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Symptoms & high levels of 5HIAA in 24 hr urine

Author Sibcats
Forums Member
#1 | Posted: 27 Mar 2011 11:38
Hi all,

my name is Caroline, I'm in my 50's. I have not been diagnosed with Carcinoids, (in fact it's not even been mentioned as a possibility) but I have a couple of questions if it's not too much trouble.

I've been ill for several years with symptoms of under active thyroid. After 2 years of 'within range' Thyroid function tests, I was diagnosed with Thyroiditis then within months, diagnosed with Thyroid Cancer. After surgery & treatment, my health continued deteriorating. Fatigue, pain/aches all over my body, increasing heat intolerance (I'm post men) & was diagnosed with 'Fybromyalgia'!

I have to keep my house cold, (10c or less suits me perfectly). I can't stand to be near any heat because the feeling I get is so unpleasant. I feel as if I'm cooking inside & my head feels it will explode, I can't stand it. Menapause was a breeze compared to the sweats/flushing I get now. I have passed out several times over the last 18 months (I've been told I just fall like a plank) if I've become too hot & cant cool down quick enough. My blood pressure does not drop as with fainting, it rises & my pulse increases, my breathing becomes laboured, (difficulty breathing out) & my face/body goes bright red, (my face is always red these days & I have an annoying rash around my jaw line & neck). I get uncomfotable overall chest pain which is there more times than not. Over the last 18 months or so, I've experienced excrutiating middle chest pain (I'm unable to stop myself screaming & am unable to move) which can come on any time & lasts about 10 mins. When this happens, I can hardly breath, the pain radiates to my collar bones, neck & head & I feel very nauseous. Afterwards, I'm exhausted & sleepy, (ECG's always ok). Any exertion, (even mild), causes me distress as I become too hot & I have difficulty breathing, just like asthma - but it's not, (GP's say chest is clear).

Over the last year, my bowel habits have changed quite drastically too. I was generally leaning towards constipation, (probably meds). I now constantly pass alot of mucous. Annoyingly, whenever I go to 'spend a penny' I find I have to 'open my bowels' too. I can be stuck on the loo for half an hour or more. My bowel movements, (sorry, trying to be discrete) are mostly sticky &/or loose, (not watery). I often get the awful abdominal pain that comes with a tummy bug. Through screening in my area, I did have a Colonoscopy, (I had blood in my stools) which was clear.

I was eventually referred to a neurologist who sent me for a head MRI scan, ordered a shed load of blood plasma tests for metabolic disorders & 24 hour uring tests overr 3 days. A couple of weeks ago, my GP phoned to say my catecholomines were elevated & the Neurologist wanted me to repeat the tests without my medication. So I had to stop taking all medication for 48 hours prior to test & during the test, (2 days collection). I then received a letter from the neurologist to say my 5HIAA levels were elevated in all 3 collections & particularly in more so in one. My GP had given me a list of food I should avoid too. As I'd been given no instructions with regards to the tests first time round, I'd googled '24 hour urine tests' & made sure I wasn't consuming the various foods mentioned. I wasn't sure about the drugs so I only stopped taking Concerta which I take for AADD, (Adult Attention Deficit Disorder). The other meds I take are Levothyroxine (thyroid meds) & Gabapentin, (pain meds).

Long winded I know, but my questions are;
In the experience of members, is it likely my meds caused the elevated levels of 5HIAA? I'm still waiting for the results, (haven't had MRI results yet either).
Why does it take so long to get the results, the last tests took 3 weeks. It's been 2 weeks since repeat tests.
I wouldn't ask but I'm so used to being fobbed off I no longer trust the medical proffession for straight answers.
Many thanks, Caroline
Author katherinelennard
Forums Member
#2 | Posted: 27 Mar 2011 16:00
In my experience meeds did not effect urine test but it does take several weeks to get results.... So sorry you are having such a dreadful time.
Author Annie
Forums Member
#3 | Posted: 27 Mar 2011 16:38
Hi Caroline,

"I'm so used to being fobbed off I no longer trust the medical proffession for straight answers." Good for you! Read this poll and you will be certain that your attitude is completely justified.

Sorry, don't know if your meds would raise 5-HIAA. Doubt if your GP would know either. Have you had your Chromogranin A level read? Usually they take 5-HIAA, CgA and platelet serotonin. It takes weeks to get the CgA result back. The colonoscopy is fairly useless as the most common site for NET is the ileum, beyond the scope range of a regular colonoscopy. If all bloods are raised they may send you for an Octreoscan or a Gallium 68 PET. Such a frustrating time for you. Good luck.

