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