DizzyGirls Posted March 16, 2022 Report Share Posted March 16, 2022 My daughter has had a rough go of it for the past several months....severe hypersensitivity to most stimulation, anxiety, debilitating fatigue, etc. Her current new symptom is an increase in her blood pressure. It was 140/102 and her heart rate was 80. That is much higher than her normal levels. It started on Sunday with some strange sensations. She was having a hard time explaining them. I would like to have her norepinephrine and catecholamine levels tested, but don't know how they are tested. What is the best and most accurate way? Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 16, 2022 Report Share Posted March 16, 2022 @DizzyGirls My autonomic specialist tested mine, they took several tubes of blood, first after lying down in a recliner for 30 minutes and then again after walking around for 30 minutes. The samples were sent out and it took 2 weeks to get the results. But I have read that some people had a urine test for catecholamines, not sure of that is similar? Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 16, 2022 Report Share Posted March 16, 2022 I believe the urine catecholamine is a 24hr collection and is used for testing the adrenal glands. https://medlineplus.gov/lab-tests/catecholamine-tests/ Catecholamine tests are most often used to diagnose or rule out certain types of rare tumors, including: Pheochromocytoma, a tumor of the adrenal glands. This type of tumor is usually benign (not cancerous). But it can be fatal if left untreated. Neuroblastoma, a cancerous tumor that develops from nerve tissue. It mostly affects infants and children. Paraganglioma, a type of tumor that forms near the adrenal glands. This type of tumor is sometimes cancerous, but usually grows very slowly. This is also on my list to discuss with my PCP tomorrow Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 23, 2022 Report Share Posted March 23, 2022 Just sharing - I did finally get the Catecholamine urine test scheduled. The lab at the local hospital terms it metanephrines fractionated, Urine. Hope this helps anyone if they run into confusion when trying to schedule a test. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 23, 2022 Report Share Posted March 23, 2022 well bit more sharing for inquiry minds. here is what the urine kit looks like. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted March 23, 2022 Report Share Posted March 23, 2022 1 hour ago, MikeO said: well bit more sharing for inquiry minds. here is what the urine kit looks like. Been there, done that. Got slightly panicked after about 16 hours when it was clear I would not be able to fit 24 hours worth in there. Found a way to get another container! Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 24, 2022 Report Share Posted March 24, 2022 3 hours ago, RecipeForDisaster said: Been there, done that. Got slightly panicked after about 16 hours when it was clear I would not be able to fit 24 hours worth in there. Found a way to get another container! Haha i did have this same conversation with the tech. She did say i can call in for a second pee container if needed. I am sure i will know by 2pm if one is needed. I will almost guarantee i will fill half of the container the next morning. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 25, 2022 Report Share Posted March 25, 2022 @RecipeForDisasterwhen you had this test done did you have to withhold meds for 72 hrs? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted March 25, 2022 Report Share Posted March 25, 2022 5 hours ago, MikeO said: @RecipeForDisasterwhen you had this test done did you have to withhold meds for 72 hrs? Some of them, yes. I’m not sure I remember which! Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 25, 2022 Report Share Posted March 25, 2022 15 minutes ago, RecipeForDisaster said: Some of them, yes. I’m not sure I remember which! Thank You! I did reach out to Cardiology the two that they won't let me withhold is the Carvedilol and Ranolazine. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted March 25, 2022 Report Share Posted March 25, 2022 6 hours ago, MikeO said: when you had this test done did you have to withhold meds for 72 hrs? Here is a link to a very thorough article about what substances/foods/drugs might impact catecholamine levels: https://www.uclahealth.org/endocrine-center/urine-catecholamine-test It won't make a difference to Mike at this point, but it might be useful to someone else. I was told to avoid NSAIDS for two weeks, which are not listed in this piece. The lab did not properly refrigerate my specimen and after almost three weeks I got the result: not enough urine to perform test. HAHAHAHA! As if.... So I can only assume they did not handle it correctly and could not accurately test. Good luck @MikeO Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 25, 2022 Report Share Posted March 25, 2022 Oh @JyotiI do have to chuckle as to if this test is going to go well. The tech that i saw, it was apparent she had not administered one before and i left with basic instructions. She did call me after i left citing that i needed to withhold meds for 72 hrs and if i ran out of room in the jug to come back in to get another. Haha the little that i know is that i need to take down time for the sample. Thank You for the link i will read thru it. Quote Link to comment Share on other sites More sharing options...
