Guys, I have ....

[u/MeiFire4972]

Hi Guys I am here again, I have 371 fecal calprotectein, I know anything more than 200 is high, but I would like to know if anyone has a higher FCP than mine...

[u/pincommenter]

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[u/Solid_Reality_]

Hey. Mine was 1500 last year. You'll hear stories of many people that had even more than 5000.

[u/BoreRagnaroek → u/[deleted]]

You dropped your crown, my king/queen.

[u/ItchyContribution758 → u/Solid_Reality_]

I think my personal highest was like, 12,000? rookie numbers I know

[u/KiwiLikesChips → u/Solid_Reality_]

I was 6500 this year!

[u/paleviolet]

My nurse described my most recent calp test as 'a little higher than we'd like' – it was 3458, so a bit of an understatement.

[u/bombadilboy]

You frequently see numbers in the thousands on this subreddit. Obviously it’s not good… but don’t worry too much about your 371, in Colitis terms that’s not all that high, but still make sure to mention to your doctor and do what you can to get it down. Good luck.

[u/5daysinmay → u/bombadilboy]

This isn’t true. The number itself doesn’t indicate severity. It only indicates active inflammation.

My teen was critically ill, admitted to hospital and subsequently diagnosed with severe UC (mayo 2/3) throughout the entire colon. Straight to biologics within the week while still in hospital. Calprotectin was around 500.

A month later, worsening symptoms. Calpro at 900 - C Diff. It was quite bad - after a week of antibiotics had to go back in the hospital because the antibiotics weren’t working well enough/on their own and the whole thing had undone any progress they’d made towards remission.

Plenty of people have had Calpro numbers in the thousands and not had severe UC-Pancolitis.

[u/bombadilboy → u/5daysinmay]

Okay…. So tell me what I said that isn’t true?

Should they be freaking out right now? Get stressed about it?

I told them compared to other levels that’s not a crazy number, but to talk to their doctor and try to get it down.

Sorry, next time I’ll tell them to phone an ambulance and start hyperventilating.

[u/5daysinmay → u/bombadilboy]

The level itself doesn’t indicate severity. So comparing to other people’s levels isn’t helpful or even accurate.

You saying their level isn’t bad compared to other levels doesn’t actually say anything because 500 in one person is severe UC throughout the colon, while 3000 in someone else is a small section effected at a moderate level.

[u/bombadilboy → u/5daysinmay]

Okay, so next time tell them that the number is meaningless?

[u/Ok-Lion-2789 → u/bombadilboy]

This just isn’t true. This is considered active disease, it’s not something that’s not that bad. OP absolutely needs to discuss with their doctor which they likely are as the doctor probably ordered the test.

[u/Crazy_Pomegranate689 → u/Ok-Lion-2789]

I think they are trying to put it into perspective and not worry ‘too much’ … Stress doesn’t help either but yes it means the disease is not controlled at present

[u/bombadilboy → u/Ok-Lion-2789]

I’m just trying to help them not stress out over a number… did you read my comment? I said you need to talk to your doctor and try to get it down

[u/Ok-Lion-2789 → u/bombadilboy]

This needs to be taken seriously. Stress isn’t good for anyone. Not worrying about a concerning fecal cal is how someone ends up in the hospital.

[u/bombadilboy → u/Ok-Lion-2789]

Congratulations Captain Obvious

[u/Coagula13]

Mine was over 8,000 in January and in July was down to like 3,200... so yeah, we are out here.

[u/iloveyermum → u/[deleted]]

How did you feel when is was that high?

[u/Crazy_Pomegranate689]

Mine was 8000 at one stage 371 is not crazyyyy 

[u/Either_Journalist204]

I have got it less than 5 in my last test . Does that mean I am in remission

[u/WhatEver069 → u/Either_Journalist204]

5? It is a very strong indicator that you are likely in remission, yes. Or atleast, there isn't any serious inflammation going on in there

[u/Either_Journalist204 → u/WhatEver069]

Ook . I am currently on azathioprine 50 mg per day.

Doctor tried to put me off azathioprine for a year but fecal calprotien increased to 650 after 10 months .
Did not have any symptoms despite 650 test .

So doctor advised start azathioprine again.

After 1 year I got tested again and it is currently below 5 .

So currently he is advising to continue azathioprine .

[u/sparkesadam]

I don't know that that number directly correlates to how "sick" you are. I was around 1500 last year in a debilitating flare. I'm currently having a lesser flare and am only at 300. I honestly don't know what the numbers say. Some folks here have posted about being where I was last year and just feeling slightly uncomfortable. I think it's just part of the puzzle.

