Worried about carcinoid syndrome
Hi guys, I'm very sorry for those ofyou dealing with NETs.
Well, I've been in the habit of drinking a few drinks or so nightly since breaking my back last july.
Stepdad died at xmass, leaving mom alone after 35 years, she's 75 ,I'm 50, were devastated, then one of my best friends died, then my therapist of 15 years, then my uncle, moms brother, then I find out my sweet doggy has congestive heart stuff.
So, surly high cortisol from the stress, and drinking.
About two months ago, the back of my head would itch, then I got food poisoning, day after that my entire head itched like crazy, reddish, urgent care two days in a row both docs said has to be an allergen, said it look like hives on my head, buzzed head lol.
Well, my neck and face were flush too, fully though, not patchy.
Steroid shots helped the itch for a day, not the flushing, flushing stays non stop, lower neck to top of head, full flush, benadryl two pills finally helped the flush and itching.
Bloodwork for liver and kidneys seem fine, allergist did blood too, havnt done skin test yet but I'm doin the same stuff as always, I don't see it being an allergen.
So, sometimes my heart rate picks up, I get pin prick itches around my body, but deep breathing chills the heart rate, claritin hells the itching.
I wanna say in the 2 months, the reddish face neck and head have only barely gone back to normal color kind of maybe 10 times.
My eyes look glassy, my shoulders sometimes get tons of tiny bumps and sting, itch when it gets worse. All gets worse at night. Most of the time. Feels warm at night
No stomach pain, no breathing issues, blood pressure fine, high if anything from being out of shape since my injury.
No diarrhea unless I suddenly eat a bunch of beets or something.
They are testing for thyroid and cortisol now.
I'm curious, I'm assuming mine does not sound like carcinoid syndrome, because my flushing is non stop for months, it's consistent, and major itching especialy my head, and the flushing is full, sound like something else?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
@jsudjian
I don't see any mention of you having NETs so it doesn't seem like it would be carcinoid syndrome. I have lung NETs and have been having flushing and itching issues the past few years. I've been on octreotide injections for 4.5 years so we thought it might be the NETs or the octreotide, but carcinoid syndrome is less common with lung NETs than GI NETs. As I've changed to a whole foods diet, I've recently determined I have a histamine intolerance to many foods especially some fruits (plums and cherries are the worst so far for flushing). I also suspect wheat. Strawberries, nuts and other foods give me hives. I would suggest trying an elimination diet to see if it's food causing your issues. I have a friend who gets hives from antibiotics so it could be something other than food too. It can be hard to narrow down. Good luck!
I've not had scans so I don't know.
Is your flushing and itching constant?
Are you saying that your tumors have not opened up causing the flushing, it's a seperate issue?