I think that functional scans are necessery when patient has very high level of metanephrines and CT or MRI didn't find a tumor. Tumor may be small, not visible on MRI, but patient may be very symptomatic, because small tumor may be very active and secrete huge amount of catecholamines.
Very good question mme.i have suspected paraganglioma found by accident rmi two years ago.i sweat a lot, palpitations, constipation,hight blood pressure but I feel that nobody is listening to me.
Sadly many docs (even endos or ENTs) may not have enough info on this disease, and medical gaslighting happens. Some info is wrong/outdated, pays to educate yourself on it. Yours is a common experience in the PPGL community unfortunately...hang in there. Hopefully you may find a specialist in your area. You can search for a center of excellence care via the pheo para alliance website. Also, if you can find a local doc to listen to you, they can send you to the NIH where you can get more specialized PPGL help too. Kind regards.
Should the plasma sample be put on ice immediately after collecting? I've heard it is very important, otherwise metanephrines may break down and give false negative. It that true?
Yes, that's true. The PheoPara Alliance mentions it on their site under What is paraganglioma? Then go to Diagnosis, then "blood plasma test" section: "Additionally, blood should be drawn into prechilled tubes, and the blood sample tubes should be put on ice before centrifugation. This is so that the plasma can be frozen until actual measurement. If samples are not drawn into prechilled tubes and put on ice, approximately 20% lower plasma metanephrines may be result."
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I think that functional scans are necessery when patient has very high level of metanephrines and CT or MRI didn't find a tumor. Tumor may be small, not visible on MRI, but patient may be very symptomatic, because small tumor may be very active and secrete huge amount of catecholamines.
17:16
Thanks a lot.
I will insist to do further test.tks and God bless you.
Very good question mme.i have suspected paraganglioma found by accident rmi two years ago.i sweat a lot, palpitations, constipation,hight blood pressure but I feel that nobody is listening to me.
Sadly many docs (even endos or ENTs) may not have enough info on this disease, and medical gaslighting happens. Some info is wrong/outdated, pays to educate yourself on it. Yours is a common experience in the PPGL community unfortunately...hang in there. Hopefully you may find a specialist in your area. You can search for a center of excellence care via the pheo para alliance website. Also, if you can find a local doc to listen to you, they can send you to the NIH where you can get more specialized PPGL help too. Kind regards.
Should the plasma sample be put on ice immediately after collecting? I've heard it is very important, otherwise metanephrines may break down and give false negative. It that true?
Yes, that's true. The PheoPara Alliance mentions it on their site under What is paraganglioma? Then go to Diagnosis, then "blood plasma test" section: "Additionally, blood should be drawn into prechilled tubes, and the blood sample tubes should be put on ice before centrifugation. This is so that the plasma can be frozen until actual measurement. If samples are not drawn into prechilled tubes and put on ice, approximately 20% lower plasma metanephrines may be result."
My plasma is normal, urine always around 2.5-3x normal. What gives??
Interesting . My plasma is almost normal ( normetanrphrine slightly elevated) so now headed to have the 24 urine.
@@Katie-vy5rdit’s wild. Been confirmed. Going to surgery soon. Urine is still 3-4x normal, blood ALWAYS normal! So odd
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