Making sense of blood work

Hi everyone,

I recently had my bloods done again as the last time I had them my ANF came back as negative and I got super excited...

Being the analyst I am I've taken my latest report and looked back through all my previous ones and put them in excel format, which I probably shouldn't have done as I'm now more confused than ever (couldn't help myself though)!!

This time it's come back as positive again, not just that it's also the highest reading I've ever had for the centromere antibody level (>8AI).

My Scl 70/SS-A/SS-B consistently read fine and within normal ranges and my rheumatoid factor always says <20 which is apparently negative. My centromere level is always above the range, along with positive ANF, low heamatocrit, low b12 and low folate (which I take medication for).

Has anyone got a high centromere/positive ANF but without all the others and still had a diagnosis of anything more concrete?

I'm still down as undifferentiated connective tissue dissorder with reynauds, polyarthralgia and sicca at the moment and I've got appointments coming up to look into chronic sinusitis/mucus retention cysts/Temporomandibular joint dysfunction (fun times).

I know it's a long process but I've been going back and forth for nearly 3 years now and feel a tad impatient as I still feel like poop!

P.s. I think this will be one of those posts that no one can really answer but it made me feel a little better trying (ha) :)

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  • This site has a lot of usefiul info about interpreting sclero related blood tests. Might be osf some use.

    sclerodermainfo.org/

    Its way over my head. Im waiting for ACA results atm and for second ANA (IFA this time). Meantime my hands keep changing colour!.

  • I can help you with this if you like, and if you want to post your results here or send them to me privately that would be easiest. But first of all, if ANA is negative, the individual antibodies will be negative. If for some reason in the past your results showed a negative ANA and positive centromere antibodies, the ANA was likely a false negative. Second, scleroderma antibodies are almost always mutually exclusive, i.e., if you are positive for one, you will be negative for the others. Individual scleroderma antibodies are associated with different variants of systemic sclerosis and different disease risks and characteristics, which is why it is important to know your antibody. Last, systemic sclerosis/scleroderma is a clinical diagnosis and can't be arrived at by blood tests alone. Blood tests can contribute to a diagnosis and can give information about the type you are at risk for or are dealing with. Anti-centromere antibodies when present in the context of certain symptoms (such as Raynaud's, GERD, swallowing difficulties, telangiectasia, etc.) are consistent with limited cutaneous systemic sclerosis, or limited scleroderma for short. The old name used to be CREST. Here is a link to the official ACR/EULAR diagnostic criteria for scleroderma that you may find useful, along with a link to another site with a discussion of the same criteria.

    rheumtutor.com/2013-acreula...

    sclerodermainfo.org/faq/dif...

  • Hi Lauren 1987 and dianekjs. Firstly Lauren - I have primary Sjogren's with secondary Raynauds rather than Scleroderma and was diagnosed last year due to positive ANA 1:320 with nucleolar pattern and 100% positive lip biopsy. I was previously diagnosed with seronegative RA six years ago. After I'd been on DMARDs and steroids my autoantibody panel was negative once and several times, equivocal/ inconclusive. However, once off all DMARDs and steroids, my ANA swung positive along with high IgG and IgA and very high inflammatory markers.

    I think my ANA was probably positive always, but no one ever checked prior to my inflammatory arthritis onset because they were only looking for RA (RF and anti CCP). They say these autoantibodies don't change but in my case they have because my Rheumatoid Factor was weak positive (24/5) at first onset but then swung down to 15 once I had been on DMARDs. It has remained negative as have all the more specific antibodies. Your symptoms are very similar to mine so it might be worth considering asking for a lip biopsy for clarity's sake?

    What I wanted to ask Dianekjs is about the nailfold capilleroscopy if that's okay? - (sorry Lauren don't want to hijack your post but I hope this might be useful info for you too). I had one done a month ago and it was normal. The person doing it was a young trainee and didn't seem to think that this test can show secondary Raynauds in other types of connective tissue disease. She said it's only ever used for diagnosing Scleroderma. I was surprised by this because when I googled for information I saw images of nailfolds that indicate Lupus and Sjogren's? Mine showed several heart shaped loop capilliaries and lots of blanks with no capilliaries.

