1. < Autoimmune Diseases

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.

beryl | @beryl | Feb 24, 2019
In reply to @zebraclaire97 "Thank you @johnbishop for linking me here! And thank you for the ANA links. It is..." + (show)
@zebraclaire97

Thank you @johnbishop for linking me here! And thank you for the ANA links. It is always good to keep in mind the fallibility of blood tests - If it were just my ANA I would not be concerned but I have had systemic autoimmune symptoms and the elevated ANA reliably for 2 years now so I am just concerned, understandably.

@becsbuddy Thank you so much for the suggestion and your kind words. I am trying to plan a mayo clinic trip in the summer after I (hopefully) graduate - I'm 3.5 years into my neuropsychology program and am really just trying to make it to the end. I have gone to University of Colorado Anschutz Hospital for 3 years now, and they basically said they couldn't help me anymore once I didn't have MS, and their rheumatology department refused to see me without something more "conclusive" (than an ANA, optic neuritis, and lesions? hm). I have been seeing Dr. Jill Schofield, who is an autoimmune and rare disease specialist in Denver. She is the one who has been able to help me even begin to figure out a lot of this, but obviously it's a pretty big puzzle for any one person to figure out! I will let my family know (they have been encouraging me to consider mayo) that people seem to get good answers, they are just worried about the cost partly.

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Mayo clinic sounds an excellent move. Beryl

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Claire | @zebraclaire97 | Feb 24, 2019
In reply to @bluebird6156 "It is totally possible to have RA and Sjögrens even through blood work does no show..." + (show)
@bluebird6156

It is totally possible to have RA and Sjögrens even through blood work does no show it. You can be zero positive. So many things you described reming me of Sjögrens. Sjögrens has inflamed joints, sores in mouth, eye issues including dryness, infections, and serious issues. Sjögrens causes issues with muscles and tendons along with bursitis. If they said no to Sjögrens did they do a lip biopsy? They should have. I know of an amazing Sjögrens group with informative folks and constant post. If you want it just let me know. Do not let them off the hook. I think they are trying but some flags were raised. Such as them not knowing you can be zero positive and not doing a lip biopsy. Hang in there and keep advocating for yourself.

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@bluebird6156 The only test for sjorgens I have had is two different blood panels, both negative. They tried to do that thing where they stick the paper in your eye but my eye burned too badly - I don't remember what the doctor exactly said but she said the test wouldn't be usable and took it out. I will definitely ask if there are other tests we can do for RA or Sjogrens like the lip biopsy - thank you so much! One of my worries is just that my doctors are struggling to find anything that could explain such varied involvement in my brain, liver, joints, etc.

@jenniferhunter Thank you for the book! I will check it out - I like reading!

@lioness Thank you for your kind thoughts! It has been very hard but I am determined to figure it out - I just get a head start 🙂

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1 reply
lioness | @lioness | Feb 24, 2019
In reply to @zebraclaire97 "@bluebird6156 The only test for sjorgens I have had is two different blood panels, both negative...." + (show)
@zebraclaire97

@bluebird6156 The only test for sjorgens I have had is two different blood panels, both negative. They tried to do that thing where they stick the paper in your eye but my eye burned too badly - I don't remember what the doctor exactly said but she said the test wouldn't be usable and took it out. I will definitely ask if there are other tests we can do for RA or Sjogrens like the lip biopsy - thank you so much! One of my worries is just that my doctors are struggling to find anything that could explain such varied involvement in my brain, liver, joints, etc.

@jenniferhunter Thank you for the book! I will check it out - I like reading!

@lioness Thank you for your kind thoughts! It has been very hard but I am determined to figure it out - I just get a head start 🙂

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@zebraclaire97 Your welcome remember one thing you are your own advocate and listen to your body .

