Neuroendocrine Tumors (NETs) Support Group

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Comment

My PCP ordered a 5HIAA based on his opinion that I have carcinoid syndrone. It came...

https://connect.mayoclinic.org/comment/721534/

Discussion: Looking for neuroendocrine tumor (NET) with carcinoid syndrome support

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2022

Comment

POTS stands for postural orthostatic tachycardia syndrome. It is a disorder of the autonomic nervous system...

https://connect.mayoclinic.org/comment/635178/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2021

Comment

I am currently taking a histamine blocker for my facial flushing & GI issues. The high...

https://connect.mayoclinic.org/comment/625071/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 10, 2021

Comment

My hair has been exiting my scalp. My husband thinks it’s because I’ve had three Gallium...

https://connect.mayoclinic.org/comment/624830/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 9, 2021

Comment

Hi, there. Be calm. My Chromogranin A levels were 504 on my last blood test. HIAA...

https://connect.mayoclinic.org/comment/614114/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5, 2021

Comment

Help! I had a lobectomy for a spindle-cell sarcoma in 2016. Because I was having flushing...

https://connect.mayoclinic.org/comment/609880/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2021

Comment

@musicflowers4u I'm so glad that you posted again about your test results. You must be relieved...

https://connect.mayoclinic.org/comment/308782/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2020

Comment

Hi Ipate. Sorry to here of your multiple problems. I did not have any problems and...

https://connect.mayoclinic.org/comment/317669/

Discussion: Could I have NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2020

Comment

Hello @tammyd and welcome to the NETs support group on Mayo Connect. After having surgery three...

https://connect.mayoclinic.org/comment/1128481/

Discussion: My Chromogranin numbers are high. What is a more accurate test?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 22, 2024

Comment

My husband has a no functional pnet with negative blood work so I’m not as familiar...

https://connect.mayoclinic.org/comment/1048909/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 11, 2024

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