24-hour urine collection for 5-HIAA

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24-hour urine collection for 5-HIAA

by jessica4moe on Sat Feb 04, 2012 04:29 PM

Quote | Reply

Hi,

I have had diarrhea since around 1999, which has been attributed to Irritable Bowel Syndrome that started within a year of having my gallbladder removed.

More than two years ago, in Oct/Nov 2009, the flushing started. Over the course of 6 months we ruled out things such as allergies, intestinal parasites, low estrogen, etc that may cause flushing. Either I've gotten used to it, stopped eating foods as much that cause it, or its become less frequent over time. My daughter says my face is still red all the time so I think I may just be adapting. (Except when I am at work and see myself on the video conference screen -- bright red -- so embarrassing!)

Im August of 2010-December 2010 I had off and on problems with wheezing. I saw a doctor and was put on Albuterol for Asthma (which I thought I had outgrown as a child) but it made my heart race and didn't do anything to resolve the wheezing. So I went on QVAR (corticosteroid inhaler) in Jan of 2011, had my dose upped to the max, and got the wheezing under control. All this time I still have the flushing problem.

Recently I brought up the "chief complaint"of flushing to my endocrinologist who is treating me after I had my thyroid totally removed in April 2009 (well-differentiated papillary thyroid carcinoma). She has ordered the 24-hour urine collection, to test for 5-HIAA (because i asked) along with several other things (cortisol and other stress markers).

But the last really bad flushing I had was at least a week ago. I am worried that if I do the 24-hour collection on the wrong day (during a several day stretch where my flushing episodes are very minor/brief and maybe only once a day if that), that perhaps the 5-HIAA might be normal. I guess what I am asking is, is the elevated 5-HIAA level directly associated with the same time you are having more pronounced symptoms?

I have been avoiding foods on the list for close to a week (some I never eat, like kiwi gives me a rash and avocado causes diarrhea so bad it's like acute food poisoning). So I can do the collection any time (Sunday and Monday work best for my schedule since I can stay home those days). Should I wait another week or two until my flushing and diarrhea become worse, and then do the 24-hour collection?

I am hoping that some of you have had multiple urine tests with varying levels and have some insight into the "timing" issue. If the urine tests come back fine, I don't know if my doctor would even bother to proceed to do imaging studies or colonoscopy/endoscopy/bronchoscopy to look for a tumor.

Jessica

RE: 24-hour urine collection for 5-HIAA

by LauriG on Sun Feb 05, 2012 10:00 AM

Quote | Reply

Hi Jessica, I might not be the best one to reply in that my 5HIAA has always come back as normal and no tumours have been found yet. However I have been confirmed as having the syndrome due to elevated blood serotonin and the fact that my symptoms are controlled by injections of Sandostatin. The 2009 Diagnostic manual for NETS says that the 5HIAA test detects about 84% of patients with carcinoids, but that no single measurement (i.e. blood test or urine test) detects all cases of carcinoid syndrome. In fact, Buzzle.com says that approx 15% of carcinoid patients may have all blood markers and 5HIAA urine tests in normal range. I am not saying that to worry you, but to arm you with info to take to your doctor if the tests come back as normal.

One of the difficulties too is that it is not necessarily serotonin causing the flushing (let me know if you want the name of the journal article on this). There are other chemicals the tumours secrete which may be more responsible for this aspect of the disease, while serotonin causes the diarrhoea (Aussie spelling!). So it is possible to flush during the urine collection and still have normal levels.

One of the things that proved helpful in me obtaining my diagnosis was to plot on a calendar when I had my symptoms and how severe they were (e.g. whether a normal, medium or extreme flush and how many in a day;  when having pain; when heart palpitations; when going to the toilet frequently). I did not have symptoms 100% of the time, and my blood serotonin was not elevated all of the time, but my symptom calendar demonstrated an increase in symptoms over time. The other thing that was helpful was for me to take photographs of my flushes with me to the doctor.

