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.

Profile picture for John, Volunteer Mentor @johnbishop

Hello @carpe_bean, I'm sorry you are not able to get to the bottom of what's causing your health problem. You certainly have been through a lot. I'm not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

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Hi @peach414144, I guess I've been living under a rock but I had no idea turmeric is such a popular spice. I'm not sure I've ever even had it, or at least I couldn't tell you what it tastes or looks like. We live in Germany, so sometimes it takes some serious hunting to find stuff, but we'll enlist friends to help. Thanks!

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @carpe_bean, I'm sorry you are not able to get to the bottom of what's causing your health problem. You certainly have been through a lot. I'm not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

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@johnbishop Ooo, so that's where to find it. Thanks!

Wow, congratulations on 53 years! That's incredible.

My husband and I celebrate 20 years next month. Well, 20 years of being together since we didn't get married until 9 years ago. He always says that all our years together feel like five minutes.....underwater. SUCH a comedian. Your wife sounds like a hoot. A sense of humor is definitely one of the keys to a happy marriage.

I'll let you know when I find turmeric. 🙂

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @carpe_bean, I'm sorry you are not able to get to the bottom of what's causing your health problem. You certainly have been through a lot. I'm not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

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@carpe=bean dear carpe bean, this is peach. many supermarkets now carry tumeric such as Publix in florida. and i suppose other markets in many states, it is now a very popular spice used (as you know) for many things. good luck.

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@carpe_bean it is interesting that your Rheumatologist ruled out autoimmune rheumatic disease, and I hope you can find some assistance on the Autoimmune Hep forum. I had nothing to add to the discussion above, but am so glad you posted your question, and that members and the Mentors have added some very helpful resources for us all; I have learned a lot. I hope you feel better soon, and can receive appropriate and timely treatment.

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @carpe_bean, I'm sorry you are not able to get to the bottom of what's causing your health problem. You certainly have been through a lot. I'm not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

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@carpe_bean Do you have any Asian grocery stores or Health Food stores nearby? I would think you can get the turmeric powder there. My wife and I have been married going on 53 years. Fortunate for me she has excellent health but one never knows. I heard her and her twin sister talking about her husband and him being sometimes cranky. She was telling him about his Dad being in a nursing home while his Mom was still living on her own at home. She told him - "see, that's what happens to crabby old men. They get to go to the nursing home."

Good luck with finding where to get some turmeric.

John

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @carpe_bean, I'm sorry you are not able to get to the bottom of what's causing your health problem. You certainly have been through a lot. I'm not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

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@johnbishop Haha, John! You really made me laugh! I know my husband could relate to "how high dear." That's probably a good sign though. I'm guessing you've been married for a long time? Not many other relationships are as challenging or as rewarding!

I forgot to ask you that, about how the turmeric tastes. Bummer to hear it's not so good. I have an insanely good recipe too for "Power Puddin'", which is just a mixture of chia seeds, matcha powder, and almond milk. Then I pile on lots of blueberries and nectarine. Maybe I could hide the taste of the turmeric in there.

Thanks for the link! I'll check it out. Then I just have to find turmeric here in Germany...

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @carpe_bean, I'm sorry you are not able to get to the bottom of what's causing your health problem. You certainly have been through a lot. I'm not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

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@carpe_bean, You made me smile with your "classic women" comment. On the other hand men probably fall into their own classic man mode by not reading between the words. My answer to those type questions from my wife are "yes, dear" or "how high dear" (do you want me to jump!).

I did my second go around of adding organic turmeric powder (1 tsp) to my coffee this morning and remembered why I stopped after the last time I tried it. Doesn't taste too bad when you first mix it in but you best drink the coffee fast. It doesn't mix/dissolve in the coffee so after awhile it settles and you really get the taste. I had also tried it in my breakfast smoothie when I first started and it made it taste funny (not too bad though) so I may go back to using it in the smoothie. There are a lot of links that describe the benefits - here's one that I found that does a good job: https://www.organicfacts.net/health-benefits/herbs-and-spices/turmeric.html

John

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @carpe_bean, I'm sorry you are not able to get to the bottom of what's causing your health problem. You certainly have been through a lot. I'm not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

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@johnbishop Hmmm, well I guess it makes sense that they don't know what makes it come out of remission. Seems like there's just so much that isn't known about many of the ADs. So much more than 50 years ago, though, so that's a plus. When I was telling a doctor recently about my grandma dying for kidney complications from lupus when she was just 39, he was pretty taken aback. Here's to living in the age of modern medicine!

