am interested in knowing if anyone else with a pituitary tumor has had any problems with their pancreas?

HI Rosie2727,
My pancreatic enzymes are low right now but no lesion. I also asked my Endo for the MEN1 test but she didn't think it was necessary. I would follow your instinct. It doesn't hurt to find out. Good Luck.

I had a very open minded Endocrinologist.

She was a Russian National that was a former University of Pennsylvania Instructor in Endocrinology. She was superb but she has left the area and is working in another market.

She was willing to order any test that I asked for so as to quell my anxieties about my condition. She ordered the Dexamethasone Suppression Test and even did a Glucose Tolerance Test as well.

She was wonderful.

I've had 5 Endocrinologist in 7 years and they all seem to play to their areas of interest. I have one that keeps wanting to give me Thyroid medication, even though my thyroid is only slightly low.