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!
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Examples of rheumatic diseases that might have a positive ANA test include:
1. Rheumatoid Arthritis.
2. Sjogren's Syndrome.
3.Systemic Sclerosis (Scleroderma)
4. Inflammatory Myositis (Polymyositis or Dermatomyositis)
5.Mixed Connective Tissue Disease (MCTD)
6. Overlap of undifferentiated Connective Tissue Diseases.
Hi @devesh, Welcome to Connect. Thank you for sharing these examples. May I ask if you have one of the autoimmune diseases and what treatments you have found helped you?
Hi, I didn't see your post until now. I can't believe how many of your symptoms I've had, right down to the left-side numbness and tingling. So miserable. I'm really sorry you've experienced all this same crap.
I did consider Lyme disease back when I first got sick. I've been bitten by a handful of ticks since moving to Europe, and we live where Lyme is common. Despite that, none of the doctors here even suggested it as AA possible cause of my symptoms. I had to ask an internal specialist to test for it. The test was negative. Another doctor again tested for it, as well as several other tick-bourne disease, and all tests were negative.
At this point (nearly 3 years of being sick), I'm convinced it's a chronic bacterial infection. It's likely something infectious (my hunch and doctors' opinions), and I feel SO much better after antibiotics. Then the symptoms come back. Doctors here say it's absolutely impossible for a bacterial infection to cause elevated ANAs. Agh! So not true.
How were you, treated for Lyme? I assume you took antibiotics? I'd love to know how you're doing now, if you happen to see this post.
@carpe_bean Welcome to connect we are a group of caring people who have diff. problems we can help with I did have a high ANAtiter . I don't remember the number it was 50 years ago but I had the red rash with it and my Dr. then diagnosed it as Infectious Mono caused by the Epstein Barr virus . NOw I have fibromyalgia whether it is related I'm not sure . My Dr doesn't know . It was diagnosed by blood work and the rash,fatigue ,sore throat and fever . The Dr. put me on massive doses of vitamins and bedrest for 3 weeks. My Mom took care of me then. This was my experience with high ANA titer . Good luck Make sure you are under a Dr,s care .
Hi everyone. I wanted to come back and update you all since you were so kind and helpful before. I have seen a couple different rheumatologists and rare disease specialists. I haven't made it to mayo yet, the trip expensive is a bit big atm unfortunately. That said: two of my doctors have two different theories; fortunately the treatment is the same! My rare disease specialist believes I have seronegative Antiphospholipid Syndrome, due to my frequent livedo reticularis and other APS indicative symptoms. My rheumatologist believes I have seronegative Sjogrens Syndrome and some kind of seronegative MCTD. Either way, I have been treated with 200mg then 300mg Plaquenil for the last 5 months or so. Within weeks my bursitis and tendonitis was half of what it was, and my joint pain was significantly reduced. Now, several months out, I have about half the joint pain I had before, and only very mild tendonitis and bursitis, though it persists in my ankles, shoulders, hips, and wrists. I am going to be getting a central line soon so that I can receive more regular infusions for my POTS, which makes a huge difference in my wellbeing, and I recently had sinus surgery which has helped my breathing and infections a ton! They also diagnosed me with Common Variable Immunodeficiency as my IgG was very low, which explains the frequent infections. I definitely still struggle with a variety of things, neck and right upper quadrant pain have been the biggest issues for the last year or so. I may need hip reconstruction shortly as my right hip, we've found on MRI, has some structural abnormalities, tendonitis and bursitis, a tear in my labrum, and a tear in my gluteus maximus. But overall I am doing much better and am very fortunate to have found physicians who treat my symptoms, not my bloodwork, and listen to my concerns. Thank you all again!
How wonderful that you found doctors who listened to you and were able to put the pieces of the puzzle together in order to reach a diagnosis, @zebraclaire97. It must be gratifying to be feeling better and to have doctors who will listen to your concerns.
Advocating for yourself and continuing to seek answers to hard-to-diagnose disorders is very important. You have shown that being proactive and persistent has paid big dividends in your well-being!
A recent blood test shows I have an ANA of 1.1280. I’m a 75-year-old woman in otherwise excellent health. I do have an appointment with a rheumatologist and likely will have further testing. I’ve read where high ANA is prevalent in older women. Anyone out there find that to be true and diagnosed as such? Thanks so much for any input!
