Low C3 and C4

[BlackInk]

Hello, I haven't been diagnosed with Lupus, but it's one of the things I've wondered about following years of symptoms, many matching the diagnostic criteria for Lupus. My GP was unwilling to refer me so I paid for a one-off private rheumatology appointment. She ran a series of blood tests on the NHS for me and informed me that results were normal. On looking at the images she sent me however C4 is marked low at 0.12 and C3 borderline low at 0.8. I can't go back to her without paying, which I can't afford to do. I've had a positive ANA result in the past (but also a negative result more recently) but all other relevant results have come back within normal range. My long-winded question is... is the low C4 indicative of anything in itself? I'm confused as to why it's been disregarded when all my symptoms point to something autoimmune. Thanks for 'listening'

[daffodill2]

You should keep on to your doctor ,I was Going back to the doctor for a long time before being diagnosed with lupus at first I had under active thyroid they said that was why I felt unwell all the time but I kept going back and eventually my blood result showed I had lupus, Take care

[Tiggywoos]

Hi Blackink , thank you for posting 🙂

Exactly same thing happened to me ... also have slightly low C3 and 4 . I’ve made an appointment to try another rheumy in March but nearly cancelled it today .. not sure I can deal with being told nothing wrong .

Easy for me to say but you’ve used your hard earned money for that appointment so I’d ask her to explain the low results . Take care let us know how you get on xx

[BlackInk in reply to Tiggywoos]

It's soul destroying isn't it! The rheumatologist just said that the lowish C3 and C4 are not significant. She did say I could ask GP to repeat the tests in a few months, but I don't fancy my chances!

[Tiggywoos in reply to BlackInk]

So soul destroying .. cried buckets in frustration and self pity ! Yes dermatologist said similar to me .. repeat and see what evolves .. did repeat and just the complements again ... you never know someone on here might have an insight xx

[DJK99]

Hey there - well I am the hypercomplementemia Queen! My rheumy is obsessed with it... How were your neutrophils too? Low C3 and C4 are indicative of lupus - or a ton of other things apparently, rheumy said... Google low c3 and c4 and it will always come up as lupus - although I did find this the other night pubmed.ncbi.nlm.nih.gov/112... but my C1q is normal so that's been booted out... although rheumy says, yep that would fit with my symptoms. You only need one positive ANA - so I have read... but there are tons of expert patients on here that will help. Also Lupus Uk will help... give them a call... don't be shy.. they are there to help us. I would definitely ask your gp to make the referral again......... and if not... keep taking photos and lists of symptoms until it all becomes apparent that they need to! Big hug (been there for years previously, believe me!) xx

[BonnyB in reply to DJK99]

Sorry to jump on here. Can I ask why you are asking about neutrophils please and if low neutrophils are present with lupus. Thanks x

[DJK99 in reply to BonnyB]

Hey BonnyB -

well my rheumy has always said they are part of the markers, yes. He now calls my levels "autoimmune neutropenia" as have always had it, since decades back, way before starting methotrexate which can also bring the levels down. If you look at the latest(?) guidelines for classification they can be part of the deal I think (use your "find" option and search for "leukopenia" (same thing):

Classifying and diagnosing systemic lupus erythematosus in the 21st century

academic.oup.com/rheumatolo...

Also there are tons of articles on neutropenia linked to lupus on the web, just put in "lupus neutropenia" and you'll have loads to choose from. I found this just now:

Systemic lupus erythematosus and neutropaenia: a hallmark of haematological manifestations

pubmed.ncbi.nlm.nih.gov/326...

Leukopenia: Lupus Flare, Medication Effect or Infection?

consultqd.clevelandclinic.o...

Take care x

[BonnyB in reply to DJK99]

Thanks for this. I had low neutrophil count years ago too. Still have it now but had no idea was part of all this.

Don't think they're low low if you know what I mean but all happened together- shingles- pleurisy- low neutrophils, needed folate etc. I've never been right since.

Thanks again x

[DJK99 in reply to BonnyB]

Well they take it along with all the other symptoms etc - I'm 1.4 neutrophils currently... or maybe lower due to my weird hands and feet thang got going on... who knows. My lowest was 1.0 and that was due to some nasty meds I had to go on (which I had to stop because of it's "potentiating effect on the methotrexate"). Keep asking for another blood test if you start to feel rougher... FBC will split it out, as I'm very sure you know! x

[DJK99]

Ah yes, that was the one I sent to someone yesterday I think - it's the first one that comes up when you type in low complement 3 and 4... Tons of explanations... and I know Lupus UK chanpreet has written the low c3 along with c4 signifies lupus... but presume she meant with some other positive tests too?

[KayHimm]

Blacklnk -

One important thing to know is what the rheumatologist found on exam. Did you get a letter with their impression?

Can you call to get an explanation for the C3 and C4? You paid for the consultation and are owed an explanation.

What are the symptoms? Chances are many of us will recognize them and tell you what doctors have told us.

Here and listening..

K

[miccika1]

I think it depends on what your symptoms are. Labs on its own especially if borderline dont mean much, but always be combined w your symptoms which are for autoimmune diseases the most important for diagnosis. You can even have negative ANA and still be diagnosed w lupus if you have symptoms. Hope you find a doctor to get to the bottom of whatever you have and find some therapy

[JennaShi]

I think they mean something and also hope you can get a further explanation from her. I know that it can be frustrating when you feel like you have been brushed off, I’ve had a few of those myself. I’m glad you’re keeping track of your lab reports. I have found that my ANAs fluctuate also. Please don’t be too discouraged. Have you written a list of your symptoms and or taken pictures of any changes/ symptoms you’re having? I’m not sure if you’re in the same boat. This helped alot and the third rheumatologist I visited got it. I learned so much from others here and from the other two rheumy visits (even though it was frustrating and hurtful to be brushed off or not even seen) and was able to get a grasp on what I had that they were looking for. 💜

[Naladog]

Good morning everyone,

Here is a very good article that I gave to the vasculitis and immunology team at Addenbrooke's' Hospital in case it could help you: selfhacked.com/blog/complem...

