Carcinoid syndrome Puns

Meaning if you were to get rid of the tumor completely does it continue after that? Or are your symptoms reversed?

Is urinary 5HIAA elevated in both localized intestine carcinoid tumor and metastatic liver carcinoid?

Carcinoid syndrome is present in mets only, but what about 5HIAA levels? Can we differentiate both of them based on 5HIAA levels?

Any idea ?!

Hello!

I am a female in my late 20’s who has been experiencing severe health problems for a few years now. I have recently seen a doctor who based on my clinical presentation was pretty sure that this is Carcinoid Syndrome. This is totally not his specialty but he helped with ordering tests like 5-HIAA (urine and blood), Chromogranin A (urine) etc. I am still waiting on the results.

So far I got:

• Metanephrines (normal) and NorMetanephrines (abnormal testing at around 250pg/ml where normal is anything below 148pg/ml).
• Chromogranin A (blood) - negative.
• negative for ANY autoimmune illness (tested for many autoimmune illnesses including lupus, lyme etc.)
• Full body thermograph showed severe heat in my face and neck. No known infection in the area.
• So far immunologist, rheumatologist, vascular have not found anything (vascular dr says all vascular issues are a response to something else and thinks its carcinoid syndrome).

I will wait for the other tests however, I am hoping that someone will see any resemblance with my symptoms or help me with my search. I would greatly appreciate it.

Facial Flush (cheeks, nose, ears, some neck) - Short in duration, red with slight purple hue, hot and dry.

Hands - very prominent deep dark purple ice cold or bright red flush (burning).

Very excessive occasional sweating in hands and feet.

Shortness of breath

acid reflux (difficulty swallowing certain foods)

Rapid heartbeat when face is flushing (115 at rest)

Mottled purple-ish skin pattern - hands, arms and upper legs

Severe body aches

Swollen right forearm and neck above collar bone (any vascular issues are checked and labeled as secondary)

Skin lesions - small veins under nose, a patch of discoloration above my lip

The tip of my nose has slightly expanded - red and swollen? (rhinophyma perhaps?)

Acne - more severe (building under skin) especially on my jaw.

Weight - in last year I lost 50lbs and then gained 30lbs.

Inability to fall asleep (I am on ambien)

Exhaustion

Spider veins back of the knees

Skin is very soft, pale and translucent like

Diarrhea as of today and can hear my intestines making sounds.

Nausea

Thanks so much!

Hello everyone, I’m 38, with a history of seasonal allergies, eczema, and history of pretty bad hay fever as a child. About two years ago I started having symptoms of instantaneous stomach cramping, followed by bouts a diarrhea. I would have this happen about two times, then it would resolve. I started noticing during these episodes I would get a cough. My throat never felt itchy, I just kind of felt short of breath and scratchiness in my chest, but not enough to cause distress. Recently, I listened to my lungs with a stethoscope and I would hear wheezes, during these episodes. This would happen maybe every few months, and again, It was like after the two bouts of diarrhea it would resolve. It seems like I’m the past three months I’m having these episodes more frequently, about twice a month..now the stomach cramping is more severe and I get nauseated. I thought it was maybe something I was eating, it would first noticed it happened after I would have Thai food, then it would just happen randomly despite what I ate. I have been seeing my doctor about this. She seems to think maybe I have a gluten intolerance. I kept a food journal and she ordered a blood test to check for celiac and some other food allergies... I tested negative for celiac but I showed sensitivity to shrimp, peanut, sesame, and wheat. All showed up as low sensitivity, and when I brought that up to my doctor she said I should avoid those foods and not go my sensitivity showing on my test and instead go by intensity symptoms. I have also read that these allergy blood test can show false positives for sensitivities. I’ve never had issues with food allergies in the past, so I’m wondering if I could suddenly become more sensitive to these foods. Also, I had an episode last night at work. I realized I had something with sesame seed in it. But, again there are times I’ve had sesame seed in something and it doesn’t happen.

When I have researched my symptoms of coughing, wheezing and diarrhea happening at the same time, carcinoid syndrome pops up. I also brought up this possibility up to my doctor, she said she had never heard of it and asked what tests are done to check for it. I had read about a urine test which she order to check for elevated serotonin levels and it came back negative. Although, I know there is more testing that can be done, but it’s hard to convince her to do further workup for this

I live in in a small town and it’s extremely difficult to find a good doctor or speciali

Wouldn't it produce left hearted disease?

