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Immune complement c3 c4 level

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I'm wondering if anyone here has info/experience with very low c3 and c4 immune complement levels?


Dd has been struggling with new and different symptoms since July - they ran these two levels and both are close to zero. Lupus has come up in discussion - her ANA panel came back negative, but her direct bilirubin, albumin, urea, creatinine, ldh are all elevated which is new for her. Gluten panel also came back fine (checking for celiac).


ANY information is so appreciated! We are in a frantic bind trying to figure out what to do/where to go next...

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I could be wrong, since I haven't been up on my info in a few years, but we tested c3a and c4a complexes to rule out lyme and mold (a low result was good). We tracked DDs C3d levels for 2 yrs when we knoew she had some chronic infection but couldn't tell what that was. Tracking her C3d, which went from the 20s to the 50s to the 90s and then, with treatment, went back down into the normal range, allowed us to know that yes, she was reacting to something and yes, antibiotics were helping.


So in both cases, low C3 and C4 complexes were seen as a good thing - that nothing was stirring up the complement system. So not sure why low would be worrisome? The other things that are coming back elevated would seem to involve liver function, no? Have you also run ALT and AST liver panel?

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The wait list for rheumatologist is lengthy here, and from what I understand it will still be awhile - leading to further my frantic feeling :(.


What we've been told so far on the complement piece is that the pattern are what they are looking for. In some illnesses, some complements are up, others down - with both of hers being so low, it is showing that her classical pathway is being activated, and the proteins are being used up too fast. SLE, immune glomernephrtis (sp), are two examples of this particular pattern - ipboth being low indicate a "complex systemic immune disease". They had said that if her c4 was normal, that would indicate something else - something about the way different inflammation is managed by the human body. In RHeumatic arthritis, the inflammation is handled differently by the immune proteins, leading to different patterns?


It is times like these that I am so frustrated living in a rural area - family dr has been fantastic, but we limited in specialists and equipment that the times to access are long.


Her main set of symptoms now - behaviour (of course, that always flares up in these times), sleep issues, no weight gain on 3500 calorie diet (she's 5 and weighs 33 lbs), chest pain, joint pain, +++abdominal pain, tachycardia, palpitations, cyanosis episodes (no loss of consciousness). Her heart is fine on EKG and echo. Just submitted results on a take home monitor to rule out electric issues (not likely as she doesn't lose consciousness)


The blood test results:

High - Urea, creatinine, LDH, direct bilirubin, albumin

Low - Calcium (corrected), rbc, hgb, hct, mpv, c3, c4

Normal - WBC (barely, close to low cutoff), mcv, mch, mchc, rdw, plt, sodium, potassium, chloride, total co2, ggt, alt (sgpt), alk phos, total bilirubin, total protein, calcium, phosphate, uric acid, magnesium, eGFR


Any thoughts?

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I don't know if this could have anything to do with her problems, but we have a PANDAS/PANS daughter with an eating disorder. There have been many times over the years we were "sure" she was eating lots of calories and not gaining, only to find she was hiding food, purging, or diluting her drinks. She also exercises obsessively and burns it off. She used to exercise most of the night, and was unable to sleep. I have no idea if that is going on in your case, as your daughter is a lot younger, but thought I'd just pass that along. We were baffled and didn't understand what was going on. She is the sweetest kid in the world, but the OCD/ED intrusive thoughts cause her such extreme anxiety that she feels she "has to". Sadly, then they have to live with the guilt feelings.


Also wondered about your daughter's thyroid, if that has been checked.


I so hope you are able to find some help for her. It's so hard watching our kids suffer.

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