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Anyone else with a diagnosis of MEN-1?
Neuroendocrine Tumors (NETs) | Last Active: Jan 26 5:02pm | Replies (9)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!
Replies to "Thank you! And sorry I misspoke. I had to change my appointment and I am now..."
@katydurgin, how are you doing?
Hello so sorry you’re going thru this. My MEN1 test came back negative I figure I’ll have MEN 6 or 13 once they figure them out.
I had two parathyroids removed about a year and a half ago. it was miraculous in treating my severe fatigue.
I have NET grade 2 in my intestines removed (discovery) bowel block.
I had ovaries removed NET grade 2 tumor metastasis there. I have net metastases in my liver on watch treated with lanreotide injections every three weeks.
I was sure with the triad ovaries intestine and liver and needing parathyroids out and bowel issues it was MEN 1 but negative so who the heck knows.
I had high PTH but normal calcium.
My daughter has had similar things with face flushing fatigue. She had scans with enlarged pituitary and thimus a few year back I’m requesting an update on those scans.
My gutt issues have caused multiple hernias. Had them all fixed with biological mesh but they are all back. MiraLAX daily.
I do also have a lot of ginger and tumeric to reduce inflammation.
It’s a process but we just keep chugging. Hugs and prayers to you and your family.
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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