The same thing happens to me, I have had low levels of complement C4( 0.07) for years and I am on hydroxychloroquine. All the rheumatologists and internists I have contacted consider that what I have is within the spectrum of lupus and the good news is that they think it will be mild.

My symptoms periodically are fatigue, occasional mouth ulcers, low-grade fever, malar rash, arm numbness, migraines with aura, Raynaud's, IBS, finger joint pain, photosensitivity, swollen neck nodes, livedo reticularis, various lymphopenia, anemias, low vitamin D, abdominal pain and a thrombocytopenia. I have recently started with a thickening and hardening of the skin on my face in the chin and upper neck area. The dermatologist at the hospital has cancelled my appointment due to the pandemic and they indicate that they cannot help me unless I go to the clinic even though my GP has sought advice from other sources.

I take vitamin D3+K2, vitamin B, iron during my menstruation; and the truth is that since then my blood tests I think they are much better.

I did also a genetic test and the results show high genetic predisposition for systemic lupus so I am sure there is something there. I think there is still a lot more research needed on this topic.

Lots of encouragement to all of you and don't give up, keep on investigating, asking questions and trying to get your health problems properly treated.

Best regards.

Mónica.

[BlackInk]

Thanks so much everyone for all your advice and kind words.

[BlackInk]

My symptoms are numerous, mostly manageable in themselves, but all together really having an impact...

Joint pain and stiffness in hands, back, jaw, feet, shoulders (confirmed arthritis in fingers)

Skin reaction to strong sunlight, generally dry, itchy skin, occasional raised rash under eyes

Skin reaction to minor cuts and scratches

Nausea, abdominal pain and discomfort (bowels fine)

Hiatus hernia

Exhaustion and trouble thinking/concentrating

Headaches, head pressure, blurred vision

Early menopause

Muscle/nerve twitching...

I could go on!

Strong family history of autoimmune disease.

Positive (then negative) ANA, low C4, low iron and B12, on/off low platelets, low morning cortisol, low haematocrits.

Everything that comes back abnormal my GP just dismisses because 'it's only just below range' or 'it wouldn't cause symptoms'. I don't know why they have ranges if it doesn't mean anything!!

[Boudica1 in reply to BlackInk]

Hi Black ink, I too have blood test results that are often below or above their normal range and am repeatedly told that they are still classed as normal. I've wondered what is the point of this "normal range" and then ignore those that come back from the labs marked high or low. My C3&C4 are both low and the ANA up and down with a dsDNA hemogenous sorry can't remember the spelling. They rerun c3&C4 and the ANA tests every year and yet they tell me I have seronegative Sjogren's. Yet the Dermatologist consultant gets very excited about all the different types of skin oddities that show themselves.I've no idea who my rheumatologist is now as the one that I was seeing who specialises in Lupus moved to the Queen Elizabeth hospital in Birmingham and the last I heard from our rheumatology department was last March when they sent the video email for their own criteria for Shielding.

Hope you get the answers you need as it's not nice being left floating around in no man's land.

Take care.

♥️

[Hoofprints]

Hi Blacklnk,

Please persist with your doctors. I have low neutrophils, low C3 & C4, which I queried with immunology for years and was told repeatedly it wasn't significant until a rheumatologist tested me for anti-C1q antibodies. I was strongly positive and diagnosed subsequently with urticarial vasculitis syndrome, a rare form of vasculitis and a lupus-like condition. I've now started on hydroxychloriquine - it's early days, but at least I'm on treatment and have a diagnosis.

Have most of all the symptoms you list -and some! Was told I had M.E. and fibromyalgia for years, but felt there was more to it as just progressively sickening.

My anti-C1q antibody levels are normal on last check, but symptoms are not. Like others have written time again in this site, doctors rely too much on blood tests rather than clinical signs and symptoms, so please keep pushing and get retested if you can, including for the anti-C1q antibody. Doctors often overlook testing for this one.

I tested positive for rheumatoid factors too, but only once - even then the doctors dismissed those results, and I agree that you probably only need to test positive once. Trouble is catching it when the levels are detectable.

Please don't give up. I was on my knees trying to get help and when I thought all hope had gone of 'proving' just how physically ill I genuinely am, my test proved positive. It took years for me, but not for everyone else. Keep pushing- you will get answers and hopefully the right help. Good luck 🍀

[puary]

There are other tests you can ask for that helps with a clearer diagnosis for lupus and other connective tissue/autoimmune diseases in the following list -

- ENA

- anti-dsDNA antibodies

- rheumatoid factor

- ds DNA antibodies confirmation (this test is accurately diagnose lupus and risks of nephritis)

- Crithidia DNA IFL

- Hep2 Anti Nuclear Antibody

- Intrins factor ab screen test

- UANCA

- Intrins factor ab screen test

- autoimmune profile

- Striated Muscle Antibody

- Cardiac Muscle Antibody

Although it sounds a lot at first, having a thorough investigation is well worth the wait eventually. Keeping a diary of symptoms is also helpful when referring to them during appointments.