Anyone with Multiple Endocrine Neoplasms gene MEN1 and how diagnosed?

@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!

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.

I am following this MEN1 string with great interest. I'm diagnosed with Grad 2 Pnet removed by surgery, liver mets. I have not had, do not currently have, any symptoms of hyperparathyroidism or kidney stones, but I learned my dad, who is deceased, had both and my grandfather had kidney stones. I am aware of the association with MEN1, Pnet and hyperparathyroidism and I tested negative for Men1 a couple years ago via blood draw, but I've since learned that you can test negative and still have non-genomic specific MEN1. My Pnet diagnosis cam out of the blue, but I am less concerned for my treatment which is going well, and more for my family. FYI I also am treated at Ohio State Wexner and have been referred to a geneticist, appt. Oct. 27. I will definitely post what she says about my situation and look forward to your posts as well! Good luck and Thx for starting this conversation!

@cmhgiddy24 Thanks for the education. As someone with a stage 4 pnet to liver and bones, I am curious. Where did you learn that you can test negative for MEN1 and still have non-genomic specific MEN1? I am very interested in reading that. Thank you.

@tomrennie
Good morning! I have read this in about several places after a kind of generic AI search, but here is one site about a clinical trial at MD Anderson.
https://www.sciencedirect.com/science/article/abs/pii/S0039606020302920
When I mentioned to oncologist CNP, I was then referred to geneticist which is fine because I would like more info about my specific situation because of my Dad's history and how it could relate to my kids/grandkids. Hope this helps!