There is so much that is helpful to know when it comes to getting diagnosed, so let me know if you want more info. For example, your flushes will look different depending on where the tumour is located, so it is important to know whether your flushes are pink to red and fade relatively fast, or if they are very deep red to purple and last for hours. Also, Dr Pommier says in a lecture that you can watch online that it is common for carcinoids to grow to the outside of the bowel wall rather than the inside, which means they may not be visible on colonoscopy/endoscopy etc. I would recommend watching it. Link is:

http://itr8.com/hosted/ccf/mtsinai09/presentation_links.htm

Let me know how you go with your tests.

Blessings, Lauri.

RE: 24-hour urine collection for 5-HIAA

by jessica4moe on Fri Feb 10, 2012 05:55 AM

Quote | Reply

Thank you Lauri, that is alot of good information! I will start doing the calendar, because I noticed the symptoms peak and wane from day to day. Some days I flush a little, and some days it looks like a really bad sunburn. My flushing is always pink to red, never purple. Sometimes I get a red spot that last for hours after the flush fades. There are two places on my face where the spot comes back regularly.

Now I know this might sound strange, but it seems that when I am at work and taking part in a conversation, I almost always get flushed. The more I talk, the more flushed I am. I think people must think I am embarrassed or something. Very awkward!

I would be very interested in the name of the journal and/or article that mentions other chemicals that might be responsible for flushing. As I am worried the test might come back negative but I hope my endocrinologist will continue to order diagnostics until I have an answer. But now I have to wait until next week as I got my period the day before I was going to do the 24-hour collection, and I don't want it contaminated. So I am hoping by Tuesday or Wednesday of next week I can do it.

Also, I have read here and there that it takes a long time to get results back, but I don't know if people were referring to blood tests or the urine test. Any idea how long I might be kept waiting for the urine test?

Thanks again Lauri, you are very helpful to me!

Grace and peace,

Jessica

 

RE: 24-hour urine collection for 5-HIAA

by LauriG on Sat Feb 11, 2012 03:13 PM

Quote | Reply

Hi Jessica,

The article that talks specifically about serotonin possibly not being the primary cause of flushing is laborious to read but very informative, and not just the flushing section, although it is the section on Flushing starting on page 393 that speaks about studies into this. The article is:

"Clinical Features of Carcinoid Syndrome and the use of Somatostatin Analogue in its management" by Vinik, Thompson, Eckhauser & Moattari in Acta Oncologica 28 (1989) Fasc.3

I was able to download a free copy of the article from informahealthcare.com   - if you can't get it, send me a private message and we can exchange e-mail addresses so I can send you a copy.

There is also another article "What is the cause of the carcinoid flush?" by D G Grahame-Smith in Gut, 1987, 28, 1413-1416

I know what you mean about the flushes. My colleagues at work actually said they had noticed my flushing getting worse over about a 4 year period, before I got abdo pain that thankfully led to an on-the-ball surgeon noticing my flushing when taking my appendix out. He ordered a blood serotonin test that came back a little high, and so began the diagnostic journey! I used to only flush from alcohol and extreme emotional distress, but then it started happening with normal stress and eating, and then toileting, and eventually for no apparent reason at all. It became very difficult at work because I am a counsellor, and clients are always sensitive to my reactions to them. If they thought what they were saying was making me red it was not good. It was such a relief to get onto Sandostatin and have the flushes brought under control.

One thing I found frustrating in the 12 months it took me to gather the needed info for my doctors was that I had difficulty finding photos of the carcinoid flush. The only ones I could find online were people with bright red faces, and sometimes bright red faces neck and chest. Mine weren't like that, mine were more blotchy. Sometimes I would have just one red ear and a few pink patches on the cheek and neck. In the end I had two different types of flushes happening. At one stage I did find a photo of a woman with flushes like mine, but it was a depressing find because she was a young woman who died not long after. Although she did have lots of liver mets, and if I had lots of liver mets something would have shown up on my recent PET scan. Anyway, if it would be helpful for you to see photos of my flushes, again, send a private reply and I can e-mail them.