Hello,

I’m not entirely sure why I’m posting, but it’s 3am and here I am...

I’m a 30 year old resident doctor who lives in Canada. I have a complicated medical history including multiple autoimmune issues, for which I take Humira, among other drugs. Last October I had to stop working because my increasingly severe GI symptoms were preventing me from taking care of my patients. I went through a slew of tests, scopes, imaging, and while I had many lab abnormalities, nothing was diagnostic; what was originally thought to be IBD or Behcet’s was ruled out. As I was discussing this with my gastroenterologist and feeling rather defeated, I remembered a patient I had treated the year before who had similar symptoms, and thus we started looking into the idea of a neuroendocrine tumor. I ended up having elevated levels of my 24h 5HIAA urine, and all my symptoms fit carcinoid syndrome; unfortunately, they haven’t been able to find the tumor, even though I’ve had CTs, MRIs, and the 68Ga-Dotate PET scan. I was subsequently started on short acting octreotide, which vastly improved my symptoms, but has come with nasty side effects, such as severe hyperglycaemia; we are trying to transition me to long acting octreotide, but the dosing is still somewhat guesswork because NETs are so rare, and we can only change the dose once a month, so it’s been slow.

Meanwhile, despite not being able to eat and having massive amounts of diarrhea for months, I put on 40lbs of weight. We started measuring my cortisol, and discovered that it was swinging from very high to dangerously low, suggesting cyclic Cushing’s, another rare entity.

The idea of having a NET that is causing cyclic Cushing’s AND Carcinoid syndrome? I haven’t even been able to find a case report about it in the literature, and trust me - I’ve looked.

Overall I’m just really frustrated right now. I’ve been off work for 6 months, and while we’ve made some progress, I feel like I’m still so far away from getting back to me. It’s hard knowing that the only way to ‘cure’ this is to remove the tumor, but we can’t find the damn thing. Every test I walked into I would say I silent prayer hoping they would find something - which is the opposite of what people usually do - and every time the scans came back clean I was disappointed. Now the only choice is symptom management until a tumor pops up, and then we have to hope that it’s the primary, and not a liver metastasis. And it can take YEARS before a tumor pops up because t

35F

Meds: Xulane

No known conditions.

For months now I have had abdominal pain, constipation, and facial flushing. Flushing is usually caused by alcohol but can also be from exercise or just sitting on the couch. It is not everyday but more days then not. The last night has awful night sweats like I have never had before!!!

I have had a lot of blood work but none specifically for Carcinoid tumors. I was scheduled for a colon/endoscopy but because of COVID and no elective surgeries my GI ordered me a CT scan with contrast of my abdomen.

I had that done and a few months back I have an ultrasound and nothing showed up at all. I am getting worried as my DR is now saying it is highly unlikely I have carcinoid.

I have read though that a lot of times these tumors can’t be found on CT scans so in my mind I am back to square one.

I was wondering what people’s opinion/experience was with CT scan showing anything abnormal. I understand the scan itself wouldn’t point to carcinoid but I was honestly thinking something would show up.

Can someone please explain to me carcinoid syndrome and what it feels like? And explain how the flushing feels and looks and is triggered? And how it can effect normal blood tests? Like for example inflammatory markers? Sorry for the question, very scared girl here.

In pathoma, it states that in order to have symptoms, metastasis is required to the liver or beyond(to bypass MAO), also it states that the lungs have MAO too, but symptoms are present if the tumor is between liver and lungs, what is the explanation please.

Was just diagnosed with neuroendocrine tumors in my terminal ilium and appendix. Was told once they remove them, my POTS will get worse. Wondering anyones experience with this? Or if anyone has any info about POTS and NETs in general.

Today I am the worst type of lucky. Had a colonoscopy a couple of days ago because of bright blood in my stool. Figured that it was internal hemorrhoids, and it was.

Also turns out that I have an early undifferentiated neuroendocrine tumor in my small intestine. Caught it by chance. Doc said that it would probably have been too late in six months to a year. I'm in a weird headspace of freaking out, and also knowing that this is good news.