I just saw another post on here about turmeric for liver issues. Since I'm not actually sure what's wrong, I've been hesitant to try supplements or medication for fear of making it worse. But I have a couple good links to read up about it and see if there are any contraindications for use. I really don't have any active signs of inflammation, which I think is partially what's confounding doctors, but if it can't hurt, I'm willing to give it a try. Although I cut out coffee awhile ago since it hasn't tasted "right" for months. So SAD! I've always been a coffee fiend.

I'm glad to hear you take your wife to appts. It was so hard for me to ask my husband at first - still is but it's gotten easier. He's doing a post doc so he pretty much lives at work. He'll prioritize me any day over work if I just tell him what I need from him, but it's so easy to fall into the classic "woman expects man to read her man and just do what she wants without having to say it" pattern. 🙂

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @carpe_bean, I'm sorry you are not able to get to the bottom of what's causing your health problem. You certainly have been through a lot. I'm not sure why the doctors do not take you seriously when you give them a list of the symptoms you are having. Are you currently taking any specific medications or drugs? and/or have been taking them for a long time?

Also, it might be worthwhile just to run some of your symptoms through the Mayo Clinic Symptom Checker website just to see if it may confirm anything for you. Here is the site if you want to try it: http://www.mayoclinic.org/symptom-checker/select-symptom/itt-20009075

John

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Thanks Carrie! (@carpe_bean), I don't think the rheumatologist or any other doctor really knows why PMR goes into remission or comes out of it again. I wished I knew or could find out. That is indeed the $64,000 question. I going to start taking some tumeric powder with my coffee in the morning and with some tea at night to see if it helps at all. I do take a tumeric pill daily but I'm not sure it's helping so far.

I was switched from lisinopril which is an ACE inhibitor to spironolactone which is a diuretic for my blood pressure after the heart study I was in at Mayo years ago determine the high blood pressure was more related to hypertension than whatever they thought it was before (not really sure). I'm guessing thought and I have zero medical knowledge, training or background.

I think that is a great idea to take you husband with you to the appointments. It can really be hard to focus and remember what they are telling you and a second person is always helpful. My wife does come with me on anything major.

John

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Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

Welcome to Connect @carpe_bean,

I found this study about the predictive value of antinuclear antibodies (ANA), and thought you might wish to read it:
http://www.sciencedirect.com/science/article/pii/S2211283913000178
I'd also encourage you to view this Mayo Clinic page about ANA results: http://www.mayoclinic.org/tests-procedures/ana-test/details/results/rsc-20344732

Fellow Connect members @hchristopher @lisabeans @taterjoy @brie87144 @jewel8888 @steeldove have all experienced the frustration of not getting a clear diagnosis, and I'm certain they will return with more insight.

@carpe_bean, may I ask if any of your family members have autoimmune disease?

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Hi @kanaazpereira and thank you,

I can't believe you shared the Science Direct link above. I JUST read this article a couple of weeks ago. It's fantastic! I had read so many articles about ANAs before I found this, too, and none of them really included specifics about high ANAs. Most articles just casually mention that viruses and bacterial infections can cause "elevated ANAs" without going into more detail. According to the article, it sounds like I'm more likely to end up eventually being diagnosed with an autoimmune disease, simply based on statistics.

As far as I know, only two family members had/have autoimmune diseases. My maternal grandmother died of SLE with complications from nephritis when she was 39, my age. And I have a paternal first cousin with RA. My mom was adopted so I have very little family medical history for her side of the family beyond my grandmother.
Interestingly enough, I just had an appt with a rheumatologist this week and she said she's sure I DON'T have any rheumatic autoimmune diseases. She suspects autoimmune hepatitis strictly based on my ANAs and chronically elevated liver enzymes - GgT, ALT, and AST have been high since I got sick in January. She recommended I see a gastroenterologist. Apparently rheumatologists don't treat all autoimmune diseases? Gastroenterologists are booked out three months here, so I guess for now, it's back to the waiting game. In the meantime, I plan to head over to find a forum for Connect members with autoimmune hepatitis and follow their thread.

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