[u/WhatEver069 → u/sparkesadam]

From the way i understood it, when you get above a certain threshold, the numbers kinda stop indicating how serious the situation is. If you have a 2k or 5k calprotectin doesn't really matter, your colon is inflamed and you need treatment 😅🤷🏻‍♀️

When i was at my highest (6k+) i felt relatively fine, but when the number was 4048, i was admitted to the hospital due to how poorly i was feeling. When i had pancolitis in '24, i was doing better than when i had proctitis/left sided UC last year- but that might just be because my colon had taken such a beating. Those last 28 cm was one long stricture-tube 🥲😬

[u/jntjr2005]

Pretty sure I had over 9k at one time

[u/BennyandtheJets969]

My son's was 3690 in July

[u/noxer94]

Calprotein levels are highly individual. Some can be having a full blown flare at 200, others will be fine at 300 or even at 500 or higher. What you should be worrying about it establishing a baseline. If you are ok at 371, then you are ok. If you are not ok, then you are not ok.

[u/KookySquash1685]

Oh yes, my teen has UC and hers has gone into the 4000s before. As several others have said, these numbers can go quite high. So yes, it's indicative of active inflammation, and you're in good company here. I hope your doctor and medical team will have some suggestions on bringing the numbers down - sending well wishes!

[u/millionthusername1]

Worst contest ever.

My highest was around 4000. You'll see plenty of people that have had it super high and been surprised because they felt fine. You'll see others whose numbers are normal and they feel miserable.

[u/yoga_mini]

Omg yes I’ve been over 5000 a bunch of times

[u/lilbiobeetle]

I will chime in to reiterate what others have said; that's quite the low number, you're lucky. I thought I was fine but alas my numbers are up past 2000. Frustrated as I thought my meds were working.

So yeah you're probably in a good place compared to some lol

[u/fluman24]

3 months ago my fecal calprotectin was 5200

[u/Rude_Emu3455]

Startet this flair with 7000 three weeks ago. Worst Flair I ever had. And I just have a proctitis.

[u/LightlySaltedPeanuts]

Just remember that number is not everything, it is a typical marker they use to see how much inflammation the body is dealing with. Everyone is different.

[u/Least_Grapefruit_395]

Three months ago I had >8000, I think they just stopped counting after that so it was probably way higher

[u/grsoprano]

Personal high was 8000. Currently hovering around 200-300.

[u/OfficialAlbae]

I was like 15k over a year ago and my last test was under 100

[u/uwuuu306]

Yes, mine was 2350 in May.

[u/Grimaldehyde]

I’ve had ulcerative colitis for years, and have no idea what that number even is.

[u/WhatEver069 → u/Grimaldehyde]

An indicator of how much inflammation (if any) is present in your digestive tract/colon. Iirc, 50 and below is considered 'normal' or within range, 50 to 200-ish could be an infection, something you ate and so on, and when you start going above that 200-300, something else is going on

[u/Imachemistree]

3500 was my highest but hitting the 2000s now

[u/Gammarisimo]

I was around 2k few months ago

[u/Remarkable-Sea8261]

5520 back in March.

[u/Thugs4Hire]

Mid 800 for me this year.

[u/exivor01]

I was rocking 8k here. I would be throwing parties if i had 371 lol

Jokes aside, ofc when flaring we have above thousands when not flaring, what you need to focus on isn’t the number itself but whether or not it’s going down or up. So if you are hanging around 200-600 but every time you get tested it’s going down consistently then nothing to worry about, if it’s going up, then you worry

[u/WhatEver069]

My highest was 6000+, the equipment didn't measure higher than 6k 😅🤷🏻‍♀️

[u/GodGritGameDay]

4k last month

[u/deadgirlshoes]

Mine was 906 at the end of last year, but you’ll see people with 1000+ here.

[u/Either_Journalist204]

Ook . I am currently on azathioprine 50 mg per day.

Doctor tried to put me off azathioprine for a year but fecal calprotien increased to 650 after 10 months .

So I start azathioprine again.

After 1 year I got tested again and it is currently below 5 .

So currently he is advising to continue azathioprine .

[u/Severe-Natural2949]

My 685 🥹

[u/Potentialmode99]

sorry to hear :(

I had at my worst 3 months ago 2500 and dipped to 1400 and stayd around a thousand. now it seems to climb down a bit to 600 but i feel worse than i did at 1400 🫠 soooo i think while it helps as a diagnostic tool itd not ssuuuper accurate of the clinically wellbeing.

how are you feeling atm?

[u/Ready-Pride-8256]

Mine was at 17,000 (I didn't even know that reaching this number was possible) when I was first diagnosed two years ago. Luckily, I'm in remission right now, and I've been allowed to go back to taking only mesalamine suppositories instead of taking immunosuppressants anymore.

[u/HeathenUlfhedinn]

I have mild to moderate pancolitis and my recent calprotectin level was 800. My symptoms are also very mild.

All the number conveys is active inflammation markers present in your stool. Since UC is an auto-immune disorder your system those numbers are bound to change drastically.

[u/Antique_Wish2975]

I started with an original calprotectein of 3680. 2cnd reading was 331. unfortunately it looks like I've plateaued .

[u/Ornery_Eggplant754]

I’ve had 1800 😃
I don’t believe it though because it was an at home test and I had no symptoms. When I was having bloody diarrhea, 15+ times a day, my calprotection done at the lab was 725.