I haven't had an opportunity to talk to the referred specialist, and I assume that will probably happen next week. The GI told me that this will require a small intestinal resection. I know that these usually result in full recoveries, but I'm trying to get an idea of a timeline for that. I need to plan ahead. I'd appreciate it if those of you that have had this type of surgery could let me know that was the timeline for recovery and how long did it take to get to 100%. I'm assuming 1-2 months.

Has anyone developed rosacea and later found out the flushing was due to a carcinoid tumor/neuroendocrine tumor (NET)? I have been trying to get to the root of my adult-onset rosacea for the last 2 years, and I have it mostly under control with a low histamine diet. I had an early routine colonoscopy and a carcinoid tumor was incidentally found and biopsied. While I am waiting to see a NET specialist next month, I’ve learned that flushing is one of the primary symptoms in carcinoid syndrome which is when the tumor secretes hormones into the body. To reduce symptoms of carcinoid syndrome, patients are encouraged to avoid vasoactive amine-rich foods (histamine and tyramine).

Here is a new list of top concepts that I have found to be the most tested by the NBME. Feel free to add to this list.

• Congenital heart defects: ASD, VSD, PDA, etc.
• Blood & bone marrow transfusion reactions.
• Organ transplant reactions.
• Hypersensitivity reactions.
• Antineoplastic drugs: Paclitaxel, vincristine, vinblastine, etc.
• HIV therapy.
• Reproductive organs vasculopathy.
• Brain tumors: presentation, side effects.
• COPD.
• Effects of dilation/contraction of efferent/afferent arterioles.
• Renal artery stenosis.
• MOA of cholesterol drugs.
• Line-Weaver Burk plot.
• Genetics pedigree & percent inheritance.
• Thyroid diseases: labs and treatment.
• Illnesses seen in farmers: Skin issues, poisoning, etc.
• Brain lesions anatomy: Huntington, Parkinson, Eye vision issues, etc
• Microbiology (straightforward).
• Ethics & communications: Always ask open ended questions; Acknowledge patient feelings; Never refer.
• Gaussian bell curve.
• Incidence vs Prevalence.
• Case control vs Cohort.
• Brachial plexus.
• Vitamins (deficiency & toxicity).
• Amino acids.
• Gout vs Rheumatoid arthritis.
• Calcium: Hyper vs Hypoparathyroidism.
• Heart murmurs.
• Penile issues: Erection, injury, fertility, cancer, etc.
• Tuberculosis.
• Sarcoidosis.
• Carcinoid syndrome.
• Diabetes: Drugs & endocrinology.
• Vitamin D pathway.
• Pharyngeal arches/pouches derivatives.
• Mechanism of recurrent infections in children: Lysosomal storage disease, SCID, Agammaglobulinemia, etc.
• Familial dyslipidemias.
• Different muscular dystrophies.
• Antibiotics MOA.
• Adrenergic agonists/antagonists

M 25 Weight 215 6ft tall

Hi,

I am writing today specifically about a rash on my underarms and left side, but have added a history below ( I can DM a photo). The rash is red and has raised bumps like bug bites. I am itchy pretty much everywhere, not just at the rash site. My fear is this is caused by lynphoma. I do have anxiety and have a past family history of multiple cancers, so I understand I may be irrational in thinking this. I just want to get as many opinions as possible. I do have a PCP visit on Monday to look at this. I started taking Benadryl yesterday for the rash. I did just get over covid the other day.

Quick history: clear labs minus high liver enzymes (Fall 2021)

clear chest xray(June 2020)

chest CT and abdominal ct with contrast - fatty liver (July 2020),

Clear head ct (July 2020)

Abdominal US - fatty liver ( Fall 2021)

Urine analysis - Negative for carcinoid syndrome and other cancers validated through urine

----------‐--

Conditions: Hydrocephalus, Axiety

Past symptoms: chest pain, left side, panic attacks, high blood pressure ( during episodes)

Current symptoms:

Sharp abdominal pains in the lower right abdomin, and upper right abdomin - mostly at night

Facial flushing for 6 months

Rash post covid 19

If a person or animal model with a serotonin-secreting tumour (neuroendocrine cancer, carcinoid syndrome) takes SSRIs, the brain itself is not at-risk of serotonin syndrome from the tumours due to the blood-brain-barrier, but will the excess serotinin in the blood or gut still harm other systems since the serotonin-producing tumour is outside the brain and they start put with an increased level of the hormone?

