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!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@liljhn

Hi. Your post is old I see but my fourteen year old daughter has the same ANA as you stated and that’s how I found your post. She has many of the same symptoms and doctors chalking it up to anxiety but she has yet to see rheumatologist gynecologist neurologist and cardiologist.. what did you find out for yourself? Have you found any gluten intolerance within yourself? The infectious disease dr said since she is negative for celiac then gluten probably isn’t an issue.. but she has been bleeding longer than 35 days and is anemic and I am awaiting yet more appointments.. thank you for your post.

Jump to this post

Hi @liljhn

I just replied to your private message!

~Carrie

REPLY
@cathiz

Hi @carpe_bean
I have a high ANA titre also and after further testing my Rheumatologist discovered I have systemic scleroderma. She immediately started me on CellCept and I am doing great now. It took 6 weeks for the medicine to get enough in my system to really start working but when it did it was like night and day difference from one day to the next. They caught mine in the beginning and it sounds like that is the key, even though it sounds like others that have started on CellCept also have had good benefits also. Hope this helps! @cathiz

Jump to this post

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

REPLY
@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.

Jump to this post

@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.

REPLY

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…

REPLY
@dxcrestsyndrome2020

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…

Jump to this post

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/

REPLY
@dxcrestsyndrome2020

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…

Jump to this post

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!

REPLY

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.

REPLY
@sandrasii

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.

Jump to this post

Welcome @sandrasii, Thanks for sharing your experience. I am a believer of the old quote: “Every time you eat or drink, You are either feeding disease or You are fighting it. The choice is Yours.”. Do you mind sharing what made you decide to get the Paleo diet a try?

REPLY

Hello,
I’m in a similar boat. I have been through a lot and I’m still looking for answers after years of dealing with debilitating pain. I have many dx’s; however, I’m still looking for answers for the unexplained issues and constant pain I’ve felt all my life every day of my life and it’s only getting worse and more symptoms are adding on, which is overwhelming to the point I want to give up.

Anyway, I am so truly sorry to hear of your struggles. I do hope you get answers soon! I was thinking in regards to your health, have the doctor’s considered testing you for Cushing's disease, or looking for a tumor outside the pituitary gland or Congenital adrenal hyperplasia?
Just some thoughts based on your adrenaline spikes and irregularities.
I hope this is helpful. Maybe they have but who knows, I wanted to pass it along just in case.
Please take care and feel better love. I know it’s so difficult to stay positive, believe me I really know this from experience, but do try. The brain is powerful and believes what you tell it. 🙂 Keep that in mind. Have a wonderful day. Hugs!!!

Kat ❤️

REPLY

@carpe_bean and @katk Good evening. I’m answering to both of you because you both seem to be in the same “nebulous” world of ‘doesn’t anyone know anything?” Have you tried seeing a rheumatologist? They are the ones specially educated in autoimmune diseases. Especially the newer doctors. You may need to go to a major medical center or university hospital. When I first started getting sick, the doctors simply thought I was dehydrated. When I was VERY sick, I was asking for an MRI, which they finally did. But, none of them were able to interpret what the MRI showed. The films were sent to the nearest university, where a diagnosis was made.
Make a list of your symptoms, most to least bothersome. Then keep track of how often they happen, what you were doing, if you ate anything different. You want to clarify , for yourself and for doctors you see, all your problems and how they are affecting your life. Advocate for yourself!
Think you can do this?

REPLY
Please sign in or register to post a reply.