I can't recall for sure how long it took to get my urine tests back, but it may even be different time frame for you because I live in Australia. My Chromogranin A blood test is the one that takes the longest (4-6 weeks) because it gets sent to Tasmania, the other end of Australia to where I live.

I really hope that you get some answers soon.

Blessings,

Lauri. 

RE: 24-hour urine collection for 5-HIAA

by LauriG on Tue Feb 14, 2012 12:38 PM

Quote | Reply

OOPS! I must have been feeling depressed and hopeless when I was looking at the photo of the girl with flushes like mine. I came across it again today, and it does not say she died! Instead it says that she had multiple metastases in her liver and was awaiting a liver transplant.

So there you go, I was being more doom and gloom than I needed to be!

RE: 24-hour urine collection for 5-HIAA

by jessica4moe on Wed Feb 15, 2012 05:45 AM

Quote | Reply

No worries, Laurie!

I did the 24-hour collection yesterday and took it to the lab this morning. I asked that they mail me a copy of the results in addition to sending them to my endocrinologist. She said it probably will take 3-5 days for the results.

I've been reading the articles you referred me to -- got through the short one and am about 2/3 the way through the longer one. I've also been reading "Between Me and the River" on my Kindle when I am on the train to/from work. That story is gloomy and has me crying on one page, and is funny and has me laughing on the next!

Jessi

RE: 24-hour urine collection for 5-HIAA

by jessica4moe on Sat Feb 18, 2012 02:10 PM

Quote | Reply

On Feb 11, 2012 3:13 PM LauriG wrote:

Hi Jessica,

The article that talks specifically about serotonin possibly not being the primary cause of flushing is laborious to read but very informative, and not just the flushing section, although it is the section on Flushing starting on page 393 that speaks about studies into this. The article is:

"Clinical Features of Carcinoid Syndrome and the use of Somatostatin Analogue in its management" by Vinik, Thompson, Eckhauser & Moattari in Acta Oncologica 28 (1989) Fasc.3

I was able to download a free copy of the article from informahealthcare.com "" target="_blank" rel="nofollow">http://informahealthcare.com " target="_blank" rel="nofollow">informahealthcare.com   - if you can't get it, send me a private message and we can exchange e-mail addresses so I can send you a copy.

There is also another article "What is the cause of the carcinoid flush?" by D G Grahame-Smith in Gut, 1987, 28, 1413-1416

I know what you mean about the flushes. My colleagues at work actually said they had noticed my flushing getting worse over about a 4 year period, before I got abdo pain that thankfully led to an on-the-ball surgeon noticing my flushing when taking my appendix out. He ordered a blood serotonin test that came back a little high, and so began the diagnostic journey! I used to only flush from alcohol and extreme emotional distress, but then it started happening with normal stress and eating, and then toileting, and eventually for no apparent reason at all. It became very difficult at work because I am a counsellor, and clients are always sensitive to my reactions to them. If they thought what they were saying was making me red it was not good. It was such a relief to get onto Sandostatin and have the flushes brought under control.

One thing I found frustrating in the 12 months it took me to gather the needed info for my doctors was that I had difficulty finding photos of the carcinoid flush. The only ones I could find online were people with bright red faces, and sometimes bright red faces neck and chest. Mine weren't like that, mine were more blotchy. Sometimes I would have just one red ear and a few pink patches on the cheek and neck. In the end I had two different types of flushes happening. At one stage I did find a photo of a woman with flushes like mine, but it was a depressing find because she was a young woman who died not long after. Although she did have lots of liver mets, and if I had lots of liver mets something would have shown up on my recent PET scan. Anyway, if it would be helpful for you to see photos of my flushes, again, send a private reply and I can e-mail them.

I can't recall for sure how long it took to get my urine tests back, but it may even be different time frame for you because I live in Australia. My Chromogranin A blood test is the one that takes the longest (4-6 weeks) because it gets sent to Tasmania, the other end of Australia to where I live.

