low c3c and c4c, what next?

[waif]

Hi All,

I recently went to a hematologist for hair loss, low ferritin and low tibc which points to "anemia of chronic disease." my tibc has been low for years and years, ever since i started testing it. I also had undiagnosed giardia for 1-2 years and I treated that with 2 rounds of tindamax and over the summer my stool sample came back negative. before giardia i had ibs-c and now i have ibs-d.

coincidentally or not, i have 24/7 paresthesias in both of my hands/arms from 2010 which i thought was caused by ehlers danlos syndrome and joint instability in my neck and shouldres, but tonight i received part of my labs back and i am freaking out.

I was not fasting during these tests, but they told me that wouldn't matter?

c3c 70 (90-100)
c4c 11 (16-47)
ch50 36 (31-60)

he also ordered the following tests...which i haven't received yet

cbc
cmp
ldh
fe
tibc
saturation
ferritin
folate
b12
retic
esr
crp
SIEP
ana with reflex
ra factor
ccp

my crp has been tested several times and it was always low, ra factor..twice i think, both negative.

on the plus side, i always knew having a very low tibc and low ferritin meant something bad/unusual...and i think i was right.

what tests should i order next? i'm overwhelmed. thanks for listening.

 

[Research 1st]

I'd not worry about abnormal tests until your doctor tells you what it means.

I haven't come accross your finding before, sorry, but I found this which might help?
What it Means When You Have Low C3 and C4 Complement Results
http://www.brighthub.com/science/medical/articles/75374.aspx

 

[Thinktank]

You need to wait for the rest of the results and your doctors medical opinion on it.
Your complements are low and that might indicate auto-immune disease. Did he only order ANA or also an ENA panel?

 

[Research 1st]

Looking at your test you're waiting results on:

*CMP is things like glucose, electrolytes, kidney/liver/thyroid function.
*CBC aka WBC/FBC is a full blood count, usually normal.
*LDH is usually elevated in severe patients but not to muscle 'disease' levels as the CK is usually normal
so elevated LDH and Aldolase (another muscle damage marker) in ME, is probably due to oxidative stress.

*I don't know what SIEP is? Do you mean IEP/SPEP.
Is it serum proten electrophoresis? If so, that's a cancer test.
I'd not worry about it, common test ordered.

*Retic. This is probably reticulocytes test. Ditto.

*FE is iron. Easily fixed if low.

*ESR/CRP in CFS is normally fine, as we don't have acute inflammation but a slow burning innate immune system stuck on, so no classical inflammation but the 'flu feeling' of cytokines/chemokines. Mine are always elevated so ones like (IL-2, IL-4, IL-6, IL-8, IL-10), (MIP-1a, MIP-1b, MCP1, MIF, NF-kappaB, COX-2), and growth factors like VEGF, TGF-b1, VIP.

Those are expensive and hard to get. For an alternative test to ESR,for inflammation I use an old one called 'Blood Viscosity' in me it's always abnormal. If I feel Flu like, with visible symptoms (raised glands, sore throat, sneezing), then I get a complete blood count done with a 'blood film' (they look at it under a microscope). For inflammation more associated to cardiac I'd get a HS-CRP. This is elevated in CFS research, not that high though. Just up. HS means high sensitivity. It's not the same as a CRP test.

Another inflammation test in CFS is Prostaglandin E2. (PGE2). If you want to go down the Lyme route, mine were all elevated, I'd do a D-Lactate and Ammonia. Note Ammonia will be falsely elevated unless you immediately spin the sample and freeze it.

Oxidative stress markers in CFS will be bonkers elevated the more severe you are. There are many tests. Careful using urine, as it's unstable in transit. I only use blood markers for Oxidative Stress. There are countless ones most which I can't spell!

*Ferritn/Folate/B12 if low are easily fixed if low.

*ANA with reflex/RA Factor/CCP is looking at autoimmunity with basic non specific tests. ANA can be raised in Lyme and CFS. RA Factor can also be episodically raised too.

 

[waif]

I have trouble googling things due to the neuropathy in my hands so this is incredibly helpful. THANK YOU. saves me some pain and i'm not as stressed seeing everything explained. i barely slept

edit: i just found this..it's useful:
https://www.southtees.nhs.uk/services/pathology/tests/complement-c3-c4/
C3 and C4 are measured at the same time since this gives an indication of the complement pathway (classical or alternative) which is being activated and thus the cause of this activation. C3 alone is often decreased in infectious disease (septicaemia, endocarditis), C3 and C4 are often both decreased in immune complex disease, C4 alone is characteristically decreased in angioedema, immune complex diseases particularly vasculitis and in cryoglobulinaemia and cold agglutinin disease.
and this
https://www.immunodeficiencysearch.com/classical-complement-deficiency

i probably typed siep wrong, it's IEP? like im guessing it's iga, igd..etc
i think if i have some kind of autoimmune disease those would be elevated

oops, i meant my hs-crp (not crp) was extremely low...BUT i haven't had it tested in years, before giardia, i kind of assumed low ferritin was associated with low hs-crp but this is probably completely false, lol.

ENA panel i absolutely need to get, kind of surprised because I don't think he ordered it.
blood film, he's a hematologist and extremely open to ordering tests.
my symptoms also match lyme so i'll research pge2. d-lactate and ammonia....my friend who's also extremely sick has chronically elevated levels of ammonia, so i might ask you guys about that later

my tibc (iron binding capacity) always tests low so i believe my body is hoarding iron due to whatever this is...

just if anyone's curious. these are the tests a rheumatologist ran in 2011. it's completely unprofessional. he didn't give me the ranges or anything, just circled mg (magnesium) as being too low, .5, and b12 being too high...i was heavily supplementing at the time so that makes sense. ssa/ssb is a 1 but he didn't circle it.

ALSO, in case anyone ever searches for giardia on here..

i had iga tested literally at the peak of my symptoms and it came back negative. i guess this is specific to people with celiac disease....

Tissue Transglutaminase IgA
0 unit/mL
Date:
Jul 29, 2016 03:50 p.m. EDT
Reference Range:
0-3

 

[waif]

thought i'd give an update,
i called my rheum asking for the official lab work back in 2011 and they would not give it to me
so for the heck of it, i called them again today asking for clarification, and they said sjogren's is negative...just reading off the same sheet. anyways, i was leaning towards sjogren's and now i'm not. i just need to wait for more results and sit tight.

 

[waif]

new labs! they aren't nearly as bad
i don't see igG or igE though? i'm concerned with parasites/bacteria/viral...

protein total 6.5 6.1-8.1
albumin 4.1 3.8-4.8
alpha 1 globulin .2 .2-.3
alpha 2 globulin .5 .5-.9
beta 1 globulin .3 .4-.6
beta 2 globulin .3 -.2-.5
gamma globulin 1.1 .8-1.7

^One or more serum protein fractions are outside the normal ranges.No abnormal proteinb and s are apparent.

immunofixation NO MONOCLONAL PROTEIN
DETECTED

IMMUNOGLOBULINS
igA 188 81-463
igG 1076 694-1618
igM 174 48-271

RETICULOCYTE COUNT, AUTOMATED 1.4%

RETICULOCYTE, ABSOLUTE
52780 20000-80000 cells/uL

RA Factor <14 <14=negative

CRP .3 <8.0

CYCLIC CITRULLINATED PEPTIDE (CCP) AB (IGG)
<16
ReferenceRange Negative: <20 WeakPositive: 20-39 ModeratePositive: 40-59 StrongPositive: >59

ANA negative