changes in blood test results (fluctuating ANA, nucleolar pattern)?

[LilliaT]

I switched primary care practices recently, after my old doctor moved way downtown, and a NP at the new practice ran some new blood tests.  This is the third time since October that I've had ANA tested.  In October 2015, it was positive (1:80, nucleolar).  In May 2016, it was negative.  And now it is positive again (1:80, nucleolar).

She also ran a MTHFR test (which always looks like an abbreviation for a curse word to me) because a prior blood test had shown high B12 levels.  The results state that I am "heterozygous for the MTFR C677T gene mutation."  The NP said that this might explain my high B12 levels -- that B12 from my multivitamins was accumulating in my blood rather than being processed. 

The only other abnormal result was that my "zinc, serum" levels are low.

I understand that ANA levels can fluctuate, but I still got my hopes up when my ANA tested negative a couple of months ago.  So I'm sad about the new results.  But I also wanted to ask if anyone knows the significance of the "nucleolar" pattern.  I've seen online that this pattern is often associated with scleroderma -- which I obviously hope I don't have.  (No one has suggested this to me as a possible diagnosis, but  I do see that dry eyes and dry mouth -- which are my primary complaints right now -- can be an issue in scleroderma.)  So, after a period of relative calm, I'm back to a heightened state of anxiety and worry.

[irish]

I know it is hard not to worry, but I am here to tell you that worry will not help. It is almost impossible to predict what tests will be positive and then if they are positive there is no way to predict just how severe our symptoms will be.

Your positive ANA at 1:80 is quite low on the scale. The speckled can be searched on line. I used to know what it meant but have forgotten. Those of us who became ill many years ago did not have the privilege of having all these blood tests available. We just knew we were ill and it took years for us to find out what. Combination of finding a good doc and having more medical information and tests available.

Don't let a blood test rule your life. If they are negative you are feeling ill and your just keep on doing the best you can each day. If the test is positive you still do the best you can each day. We each are doled out "stuff" that affects our lives in positive or negative ways and it is up to us to adjust and follow the course. When we take a deep breath and accept what we are given we are much more apt to do better. Acceptance reduces so much stress and that in itself helps to keep the autoimmune disease more in control.

Feeling sorry for ourselves doesn't help us at all. I always say that we are allowed to feel sorry for ourselves but it pays to set aside days when we grab our blankey and hunker down and moan and cry and watch TV all day. It helps to have a day now and then and acknowledge that we do feel like crap(my new word) and then feel a little better from resting and hanging out. The other thing we can do is to make sure that we are getting the right medical treatment that controls our aches and pains, depression and other problems. With the right medical treatment we are able to have a better quality of life.

These diseases give us ups and downs whether they are seronegative or seropositive (blood testing) and we can waste a lot of energy worrying over stuff that we have no control over. Stay calm and do not panic. Panic can raise a lot of havoc on our bodies. The best thing we can do is to maintain a good rest schedule and plan our worth around our health status so we don't get ourself so run down. We have to pick and choose the things we want to do and keep our life as stress free as possible. Over commitment is one of the things that really puts a lot of stress on our bodies.

Just some input from a 73 year lady who got ill at age 21 or so and didn't get diagnosed until age 60 with Sjogrens. I now have 5 autoimmune diseases and 2 immune deficiencies but managed to marry, raise 3 boys, work as an RN, have a garden and many other things. I did not have much social life but I didn't care cause I was too tired. You will endure cause people with chonic illness seem to learn to do that.Good luck. Irish

[gurs]

My labs always change..when I feel my worst, my ANA levels are lower? also, my doctor switched labs, and they are all different now? Our testing is horrible for autoimmune. Another thing that medication and or supplements can interfere with lab results.
I guess our levels etc can also change at anytime as well. very hard for the doctors to diagnose things.

Gursie

[Navigator]

Ahh I think speckled is connected with SJS.  The other nucleolar I am not sure. You need to directly ask your doctor what the nucleolar designation means.  That being said the most important thing is to learn to live with the diagnosis. Yes we have autoimmune disorders. I have a theory about that as a non scientist ....from all that I have read our bodies evolved to survive in the miasma of a biological world that has multitudes of viruses, bacteria and parasites that all want what they want...ie survival and reproduction.   Our bodies may be primed to react strongly to these entities and yet in today?s modern world we have eliminated many of these pathogens. So our immune system is primed and is not stimulated by the pathogens...so it overreacts and attacks self.

[LilliaT]

Thank you for all these replies.  Irish, I especially appreciate what you wrote, because I've had a lot of trouble moving out of the anxiety stage and into the acceptance stage.  I'm working hard to try to respond to things in a more mature way, and to focus on the things I can actually control (and also on all the things in my life that are good).

I got the results of my lip biopsy yesterday, and it was negative.  So, I have a negative lip biopsy; am negative for the SSA and SSB antibodies; but have a slightly positive ANA.  I spoke by phone with the rheumatologist, who said that (given the negative lip biopsy) the positive ANA would just be something she'd monitor once a year or so.  She did not think I require any treatment right now, and suggested just OTC products (such as Xylimelts, which I'm already using) for the dry mouth.