What can cause ANA titre of 1:2560?

Posted by carpe_bean @carpe_bean, Sep 18, 2017

Hi everyone,
I got really sick back in January and have been struggling to get a diagnosis or treatment. I've read quite a few chat threads on this site for some time but have never posted. I have a question no doctor has been able to answer. Maybe someone in this community might have some insight! In May a doctor tested my anti-nuclear antibodies (ANAs). The titre was 1:2560. I know ANAs can be elevated by autoimmune diseases, cancer, and viral/bacterial infections, among other things. So far, doctors haven't been able to figure out what's wrong, despite a host of weird symptoms and irregular tests. My question is: How likely is such a high ANA to be associated with an autoimmune disease? I've repeatedly read that the titres caused by viruses and bacterial infections are usually "mild", presumably <640. Is that true? Doctors have ruled out cancer, they don't believe it's a bacterial infection, but a virus is always a possibility. Can chronic viruses like Epstein-Barr cause such a high ANA? Has anyone else here personally experienced that? I've seen a handful of doctors, but most have been dismissive and unhelpful. I'm really frustrated. Hopefully someone here can provide some clarification. Thanks!

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sandrasii | @sandrasii | Oct 30, 2022

I have the same ANA 2560 as you, diagnosed as autoimmune disease. I have minimal symptoms or no symptoms since I started my new lifestyle and avoid foods based on this book for the past 4 years. Hope this is a helpful resources for you.

carpe_bean | @carpe_bean | Oct 26, 2022

In reply to @dxcrestsyndrome2020 "Hi! I found this website by entering in my ANA result which is the same as..." + (show)

Hi @dxcrestsyndrome2020

It's been so long since I first got sick (six years now), I no longer remember what they tested exactly.

I do know the doctor who tested for ANAs initially also tested for several other antibodies, but I'm not sure exactly which ones and they were all negative. The only test results that were consistently high were liver enzymes (AST, ALT, and gGT), blood pressure (at times over 200 systolic when I'd always previously had pretty low BP), and ANAs. They first tested for ANAs in April 2017 with results of 1:2560 “Mitotic II” pattern. The doctor said it must be an error so he re-tested two months later and the titer was 1:1280+ with “fine speckled” pattern. Do you know what type of ANA pattern you tested positive for?

I never did get a diagnosis, nor have I actually seen a doctor in years. My health gradually started to improve after the first couple of years and has continued to improve with time, gradual return to exercise, and a careful diet. At some point I made the decision not to try to find "answers" or get a diagnosis.

I'm glad to hear that turmeric has helped for you. Hopefully your road will be smooth from here on out!

John, Volunteer Mentor | @johnbishop | Oct 26, 2022

In reply to @dxcrestsyndrome2020 "Hi! I found this website by entering in my ANA result which is the same as..." + (show)

Hello @dxcrestsyndrome2020, Welcome to Connect. I'm glad you found us. I don't have any personal experience but you are not alone and there are others who can share their experiences with you. You might want to join the following discussion to learn what others have found helpful:

-- Limited Scleroderma or CREST Syndrome: What helps?:
https://connect.mayoclinic.org/discussion/crest-syndrome/

dxcrestsyndrome2020 | @dxcrestsyndrome2020 | Oct 26, 2022

Hi! I found this website by entering in my ANA result which is the same as yours. I have officially been dx’d with Crest Syndrome, now referred to as Limited Scleroderma. Have they tested you for your Anti-Centromere B antibody result? Have you been able to figure out your issue yet?

I have not read all the comments or really any of them yet in depth but I did glance quickly, and saw the word “turmeric” in a few of the responses. I am taking turmeric in a capsule form for inflammation. Very helpful.
I hope you are able to figure out your auto immune issue. It’s been a long road for me…

carpe_bean | @carpe_bean | Oct 25, 2022

In reply to @foyk "my ana titer 1:1280 from recent tia, sinus infection, with no clarification on whether systemic sclerosis/polymyositis..." + (show)

@foyk

my ana titer 1:1280 from recent tia, sinus infection, with no clarification on whether systemic sclerosis/polymyositis overlap which was dx 10 yrs ago then told conflicting dx since. i’ve had sjogrens since 40s and managed well with internist who knew i had seen 3 rheumotologist and frustrated. with tia attempted again, along with neuro. asked for test/scleroderma and 13 vials later have labs but another worthless rheumotologist that spent 5 mins on video before acting like she couldn’t hear me. she didn’t hear me intake/original appt with x-rays /labs and nothing followed through. nothing. shared dx of IRD and not wanting to further harm eyes with going blind. asked for short term option to knock down inflammation , functional approach with using adaptogens , herbs, decade now to manage pain, flare ups etc with exercise and liquid diet when needed nutrients. when asked on scleroderma dx clarification was told ‘ it’s not lupus’. i didn’t test and could return for additional. wouldn’t even refill basic d3, ibuprofen rx to reduce costs with $7 rx on both at higher dose than over counter. so frustrating to not be heard when you know your body and screaming for help - to be seen. to be respected that your intuition is valid and your not ‘crazy’. the look and eyes say it immediately when you know they are not the ‘specialist’. i have raynauds daily upon triggers, toes blue/blk daily has moved to knees from ankles in pain, swelling and vascular concerns left leg/knee and can’t breathe. last week was first patch of white shiny taught patch on bridge of nose. had immaculate care of teeth, last cleaning oct at time of infection / decay on two front receding JUST since flare. my body is attacking every part of my light. i’m tired. exhausted. medical discrimination at work fear losing coverage that in jan hit annual max and have coverage. (mri/mra /cta for 3-5 aneurysm scans by neuro ).
sorry for rant. some days i just can’t believe this is reality.
have vascular appt monday. internist april. has anyone had success with immunology vs rheumotologist? i’m trying to get answers to manage w internist/specialist goal and eliminate one size fit mentality of rheumotologist.
wishful thinking?
systemic s flare ? is more than i’ve managed with sjogrens flares.