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TERESA LOGAN | @quiteachiver75 | Feb 24, 2019
In reply to @sugarboo "Hi Claire so sorry to hear of all your ailments. I too have suffered for 35..." + (show)
@sugarboo

Hi Claire so sorry to hear of all your ailments. I too have suffered for 35 years with word stuff. I now know it is from Leaky Gut syndrome”. Go research it, and you will find a wealth of information. Pub Med is a great site. I went to an interventional dr and got tested through the Great plains Labarotory. Tests results proved I have overgrowth of Candida Albicans In my intestinal tract and they cause all kinds of health problems like you are describing. Anti fungal medications can help greatly. I took them for three straight weeks and after I felt amazing! Most of my health problems went away! But they came back after two years. The Candida albicans thrive in the body if your PH levels are off. It’s difficult to figure out how to fix the PH levels. Go look into the Candida diet and go from there. I hope this helps you.

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@quiteachiver75 Hello 👋 I found another site about Leaky Gut it is healthy women I found the photos helpful good luck

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janice76 | @janice76 | Mar 3, 2019

I had the exact same result. First I was told the doctor was 95% sure I had Scleroderma. Then the doctors opinion was Lupus. My diagnosis switched between the two for several years. The last diagnosis was Mixed Connective Tissue Disease.

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djanthony | @djanthony | Mar 5, 2019

Find a doctor who will order a "double-stranded anti-DNA autobodies" blood test which is the only truly definitive way to find out if you suffer from Systemic Lupus Erythematosis, or "SLE" or even "Lupus" for short. I too had extremely high titres to both Epstein Barr and ANA. Doctors couldn't diagnose me for six full years. Most doctors don't know about the above mentioned blood test or are hesitant to order it because it's very expensive. So I decided to find out for myself what I had because I knew that something had to be causing my horrific fatigue and aching joints. I went to Emory's Medical Library many times to try to diagnose myself until I found that I must have Lupus after all. My primary Doctor told me I couldn't have Lupus because "I didn't have the right personality for Lupus"! I found an excellent Rheumatologist who examined me and told me he believed I had Lupus and also it's sister disease, Sjögren's Syndrome, for which he also ordered an "SS-A and SS-B titres"for the Sjogren's Syndrome. I had both.
Lupus is a very difficult disease to diagnose because each patient has different symptoms, with profound fatigue as the only Universal symptom, I believe. Sensitivity to sunlight may be another common one but is not true for every person. After being in sunlight, the telltale butterfly, or "discoid" rash can appear on one's face. The rash actually resembles a butterfly and you can GOOGLE photos of it. I wish you good luck in finding an answer. If none of your doctors has done the Double-stranded anti-DNA antibodies test, then by all means, find one who will!!! I wish you the best and pls keep us informed. One last thought:. I went to a different Rhematologist first. He told me I was suffering from Epstein Barr and definitely NOT Lupus. After I found a GOOD Rhematologist, I was sure to send the previous Rhematologist the results of my "positive for SLE and Sjögren's Syndrome" blood test results. He later apologized to me.

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Lisa | @techi | Mar 16, 2019

I went to see my rheumatologist last month and he's the greatest. He did the routine blood work for my 6month visit. And they called me the next day and said your AHA is higher then before. And the thing is l am very allergic to a lot of meds. So he was going to prescribe me a medicine to suppress my the nerve but l told him he gave it to me before and l.had a reaction. He said what kind l said it had me to use my EpiPen so l didn't get it. And seems like there are many meds for high ANA. So l have to just deal with my problems. I don't know what happens if you can deal with the symptoms. Has anyone had this problem. And l don't know if l can't take some meds because of my liver. Anyone who can enlighten me about this it will be helpful. Thank you

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Ethan McConkey, Moderator | @ethanmcconkey | Mar 16, 2019

Hi @techi you may have noticed I moved your post to this existing discussion on high ANA so you can connect with others who also have high ANA. Just click VIEW & REPLY in your email notification to get to your post.

I wanted to introduce you to @hchristopher @lisabeans @taterjoy @brie87144 @jewel8888 @steeldove and @carpe_bean as they have experience with this.

