Hello there. I saw an RA last week, to address my positive ANA tests as well as indeterminate dsDna and anti Rnp of 1.5.
She felt that at this time--I do not have active lupus. That the hair shedding I am experiencing is related to something else, since there is no inflammation showing up in my blood tests. However, my WBC is low as well as my neutrophils. Was sent to a hematologist and am scheduled to get a bone marrow biopsy next month. They are saying that the WBC issues could be related to positive ANA--BUT if I don't have active lupus, then why the blood issues? I guess this is why they want to do the biopsy--as my blood symptoms can also be symptoms of leukemia or lymphoma. Scary times indeed... : (
One thing in particular that is bothering me..(among many) is that on my ANA tests, there is no titer number or pattern. My RA told me that this is an "old" way of testing...but everything I read about ANA testings, there seems to be a titer number attached. Is this odd that there is no level? Doesn't the titer/pattern tell a story of sorts? I kind of feel like...shouldn't she be digging a little deeper? Or am I over thinking it?
I'm considering asking her to retest and ask for the titer/level. Are my levels high? Low? What is the pattern? Since I am Google/Internet obsessed at the moment, I would really like to have this info.
Sorry if this is all over the place, hope it makes sense. Thanks for reading...
Your hematologist should be able to test for this I have both lupus and hemolytic anemia- they can flare together or independantly So I can have blood problems with or without my lupus flaring and also independant of my ANA or other inflammatory tests being positive Can be very complex ask your hematologist to explain
My hematologist and RA seem to both just concentrate on their on specialty. If I ask about the ANA, I am told to talk to my RA and vice versa. So I am thinking of following up with another RA, just to see if they are a bit less "textbook"...if that makes sense? I know AI issues are hard to pin down sometimes, and that they are very sneaky. I guess I just want to dig a little deeper to make sure we know everything that is going on inside me...and at the very least find out what my titer is! : )
Hi Ginger,
I was told by a lab that if the ANA is negative, no further tests are run on it at the lab. There would be no titer/pattern tested. If it is positive, then it is sent on to get a titer and pattern.
What may have happened (this happened to me once) is that you received a print out of your test results too soon. My result only said ANA positive. I went back to lab to ask why and they said the results weren’t complete yet. Two days later I went to get print-out again and this time the titer and pattern were there.
Maybe your situation?
Sonja
I thought something like this happened also. However, I called the lab itself and was told that the titer/level was not requested from the doctor--just the positive/negative. Then I asked my doctor and was told that testing for a titer number is "old" testing procedure, which really makes no sense at all to me. Most everyone I read about or talk to who has a positive ANA has a level, be it low, high, etc. So--for some reason my doctors just don't feel it is important. I've been tested twice over the past year, once by my primary and once by my rheumy. Neither of the tests had titer, only "positive" in the reference range..
I am going to ask my doctor to test me again, maybe later this month, and request she also gets a titer and pattern.
I speak as a lay person who has been studying this stuff. I'm very much calmer about all of this with the knowledge I have gained. "Knowledge is power." Anti depressants help me too.
All these so-called lab tests are contextual with other lab test results. One test alone determines nothing especially because they are mostly "general" for certain chemicals or cells in the blood. But, compared to each other, they can help the doc to make a specific diagnosis along with your symptoms.
The most important result about the ANA is whether it's positive or negative. Plus, other physiological processes can also cause a positive ANA. Go to Wikipedia and search antinuclear antibodies. Lots of info there. And, you can ask the doctor what the titer was, high or low?
Your doctor is thorough. If you WBCs are "irregular" wait for the results of your bone marrow biopsy.
When all my autoimmune symptoms began to scream, I too was given a bone marrow biopsy. It was negative. At the time they diagnosed fibromyalgia--all the other labs were under the radar at that time--16 years ago. Two years later my autoimmune blood tests were all over the map.
I can really empathize with you. This is all really nerve racking.
Has your hairdresser noticed your hair falling out excessively? that usually is most safest way to know for sure if it is more than normal. Also, if you are near age for menopause or having any kind of hormonal upset that can cause hair to thin radically!
This might save you some painful testing and i have 2nd test done before you do the bone marrow etc...rather make sure test was correct before subjecting yourself to torture.
Hi. I've changed hair dressers so much that I don't really have one that would know the difference, I don't think. I am 45--so definitely entering the "perimenopause" zone. I have had hormones tested and they have ranged from post menopausal ranges to low normal. So, we definitely have hormonal changes going on. I need to do follow up to find out how and if they play into the shedding hair.
The bone marrow testing is something that the hematologist gave me an option to do. Said we could just keep an eye on things--but it still would not give us any answers, and would always wonder/worry about why my blood counts are weird.
USAGURL: Thanks for the information, interesting to read how it all breaks down. I asked my doctor for the levels, she does not have them because she did not ask for them/test for them. I would think it would just show up on the results but according to the lab-doctor has to request the levels. Doctor states it is not important--just the negative/positive..