The tests can vary even though you are sick as surgi said - I would be persistent and keep at the docs.
I am going through this as well. They did a contrast CT scan to check my renal artery function. They also did a contrast MRI to check to see if I had a Pheochromocytoma tumor which my 24 hour unrinalysis indicated. both said that they were normal other than the ct scan indicating inflamed lymph nodes and the MRI did not. I don't think they half know what goes on with these tests. My normal blood pressure is 116/72 which is wonderful but recently it will be 178/127 and then all of a sudden drop to 99/58. I feel like i am going to pass out at times, my memory is going and extreme extreme fatigue. I am at my wits end.
Correction- norepinephrine is involved in some emotions, but anxiety is what makes epinephrine go up.
I really would see someone else about the catecholamines. The epinephrine is what would react to emotional stress, and yours was fine! Although I've read if the norepineprhine goes high enough, it can induce a panic attack, norepinephrine is part of the autonomic nervous system and is not controlled by your emotions. You can research this to check what I'm saying.
If you have a pheochromocytoma emitting norepinephrine, there can be periods where the tumor is silent and you get a normal result. Your norepinephrine level I would think would cause a competent endocrinologist to not decide it's just stress because of one normal result. Plasma free metanephrines are highly sensitive for detecting pheochromocytoma. You would want to do it when your symptoms have been particularly bad. It is supposed to be done fasting and avoiding tylenol (or generic) for at least 48 hours, etc (see labtestsonline).
As far as I know, just a regular CT scan will do. But adrenals are funny little things, and I know from others that have had adrenal issues, not just the same as mine - that CTs are not always the be all end all... I know someone that had a pheo hide on a scan.
My cts were normal even though my adrenals were abnormal - that has happened a lot for us Cushing's folk.
I forgot to mention I've had an Octreotide scan for carcinoid but nothing showed up. I am wondering what type of scan do they do for pheochromocytoma? Do either of you know? Thanks.
Hello...I came across your thread when researching my own symptoms. I am on what seems a similar roller coaster ride. I have many of the same symptoms..flushing, night sweats, abnorrmal heart rate. URQ and back pain. nausea and no appetite. I have had many scans that found nothing yet my serotonin was slightly high as well as my ChromograninA blood test. I am at wit's end.
lil sunshine....hope you found some answers for your daughter...I would suggest someone who is a specialist in pheochromocytoma and carcinoid...to definitively rule them out. She seems a bit young for carcinoid.
iris986....my symptoms are almost identical to yours. I also have insomia...I sleep maybe two hours at a time and wake in the midst of a sweating episode. Can you tell me how you are doing and what tests and/or diagnosis they have come up with.
I hope both of you are finding answers...and that it's something easily remedied. Would really appreciate hearing back from you. All the best....
Have they checked her for a pheochromocytoma? The other thing high VMA indicates is that protein is spilling into the urine.
What other labs did they run that were abnormal?
My daughter is in your situation, her VMA was elevated but the other tests were normal. She has other labs, blood tests , though that were not normal that have her drs thinking all kinds of weird dx. She has flushing, diareah, abdominal pain , nausea to name the most obviuos. Her BP runs normal to low but her pulse runs high? around 120 or so and then bottoms out at around the 90's. She looks like death warmed over when she isn't flushing and she is tired all the time. No body imaging done yet except for on the 2nd she had a SBFT(small bowel follow thru) . Her colonoscopy is scheduled for the end of the month.No one has suggested stress to her yet but they have mentioned carcinoid and hereditary angioedema. We will have to see what these 2 tests yield in the way of answers. Curios that the ENdo drs for her have taken a backseat to the GI drs.
I will keep following your postings for future updates. Good luck. I have head it takes years to get a dx , I hope not for your sake and my daughter's.
It is good you are getting another opinion.
I am also having MD Anderson look at the reults, I don't trust my Endo alot he is always in a hurry to get you out of there. Everything i read on the net says if the plasma catecholamines test is High they should further investigate it even if the 24 hour urine fractional metanephrines is normal. But my endo says its just stress,told me he didn't want to see me back for 4-6 weeks.
Find a neuro-endo. The thing is that your blood pressure should be HIGH with the results, not low, so that is very strange.
You are tachy when your bp is low - I get that a lot.
A lot of docs do not "buy" that a body can cycle in symptoms. You have to find another doctor - one that knows pituitary and adrenals.