Differentiating Carcinoid syndrome from MCAS?

Posted by debbieguk @debbieguk, Apr 15, 2023

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
Breathlessness
Dry cough
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
Fatigued
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 .
Acid reflux
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
Crp normal
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
Fatigued
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

Thank you

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Profile picture for jsudjian @jsudjian

Hi, do you know if really bad itching on top of the flushing is typical of CS, also, my flushing is full neck face and head and basicaly constant, the itching is better with antihistamines but the flushing is solid and almost constant for two months. My docs are leaning more to high cortisol and stress, but of course you know what my fear is

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Good morning, when I was experiencing the flushing I don't recall any severe itching with it.. Is the itching all over? I do hope they find the source your flushing, I went through a few months of that and it was stressful, especially in public when you get the strange looks from others..

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Profile picture for vinnie694 @vinnie694

Good morning, when I was experiencing the flushing I don't recall any severe itching with it.. Is the itching all over? I do hope they find the source your flushing, I went through a few months of that and it was stressful, especially in public when you get the strange looks from others..

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Hi, I get little bits of itching like phantom itching here and there on body, but the severe itching was my head, then the rest my face. So basicaly I'm flushed, fully not patchy, face neck and head and constant itching face and head.

Have you heard from others that itching was like mine, or that the flushing is non stop, or is it usually episodic

sorry your fighting this

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @jsudjian and welcome to Mayo Connect. I see that you have had bad itching and flushing for a couple of months. I am sure you would like an answer to this problem; it sounds very uncomfortable.

I am glad that your medical team is looking at various possibilities for these symptoms. From what I know of carcinoid syndrome, flushing is a feature, but I have not heard of itching. It is important to give your medical team time to work out the various reasons for these symptoms.

Share, as you are comfortable doing so, some of the diagnostic tests that have been done so far. Any tests that are scheduled for the future?

As this diagnosis might take a while, try to do some things you enjoy, like taking a walk, meeting with friends for a meal, reading a good book, going to a movie, listening to music. Relaxation is important as you wait for an answer for these physical symptoms.

As you have mentioned four deaths in the last year, I would also encourage you to join the Loss and Grief support group on Mayo Connect. Here is a link to those discussions: https://connect.mayoclinic.org/group/loss-grief/. Use these discussion groups to write about your losses and read what others are saying. Also, you might look into an in-person grief support group in your area.

In the meantime, keep posting on Connect. Share your concerns as well as the progress of your medical team. Remember that there might not be a quick answer to these various symptoms, so take good care of yourself during this discovery process.

Will you keep posting updates and questions?

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Hi, you are too kind, I hope you are not AI lol.

Yeah I was desperate last night and tired, so I will give more details as it goes. Thank you

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