What can cause ANA titre of 1:2560?
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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Hi @liljhn
I just replied to your private message!
~Carrie
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
@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.
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…
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/
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!
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.
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?
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 ❤️
@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?