So, the problem with firm answers to your questions are that everybody’s positive lupus indicators are different. Some have more symptomatic indicators and are fortunate to have doctors who believe them rather than being a stickler for labs that are known to fluctuate. Many good doctors operate under once-positive always-positive for certain key, specific tests like anti-dsDNA and anti-Smith antibodies. If either of those is positive and you have several of the ACR list of symptoms, it is lupus even without a positive ANA that is normally (and stupidly) used as the gateway test (it’s known to be fickle and positive for a variety of other reasons aside from lupus, but it makes sense to look at along WITH a full panel!) Really, though, all your labs can look totally normal at a snapshot point and you still have lupus. Any decent rheumatologist knows it may take years of continued tracking, and ruling it out by one round of negative tests (without a CLEAR way ALL symptoms are explained by other valid diagnoses) is not only foolish but bad medicine!
That said, here is the run down of key ones off the top of my head, listing what values may INDICATE lupus to varying degrees (though are not all needed to make it true!):
Very specific to lupus (if these are positive and he tries to doubt lupus, get a new doctor entirely!):
Positive for anti-dsDNA
Positive for anti-Smith
Less specific but common in lupus:
Positive ANA (where different patterns may help indicate different autoimmune conditions that all can cause these)
LOW levels of Complement (C3 and C4, more likely to be true during high disease activity)
LOW platelets, RBCs or WBCs (blood counts)
SLOW Sed Rate (ESR), which means a HIGH number (the number is time, slow rate takes a longer time)
Indicate related autoimmune conditions (positive means indicative for that disease but also maybe part of lupus):
Anti-SSA/SSB–sjogrens
Anti-Histone–drug-induced form of lupus
Rheumatoid Factor (RF)–RA
C-reactive protein (CRP)–myosotis/dermatomyositis
Anti-phospholipid antibodies (cardiolopin IGA, IGG and IGM)–anti-phospholipid syndrome (often a part of lupus, usually not stand-alone)
Anti-Thyroid antibodies–autoimmune thyroid disease
A good doctor cares about keeping mildly-ill patients as WELL as POSSIBLE, so a doctor who wants to send you packing due to not-big-enough problems is being negligent. Unfortunately, the standard for medical action is not whether you feel bad or unlike your usual self, but whether it impairs your ability to WORK (after all, we are no more than our productivity in a capitalistic model… Bad enough in the US, but I’m not surprised if that benchmark is even stronger in nations where the disabled ARE actually helped by the government, because they don’t want to spend money!) Again, a good doc will try to keep you healthy and get that work score improved, while only a slightly evil/corrupt/plain mistrusting doctor will minimize your complaints to make you ineligible for such support. Some will think you’re over-worried about small symptoms, but anxiety itself can be from lupus!
Be clear about symptoms/level of impairment, not only because they can diagnose lupus, but need to be addressed somehow even if not as lupus. If clues point to lupus vs. mystery, lupus is probably it. If the clues point to something other than lupus, and that covers all symptoms, it’s probably not lupus and is THE OTHER THING, not just nothing. If the clues are vague and maybe due to vitamin levels, that should get resolved first to see if it helps (lupus drugs themselves are quite nasty), but if not, RE-CHECK for lupus.
Since this rheumatologist was hard to get in with, before you leave ASK HOW you will get re-checked when symptoms flare up (impt to go WHEN active so you catch it!) which can probably be ordered by your primary under the rheumatologist’s guidance on what to test when, then follow up with the specialist in case of certain pre-discussed results, etc.
Good luck!