Katherine, The waiting is such a fearful time. Good luck on Wednesday.
Author Sibcats
Forums Member
#4 | Posted: 29 Mar 2011 10:20
Hi Katherine & Annie,

thank you for responding to my post. I'm still waiting to hear about the results of the repeat 24hr urine tests. And you're right, waiting is awful!

Yes, one of the blood tests was CgA. I only know because I'd asked for copies of the blood tests. I hadn't any idea what this test was for. In anycase, it was one of two tests that hadn't returned. I believe it said the test had been sent to Sheffield. So I'm non the wiser about that one. Of my WBC tests, all the red blood tsts were at the top of the reference ranges & all the white bloods were at the bottom or just under the reference ranges. After some tests, the lab comments said, 'myloma cannot be excluded without early morning urine'! As I've heard no more about that, I assume this was excluded using the 24hr urine tests.

Author Sibcats
Forums Member
#5 | Posted: 1 Apr 2011 17:26
Hi all, following my first post, I have a couple more questions. The results of my repeat 24 hour Urine tests are back. The 5HIAA levels were still raised, (though not as high as the first tests with meds) but the lab queeried the validity of the tests because they calculated the results over 27 hours of urine collection so I've been told I'll have to repeat them again!! All my fault because I had forgotten to enter the time I emptied my bladder, only putting the time of the start of collection. I'm so annoyed with myself as I realised I'd done this after the samples had gone to the hospital but I didn't think it would matter. The actual time range of collection was nearer 22 hours than 24 hours.

I don't understand why the lab can't re-calculate, taking the correct time range into consideration. In any case, I would have thought that still having slightly raised levels of 5HIAA without my meds would be enough information to warrent what ever comes next? I had such a terrible time being off my pain killers for 4 days last time & I'm really dreading having to do this all over again. Is there anyone who can explain what difference 4 or 5 hours makes & why it's so important? And assuming the next results are still raised, what usually follows?

Author Aireny
Forums Member
#6 | Posted: 6 Jun 2015 00:46
I am a 44 years old female, last month I was diagnosed with carcinoid syndrome due to elevated result of a 24 hours of urine collection for 5-HIAA test. 5-HIAA was 14.4 the normal range (2-6). this is in addition to the fact that I was hospitalized for almost a month due to the frequent and severity of each carcinoid crisis. symptoms are burning flush in the face and neck, swilling in the neck with tightness in the tracheal tube causing oxygen saturation to fall down, fever 38c that come and go for no reason, numbness in the face, high heart rate reaches 170 per minute, high blood pressure reaches 180/120, severe reaction to epinephrine, heaviness on the chest, headache, Diarrhea, abdominal pain and cramps in all my muscles. these symptoms might come as one package in severe crisis that was treated by ICU doctors at that time with short-acting dexamethasone and antihistamine IV injections and in other less severe crisis, most of the symptoms not all. I have made the following tests and images
chromogranin A (normal), adrenaline and noradrenaline (normal), CRP elevated 39.2, white blood cells elevated 16400, glucose in blood went down, basic minerals such as sodium, potassium, calcium, phosphor were below the minimum range
An echography for the heart (normal)
A CT for the abdomen and liver (normal)
an echography for the abdomen ( showed adrenal gland only enlarged with no masses and enlarged spleen)
A PET scan for the full body ( showed only my breast fibro-edinoma and my uterus myoma)
An echography for the utreus also confirmed no carcinoid tumor in uterus
finally an octreoscan resulted as follows:
first day finding some dots on the liver, stomach and uterus
second day: dots disappeared but the uterus were slightly remained
An MRI for the uterus again confirmed no carcinoid

after all this nothing localized the tumor, doctor said might be less than 1cm or it consists of cells that run in the blood stream and not a mass.

now i need to know do i have a carcinoid tumor or not, and if i do what can be done more than what was already done

note: i was tested for short acting sandostatin for a 24 hours bump for a dose of 500 and didn't respond till i reached the max. dose of 1500 per day for 5 days i got better, then doctor reduce it to 1000 then stopped it. now all my symptoms are back the same.

can you help me my crisis is life threatening ...
Author bigpatsy
Forums Member
#7 | Posted: 6 Jun 2015 11:17

Oh my goodness you are really going through it. I am sorry I cannot help you but I am sure there might be someone who can give advice. where are you from?

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