Hi Heather.
I feel bad for you.
Don't get discouraged because of the negative findings.
There a few possibilities, which would explain the discrepancy.
Your positive anti-DsDNA does not guarantee a diagnosis of lupus and it actually can fluctuate from positive to negative.
The numbers in ANA titres may sound high, if you're not familiar with what they represent.
The ANA testing starts at dilutions of 1:40 and get doubled each successive time to 1:80, 1:160 and so on until no antibodies can be detected any longer.
The last titre were they were detected is the one used by the lab as your ANA titre.
Rheumatologists will not consider them as positive unless they are 1:160 or higher for their diagnostic purposes. They are many healthy individuals who have ANA titres in the lower numbers, but as the titres go up, the number of healthy subjects goes down drastically.
If you want you can post the results with lab ranges and units of measure and I can look further into them.
Your undiagnosed condition comes in 4 different versions.
1st is how you perceive it, physically, mentally and emotionally.
2nd is how your doctor evaluates it.
3rd is how other people see it
4th is how it is REALLY affecting you physically, emotionally and mentally.
The last one is the most important!!!
My suggestions below deal with the 4th version.
I suggest you get hypothyroidism type 1 and 2 totally ruled out by getting Free T3, Free T4 and Reverse T3
thyroid tests.
Often low thyroid function is an underlying factor in A/I and other chronic conditions.
You should also rule out thyroid- related deficiencies, specially iron, ferritin, B12 methylocobalamin & methylfolate (MMA test is required for these 2), vitamin D, iodine, zinc, magnesium (tissue levels), selenium, etc.
Another test I would try to get is an Adrenal stress Profile with 4x cortisol testing and 2 averaged DHEA (saliva)
A holistic type of doctor would be best-suited to help you with these. Look for a reputable Functional Medicine or Naturopathic Doctor in your area.
Let me know if you need any further details, but please
post also your lab results.
Best wishes,
Niko
Heather, your story sounds like everyone else'. It takes years to get a diagnosis. Chances are your rheumatologist will not dismiss you because of your symptoms and the fact your immune markers are positive. What was your ANA and antidsDNA?