What medication was your doctor going to prescribe?

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Suzi R | @suziropiequet | Mar 17, 2019
In reply to @carpe_bean "Hi @lisalucier, Thank you for responding. I do hope @johnbishop might have some helpful input. I've..." + (show)
@carpe_bean

Hi @lisalucier,

Thank you for responding. I do hope @johnbishop might have some helpful input. I've been following the Autoimmune Diseases group you mentioned for a few weeks and have read through many of the discussions. Some of the threads have provided useful info during visits with my doctors here. I haven't seen much specifically about what can cause ANAs that are that high though.

Geez, I hadn't intended to go too much into the specifics of the course of my illness simply because of the dizzying array of seemingly unrelated symptoms. Sure-fire way to sound like a loony to a doctor is to list more than 5 symptoms at an appt. But hopefully folks here are more understanding, so here goes!

*Vision problems – dry, tired, burning eyes that often feel gritty, worse in the sun
*Difficulty concentrating and thinking
*Fatigue (not the first symptom, and has improved slowly)
*Difficulty swallowing
*Deep pain in muscles, worst from neck to tailbone and in big muscle of left leg and shoulder
*Adrenaline rushes like the feeling you get when you fall from a plane (Jan – April mostly)
*Back pain around left kidney/adrenal/spleen (constant, horrid burning or sharp pain)
*High blood pressure
*Headaches, usually radiating up from the base of my skull (constant since July)
*Neck pain (constant since July)
*Painful, flaky dry skin rash on right middle finger at knuckle (resolved with prednisilon)
*Insomnia (Jan – April, now resolved)
*Chills and sweats
*Decreased appetite (Jan – April, resolved with prednisilon)
*Weight gain
*Extreme thirst & frequent urination (Jan – April worst, now wake up 1x/night)
*Bloating
*Chest pain
*Super mild intermittent cough, mostly when laying down or in certain yoga positions
*Chronic UTIs, last one took 3 rounds of antibiotics to resolve
*Can't focus, make decisions, trouble comprehending what I've read
*Burning pain in lower back at site of excised lipoma, tail bone, and surrounding area
*Tingling and prickles down left side only
*Wake up and both hands are completely “asleep”, nasty pins and needles when I move them
*Edema? Swollen hands that always hurt and feel stiff

Doctors have ruled out just about everything, really. I asked the rheumatologist today if she thought it could be something like CFS/ME, but her response made it clear she doesn't believe either of those is a “real disease.” My only other guess is that this is a virus, maybe something like chronic EBV. I was tested for it in March and again in May and both times, the IgM level was 2.2, then 2.1, which was about 4x elevated according to the allowable upper limit for the lab result. My GP at the time said since it was just a virus, I just needed to go home and rest. Since then, every doctor I've seen said it isn't EBV because the IgM level from March to May didn't change, which means that's just my baseline.

My husband and I are pretty much at zero here – no idea what to do at this point. If we could use our German insurance to seek medical help in the US, I'd go back in a heartbeat. Or if we could even find a doctor who treated ME or EBV here, I'd try to see them. Unfortunately, the nearest clinic that treats infectious diseases like that is in Berlin, 4 hours away, and I can't even schedule an appt without having seen a long list of specialists and having had a list of tests. My current GP directly refused to order any more tests at my last appt, and he's the third GP I've seen. The first told me I'm in pain because of “fear” and the second attributed my symptoms to “anxiety.” It's exhausting and incredibly stressful trying to get help from doctors who clearly think I don't belong in their office. At what point do you just quit having faith in doctors altogether? At this point I think I might be better off avoiding them altogether and hopefully this nasty thing will eventually just go away on its own.

