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Anyone else with a diagnosis of MEN-1?
Neuroendocrine Tumors (NETs) | Last Active: Jan 12 11:54am | Replies (6)Comment receiving replies
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!
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@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