MikeO Posted April 1, 2022 Report Share Posted April 1, 2022 On 3/23/2022 at 3:47 PM, RecipeForDisaster said: Been there, done that. Got slightly panicked after about 16 hours when it was clear I would not be able to fit 24 hours worth in there. Found a way to get another container! I ran out of room as well. Haha i used a hefty 8 cup food container to catch the rest. The lab had me transfer the fluid into the right container. Hindsight if i ever have to do this again i will ask for two jugs right away. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted April 2, 2022 Report Share Posted April 2, 2022 The blood test for norepinephrine is important because it must be handled properly. My dysautonomia doctor made me stand and I had to stand until I felt like I was close to fainting. They needed to get the blood at the point when I was in the most distress. If I fainted, the test is invalid. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 2, 2022 Report Share Posted April 2, 2022 @DizzyGirls @MikeO the urine metanephrine test measures how much neurotranmitters you produce in a 24 hr period. The blood test measures how high they go at rest and after stress. As far as I know you need the blood test to see if the adrenaline level goes up at certain times and causes symptoms, that is why in most autonomic clinics they do the blood test. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted April 2, 2022 Author Report Share Posted April 2, 2022 Ohhh, makes sense. Sounds like one of those more specialized tests that have several moving parts to it! Quote Link to comment Share on other sites More sharing options...
MikeO Posted April 2, 2022 Report Share Posted April 2, 2022 27 minutes ago, Pistol said: The blood test measures how high they go at rest and after stress. I tried for the blood testing seems to be a bit elusive as to finding anyone in wisconsin anymore that can administer and read test the results. Quote Link to comment Share on other sites More sharing options...
MikeO Posted April 2, 2022 Report Share Posted April 2, 2022 Got my test results back. Not sure what any of this means but here it is. Component Results Component Your Value Standard Range Flag Hours Collected 24 hr hr Per 24h calculations are provided to aid interpretation for collections with a duration of 24 hours and an average daily urine volume. For specimens with notable deviations in collection time or volume, ratios of analytes to a corresponding urine creatinine concentration may assist in result interpretation. Total Volume 3290 mL mL Metanephrine, Urine - per volume 50 ug/L ug/L Normetanephrine, Urine - per volume 134 ug/L ug/L Metanephrine, Urine - per 24h 164 ug/d 55 - 320 ug/d Metanephrine, Urine - ratio to CRT 85 ug/g CRT 0 - 300 ug/g CRT Normetanephrine, Urine - per 24h 441 ug/d 114 - 865 ug/d Normetanephrine, Urine - ratio to CRT 227 ug/g CRT 0 - 400 ug/g CRT Metanephrines, Urine Interpretation See Note TEST INFORMATION: Metanephrines Fractionated, Urine Smaller increases in metanephrine and/or normetanephrine concentrations (less than two times the upper reference limit) usually are the result of physiological stimuli, drugs, or improper specimen collection. Essential hypertension is often associated with slight elevations (metanephrine less than 400 ug/d and normetanephrine less than 900 ug/d). Elevated concentrations may be due to intense physical activity, life-threatening illness, and drug interferences. Significant elevation of one or both metanephrines (three or more times the upper reference limit) is associated with an increased probability of a neuroendocrine tumor. Access complete set of age- and/or gender-specific reference intervals for this test in the ARUP Laboratory Test Directory (aruplab.com). This test was developed and its performance characteristics determined by ARUP Laboratories. It has not been cleared or approved by the US Food and Drug Administration. This test was performed in a CLIA certified laboratory and is intended for clinical purposes. Creatinine, Urine - per volume 59 mg/dL mg/dL Creatinine, Urine - per 24h 1941 mg/d 800 - 2100 mg/d Performed by ARUP Laboratories, 500 Chipeta Way, SLC,UT 84108 800-522-2787 www.aruplab.com, Tracy I. George, MD, Lab. Director Quote Link to comment Share on other sites More sharing options...