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Hi, carpe-bean, although I am primarily a lung and heart patient, a High Resolution CT Scan recently revealed a lot of scarring in my lungs. I was diagnosed with Interstitial Lung Disease (ILD's). My Pulmonologist sent me to a specialist who deals with "rare and unusual I.L.D.'s and lung transplants." He diagnosed me in less than 15 minutes. He looked at the Hi Res CT Scan, asked me a few questions (dry eyes, check, dry mouth, check. Mom had the same but was undiagnosed), looked at my finger tips, which look and feel like little leprechauns have been using razor blades on them, painful and cracked. My diagnosis: Sjogren's Syndrome. (pronounced SHOW-grins). I started taking generic Cellcept, which is supposed to help reduce the inflammation in my system.

Our similar symptoms: vision problems – dry, tired, burning eyes that often feel gritty, worse in the sun, difficulty concentrating and thinking, fatigue, deep pain in muscles, tingling and prickly, worse on left side of body, neck pain, extreme thirst. You may want to go here on the Mayo site and read more about Sjogren's, and see if that's what you might think you might have. I have bought Bausch + Lomb eye drops without preservatives, and still drink tons of water every day, now I know why I've been so thirsty for so long. I understand how frustrating it is to put trust in doctors.

I started going down hill in Sept, been on 40 mg Predisone/day, attempted tapering twice. My Pulm. had me get a regular CT Scan. I went to the appt, he sat there, crossed his arms and legs, and said, "I don't know what's wrong with you." Great. So just keep taking Prednisone until symptoms subside. Well, they never subsided, just got worse. If I climbed a flight of stairs, I was gasping for air like a fish out of water. I emailed my Pulm frequently, telling him how miserable I was. I'm a strong person and have been through a lot, but this "I don't know" business is for the birds. He should have sent me off for testing much sooner. OK, I'll stop my rant. Let us know what you think about Sjogren's. Try to stay strong! Suzi p.s. if you have any of your blood work results, perhaps online with your health care system, you could look for SSA and SSB Antibody counts. SSA and SSB are 2 indicators for Sjogren's. My SSA is negative, but my SSB is a weak positive, 33 units, 20 units being the high end. My ANA Screen is positive, and my ANA Titular ratio is 1:160. Hope this helps!

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Suzi R | @suziropiequet | Mar 17, 2019
In reply to @carpe_bean "@johnbishop Hi John, Thank you! I really appreciate your response. As to why the doctors here..." + (show)
@carpe_bean

@johnbishop

Hi John,

Thank you! I really appreciate your response. As to why the doctors here aren't taking me seriously, I think it's a combination of things. I get a sense that much of it stems from the culture here. I've gotten the clear message that I'm no more important than the next patient - in fact, one doctor blatantly said that. It's just widely known and accepted that wait times for an appt with a specialist or for tests like MRIs are commonly 3-6 months. I've noticed that across the board, doctors don't take a thorough patient medical history, family history, only on rare occasions or if you request it do they take vitals - BP, heart rate, temperature, height, weight, etc, and physical exams are either non-existent or cursory. They just have a completely different approach to medicine.

Prior to January 2016, I wasn't taking any medications, not even vitamins. In April 2017, a doctor rx'ed Tramadol for pain control and I've taken it nearly continuously since then, first with liquid drops (though I was taking 1/4 of the daily amount he rx'ed so it lasted much longer). In June, my GP rx'ed long-lasting Tramadol oral tablets instead to be taken twice a day. I'm currently taking them once in the morning, 50 mg tablets. I honestly am not sure I could function without them, which sucks. Other than that, I'm only taking 20000 units of Dekristol (Vit D) every 2 weeks. My vit D was at about half what it should be back in March, when I started taking it. My levels are now finally back to normal as of this week.

I did check the symptom checker on the Mayo site. I've been on there so many times! It really is a good resource, but unfortunately it doesn't allow searching by lab results. If only I could put in my results for ANas, iron, Complement C3c...those kinds of things. Unless there's a way to do that that I maybe missed?? I'm afraid I really just need a good doctor.

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Hi carpe diem, maybe you could Google "rheumatologists near me," go window shopping, and read their Google or patient reviews. Good luck!

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