Firstly let me apologise for the length of this post, but I really would appreciate any insight that people might have as I am really struggling at the moment. If you can take the time to read and respond, please do.
New member here, I've introduced myself over in the introducing thread, and I have to say I think this place is great. I love that we can all come here to share thoughts and worries, and try to help each other out
Basically, as the thread title suggests, I'm worried about Carcinoid Syndrome. In fact, I'm utterly convinced I have it. I know it's very very rare but I still think I've become one of the unlucky ones.
To explain what's been happening to me - Four years ago was the first time I had a symptom relating to my current concerns. I like to have a drink, beer, wine, cocktails, I love them all! I am Scottish
But I really don't drink to excess as I can't really. I just like a sociable drink with friends. In late October 2009 I was driving about an hour or so to see some family. The night before I'd had a few glasses of wine. This was late morning, early afternoon so the alcohol was out of my system. I didn't feel hungover and I felt tired but nothing else. I had a cola and a snack on the road. After a while I noticed my hands had started to tingle and itch and then it travelled up my arms. My stomach started aching and I felt hot and clammy. I knew I needed to be sick and that I was going to have diarrhoea. I made it to the family home and felt awful, the desperation to be sick and/or empty my bowels resulted in me feeling dizzy and confused and like all the blood had rushed to my stomach. I went to the bathroom and was violently sick, followed by diarrhoea. Almost instantly this feeling subsided and I felt relieved and better but tired. It never happened before or after and so I put it down to a bit of an intolerance.
I have a history of extreme anxiety about almost EVERYTHING and have been diagnosed with IBS as of late 2011.
Skip forward to 2012, and I'd had plenty of drinks over the years and it had never happened again. November 2012, again the day after I'd had a fair bit of wine, I was doing a long drive, had a snack, and then the feeling returned! Almost exactly the same, I stopped the car to be sick and felt better but not totally, and then at my destination I was sick and had diarrhoea and felt a lot better quite quickly. I assumed the intolerance had randomly struck again and that was that. I was also very nervous that day as I was on my way to propose to my fiancée! (She said yes and I'm the happiest man in the world!). I had another long drive after that, later in the day, and the tingling hands came back again. It cleared after a while.
January 2013 I was in the USA for work and one night after a couple of beers my hands got itchy, my heart raced a bit and my tummy ached. I felt suddenly hot and my face and palms went red. This subsided after two or three minutes and I assumed that it was just the intolerance or slight allergy playing up. I'd had a stomach virus along with work colleagues a week before that so thought maybe I was just a bit fragile from that! This same reaction happened a few more times over the next month, I'd have alcohol and my face and neck and palms would flush and I'd get a racing heart and stomach cramps. Sometimes followed by a loose bowel movement. It would always disappear quite quickly. It culminated about two months later when, after a glass of wine, the reaction happened again and it was pretty bad. All the same symptoms, but worse and this time my head was pounding and the stomach cramps were awful. It went away after I'd been to the toilet and the headache and stomach cramps faded a half hour or so later.
This did not happen every time I drank alcohol, only very occasionally. The other times I felt fine.
I went to the doctor and they weren't concerned and said they'd seen plenty of unusual reactions such as this to alcohol. I said I'd googled my symptoms and found Carcinoid Syndrome and was very worried. The doctor reassured me, explained that it was incredibly rare and that the twice he'd encountered it in his entire career the symptoms had been quite different and more extreme than mine. But he said for my peace of mind he would run the 24 hour urine test that is used to screen for the disease. The results of this test were normal and that doctor, and another doctor (who also had encountered Carcinoid before in her career) said that I really should stop worrying and forget about Carcinoid Syndrome.
A few months passed and I gradually learned to forget about it. I drank quite a few times in that period and never had a single problem, and so I felt better. Then, this month, on my birthday, I had a few pints and about an hour or two after my last drink I had a bit of chocolate cake and the reaction hit me again. This time it was awful, flushed hands and neck and face, palpitations, clammy sweat, stomach cramps, headaches and nausea. I went to the toilet and made myself sick, this helped some of the pain, and then some loose stools further helped. I lay down for about 30 mins and the other symptoms cleared eventually. I went back to the Doctor and they said not to worry too much, that I have IBS and alcohol or food intolerance and steering clear of alcohol should help.
