lieze Posted June 8, 2011 Report Share Posted June 8, 2011 Any one else get tested for this?I am supposed to but you have to abstain from bananas and several other fruits tea and coffee three days prior to the 24 hr urine and right now I need my bananas.Until I can find other things to replace it I am kind of stuck putting off the test. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted June 8, 2011 Report Share Posted June 8, 2011 Yep, had elevated 5HIAA? so did the whole three day octreotide scan....did not find any tumors. That was 2 1/2 years ago when the flushing and shortness of breath was starting to get bad. Don't think they told me to abstain from eating bananas, so maybe that is why it was high.The octreotide scan test is VERY expensive like $11,000.000. My most recent 5HIAA test was normal.Been checked for tumors on the adrenals, ect, and nothing shows up, just have elevated adrenaline, histamine, & flushing. Currently waiting on biopsy results from nodule on my right thyroid that is increasing in size and causing me to get very hoarse. Had the biopsy 8 days ago, and last I called the dr office it is in his inbox waiting for him to look at it.....while I sit here wondering if I have cancer and have to have surgery.If it is bad might explain the flushing and problems I am having. I hate waiting. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 8, 2011 Report Share Posted June 8, 2011 WOW, the ocreotide scan is $11 million dollars???? I guess my insurance will turn that test down for sure!! I had a couple of 5-HIAA tests that show normal, as they test for a cause of my flushing. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted June 8, 2011 Report Share Posted June 8, 2011 sorry....meant 11 thousand.....not enough blood to my head today! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 8, 2011 Report Share Posted June 8, 2011 Oh, no need to apologize! I should have put "just joking" in my post, as I knew what you meant! My first scan when I read looked like $11 million, but my second scan saw the period, and one extra zero. I laughed to myself, and couldn't resist. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 8, 2011 Author Report Share Posted June 8, 2011 Is that the same scan they do for a pheo?Does it take a couple days and use radioactive type dye?I wonder if I'd have a reaction to the dye since I react to so many things? Quote Link to comment Share on other sites More sharing options...
kluesyk Posted June 8, 2011 Report Share Posted June 8, 2011 They did give me a type of tracer injection....I think is was radioactive. I don't do well with contrast dye (hives) but did ok with this. It took returning three days to the hospital for scanning. They want to watch the elimination of the tracer to see if any tumors light up.It was hard to lie there for 40 and more minutes at a time.Hope your 5hIAA levels are ok and you don't need the scan. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted June 8, 2011 Report Share Posted June 8, 2011 My mom has had carcinoid syndrome for decades. The best marker to test for is CgA (Chromogranin A). It's a blood test. Her octreoscans are always normal. But she's had 2 surgeries that prove that she's got tumors peppering her liver, gut, lungs, etc. Her tumors metabolize the octreotide so quickly they never catch any "hot spots" on the scan. I've also participated in our local neuroendocrine support group for some time and only about 1/2 of those patients actually show tumors on the octreoscan. If you don't show up on an O scan, a CT with contrast often catches the tumors if they're large enough (not just pepper sized like my mom's). Also, most radiologists don't recognize that carcinoid tumors often have different density than regular GI/lung tumors. Each time my mom gets her CT done, the interpretation is a bit different. She goes to a specialist in New Orleans who only cares for carcinoid patients and he'll point out at least a dozen tumors on her scans that the radiologists have never even mentioned.CgA is a protein released by carcinoid tumors while they are active. Most carcinoid tumors aren't active all of the time (just like most of us don't flush all of the time). This blood test will check for carcinoid activity within the last 7 days. 5HIAA only checks for carcinoid activity within the 24 hours of the test. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 8, 2011 Author Report Share Posted June 8, 2011 Wow that was really helpful.It sounds like it would be easier to just do the blood test. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted June 9, 2011 Report Share Posted June 9, 2011 Wow Kluesyk....have you considered getting test for MCAD? A friend of mine that has POTS/dysautonomia had high catecholamines and they thought she had pheochromocytoma for sure. She went to NIH and everything. But she has mast cell activation just diagnosed by skin biopsy. Your situation just struck me for MCAD. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted June 9, 2011 Report Share Posted June 9, 2011 I tried to get in to see a dermatologist when I had three strange skin patches on my chest, but could not see him until they had faded. (Too long of a wait for an appointment) He wouldn't do a biopsy, said to wait to see if they came back. They are still faintly there.My patches looked like a bruise at first(brownish) then went to a reddish vascular looking patch(not raised and didn't itch a whole lot). My breast doctor told me to see a dermatologist, but I got a steriod shot for an URI and they started to fade. I had them for 3 months.What other definitive test can determine mast cell disorder? I know at one time the histamine was high in my urine test. I already take zyrtec and benadryl(I have for years) and most of my swellings are controlled. Quote Link to comment Share on other sites More sharing options...
lieze Posted June 9, 2011 Author Report Share Posted June 9, 2011 My spots are very small and light brown the color of coffee with cream. They follow a pattern as if they run along the nerves and they are located starting from my back and under arm area and run under both breasts along my ribs.I have them on both sides. They are just slightly raised and a bit fragile-you can scrape them off with a finger nail and they don't really bleed much.If they come off and they do you cam almost see missing spots if you would look at it as an overall pattern they just get a little red and then heal in normal skin color.They do scar a bit I think but in time I think that scar gets replaced with new skin because I'm by really all scarred up or anything.I think it would be very easy to get a biopsy of one of these and not be very invasive at all. Quote Link to comment Share on other sites More sharing options...
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