Differentiating Carcinoid syndrome from MCAS?
Hi UK based where mcas is poorly understood
I have been diagnoses with autoimmune gastritis in the last few weeks
Symptoms over the last few years have been scary varied and no one joined them up to see they were connected
Dry eyes , puffy eyelids , poor night vision, pain on bright lights. Better now on viscotears and oil based eye drops
Then arthritic pain in knees ankles
Neuralgia pain like pins and needles stinging burning stabbing in arms hand legs feet then in face back etc
Rapid heart beat particularly at night whooshing noise in ears
Rapid heart rate randomly I'm day ie 134 at rest but inconsistent
Flushing salmon pink or red blotchy face neck and upper arms to elbows both sides
Dry flush with heat 1 min or less
Worse after food exercise stress and randomly too
Flush 15x or more times a day
Allergy type symptoms as above not just after food
Hives in throat , red tongue tingling in lips
24hr urine test showed 4 x adrenaline
24 hrs heart monitor showed extra heart beats but not tachycardia enough for a pattern
Referred to rheumatology who diagnose with zero negative inflammatory arthritis
Changes in finger synovitis
Placed on sulphalazine 2 x 2 per day July 2022
Heart palpatations continued but started to ease on the anti inflammatory
Ultra sound scan 2023 showed fatty liver disease and high bad LDh cholestrol
This hasn't altered despite no sugar no alcohol no fats eating v cleanly ie low carbs and lots of vegetables and proteins low in fat
Always had low BP then suddenly bp spikes and drops . All over the place
Crisis episodes after naproxen for 4 days March 2022
It inhibits doa enzyme and I felt literally poisoned. Heart rate up nauseous, fast breathing, clammy bp 177/100. TOLD NOT to take again
Given betablockers May 2022 for heart palpatations. Blocks adrenaline and had almost an anaphylactic shock ie throat swelling lips and breathlessness . Had to phone emergency line and told to take and anti histamine which resolved it .
Took ant acids
Took prednisilone April to June 2022 before rheumatologist gave advice June 2022. Made symptoms worse ie allergic and heart Offered 15mg but felt so ill reduced to 5 mg per day
Slightly elevated Alt enzymes in liver bloods
Sodium in blood kidney results are at top end of normal
Ultra sound scan thyroid nodules . Tsh goes down and then normalises then goes down
Gp seeing all symptoms separately and isn't aware of all being connected which has always been my feeling
ESR levels move form 17 to 22
Borderline rheumatoid factor ie 14
January started more allergies to foods ..got worse and worse . Worked out it was histamine. Went onto zero histamine regime and it improved somewhat but not completely ..Still have flushing as day goes on but has lessened. But breathlessness all day long and intermittent Dry cough. Anti histamine loratadine H1 helps with allergic type responses. Can't tolerate a trying with histamine now at all. Lost a lot of weight . Weight now stabilised. I has zero appetite until I went onto zero histamine diet.
Had scary incident october 2022
Bp went up expedentially to 206/107 ended up in an urgent care centre
Returned and put on a calcium blocker BP tablet.
Frightened of my body and what it was doing
Presently zero histamine foods
Awaiting endocrinology appointment
Flushing but reduced
Breathlessness all the time
Nerve pain 24 hrs a day
In the past few years started to find I was having reactions to dried cranberries, black caffinated tea . Past allergies lemons limes feathers dust.
Always had very bad period pains
Life is tough . Stopped working at the moment
Been to Gp and I siad I think it may be carcinoid syndrome associated with a possible foregut net tumour producing histamine ….
Or could it be mast.cell activation syndrome?
Had muscle and bone pain for 12 yrs
Had vitamin D issues ie lowest 2011 was 9
Now on vitamin D and calcium daily Now 65
Bone density scan February 2023 oestepenia
Awaiting echocariogram and referred to cardiology consultant all at my request
Neurophils lower than normal ie 1.4 ? Sulphalazine or ? Overall white blood cell count 3.6 so lower than normal
Red blood count normal
Question I have is
How do yoy determine if carcinoid syndrome.vs mast cell activation
I've finally got a referral to a specialist Oncologist endocrinologist to assess for carcinoid syndrome
Who deals with mcast ? In the UK seems v hard to get any help.or a diagnosis
What tests would I need for mcast ?
Advice much appreciated
Been like this for 2.5 years and got much worse recently
Worst part is not been believed and feeling hopeless and helpless and scared especially heart, bp, nerve pains
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
The only effect I have with carcinoid syndrome is flushing heat , my face and ears only, before the Lanreotide injections I was flushing appropriately 20 times per day. After injections 7-14 times and the intensity has diminished. I do experience flushing while eating and when I’m still at night.. (Thinking too much). But as long as I’m active and even with exercise I don’t have the flushing.. I believe there is a urine test for carcinoid syndrome ask your doctor , I didn’t have one. The flushing was diagnosed as Carcinoid after my liver biopsy determined I had NET’s.. Also not familiar with mcas.
Thank you Vinnie
Mine is unusual as its not seratonin which comes up in 24 hr cataclodminde urine tests but histamine doesn't get tested in that test. Needs to a specific histamine only test and am not sure how accurate they are. I'm at the beginning of trying to get help for this
I've not been scanned yet so will see if it's indeed a net or nets
I found out 3 years ago that I have net cancer. Originated in small intestines and went to the liver. About 30 tumors. For the first year I only had been taking sandostatin lar for diarrhea and flushing. Didn't help at all. My diarrhea is keeping me from going anywhere. This supposedly is a slow growing cancer but I have had to go through 3 embolizations where they go in and cut the blood flow to the tumors. Last scan showed new tumors so they put me on ever points 10 mg. Two months and side effects kicked in and they decided to lower dosage 5 mg. Well, it's been two months and of course same side effects. Is there anyone out there with similar situation?
Any update, @debbieguk? Do you have a diagnosis?
Hello @abby84 and welcome to the NETs discussion on Mayo Connect. It sounds as if you have had a lot of treatments and that you are still having difficult symptoms.
Have you had a consultation with a NET specialist? A NET specialist is an oncologist who specializes in diagnosing and treating NETs. They are especially helpful in knowing the latest and best treatments available.
Mayo Clinic's three facilities all have NET specialists. If you feel a consultation (either virtual or in-person) might be helpful here is information about appointments at Mayo, http://mayocl.in/1mtmR63.
If you are not able to get a consultation at Mayo, here is a list of NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
I hope you are able to find some relief from your symptoms. Will you let me know how you are doing?
No not yet
Referred to endocrinology
But not getting v far
I had 4x amount of adrenaline in my 24 hr catchlomides urine test . I said this is as a result of hist acne levels being really high and the adrenaline triggers to calm it down but she said I know nothing about histamine and that is the role of a hematologist so very disappointing
She is the gateway for me to get help
I've asked gp for a full organ ct scan as endocrinologist didn't request so having that 21st May
I may have mastocytosis as aymtoms are v similar to carcinoid net with histamine release
I will need an endoscope but I need pre meds as I'm v concerned re risk with so much histamine and adrenaline in my tissues and this is not done locally
I've been gas lit and marginalised for 2.5 yrs sadly not uncommon with these conditions
As mastocytosis and carcinoidnsyndorme both rare pathways aren't clear and GPS have no awareness
I'm being my own advocate sadly and researching it all myself to get to where I need to be which is slow and disappointing in the uk