Anyone else with a diagnosis of MEN-1?

Welcome, @katydurgin. I'm tagging a few members like @matt2024 @kbfan19 @persevere76 @weavepj @mk1124 @laree, who live with multiple endocrine neoplasia, type 1 (MEN 1).

Katy, you are in good hands at Mayo Clinic and with Dr. Wermers. I recently heard him speak. He is knowledgeable and kind. You will find many tips about visiting Mayo Clinic for the first time in the
- Visiting Mayo Clinic support group https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

While we wait for others to chime in, can you share a bit more? This sounds like a very recent diagnosis for you. What symptoms led to your diagnosis? How are you doing?

Thank you! And sorry I misspoke. I had to change my appointment and I am now seeing Dr. Malbec I belief it is.
Actually no, not a recent diagnosis. I was diagnosed at around age 18 when my mom passed away at age 37 from complications. I am now 36. My daughter has recently also just started showing signs during precautionary testing.
I have had 3.5 parathyroids removed and headed soon to have the last half removed and put into my arm. I have a pituitary tumor and currently on my second round of cabergoline. I have terrible ibs and trying to find ways to manage that. My bone density scan came back showing the start of osteopenia. So yeah, I have a lot going on and just want to feel better and heard!
Currently have high calcium, prolactin and pth.
Thank you all for welcoming me!

@katydurgin - Hi Katy, nice to meet you. I am sorry to hear that you are dealing with MEN1. I learned that I had it at age 54 when a CT for a kidney stone incidentally found 5 pancreatic neuroendocrine tumors. Interesting enough, I had two parathyroids removed in 2011 and asked the doctor at the time if there was a chance that I had MEN1. The answer was unequivocally no. (well, surprise, I do have it.) There was no history of it in my family before me so can't explain that one...

I ended up having a complete pancreatectomy (TP) with 1/13 lymph nodes showing involvement in 2019, and have had subsequent 1 1/2 parathyroids removed in 2022 and 2023. My calcium and PTH are trending from my remaining 1/2 parathyroid and the surgeon I see wants to see how that progresses before considering implantation.

I am also being monitored for a pituitary microadenoma and that seems to be stable. I manage the resulting diabetes and digestion impacts of the TP with an insulin pump and pancreatic enzymes. All in all, I am still doing well and happy to be here. My PCP tells me that I am the healthiest sick guy he knows. 🙂

My youngest son inherited it from me and has had 3 1/2 parathyroids removed and is being followed for pancreatic and pituitary tumor growth. Still feel guilty about him being affected but literally had no idea until a few years ago.

Happy to help if you need anything!
- Matt

Wow! And have you been seeing doctors at the Mayo Clinic? How has that been for you? Anything you can share? I am so sorry to hear of your youngest. Mine will complete her nuclear scan next month to see how many parathyroids are causing the issues and then we will go from there. She will be coming along with me next month to Mayo as I tihnk at this point it is only beneficial for her to hear all of the things that come with MEN-1.
I too am very happy to be hear but I will not lie and say so many days are so so hard and I just want to feel even half normal. These days it is mostly the stomach issues that are causing me the most issues and making things unbearable. The headaches have gotten better since starting the Caborgaline again and my prolactin levels have started to come down. Well wishes to you!

@katydurgin I am sorry to hear about the stomach issues. I haven't experienced any of that - just when I was getting my Creon enzyme dosage dialed in. I have been treated at Cleveland Clinic and see several doctors there for the various maladies that come along with MEN1.

I did not know originally that the pancreas tumors were NETs and related to MEN1 so I figured I was a goner back then. I do count every day as a blessing and think my MEN1 was found so that my youngest could be treated and followed much earlier than I was able to be. I get yearly scans and tests and all of the anxiety that comes along with that. It's one day at a time and we keep moving forward.

Well wishes to you and your family as well. Let me know if I can add any more info for you.

Same to you! Thank you and thank you for you time. I will certainly reach out if I think of anything