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SDHB Positive and Ga-68 Dotatate Scan question.
Neuroendocrine Tumors (NETs) | Last Active: Jul 11, 2023 | Replies (10)Comment receiving replies
I did the catecholamines blood and 24 hours urine. I have kidney issues, test results were all over the board. Metanephrine blood was only slightly above. My heart rate jumps or ultra low drops are without pattern at all. I have been told it is highly episodic.
Apparently there is another person at MD Anderson now who is episodic functional like me. HIPAA will not allow them to share more.
Would catecholamines or metanephrine test show anything if tumor is not functioning at all time? if it only secrets whenever I wish I knew what triggers it?
Replies to "I did the catecholamines blood and 24 hours urine. I have kidney issues, test results were..."
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Symptoms from Pheochromocytoma/Paraganglioma can be episodic. The hormones that are secreted are in charge of the " fight or flight " syndrome so stress plays a part in it. Even feelings similar to having a panic attack can happen when those hormone levels are elevated. Having a sdhb mutation with a head/neck paraganglioma is fairly uncommon. I would stay on top of it for most of what I've read says the sdhb tumors are the more aggressive subtype and more often than not will turn out to be cancerous.