Raised catecholamines and metanephrines!

[harpersmama]

Does anyone know a cause of raised catecholamine and metanephrine levels in a 24 hour urine if no pheochromocytoma is located in an adult? I have been ill for 13 months and this is the only "positive" test we have to go on. Would appreciate your insight.

[rumpled]

Oh good - I am glad that they are looking further - but I would make sure that you see an endo - a competent endo - so you get the testing that you need. Imaging only gets you so far. A surgeon will want tests.

I had a different disorder - mine was Cushing's (pituitary) but I also had both my adrenals removed). I have had multiple tumors, cysts or whatever, in many places - and it had left me with a non-functioning endocrine system.

[harpersmama]

Thanks for your story. I appreciate the insight! This neuro first ordered the CT with contrast because it could be done I the next day. Tomorrow I am going for  nuclear imaging, so that should hopefully find anything inside or outside the adrenals or in my stomach. If not I will bring up the sampling search. I have been acutely ill for a year and have seen soooo many doctors. This current neuro was seeing me for occipital neuralgia and could tell by looking at me there is something wrong. SO I was grateful he was knowledgeable enough to order the 24 hour urine and subsequent testing. What tarts dis you have that made you surgeon look for a tumor? Or what was your surgery? Removal of the gland? Appreciate you! Amanda

[rumpled]

Was the "no pheo" located in a CT?

I would get another opinion. If you get to a neuro-endo at a pituitary center or to an experienced doctor - they will know that a CT may or MAY NOT show lesions.

I can tell you in my experience that my adrenals showed up normal the day before my surgery, but my pathology showed them to be 2x normal size. I had a scan 30 days after my surgery, and they scan said my adrenals were normal. I just had another scan and it said my adrenals were atrophic. LOL.

This has happened to others, in other countries as well - so imaging is just not perfect when it comes to the adrenals. Do a search and you can see there are even papers on it.

My surgeon was aware of it and was fine with going on my testing, but his resident was frankly nasty when the surgeon was out of the room and thought I was surgery seeking (this was #11 I think) and said there was not reason but after he assisted he changed his tune - it is a matter of experience and now that idiot I mean doctor to be has some and realized finally that you have to take the whole patient and look at all the data.

So you need more testing - and they can also even go in and do a sampling test as well if they are really trying to determine which adrenal. You need a better set of docs - that tumor is nasty and dangerous.