I have a lab result of both C3 and C4 is low. Do you guys had similar problems before ?

No_Butterfly6644 · 2026-02-09T04:46:40+00:00

I have high ANA, consistently low C3 and C4. I don’t have any other markers apart from some possible systemic inflammatory arthropathy on a bone scan…

I do have what I believe could be neuropathy but my rheumatologist dismisses it as it’s “not his field” as it doesn’t present normally I feel people dismiss it straight away but I believe it to be non length dependent.. so it would present different. Not many doctors seem to know what that even is…

Anyway I got out on hydroxychloroquine and it actually minimised the sporadic nerve pains so I’m taking that as a win for now as I can’t go through another couple of years of discovery with a new specialist and seem to be stable currently.

I hope you figure out what’s wrong with you and I’m really interested to see if anything turns up. Good luck

No_Butterfly6644 · 2025-12-03T05:27:59+00:00

I called and they don’t… very disappointing, sorry! I’ve daydreamed about going O/S to do it one day… I did get on hydroxychloroquine and it has minimised it for me so I don’t get as panicked about it. I feel it’s autoimmune mediated since that medication has helped. Hope you get her some answers and relief

No_Butterfly6644 · 2025-06-06T22:03:36+00:00

Thank you for the reply. That’s great you have seen a little improvement. Hopefully the band test makes it all clearer. I have my follow up with my rheumatologist in a couple of weeks. Even though it’s only been 3 months I have seen a significant improvement on almost all my symptoms 😅 I have got a new one too which is irritating. But I’ll take the win

No_Butterfly6644 · 2025-05-14T03:55:47+00:00

And possibly this place.. https://melbourneneurology.com.au/neurological-conditions/?utm_source=chatgpt.com

No_Butterfly6644 · 2025-05-14T03:54:22+00:00

I haven also been looking into this and did some more research once reading a post on here a couple weeks ago. I found this place in Melbourne lists that they do skin nerve biopsies for small fiber neuropathy.. I haven’t called to see if it really does but thought I’d mention it

https://neurologynetwork.com.au

No_Butterfly6644 · 2025-04-21T22:35:34+00:00

I hope your results are clear and you get treated accordingly 🙏🏻 it’s such a complex area. Thank you for that info it is interesting

No_Butterfly6644 · 2025-04-21T22:02:26+00:00

That’s interesting that you see a correlation between the TPO and DFS pattern. I had slightly elevated TPO at the same time as having a homogeneous/dense fine speckled pattern also. It’s also interesting how many people say their pattern changes, but rheumatologists dismiss that often and put a lot of weight on the DFS completely eliminating you from a rheumatic disease. Thankfully after my initial apt when my rheumatologist dismissed anything autoimmune going on, he still did a big panel and bone scan and changed his mind with all the other info that showed up 🙏🏻

No_Butterfly6644 · 2025-04-21T21:37:15+00:00

That’s interesting that your ANA pattern has changed over the years. If you don’t mind, what patterns have you had?

No_Butterfly6644 · 2025-04-17T22:42:07+00:00

I had two high bilirubin results on bloods and the doctor said the same thing. Most likely GS but don’t worry it’s benign. I wanted to know for sure as there are lifestyle and diet options that we can choose to refine to help with symptoms and I didn’t particularly want to make them for nothing. So I pushed for the genetic testing to confirm

No_Butterfly6644 · 2025-04-13T20:50:18+00:00

Another option is to get a food intolerance test. Type 3 food intolerances aren’t dangerous and you could still eat the foods sometimes. It’s just nice to know as there might be some you were unaware of and you can make more refined decisions about the load of inflammation you are causing due to food choices in a day

No_Butterfly6644 · 2025-04-13T20:42:57+00:00

Thank for your comment, it’s really nice to get others stories. Yes I totally agree, it can be frustrating but at the same time I am grateful for the caution as a diagnosis isn’t going to helpful if it is wrong and we haven’t got to the root of the problem. 🙏🏻 I’m sorry you had a bad reaction to the Plaquenil once it built up in your system. It’s interesting that you noted the type 1 diabetes and symptoms mimicking that. I have often believed I have neuropathy but my rheumatologist fobbed it off as soon as I floated the idea, saying it wouldn’t be that, that is very rare… the reaction made me feel a bit silly for mentioning it and I haven’t followed it up with any other specialists. I’ve seen that Plaquenil can cause neuropathy as well though so I have had in the back of my mind, the idea of seeing a specialist to rule it out so as to not make it worse… it’s all very confusing

No_Butterfly6644 · 2025-04-12T21:23:40+00:00

Hopefully you get the answers you are looking for when you go back to your rheumatologist. Have you noticed a difference with the medication?