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@foyk Definitely don't apologize for the rant. Rant away! I've definitely been there, and it sounds like my symptoms weren't nearly as severe as all you've suffered. I hope you've been able to get some relief since your last post.

carpe_bean | @carpe_bean | Oct 25, 2022

In reply to @cathiz "Hi @carpe_bean I have a high ANA titre also and after further testing my Rheumatologist discovered..." + (show)

Hi @cathiz

Thank you for your response. I guess I must've checked the wrong settings way back when I posted my original post because I've never gotten notifications that folks responded. I just assumed it was crickets on here!

I'm sorry to hear you were diagnosed with scleroderma, but I'm also glad that you were able to get a diagnosis, especially since you were able to find relief in treatment early on.

I never did get any definitive answers from doctors in Germany. After a couple years, I stopped trying. One doctor recommended a gluten-free diet for five months, which was really tough (and expensive) to maintain and had zero benefit. Another doctor - ironically - recommended I stop going to doctors to figure out what was wrong. I say ironically because he might've actually been right (for my personal situation - definitely NOT suggesting anyone else give up looking for answers to their own health problems!)

My health continued to improve on its own, with a lot of patience, gradual return to the physical outdoors sports I love, and really just time. Considering how stressful doctor appts were, it was easier just learning to cope with the symptoms than dealing with dismissive medical staff on top of it.

Interestingly, my ANA titres stayed sky high for about the first year, then gradually declined as my symptoms improved. I'm not sure I'll ever be at 100% like I was before this crud hit six year ago, but I'm a LOT better than I was.

Back in 2006, I had a similar illness, though less severe, that developed in much the same way but wasn't as severe and didn't last as long. Makes me wonder if it is some sort of relapsing autoimmune disease? Maybe it's just a recurrent virus? I might never know. I'm always half expecting it to just suddenly hit again, but I'm grateful for the reprieve now.

~Carrie

carpe_bean | @carpe_bean | Oct 25, 2022

In reply to @liljhn "Hi. Your post is old I see but my fourteen year old daughter has the same..." + (show)

Hi @liljhn

I just replied to your private message!

~Carrie

carpe_bean | @carpe_bean | Oct 25, 2022

In reply to @socalgirlntx "Hello. I came across this discussion group and read this post and immediately connected to your..." + (show)

Hi @socalgirlntx

I just now finally saw your comment - and others - on my original post from years ago. I know it's way past due, but I still wanted to respond and see how you're doing.

How ARE you doing? Did you ever get that appt with a rheumatologist? Did they do testing? Did they give you a diagnosis or any answers?

I never did get any definitive answers from doctors in Germany. After about two years, I stopped going entirely. One doctor recommended a gluten-free diet for five months, which was absolutely miserable and had zero effects. Another - ironically - recommended I stop going to doctors and stop trying to figure out what was wrong. I say ironically because he might've actually been right (for my personal situation - definitely NOT suggesting anyone else give up looking for answers to their own health problems!) My health continued to improve on its own, with a lot of patience, gradual return to the physical outdoors sports I love, and really just time. Considering how stressful doctor appts were, it was easier just dealing with the symptoms without dealing with them on top of it.

Funny you should mention it but Sjogrens was definitely something I considered early on! Not a single doctor I saw mentioned it, but it seemed to fit with what other people had written about online. Interestingly, my ANAs stayed really high for about a year, then gradually started to come down as my symptoms improved.

Autoimmune attack of some sort? Maybe. No idea. Just a really nasty virus? Who knows. I tend to lean toward the former since I had a similar bizarre, severe illness come on abruptly in 2006 as well. That first time, all symptoms resolved within about a year. This second time, the symptoms were a lot worse for well over two years and six years later they still haven't resolved completely.

I'm still expecting whatever this was to just hit again some day. In the meantime, I try to enjoy how good I feel NOW.

I really do hope that you've gotten some answers or at least that you're just feeling better!

~Carrie

Mshutch | @mshutch | Oct 5, 2022

my rheumatologist also checked my ANA (Antinuclear Ab, HEp-2 Substrate, S).
Method: Immunofluorescence using HEp-2 cellular substrate

My result was also 1:2560 and a comment: ANA is strongly positive in a centromere pattern consistent with impression of scleroderma.
Before sending me to the rheumatologist, my primary did an ANA2 CASCADE.
The interpretation was only a comment: Results are consistent with CREST syndrome.
C.R.E.S.T. is old terminology for systemic sclerosis but it stands for:
(calcinosis, Raynaud's phenomenon, esophageal dysmotility, sclerodactyly and telangiectasias).
I have had all of these for several years except for the calcinosis.
Here is a link to the information from Mayo on it:
https://www.mayoclinic.org/diseases-conditions/scleroderma/symptoms-causes/syc-20351952

kt8 | @kt8 | Mar 26, 2022

In reply to @kt8 "So sorry that you are suffering. Have you considered Mast Cell Activation Syndrome. A high ANA..." + (show)

Lawerence Afrin

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