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Recently diagnosed with MEN1

Diabetes & Endocrine System | Last Active: Jun 26 9:25am | Replies (5)

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@matt2024

Hi @persevere76 - mine was found incidentally during a CT for yet another kidney stone (another wonderful side effect of high PTH!). None of my markers were elevated and my NETs were non-functioning. I looked at several places for treatment including Mayo and ended up at Cleveland Clinic since it is about 2 hours' drive for me. I have yearly scans and blood work and am followed by my endo for diabetic management and nephrologist for stone management. I have one remaining parathyroid that is most likely going super nova so I am on the list for surgery/implantation sooner or later.

I hope you hear soon so you can be on the path to managing this gift (ugh) we have been given. I try to stay focused on what I can do today to make a positive change and move forward. Take care of yourself in the meantime.

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Replies to "Hi @persevere76 - mine was found incidentally during a CT for yet another kidney stone (another..."

Hi @matt2024,

I am still waiting to hear back from Mayo but in the meantime, my local Endo has put a referral into the Cleveland Clinic for me. I am in Indy, so CC would be much closer for me. Who do you see at Cleveland?
Unfortunately, I know all about kidney stones. I had to have 1 surgically removed in 2022 and had another one in 2023. Knock on wood, I haven't had any more since my parathyroid surgery in Feb.

Thanks for listening and being positive!
P.S. My name is Heather