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Peg541's Message Board Messages

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I'm in the same position. High CGA but everything else normal. I did meet someone online who has Carcinoid with all normal lab tests. My endocrinologist is on vacation and I imagine the scans are expensive and you just can't order them willy nilly BUT I'd like an answer and I'd like to start feeling better. I've forgotten what better feels like. Anyone want to let me know how you're doing?

RE: Chromogranin A

by Peg541 - November 06 at 3:54 PM

I'm in the same position. I have symptoms and my CGA is elevated to 1300. Came down to 489 and all of the other tests are negative. I'm waiting for the endocrinologist to order a scan but he's in vacation. Imagine that? I'd like to know how your testing goes. I met someone who has Carcinoid and all of his labs are normal.

RE: Going through carcinoid/NET tests

by Peg541 - November 06 at 3:50 PM

I'm very new here but I'm sorry you have had no responses. Did you have a nuclear scan? My endocrinologist told me it takes three years to diagnose Carcinoid. I'm not wiling to wait that long with the way I feel. I'd like to know more about your testing. I'm in the same position you are.

Possibility of Carcinoid

by Peg541 - November 06 at 2:28 PM

Hello. In Early September 2018 my blood pressure suddenly dropped. I almost passed out. Subsequently my BP which is usually high and under treatment has stayed low. Many times a day as low as 90/55. I stopped my blood pressure pill that week. My heart pounds many times a day. Not fast. Just a strong heartbeat that keeps me up at night. I'm anxious and irritable off and on. I do flush but not dramatically. I have always flushed. My PMD finally ordered testing for pheochromocytoma and CGA. My CGA came back 1400. I asked to see an endocrinologist. He did all of the usual testing and my CGA came down to 489 which is still high. Everything else came back within normal ranges. And he left on vacation until the week of thanksgiving. I couldn't get another appointment until 12/24! My BP is still on the low side off of my BP meds. A few times a day it goes as low as 100/60. Usually the same time my heart is pounding. I'm quite light headed most of the time. I called and asked to be put on a list for an earlier appointment. He's a colleague of my husband and I can't push too hard. I'm having an echocardiogram this week due to shortness of breath on and off. On another message board someone contacted me yesterday saying he has Carcinoid of his ileum with liver mets and his blood tests all came back normal two times. I can see this. I'm wondering is this my story as well? That message board isn't very active and not easy to manage. I need some sort of diagnosis and some HELP. I do have some tenderness over my appendix area. Does this story sound familiar to anyone? I'm so tired of postulating and trying to feel better. I don't remember what good feels like.
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