MikeO Posted April 5, 2022 Report Share Posted April 5, 2022 I did get a response from my PCP as to my last test. Comments from the Doctor's Office No pheochromocytoma, there was 1 other labs that I came across had a like to get for you it and aldosterone to renin ratio. This can indicate hyperaldosteronism. I will have my staff reach out to you and help coordinate. Not sure what hyperaldosteronism means. @Pistolmay know Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 6, 2022 Report Share Posted April 6, 2022 @MikeO if you have hyperaldosteronism you usually suffer from very high BP. I know that checking your urine metanephrines is a way to check for pheochromocytoma but it is not the same as checking your serum norepinephrine levels. However - ANYONE experiencing certain symptoms of dysautonomia ( high BP, dizziness but also many other symptoms ) should - IMO - have pheo ruled out before dysautonomia is suspected. It is rare, but the symptoms very much overlap those of dysautonomia. Quote Link to comment Share on other sites More sharing options...
MikeO Posted April 13, 2022 Report Share Posted April 13, 2022 For inquiry minds here is my Aldosterone to renin ratio test results. The renin activity is a bit on the high side. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted April 24, 2022 Report Share Posted April 24, 2022 Many years ago I had my catecholamines tested via serum during my TTT. Norepinephrine was above 600 when upright. I recently had my urine catecholamines tested and they were below lab range which they say is 'normal'. They are only looking for high levels in urine, but clearly it is different since those high upright serum levels are not showing in the urine for me. Quote Link to comment Share on other sites More sharing options...
Jason_X Posted July 11, 2022 Report Share Posted July 11, 2022 I looked into this test last year. The complication is that I am now on blood pressure meds because of high blood pressure. I saw a comment above about being off meds for 72 hours for the test. I was told that I needed to be off these meds for two weeks. My hormone doctor was reluctant to have me off the BP meds that my heart doctor prescribed. My heart doctor was unfamiliar with the hormone test. I could never get a plan from them to get tested. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 12, 2022 Report Share Posted July 12, 2022 1 hour ago, Jason_X said: . My hormone doctor was reluctant to have me off the BP meds that my heart doctor prescribed. My heart doctor was unfamiliar with the hormone test. I could never got a plan from them to get tested. Yes, I have run into this scenario because of dysautonomia. Each specialist does not want to take responsibility for the other doctors drugs. And I can see their predicament - if they did not order the medication they cannot order to stop it. This is medical politics, sadly. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 12, 2022 Report Share Posted July 12, 2022 12 hours ago, Jason_X said: I looked into this test last year. The complication is that I am now on blood pressure meds because of high blood pressure. I saw a comment above about being off meds for 72 hours for the test. I was told that I needed to be off these meds for two weeks. My hormone doctor was reluctant to have me off the BP meds that my heart doctor prescribed. My heart doctor was unfamiliar with the hormone test. I could never got a plan from them to get tested. I did read somewhere that withholding meds for two weeks is required (not sure if that is for a different variant of the test ?) but the tech had told me 72 hours she also added if i could not it would be ok as well. I did have to reach out to my cardiologist and ask what meds i could stop he was ok with everything but the Ranolazine and Carvedilol (he did not recommend stopping these abruptly). I agree with @Pistolbut i have also been caught up in the crossfire of to many Docs with their fingers in my pot when it comes to meds (have had bad outcomes in the past ) Cardiology adds a drug then my PCP adds on then a NP adds on and before i know it i am in trouble. My vascular team and faint team and PCP now reaches out to my Cardiologist before recommending changes to most of my meds. Life has been much better! Quote Link to comment Share on other sites More sharing options...
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