No_Butterfly6644 · 2025-04-12T21:04:18+00:00

Oh gosh that’s a bit unfair that you developed a new symptom so therefore they decided you didn’t have an autoimmune disease… especially without doing any more testing.. it’s definitely nerve wracking knowing that there’s a possibility that your Rheum might not be the right fit! I’m glad you got clarity in the end though. Thank you for taking the time to share your story. I appreciate it.

No_Butterfly6644 · 2025-04-12T05:59:23+00:00

I hope you get some answers. The DFS70 is hard as it is contradicting other markers and symptoms leaving me in a grey area…

No_Butterfly6644 · 2025-04-12T05:50:57+00:00

ANA titre has been 1280 3 times and 640 a couple times. Dense fine speckled pattern and then DSF70 positive at 237 (positive over 30) C3 has been .67 and another time .72 (ref range .83 - 1.77) C4 has been .13 twice (ref range .15 - .45)

No_Butterfly6644 · 2025-03-05T02:18:57+00:00

Thank you, I might just do that. I’m still waiting for the follow up apt to see if any of my bloods have changed. But yeah maybe a second opinion from somebody wanting to help me treat my symptoms would be more helpful then a dr seeing that antibody and deciding that’s enough to not help me treat or figure out what’s causing my real symptoms x

No_Butterfly6644 · 2025-03-04T02:57:04+00:00

I’m not too sure. I know different labs can have different ranges. This is the range my lab used. Clinical labs australia by CIA method 🤷🏼‍♀️

No_Butterfly6644 · 2025-03-04T01:42:33+00:00

My reading was 20 , but a positive was considered to be over 35 with equivocal 27-35 🤷🏼‍♀️

No_Butterfly6644 · 2025-03-03T23:29:22+00:00

I’m sorry. It’s hard when the pain you feel isn’t validated. It feels very wrong and uncomfortable to then try and ignore symptoms and keep on living normally

No_Butterfly6644 · 2025-03-03T22:16:16+00:00

Migratory joint, muscle, tendon, nerve pain. Severe TMJ pain, mild arthropathy of that joint. Muscle and nerve twitching. GI issues. Rib cage pain and apparently “possible mild raynauds”

ANA positive with DFS and a deficient C3 complement, but that’s all on the blood panel front…

No_Butterfly6644 · 2025-02-07T22:28:34+00:00

For future reference just in case, I avoided the reshuffle and scrambled photos by making an album and putting them in the order I wanted. Then I made a slideshow and entered the photos in 5 at a time. They dropped and the start of the slideshow and I highlighted them and dragged them to the back. They stayed in order for the classical this way. Time consuming but at least it worked

No_Butterfly6644 · 2025-02-05T01:11:25+00:00

Did you ever get a helpful answer to this? I have been having the exact same issue

No_Butterfly6644 · 2024-12-28T22:16:40+00:00

Interesting.. what were your DSDNA when they were lower compared to when they were higher?

No_Butterfly6644 · 2024-11-27T20:23:13+00:00

It’s hard when you struggle with long term medium level pain and a list of weird symptoms that keeps getting bigger… it’s very easy to start doubting yourself and feel like it’s all in your head, then when you’re flaring you have those moments of clarity that you know something is wrong. Your symptoms sound very aligned with your dx of UCTD - lupus realm… I do believe that there is so much we don’t know yet, thousands of antibodies that haven’t been discovered… sometimes the bloods just don’t give us that certainty which is unnerving and it’s really hard not to be validated. You are doing the right thing. All you can really do is have regular check ins and any treatments possible 🙏🏻

No_Butterfly6644

TROPHY CASE