I went to a doctor because I was concerned about diabetes. As an aside, I mentioned that my finger, toes and shoulder joints hurt, as well as what seems to be the muscles in my upper back and arms. I am also tired a lot. He ran an ANA test which came back positive with a titer of 1:640. He didn't say what this meant, but looking on the internet myself alarmed me. He said that I could return to him in three weeks to repeat the test, or go sooner to a rheumotologist, who would repeat the test and maybe do more tests.

Has anyone else had such a high titer?
Is it necessarily lupus?
Any tips on how to deal with the stress of waiting for doctor appointments and test results?
Would you wait three weeks or rush to the rheumotologist now?

In a panic,

Daisy

Hi & welcome. Positive ANA does not necessarily mean you have lupus. It is also positive in a number of autoimmune conditions, e.g., rheumatoid arthritis, Sjogren's syndrome, polymyositis, scleroderma, Hashimoto's thyroiditis, Addison's, ETC. *And* it may also elevate *without* an autoimmune condition, e.g., due to a passing virus or to a family tendency. So it's really only a "threshhold test" that suggests more tests & careful review...

In his helpful hardcover for lupus patients (in most libraries & bookstores), Dr. Daniel Wallace says he considers 1:1280 "high". But since titer tests are notoriously hard to perform with high accuracy, especially when done by non-rheumatology labs, maybe you should view your result as suggesting you see a specialist, instead of focusing on the actual number just yet.

Also, a rheumatologist runs additional *more specialized* bloodwork, to check for elevation of specific autoantibodies, depressed complement levels, etc. Since quite a few of these can fluctuate (from what I've read) with flares, that's another reason to see a rheumie soon.

Please don't panic yet! Admittedly, it's hard not to worry. But based on one "fuzzy" lab result (ANA is really sort of "fuzzy") , you can't know yet that you have any ongoing condition, or what it is if there really is something going on. And even when there IS, sadly it can take quite awhile to determine that, especially in milder cases of these conditions. So hang in there, OK? Also, I hope you keep posting here: we'll be good company for you! Post more when you can. With my best wishes, sincerely, Vee