Hi,
I know it’s been a while since this post was made and I hope you have already found your answers by now.
Sorry for the rant here, this is often something I find myself debating with classmates (nursing student) and friends about.
I understand if no one actually reads this😅.
I myself have an ANA of 1:2560, and share a few of your symptoms.
With a list like that I think you may find you have multiple conditions(same as me), and this is why some doctors will dismiss certain symptoms as they are looking for conditions they happen to recognise more readily or a set of symptoms they believe line up with each other (this will differ between doctors and what they are use to seeing, and can even be influenced by the patient before you).
What you may also find is some of your symptoms will be caused by others, and thus seemingly dismissed by some doctors who aren’t treating them as separate and serious symptoms.
Things such as physical aches and pains are often a result of the body compensating, instead of all being separate issues.
In my case this is that the bridge of my left foot is collapsed and my ankle rolls inwards, this in turn caused my knee to hurt due to the change in weight distribution and my right leg to compensate, causing me right sided pain from my calf to my shoulder and even put my hips out of alignment (it took years to get to this point as I am a terrible patient who puts up with everything until it breaks me haha).
My personal list of symptoms is (the stared symptoms have been diagnosed):
Hot flushes (adrenaline rushes)
Iron deficiency (non diet related)
Abdominal pain, to which I can black out
Fatigue
*Vertigo
*Nausea
Intermittent loss of appetite
*Occasional tunnel vision due to dizzy spells
*Fingers and toes turn blue
Forgetfulness
*Light headed
*Livedo veins
Left sided chest pain
Oedema In ankles
Pins and needles in legs upon laying down
Raised red patches on calf’s and forearms after warm water contact
*Lack of blood flow to extremities
*Pins and needles if I sit down over 10mins
*Lower back pain (old injury)
*Pain between shoulder blades (old injury)
*Left knee pain
*Shoulder pains
Intermittent loss of strength in arms
*Calf pain (both sides)
*Ankle pain (both sides)
One sided temporal pain
As well as my ankles, toes, wrists, shoulders and hips all click as I move
Now while some of these have yet to be explained, I will often only speak to doctors of symptoms which happen in conjunction with each other, as many of these likely have nothing to do with each other.
Any symptoms that happen separately from all others are mentioned to every doctor as these could be related to anything or nothing.
I try to separate symptoms that happen more regularly as well, from the less frequent ones.
I have thus far been diagnosed with raynauds syndrome, scleroderma, silent migraines and a love of dangerous sports.
I have been checked for just about everything any of my doctors/specialists can think of, often what is found is my symptoms don’t line up with my test results and thus we start the cycle again or alternatively, I am called a liar and find a new doctor... it’s been 7yrs since this started and I am only 21.
My main point here is that, while you may feel like doctors aren’t understanding or taking you seriously, they are trying their best and it may just not be the doctor for you (even a bad doctor is just trying to help in their own way, though I do understand there are a few shitty doctors out there taking advantage of people, they are generally few and far between), or perhaps they simply want to rule out something more common before checking for the things you are asking about. Something any good doctor should explain to you before doing.
In my experience most don’t explain anything, which is terrible practise and Should be fixed immediately as it often leaves patients feeling as if nothing is being done to help them and doctors are just trying to steal their money.
I just wanted to put my two cents in, that in my personal point of view (And I don’t expect to be changing minds with this), a vast majority of doctors are simply trying to help, whether they seem like it or not, and is something to keep in mind when you may not understand why a doctor is doing something.
if you feel comfortable enough to do so, ask, and don’t be afraid to get pushy if they avoid the question, even the nurses at the front desk might be able to give you some insight into the purpose of certain tests.
@goldenrascal, welcome to Connect. That was an insightful introduction to the Connect community and participants of the ANA discussion. Also, great points on remaining patient with doctors, even if it feels like they are not listening or passing you off. I have experienced that in my lifetime with my rare disease as well.
@goldenrascal, while we wait for others to share their experience and comment on your experience with your medical journey, I have to ask, what dangerous sports are you in love with?
Hello @annedodrill44
In a previous post, you mentioned having an appointment with a rheumatologist. I was wondering how that appointment went and if you were able to get more information about the ANA of 1.1280.
As you are comfortable doing so, will you post an update?