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SDHB Positive and Ga-68 Dotatate Scan question.

Neuroendocrine Tumors (NETs) | Last Active: Jul 11, 2023 | Replies (10)
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@gsm13161

Yes, mine was inherited. Genetic testing ordered by the endocrinologist showed a mutation in sdha 91 ct. Considering your symptoms, I would think your tumor is a functioning one, meaning it’s secreting hormones that are messing with your cardiovascular system. You should request testing be done to measure catecholomines, either plasma or 24 hour urine. Also metanephrine test can be helpful. It’s possible you will need pre-op alpha/beta blocker medication to control your blood pressure as well as heart rate.

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Replies to "Yes, mine was inherited. Genetic testing ordered by the endocrinologist showed a mutation in sdha 91..."
coachv | @coachv | Jul 10, 2023

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?

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