Anyone with Multiple Endocrine Neoplasms gene MEN1 and how diagnosed?

My daughter is being tested for MEN1. Her parathyroid adenoma was huge. I also had an adenoma on my pituitary gland. They think there could be a familial connection. Her calcium was high but they caught it before kidney stones developed.

Hi & thanks for your message.
1. The previous genetic testing was a Tempus test on the tumor itself. The primary goal was to help determine the origin tumor as only the single liver NET has ever been located despite much searching since fall 2023. The Tempus result broadly categorized the origin as "gastrointestinal." My doctor noted that he found it "interesting as pancreatic or pulmonary origins are often more clearly defined in these reports when they are suspected." Thus, while, rare, we could not "entirely exclude the liver" as the site of origin. But, as you noted, the pancreas is often a prime suspect to send a NET to the liver and I think he was initially thinking maybe it was the origin site.
2. To follow up on any doubts about the pancreas, in December 2025, I had an endoscope of the pancreas and a needle biopsy that came up clear. But with PET scans and such, they continue to look closely for any changes in the pancreas.
3. I learned today that I will speak with a genetic counselor on 9/29/26. Reading her specialties, I see she is all about MEN 1 & 2, so I now understand that referral. I will let you know what tests and results might follow from her work with me.
4. I now have referrals to an endocrinologist and urology to address the immediate issues of the hyperparathyroidism [high hormone levels], which caused my high calcium level, which created my kidney stones!
5. I immediately thought [with no medical knowledge] that the hyperthyroidism had to be related to my NET diagnosis simply because just like the liver NET, this gland was "running the show" and sending crazy orders out to my body to overproduce calcium. The liver NET gave me uncontrollable hypertension; type 2 diabetes, extreme swelling in legs/feet leaving me unable to walk or drive. When these tumors function, they are really something! After treatment, all these body systems returned to normal. But it gave me great empathy for those with diabetes after having had it only three months.
6. All my NET and this new NET related treatment is at Ohio State University, Wexner Medical Center.

I appreciate this connection.

@caredy77
Thanks for this helpful response. I thought of you as MRI pituitary with & without contrast has now been ordered. The "diagnosis" on the order read "MEN 1 multiple endocrine neoplasia."
I will be interested in your daughter's test results. I have two adult sons [40 yr and 38 yr] and two grandchildren, so like you, want to understand familial connection, if any. My sons have not had any indicators or symptoms for the MEN 1, but neither did I until the liver NET appeared at age 71! Best to you and your daughter.

Hi & thanks for your message.
1. The previous genetic testing was a Tempus test on the tumor itself. The primary goal was to help determine the origin tumor as only the single liver NET has ever been located despite much searching since fall 2023. The Tempus result broadly categorized the origin as "gastrointestinal." My doctor noted that he found it "interesting as pancreatic or pulmonary origins are often more clearly defined in these reports when they are suspected." Thus, while, rare, we could not "entirely exclude the liver" as the site of origin. But, as you noted, the pancreas is often a prime suspect to send a NET to the liver and I think he was initially thinking maybe it was the origin site.
2. To follow up on any doubts about the pancreas, in December 2025, I had an endoscope of the pancreas and a needle biopsy that came up clear. But with PET scans and such, they continue to look closely for any changes in the pancreas.
3. I learned today that I will speak with a genetic counselor on 9/29/26. Reading her specialties, I see she is all about MEN 1 & 2, so I now understand that referral. I will let you know what tests and results might follow from her work with me.
4. I now have referrals to an endocrinologist and urology to address the immediate issues of the hyperparathyroidism [high hormone levels], which caused my high calcium level, which created my kidney stones!
5. I immediately thought [with no medical knowledge] that the hyperthyroidism had to be related to my NET diagnosis simply because just like the liver NET, this gland was "running the show" and sending crazy orders out to my body to overproduce calcium. The liver NET gave me uncontrollable hypertension; type 2 diabetes, extreme swelling in legs/feet leaving me unable to walk or drive. When these tumors function, they are really something! After treatment, all these body systems returned to normal. But it gave me great empathy for those with diabetes after having had it only three months.
6. All my NET and this new NET related treatment is at Ohio State University, Wexner Medical Center.

I appreciate this connection.

@rcochran1 I wasn't sure if this reply was to me or not? Seems like you have a lot of moving parts but a solid game plan. Engaging ologists is never a bad thing in my opinion. I have several on my team. I am curious to learn what they have to say. How do you feel about how things are progressing?

@tomrennie
Hi, thanks for your message; it has helped to hear from folks on this same search for possible MEN 1 gene.
I just received word back on the MRI of pituitary- no lesions found.
So, on the trail of the MEN1 gene, we have hunted down the pancreas [nothing found]; the pituitary [nothing found]; the parathyroid will be further explored after I stay off of Maxzide, a blood pressure medication, for 3 months. Apparently this medication affects calcium levels and they need an accurate reading.
Next week, I will see a urologist to get a read on the "innumerable" small kidney stones and at end of month meet with the genetics counselor.
I now have four specialists at Ohio State University Medical Center and while it is a 90 minute drive, it is worth it to me to have them all in the same system. I have found coordinating care between health care systems is a bit tedious what with linking four different MyCharts and such. Thanks for all the responses and support!