I really hope that you get some answers soon.

Blessings,

Lauri. 

Hi Laurie, I also found another article that (briefly) mentioned what you said about serotonin not being the primary cause, and it also mentioned they found no correlation between flushing episodes and 5-HIAA concentrations:


"Contrary to our expectations, the rates of 5-HIAA excretion were higher in the intervals without flushes than in those with flushes.

This might be explained by the idea that hormones other than serotonin (e.g., tachykines) play a role in the pathogenesis of flushing."

The article is named

Daily Cyclic Changes in the Urinary Excretion of 5-Hydroxyindoleacetic Acid in Patients with Carcinoid Tumors

and I found it on the "Clinical Chemistry" site.

 Here's the URL:

http://www.clinchem.org/content/50/9/1634.full

RE: 24-hour urine collection for 5-HIAA

by jessica4moe on Sat Feb 25, 2012 03:17 AM

Quote | Reply

Okay, so I got back my test results. Urinary 5-HIAA was in the normal range. Other tests my doctor had ordered also came back in the normal range-- Metanephrine, Normetanephrin, and Metanephrine, total. One test came back slightly elevated but I am guessing my Dr will say it is of no concern -- that was creatinine.

I don't know if my endocrinologist will pursue any further testing given the normla 5-HIAA result, and i have read that up to 15% of people with Carcinoid Syndrome don't have elevated 5-HIAA. I think Lauri was one of the people who always has normal values. So where do I go from here? Do I take these test results and feel happy that nothing bad is indicated, and just try to live with the flushing and racing heart beat? I don't want my Dr or insurance company to think I am a ""cyberchondriac"but I also don't want to overlook the possibility that it still couild be carcinoid. Actually, I wish I could just get my Dr to prescribe the sandostatin injections (the ones you can do yourself three times a day) to see if it has any effect on the flushing. But I have heard that it is expensive so that is probably not likely to happen.

Any advice?

Jessi

RE: 24-hour urine collection for 5-HIAA

by hattie18643 on Sat Feb 25, 2012 03:32 AM

Quote | Reply

On Feb 25, 2012 3:17 AM jessica4moe wrote:

Okay, so I got back my test results. Urinary 5-HIAA was in the normal range. Other tests my doctor had ordered also came back in the normal range-- Metanephrine, Normetanephrin, and Metanephrine, total. One test came back slightly elevated but I am guessing my Dr will say it is of no concern -- that was creatinine.

I don't know if my endocrinologist will pursue any further testing given the normla 5-HIAA result, and i have read that up to 15% of people with Carcinoid Syndrome don't have elevated 5-HIAA. I think Lauri was one of the people who always has normal values. So where do I go from here? Do I take these test results and feel happy that nothing bad is indicated, and just try to live with the flushing and racing heart beat? I don't want my Dr or insurance company to think I am a ""cyberchondriac"but I also don't want to overlook the possibility that it still couild be carcinoid. Actually, I wish I could just get my Dr to prescribe the sandostatin injections (the ones you can do yourself three times a day) to see if it has any effect on the flushing. But I have heard that it is expensive so that is probably not likely to happen.

Any advice?

Jessi

Hi,

 

I get the flushing of the face and rapid heartbeat. I can actually feel it coming up from my chest. Is that how your acts? I have a tumor on my right kidneyand going to fox chase hospital in 2 weeks. Can you give me more symptoms you get with the flushing. My dr for 3 years it is probably anxiety. I still suffer with it and it comes now and then.

Any help will be greatly appreciated.

