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Well, I finally went to an Internal Medicine doctor to get some more testing done. He ordered a bunch of 24 hour urine tests and some blood work. I am doing most of it tomorrow but turned in one of the urine tests and my 5-HIAA level came back extremely high. So now he is pursuing more testing including bloodwork and a CT chest and abdomen to look for a possible Neuroendocrine tumor. Ick......Anyone else have abnormal stuff on their urine?

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Nope. Mine always showed normal. I would be kind of excited for something abnormal. A lot of my tests come back normal and it is always a let down. I feel like they should find something. 

What is 5-HIAA?

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My third 24 hour urine catch for catecholamines just came back normal (apart from the volume, 6 litres) which is normal for me because I don't retain fluids, but I have never had it checked for 5-HIAA. 

That's a test for carcinoid syndrome by the way. It is a rare neuroendocrine tumour, usually found in the gut, that can cause wacky autonomic symptoms. 

The good news is if that's what you have, it is treatable. 

I would have to pay a lot for that test in the UK, and so far haven't bothered as it is so rare & I don't have other symptoms like flushing or diarrhoea, but I may just get it done to be sure. There has been at least one lady on here whose POTS turned out to be carcinoid. I think her name was Janiedelite & that her mother had it also. I don't know if she is active on the site any more. 

I know it is scary but you could actually be onto something that results in an effective treatment for you!!

Good luck with your follow up, please let us know what happens!

B x

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Sorry to hear about the 5-HIAA test. My basic tests come back normal. The test you took is very specific. Those tumors are very small and can be missed on CT. usually they do a combination of scans, like CT with contrast at PET scan. So what led him to order the 5-HIAA test? My doctors seem to be reluctant to order anything. I actually paid out of pocket for Sedimentation Rate-Westergren, Immunoglobulins, Quantitative, IgA, IgG, IgM Blood, C-Reactive Protein (CRP), High Sensitivity (Cardia), Tumor Necrosis Factor- Alpha, Antinuclear Antibodies (ANA) Direct, CBC/Chemistry Profile) and it came back normal range. This was back in december though. A neurotransmitter panel is somewhat expensive. A few hundred bucks probably. I've asked about PNS and carcinoid and I get the you're crazy look. 

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Maybe it’s an IM specialist thing because the one I saw also ordered a handful of urine tests, 5-HIAA included, when no other doctor had even suggested these. Everything came back fairly normal though.

Keep us updated! Like the others said, hopefully it is something easily treatable! 

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16 hours ago, JimL said:

I've asked about PNS and carcinoid and I get the you're crazy look. 

There is an alternative test for carcinoid, a blood test called chromogranin A which you could look into. I don't know about the US but you can obtain it privately here in the UK for about £169.

I am considering it in place of the urine 5-HIAA which I would have to travel to London for and stay somewhere overnight as it is a 24 hour collection. Also producing an abnormally large volume of urine could render it less accurate for me, not to mention having to ask for multiple containers like I did for the pheo test!

B x

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Thanks to everyone for the replies!  The IM doctor that I went to is one of the doctors that I work with and he is a really brilliant, super nice doctor who likes to solve problems and figure things out.  He just added an AM/PM Cortisol, another urine test called a VMA, and the Chromogranin A blood test.  It sounds like Mastocytosis and/or MCAS can also cause some similar elevations, so I am curious to see what will become of all this.  I have also had issues in the past with flushing, as well as POTS symptoms that were initiated after a course of Prednisone, so he was particularly interested in the Adrenal/Cortisol path as well as some other issue with the Endocrine system.  Glad I went to him.  We will see.  I have to wait a week probably for all of the results.  Sounds like the Chromogranin A is the most specific.  If that comes back good then I will probably ask about more on the MCAS/Mastocytosis level (I think testing for Tryptase?).  Thanks everyone!

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On 3/7/2019 at 7:10 PM, MeganMN said:

Thanks to everyone for the replies!  The IM doctor that I went to is one of the doctors that I work with and he is a really brilliant, super nice doctor who likes to solve problems and figure things out.  He just added an AM/PM Cortisol, another urine test called a VMA, and the Chromogranin A blood test.  It sounds like Mastocytosis and/or MCAS can also cause some similar elevations, so I am curious to see what will become of all this.  I have also had issues in the past with flushing, as well as POTS symptoms that were initiated after a course of Prednisone, so he was particularly interested in the Adrenal/Cortisol path as well as some other issue with the Endocrine system.  Glad I went to him.  We will see.  I have to wait a week probably for all of the results.  Sounds like the Chromogranin A is the most specific.  If that comes back good then I will probably ask about more on the MCAS/Mastocytosis level (I think testing for Tryptase?).  Thanks everyone!

It sounds like you are very lucky. Having those interested doctors makes the most progress. Good luck on your test results. 

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And of course, the Chromogranin A came back slightly elevated which is not totally conclusive.  Still waiting on the Methyl Histamine to help point to MCAS versus Carcinoid.... then will probably be getting an OctreoScan.  learning so many new terms.........

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