1. < Neuroendocrine Tumors (NETs)

Anyone dealing with Carcinoid NETs with Diabetes?

Posted by vinnie694 @vinnie694, Mar 18, 2023

I was diagnosed with Carcinoid Tumors Earlier this year, 2 weeks ago I was diagnosed with Diabetes. I’ve been pre-diabetic for a few years now and was told the hormones related to the Tumors can cause an increase in blood sugar. Is anyone dealing with diabetes and Carcinoid syndrome is oral medication working for you? Thanks…

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

keppi | @keppi | Feb 12 3:09pm
In reply to @vinnie694 "I was diagnosed type 2 diabetes 2 years ago when I was diagnosed with carcinoid syndrome....." + (show)
@vinnie694

I was diagnosed type 2 diabetes 2 years ago when I was diagnosed with carcinoid syndrome.. my primary care doctor prescribed medication, shortly after that I saw a diabetes specialist at Mayo, I did lose a few lbs after staying away from carbs and sugar, she took me off the meds and said to continue with the reduction of carbs and sugar and my A 1C dropped from 7.8 to 6.5.. so I’ve been trying to keep it under 7 with diet and exercise.. As for the hot flashes caused by the carcinoid tumors, I was getting the hot flashes in excess of 25 times a day. Started Lanreotide, after 2 months the flashes continued, Dr switched me to Ocreotide, within a day I wasn’t having any flashes..It’s been 2 years now and it’s still working.. hope things work out for you.

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Thank you for your comment and advise. I really appreciate hearing from anyone about this situation. I feel the doctors are just consoling me and not really helping to improve. I receive a shot every 28 days of Sandostatin, as surgery is not an option. I am looking to see if I can get a second opinion on this diagnosis.

REPLY
keppi | @keppi | Feb 12 4:26pm
In reply to @colleenyoung "Welcome @keppi. I moved your question about carcinoid and diabetes to this exising discussion: - Anyone..." + (show)
@colleenyoung

Welcome @keppi. I moved your question about carcinoid and diabetes to this exising discussion:
- Anyone dealing with Carcinoid NETs with Diabetes https://connect.mayoclinic.org/discussion/carcinoid-nets-with-diabetes/

I did this so that you can read previous posts and connect with members like @vinnie694 @tomrennie @dbamos1945 @californiazebra and others.

@keppi, did you have diabetes before the diagnosis of carcinoid tumor? What type of diabetes do you have?

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I have had diabetes for about 30 years. Shortly after being diagnosed with diabetes, I began having heart problems. In 30 years I have had 27 stents, a quadruple bypass, and recently received a pacemaker. Then about 10-12 years ago, I was diagnosed with lymphoma and proud to say I have been in remission for 8 years. However, 4 years ago I was diagnosed with a carcinoid tumor and was told it was inoperable. I am receiving Sandostatin every 28 days, but I just feel there must be more that can be done.

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racheln82 | @racheln82 | 10 hours ago

Hello all. My brother had MEN1 and sadly passed at 37. I have been diabetic for almost 20 years. I have suddenly had 2 weeks of very bad watery diarrhea and also started having coughing fits. Wheezing also. When I eat it is worse. Do you think it could be a tumor or the syndrome? Thank you in advance.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 1 hour ago
In reply to @racheln82 "Hello all. My brother had MEN1 and sadly passed at 37. I have been diabetic for..." + (show)
@racheln82

Hello all. My brother had MEN1 and sadly passed at 37. I have been diabetic for almost 20 years. I have suddenly had 2 weeks of very bad watery diarrhea and also started having coughing fits. Wheezing also. When I eat it is worse. Do you think it could be a tumor or the syndrome? Thank you in advance.

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Hello, @racheln82, and welcome to the NETs support group on Mayo Connect. I am sorry to hear of your brother's death. Please accept my condolences.

Given your family history, I understand your concern with these new symptoms. As you may know, Mayo Connect's members are patients like yourself. While most of us have experience with NETs we are not medical professionals and therefore cannot help you with a diagnosis.

As these symptoms have been going on for two weeks I would encourage you to see your doctor. Have you notified your doctor about these changes in your health? Given your family history, this is probably a good idea. It can put your mind at ease to understand the significance of these symptoms.

Will you post again and let me know how you are doing?

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