 

Good luck and God Bless

Xeb

RE: 24-hour urine collection for 5-HIAA

by Sydneygal on Sat Apr 11, 2015 02:22 AM

Quote | Reply

On Feb 05, 2012 10:00 AM LauriG wrote:

Hi Jessica, I might not be the best one to reply in that my 5HIAA has always come back as normal and no tumours have been found yet. However I have been confirmed as having the syndrome due to elevated blood serotonin and the fact that my symptoms are controlled by injections of Sandostatin. The 2009 Diagnostic manual for NETS says that the 5HIAA test detects about 84% of patients with carcinoids, but that no single measurement (i.e. blood test or urine test) detects all cases of carcinoid syndrome. In fact, Buzzle.com "" target="_blank" rel="nofollow">http://Buzzle.com " target="_blank" rel="nofollow">Buzzle.com says that approx 15% of carcinoid patients may have all blood markers and 5HIAA urine tests in normal range. I am not saying that to worry you, but to arm you with info to take to your doctor if the tests come back as normal.

One of the difficulties too is that it is not necessarily serotonin causing the flushing (let me know if you want the name of the journal article on this). There are other chemicals the tumours secrete which may be more responsible for this aspect of the disease, while serotonin causes the diarrhoea (Aussie spelling!). So it is possible to flush during the urine collection and still have normal levels.

One of the things that proved helpful in me obtaining my diagnosis was to plot on a calendar when I had my symptoms and how severe they were (e.g. whether a normal, medium or extreme flush and how many in a day;  when having pain; when heart palpitations; when going to the toilet frequently). I did not have symptoms 100% of the time, and my blood serotonin was not elevated all of the time, but my symptom calendar demonstrated an increase in symptoms over time. The other thing that was helpful was for me to take photographs of my flushes with me to the doctor.

There is so much that is helpful to know when it comes to getting diagnosed, so let me know if you want more info. For example, your flushes will look different depending on where the tumour is located, so it is important to know whether your flushes are pink to red and fade relatively fast, or if they are very deep red to purple and last for hours. Also, Dr Pommier says in a lecture that you can watch online that it is common for carcinoids to grow to the outside of the bowel wall rather than the inside, which means they may not be visible on colonoscopy/endoscopy etc. I would recommend watching it. Link is:

http://itr8.com/hosted/ccf/mtsinai09/presentation_links.htm "" target="_blank" rel="nofollow">http://itr8.com/hosted/ccf/mtsinai09/presentation_links.htm " target="_blank" rel="nofollow">http://itr8.com/hosted/ccf/mtsinai09/presentation_links.htm

Let me know how you go with your tests.

Blessings, Lauri.

Hi Laura

I'm Kathy from Sydney/Australia.  63.5 year-old woman (post menopausal).

I have just now joined this blog.  At the moment I'm all sixes and sevens.  My symptoms are flushing (not all the tiem) (pink - worse when I bend forward and touch my face to put cream on etc - the latter disappears immediately I get my hands off my face - I don't flush whilst exercising) and abdominal cramps (sometimes) - but I have fibromyalgia and IBS so I blame every knew symptom on that.  Had the 5-HIAA two months ago and the doctor said it was normal - I can't remember exactly what he said about another reading (something to do with the liver) but he said that reading was because I was slight build.  Then I had the CgA done last week and it was slightly elevated - I think he said it was 42 (and he said the top level was 37).  He then talked to a pathologist who said she wanted to run the 5-HIAA test again.  So today I'm on the eating regime and will start collecting urine tomorrow.  I have no idea why they are doing it again, particularly as you say that the tests don't confirm anything.  I didn't experience heart palps except last night and today when I've had total meltdown so I guess its anxiety.  Can't stop crying.  I usually don't feel sorry for myself - I've been through/going through a lot for past 20 years - also have chronic vertigo and have managed to stay positive and take very good care of myself.  If what I'm writing doesn't make sense, blame it on the fact that I'm really out of it, having had no sleep and worrying like crazy.  I feel as though I've been given a death sentence.  I understand that's crazy but I'm in a really dark place (I've never suffered depression).  The more I read on Google the more upset I get - but I like to stay informed but its so overwhelming.  I feel as though I'm holding my breath all the time (anxiety no doubt).  I walked into the docs the other day fully expecting a normal reading of the CgA - walked out stunned. 

Thanks and kind regards.

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