Two weeks later I met some friends for a few drinks and felt fine. The following morning I was fragile but fine and had breakfast and then about 30 mins after the food (and roughly 12 hours after my last drink) I got an attack again. It was the most extreme, I was walking down the street, stomach in agony, legs going to jelly, headache and palpitations, and profuse sweating. I knew I was going to have terrible diarrhoea and had no idea how I was going to make it to a toilet without soiling myself or collapsing. I made it to the toilet, had explosive diarrhoea, and felt my hands start to itch and my face go hot and red. The bowel movement helped and I made myself sick but I sat there for a good twenty mins with a sore head and feeling tired and very fragile and dripping with sweat. I haven't touched a drop of alcohol since and it hasn't happened again.
Now, I have spent the last 3 months constantly reading about Carcinoid Syndrome and how it's often misdiagnosed as IBS and how alcohol can bring on the carcinoid crisis. In my mind, I am absolutely convinced I have this syndrome and that what has been happening to me is the carcinoid crisis. I went back to my doctor and convinced her to refer me on to a specialist, but she is sure that carcinoid is not to blame.
My worry has got so bad that I believe I'm going to be too late to treat it and that I'm on borrowed time. I have an amazing job that's taking me to USA again next month but I'm wondering whether to pull out as, if I'm on borrowed time, I don't want to be taking valuable weeks away from seeing my fiancée and my family.
From all my reading online I can't see a single other illness or reason that would explain these attacks. Some of the websites say that having these symptoms alone is enough to diagnose carcinoid syndrome even if your urine test is normal. But surely it can't be as simple as that? If it is, then I must have it and that means surely that I only have a limited time left. My doctor can't get me to a specialist until I'm back from my job at the start of December, but I wondered if I should quit the job and go private to see if they can help me quicker and buy me more time if I am in trouble.
For years I've had a vague ache and occasional pain in the area of my liver but never thought much about it, but now I worry that this is due to the carcinoid metastasising there. I also have a pain in my bowel area when I am hunched or bent over, if I strain or push or tense I often get this feeling of pressure in one spot, could that be a tumour pressing into my nerves?
I have had countless other tests for many things - blood tests, stool samples, an ECG on my heart and everything has been fine. Even the urine test for carcinoid was fine. But carcinoids hide don't they?
Does anybody know if there is possibly another explanation for these attacks other than Carcinoid Syndrome?
A few points about the attacks -
- They only ever happen after alcohol. They don't happen every time I drink, but the only times they've ever happened has been when I've had a drink. Hope that doesn't sound confusing.
- most times I drink alcohol I'm absolutely fine.
- Sometimes it happens straight away after one drink, sometimes an hour or so later, sometimes the next day. The longer the time since the drink was consumed, the worse the attack.
- aside from these attacks I don't flush and only have diarrhoea very occasionally when I'm very stressed or have eaten something that makes my bowels play up, or had a few drinks. Otherwise I just have vague discomfort in my abdomen that I had always put down to IBS.
- I don't tend to flush the rest of the time, as far as I know.
- I often feel my heart thumping but my BPM and blood pressure appear normal and I'm quite active with no problems.
- recently I've been having sore muscles and a few other symptoms that I thought were from being stressed.
- I have a loooooong history of health anxiety and been convinced that I've had many diseases over the years.
This time I really feel like this is definitely carcinoid as I seem to tick all the boxes that it mentions online. The doctor is doing all they can by referring me on, even though both doctors have told me to stop worrying about carcinoid. But doctors apparently often miss this disease and I feel like I'm going to be too late for treatment. I'm scared and wondering whether or not I have to quit my job and stay here in case I run out of time. Do you think there could be any way that this might NOT be carcinoid syndrome? Could these symptoms possibly be something else?
Thank you for taking the time to read this, I'm sorry it was so long and detailed but I honestly feel like I can't cope. I feel like I'm losing my mind.
Any help or thoughts are hugely appreciated.