Hey mom, 2021 was not a good year for me. I accomplished a lot, though, and I’m trying to stay optimistic about that.

A few months before things got bad, I started waking up in the middle of the night with pounding headaches. Saw an ENT. Had a CT/ CTangiogram of my head and neck, which was normal except for thinning of some bones in my skull. That was last year just after Christmas.

Following years of vague chronic illness, I woke up in the middle of the night on June 18th with a resting heart rate of 170 bpm. I felt like I would die. I waited till morning, crying in the bathroom, hoping it would pass. It didn’t. It stayed at 170 for hours. Eventually I went to the ER where I also had 180/110 BP, low potassium, slightly elevated blood protein. I was treated with IV Ativan which did nothing but make me confused. My blood pressure and pulse stayed up until I finally got beta blockers, recovered, and was discharged.

After that I had a few more episodes THAT WEEK and with each of them I told my fiancé good bye as we drove to the ER. I didn’t think I’d survive. I fought with the ER doctor for beta blockers, but they wouldn’t prescribe. Only Ativan, which helps with the impending doom but not the heart rate/BP.

I made an emergency appointment with my GP who was worried about pheochromocytoma. On my 31st birthday, I did a 24 h urine collection for metanephrines and carcinoid syndrome (Neuroendocrine cancer), and tons of blood work. The bloodwork was normal, even total protein and potassium. Metanephrines were normal. Carcinoid testing never resulted and I had to do it again. Then it was negative. Cortisol was elevated.

I wasn’t allowed to take time off work. I was going to work everyday afraid of an episode or a cancer diagnosis.

The doctor refused further cancer testing and I had to order it myself through walk in labs. I had to review it myself. All negative/normal. Cortisol high again. A lot of crying.

They wanted me to get a CT with contrast of my abdomen and pelvis, and an upper and lower endoscopy. I did them within 24 h of each other, chugging water after the CT then switching to the PEG solution. The day after these procedures, I had an interview with a presentation for an engineering position. I got the job. Endoscopy and CT were normal except for kidney stones. I only took 2.5 days off my other job to do it.

At my new job I fight through episodes that would have sent me to the ER. I take propranolol and chug water. It’s hell. But I n

UPDATE POST SHOW: Never found anyone sadly. However I gave the ticket away to a nice young fan, and I ended up meeting with and hanging out with a sweet young lady who was also in the ADA section and we had a blast hanging out and being "crutches" for each other and I made sure she got home safe. We may even try and meet up next year for her DC show stop.

Thanks for all the well wishes and support. It may not have worked out as intended but I still had a blast and it is hard to believe I got to see her live and meet her in person. Still got a big ol' grin on my face.

Original:

I will be traveling to NY to see Aurora and have an extra ticket. However, there is a bit of a catch. I would love to find a date or companion to attend it with me and potentially stay in one of the 2 disability sections at Terminal 5 during the show with me just to provide an extra layer of safety in a way.

Backstory:

I am a male in my mid 30's. An introverted and low-key artist type. Aurora was a musician I listened to whenever I was painting (a hobby of mine) back when she first broke onto the scene in 2014 or so. I've even posted a few pieces inspired by her on this subreddit in the distant past.

A few years ago I was diagnosed with Stage IV Nets cancer (Incurable/terminal). Auroras music in the last few years has helped me get through some very rough patches, particularly when I felt lonely, stuck, or ostracized. One of my bucket list items was/is to see her live (maybe meet her one day). Between covid and surgeries plans were delayed but I am finally well enough and fully vaccinated and so will be traveling from the DC area to NY to see her.

However, I have a slight complication in that I have something called Carcinoid syndrome which classifies me as disabled. Excessive physical/mental stress can cause a chemical reaction as the tumors release hormones. It can cause me to have a reaction (looks similar to an allergic reaction) that could cause me to pass out and have other side effects/issues and so I have to be careful not to overexert myself and take seated breaks and things at times.

