1. < Diabetes & Endocrine System

Recently diagnosed with MEN1

Posted by persevere76 @persevere76, Jun 14 12:09pm

I was recently diagnosed with MEN1 and my local Endocrinologist has referred me to Mayo. I am waiting for a call on when my appointment(s) will be. I would like to know if anyone with MEN1 has had an adrenal adenoma and what treatment you had for it.
Thank you and blessings to all the warriors fighting this battle!

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matt2024 | @matt2024 | Jun 19 8:19am

Hi @persevere76 - nice to meet you. I was diagnosed with MEN1 about 5 years ago. I have since undergone parathyroid surgery, a total pancreatectomy, etc. and am being followed routinely for other NETs. I have not experienced adrenal adenomas as of yet and would be happy to share what I have learned over the past 5 years. Keep the faith!

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persevere76 | @persevere76 | Jun 20 8:44am

Hi @matt2024 ,

Thanks for responding! I had parathyroid surgery in Feb of this year and then was diagnosed with MEN1. A recent scan showed the adrenal adenoma and my Gastrin and Chromogranin A levels are elevated. Still waiting to hear back from Mayo on my appointment(s). Do you go to Mayo for management/treatment? Thanks!

REPLY
1 reply
matt2024 | @matt2024 | Jun 20 1:31pm
In reply to @persevere76 "Hi @matt2024 , Thanks for responding! I had parathyroid surgery in Feb of this year and..." + (show)
@persevere76

Hi @matt2024 ,

Thanks for responding! I had parathyroid surgery in Feb of this year and then was diagnosed with MEN1. A recent scan showed the adrenal adenoma and my Gastrin and Chromogranin A levels are elevated. Still waiting to hear back from Mayo on my appointment(s). Do you go to Mayo for management/treatment? Thanks!

Jump to this post

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.

REPLY
1 reply
persevere76 | @persevere76 | Jun 25 4:20pm
In reply to @matt2024 "Hi @persevere76 - mine was found incidentally during a CT for yet another kidney stone (another..." + (show)
@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.

Jump to this post

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

REPLY
1 reply
matt2024 | @matt2024 | Jun 26 9:25am
In reply to @persevere76 "Hi @matt2024, I am still waiting to hear back from Mayo but in the meantime, my..." + (show)
@persevere76

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

Jump to this post

Hi @persevere76 - Happy to help! I've sent you a private message with some information that may help. Take care and keep the faith!

REPLY
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