    My question is; does this mean my Raynauds is primary - even though it only started in my late 40s with onset of RA? And also, if it's so reliable for diagnoses of Scleroderma, then why aren't people like Lauren offered it routinely as a means of ruling out Scleroderma at least?

    Finally can it change over time and might the fact that mine was negative be because my secondary Raynauds is quite new?

  • Twitchytoes, I have an appointment very soon but will try to answer at least some of your questions before I leave, and will follow up later if need be. When you had a nailfold capillaroscopy performed, was it done under high magnification on a computer screen, or with a handheld scope of some sort?

    Capillaroscopy can usually differentiate between primary and secondary Raynaud's, and in fact that is one of it's main uses. Sjogren's that is accompanied by Raynaud's is more likely to have nailfold capillary abnormalities than Sjogren's without Raynaud's. Additionally, those with Sjogren's and ACA antibodies are more likely to have capillary abnormalities, and they may be similar to those seen in early systemic sclerosis. Overall, even if Sjogren's is primary with secondary RP, nailfold capillary patterns can be less distinct than they are in scleroderma, and therefore more difficult to contribute diagnostically.

    Capillary patterns in connective tissue diseases can and do change over time as disease progresses. For example, in SSc, patterns are divided into early, active, and late, and are characterized by the progressive obliterative effects of the vasculopathy that is the hallmark of the disease. NFC (or NVC) has recently received more attention in the medical literature and was added to the list of recommendations for VEDOSS (very early diagnosis of systemic sclerosis). Accordingly, I would expect it to gradually become more relied upon as an important diagnostic tool for SSc in particular, but also for other connective tissue diseases. My diagnosis was finally cemented with the identification of abnormal nailfold capillaries in a characteristic early SSc pattern. Handheld examination with an ophthalmoscope or similar device may not be powerful enough to detect early changes, and is what many rheumatologists use during exams.

    From what you've shared, odds would seem to strongly favor your Raynaud's being secondary. It may be too early for clear changes to show on exam, or it is always possible the technician lacked sufficient experience. You might see if you can obtain copies of the images and get a second opinion. Were all fingers examined?

  • Thanks so much for your very helpful reply. In answer to your questions - it was a handheld scope and she didn't save images. She was young and I'm guessing fairly inexperienced but I was just glad she had excluded Scleroderma at least.

    I was slightly panicking because my new rheumy had just asked me to try Sildenafil. However I am never quite certain that my burn/ freeze pain symptoms are due to Raynauds or not.

    I showed the rheum pictures of my hands and feet from this winter and she seemed quite confident that it was Raynauds secondary to my confirmed Sjögren's.

    The reason I find it so confusing is due to having quite a severe small fibre neuropathy in legs, arms and face so it is hard to know what's causing my pain. But she said that any colour changes would be due to Raynauds so I guess they are overlapping.

    I didn't get to see her again after the cappileroscopy but she had written to my GP immediately to ask her to get me started on Sildenafil.

    I have been on it for 3 weeks but so far it's only really given me severe nasal congestion and headaches - I can only manage one tablet out of the two a day she wanted me on. But summer is here so the Raynauds attacks should ease off a bit now hopefully.

    I hope your appointment goes well and thanks again for taking the trouble to explain.

  • Thanks for getting back to me, that'd be awesome if you could please!! I can send you a screen shot of my results spread sheet (although I don't know how?!)

    Sorry for the delayed response I'm in the middle of moving house ☺️!

  • If you click on my name you can private message me and I'll give you my direct email address.

  • You are most welcome, happy to help if able. My capillaries were not visible with the hand-held scope (ophthalmoscope or dermatoscope) for what it's worth - but were clearly abnormal with the higher magnification used in a full nailfold capillaroscopy exam. The former magnifies around 60x and the latter is 200x. Did your technician's method display the images on a computer screen?

    I know what you mean by not always knowing which conditions are causing which symptoms. I often have the same problem with everything I have going on medically. It is sometimes difficult not to become overwhelmed. 🍀

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