The situation:

Sadly I do not have anyone able to go to the show with me. I am not incapable of travel or attendance, but it would be nice to have someone there just as a safety measure. Someone who could be there for me "just in case" and provide a bit of a safety net in an unfamiliar place. It is not required but would be nice. I complete

First off, I want to thank those of you who are going to read this in its entirety. I tend to keep things precise as possible, but I have so many weird symptoms that all started together, and I’ve been suffering with them for a while. So here it goes. I’m not asking for a diagnosis by the way, I’m just wondering if it sounds like an allergy.

So, back in January of this year, I would occasionally have diarrhea. It wasn’t that often though, maybe like once a week or even less. This occurred from January into May, and it ended up becoming more frequent as time went on. Initially, I never thought anything of it since it wasn’t all the time, and my other bowel movements were normal (95% of them). I also didn’t want to tell anyone because of the embarrassing nature of this topic, so I never saw a doctor then. Key word there is then.

Cut to March, April and May, the diarrhea started to increase to about 30% or more of all of my bowel movements. It wasn’t always diarrhea, but more so just softer and less-shaped like a normal bowel movement. A lot of the time it was green. Around this time, I also started to have panic attacks. They would come on suddenly, and I wouldn’t really know why, especially since I didn’t have anything to worry about. I remember thinking “ok idk what the fuck is going on with me, but I really need to start meditating or some shit like that.” I was not on any medications at this point. I was also going to the gym and doing different workouts, specifically weighted compound lifts. I remember one day in April when I finished a set of sit-ups, and I was so frickin tired afterwards that I just laid on the gym floor mat for a while after my set. I remember thinking “why am I so tired?” During this time in April, I also remember my appetite incrementally decreasing as they days progressed. I am usually extremely hungry in the mornings, so it was weird to me that I wasn’t feeling up for eating in the mornings. It was like each morning I was less hungry than the previous day, until one day I just didn’t feel like eating at all. Also, a symptom that developed during that time was what I can only explain as “sloshing stomach”. It basically would happen (and still happens) after I eat food. It feels like my stomach contents are not being emptied into my small bowel, and so I feel, and can’t literally hear them sloshing around in my stomach. If I shake my abdomen while lying down, I can hear a water moving sound. It not super uncomfortable, but

Hi everyone, I had a carcinoid tumor in my colon and i found out recebtly. I am really afraid and confused and i havent even told my parents yet.

Basically I have carcinoid syndrme symptoms but it has not spread to the liver. I cannot find any info on someone else who has had this. Most people get flushing etc from carcinoid sundrome. I dont flush or feel hot or get noticably red. What i need advice on is the weight gain and joint atrophy.

For YEARSSS like 15 years i have have this weird soft fat band around my waist. Its like im fully skinny everywhere but my waist has all my fat concintrated there. All this timr I thoight this was just fat from normal life. Because of high cortisol in my blood all those years my fat distribution is all off.

I also had hip bursitis on both hips and arthritic type swelling and pain in my hips. The dr said this was from all the hormones in my blood and will sop getting worse once the tumor is removed.

i cant find anyone online with a Nets of the colon that has these cancinoid symptoms of excess adipose tissue and joint swelling. Can someone with nets help me. I cannot believe ive had cancer for 28 years and went throigh all those symptoms thinkng its how everyone else feels normally.

more people need to know about this. Carcinoids are a very slow growing cancers that release hormones into your blood. These hormones cause random symptoms like diharea flushing, rashes, joint pain, weight loss or gain etc tec. It can be anything and no doctor will pick it up unless you find it by random. You can have this just sit in your belly and not grow and cause all this suffering all ur life. im so sad :(

Thank GOD i found this sub.

Hi everyone, concerned 19F here. I’ve been having lots of weird symptoms for the past few years. Dr Google has not been helpful to my worries (specifically towards carcinoid syndrome), but I’ve “reassured” myself of that due to my age. Here’s a rundown of what i’ve been experiencing…

-constant runny nose. it’s clear and stringy. It happens practically all year. Claritin helps with it. I can literally blow blobs of it out of my nose and my mom sometimes gets annoyed with all the sniffling. All of the snot leads to postnasal drip

-body temperature gets pretty warm at night, almost feverish. My face also flushes sometimes (hence the carcinoid worry…). Note that my hands and feet get VERY warm when trying to sleep and it’s so uncomfortable. I love finding cold spots in my bed.

-bad reflux, causing some wheezing in my breath. My whole immediate family has GERD.

-bouts of abdominal aches, body aches, and diarrhea (this might be anxiety-related diarrhea). I noticed the diarrhea tends to occur after i eat dairy as well.

-bad brain fog where i zone out and forget what someone said or what i said, have trouble concentrating etc.

-I also have a bad form of eczema called nummular eczema. I got diagnosed with it around the same time i got the runny nose and post nasal drip. Idk if eczema is a symptom but yeah. The eczema itches like crazy :/ it’s all over my arms and legs and feet. It gets worse after showering and sweating.

-also get petechiael rashes on my legs after taking tylenol. Blood tests have ruled out serious conditions like leukemia and shit.

-i can easily get headaches from not sleeping too much or oversleeping. These headaches can turn into migraines.

-vomiting.. pretty new, but it’s happened 6 times this year, most of them coming from taking antibiotics with lexapro. Don’t know what’s up with that.

-deep breathing seems a bit tricky for me. I play trombone and breath support is almost essential to play long phrases but i can’t seem to take in enough air to play as long as my fellow classmates.

-very easy bruising, sometimes i find a random bruise and it doesn’t go away for a while. Or it comes back.

-slight joint aches especially in my wrists

-dizziness when i lay in bed

Any thoughts? What other symptoms are common in mcas?

Nearly 5 years ago, I began experiencing intermittent, burning redness in my ears, cheeks, and nose. For about 18-24 months, I experienced episodic flares that would come on every evening for anywhere from 5-30ish consecutive days and then no symptoms for 1-3 weeks. Symptoms included bright red skin that was hot to the touch (sunburn-like), with a feeling that my skin radiated heat, and a horrible burning sensation. It came on almost exclusively in the evenings when I’d come home from work and lie down on the couch. Occasionally it came on very late at night if I was working late at the office, and at it’s worst, I’d occasionally experience it during the day in response to extreme emotional reactions (anger, embarrassment) but this period only lasted a couple of weeks. Aside from those daytime episodes, I couldn’t identify any flares except lying down in the evenings and the pain/redness would continue through bedtime but would always be gone in the morning. The redness and burning and heat were always bilateral and usually started in my nose and cheeks (I could feel it coming on) but involved a range of other body parts, seemingly at random and usually about 3-4 at a time: hands (palms especially, also fingers), ears, knees, chest (splotchier, other body parts were solid red), neck, biceps, and thighs. My knees and thighs were the worst in terms of pain and burning and often made it difficult to get to sleep. Notably, I don’t recall any symptoms on the soles of my feet but I think my toes were involved a few times.

I was previously diagnosed with mild to moderate Raynaud’s about 8 years ago but go extended periods of time with no symptoms.

The redness and burning were severe enough that I sought medical attention. Because they symptoms only occurred at night, I took a lot of photos. As soon as I showed doctors the photos they were alarmed, and I went through a lot of specialists and testing. Rheumatology, dermatology, immunology, and endocrinology. We ruled out common autoimmune conditions, dermatological conditions, MCAS and mastocytosis, folate deficiency, allergies, and thyroid issues. I was finally referred to an endocrinologist to test for carcinoid syndrome.

I had to wait about 6 months for a referral, and during that time my symptoms resolved spontaneously. Still, I went through testing and ruled our carcinoid. I was also tested for a rare endocrine tumor called pheochromocytoma, which had also been suspected and ruled out after testing 7 years

hello, my daughter has thyroid tumors, after the ultra sound the nurse practitoner told us they are likely cancer, possible medullary thyroid cancer two relatives have it (mtc) one of the aggressive because it cause carcinoid syndrome, i wrote down over the phone all the following:

CBC/CMP

5 hiaa

fine needle inspiration biopsy

serotonin serum

gallium

chromogranite A

pancrease statin

gastrin

typtase

lipase

C reactive protein

IGE

now i find myself confused about which one is which, which ones are blood test (she goes tomorrow at 6:20a.m. to labcor for the blood test so i will find out I guess) which ones were xrays but i want to know how you keep track of info, do you write it all down? do you record it audio? any suggestions will probably be helpful

this was only a 8 minute call and after ward i was confused so i need a better system thank you very much

Even though they are both high levels of serotonin, there is barely any overlap in the symptoms.