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Rheumatoid arthrititis blood test results

19 replies

mindutopia · 10/05/2019 12:31

I'm curious to know if anyone has ever eventually been diagnosed with RA, but had blood tests come back normal? I know it's possible to be seronegative (negative for RF), but it is ever possible for other inflammatory markers to also come back normal, like CRP and ESR?

I'm currently being investigated for RA. Have been having fatigue and joint pain stiffness for about 3-4 months now, but it came on very quickly. One day, felt mostly fine, then woke up in the middle of the night with pain in one toe (thought, wtaf did I do to my toe?!), by morning it was swollen and I could barely walk for the next few days. A week later, the same thing happened in the middle joint of one finger, except it was while I was commuting to work and I literally watched it swell and start throbbing to the point I couldn't move it. And so on...awful fatigue some days which can be better on others, now joint pain in my feet, hands and knees. I also developed what I'm sure is probably lichen schlerosus (still being investigated) around the time the pain started.

I have no history of autoimmunity, but I did have a very similar episode of pain in my hands and wrists in my early 20s (15 years ago). It was investigated as something autoimmune or possibly neurological, but nothing was conclusive except high CRP. I've had high CRP for as long as I can remember, at least since mid-teens when I had a blood test done. Drs have always remarked about it, but in isolation, I don't think they were too concerned. The hand pain lasted a couple years (diagnosed marginally as fibromyalgia, as also had fatigue, even though I didn't fit the criteria, no pain elsewhere at the time, mostly just a way to fob me off I think). Then it went away and I've been fine for 15 years until recently.

I've had x-rays done and am waiting on blood results. My CRP and ESR were out of range but not ridiculously high when I had them tested 4 years ago (for something totally unrelated, they just threw them in to check just in case). But now that I've had the blood drawn, I'm worried that what if all comes back normal this time? Considering I've almost never had normal results for CRP, I think it's unlikely, but will they do further investigation anyway, based on symptoms alone? I think my nearly 40 year old self is feeling very much like my 20 year old self did and worried about being fobbed off again and never getting any answers or validation for what my body seems to be telling me.

So that's a long way of saying, I'm wondering what anyone else's experiences have been with investigations for RA, what I can expect, even if blood tests come back normal ish or only a little bit above range?

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DrinkFeckArseGirls · 10/05/2019 12:34

This happened to me. I was (am?) convinced I had RA, no less because I had a juvenile arthritis. But the recent result came back normal - well, perfectly slam in the middle of what they should be 🤷🏼‍♀️

CitadelsofScience · 10/05/2019 12:36

Look at psoriatic arthritis, that often doesn't raise inflammatory markers very much if at all.

mindutopia · 10/05/2019 12:38

Can I ask what happened next? Did they do anything further or just leave you to it? I would consider looking to book privately with a rheumatologist (though cringe at the cost), as they haven't tested RF or anti-CCP in these initial tests. I mean they may well come back off the charts and then it will be obvious what I need to do next anyway...

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VidPid · 10/05/2019 12:44

I'm wondering the same thing, my results came back very slightly raised. My GP seems to still think it's rheumatoid though!

Tuesdayrain · 10/05/2019 13:04

This happened to me. There was lots of backwards and forward visits to rhematology and gp. I was given steroid injections at first then I moved onto methotrexate and now I'm on biologics. It took a long time to get to the point that they took it seriously. Keep going back. I was told by one rheumatology nurse that my make up looked to good for me to be in any real amount of pain!

DrinkFeckArseGirls · 10/05/2019 13:42

I’m not much of help here because i haven’t been back to my GP - I’m slightly stumped at what to do now - worried she’ll think I’m a hypochondriac or something Confused then again my DD had allergy tests done which came back clear but she very clearly suffers from hayfever Hmm

VidPid · 10/05/2019 21:08

@DrinkFeckArseGirls keep going back!! I felt the same for so long and convinced myself my symptoms were normal. I've finally been diagnosed with FOUR different potentially life threatening illnesses - and now maybe rheumatoid as well. Keep trying.

PlainJane74 · 10/05/2019 21:16

It wouldn’t be RA if blood tests results are normal.
It could be Psoriatic arthritis, not everyone presents with extreme scaly skin, there are other factors involved.

Muir23 · 10/05/2019 21:27

The toe episode sounds like gout to me. Have you had your urate levels checked?

mindutopia · 12/05/2019 07:06

Thanks for your advice. Bloods should be back in a couple weeks, so we’ll see. I had a dream about it last night, so I must feel stressed about it.

No, I don’t believe they tested for gout, but I think that’s highly unlikely. I’m in my 30s, otherwise healthy, and only one incident of swelling was in my toe. The others have been in my fingers and also knees. I did wonder that as well but was told that I’d be unlikely to be getting such a systemic response with gout.

Interestingly, does anyone else have high cholesterol with RA? I was reading about the link between cholesterol and autoimmunity. I’ve had high cholesterol at least since I was a teen (why they were doing blood tests then and checking my CRP all these years). My dad also did and had chronic pain issues. That’s despite being active, a healthy weight and a vegetarian for more than half my life. It was always a bit of a mystery why my cholesterol was so high (it’s not familial Hypercholesterolaemia). But apparently high cholesterol can occur 10+ years before RA symptoms, even in otherwise healthy people. It would certainly explain a lot. Doctors have stressed me out all my adult life about my cholesterol and my diet, even though it was perfectly healthy. I’ve never believed it was just a ‘lifestyle’ thing and there had to have been some other explanation.

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mindutopia · 22/05/2019 09:21

Thank you all for your advice. I got my blood test results back today (but not x-rays). Nearly everything was normal, which I actually find to be quite depressing. Sad It brings me right back to being 20 again and being in pain and everyone telling me it was all in my head (though I know this time, I can't have 'imagined' my joints swelling up right before my eyes and being unable to move them!). The only thing that came back abnormal was vitamin D. It showed I have a vitamin D deficiency. Would that cause this? Fatigue, yes, that makes sense, but I mean the joint pain, swelling, and stiffness. I'm going to get myself on some vitamin D supplements today and hoping that will help. But is there anything else I should be asking about? No RF or anti-CCP done, which I guess they wouldn't do now anyway, but ESR and CRP were normal. Actually, it's probably the only time in my adult life I've had a normal CRP test! The irony.

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MissingInActionYouSay · 22/05/2019 09:43

Op, I have RA and it's shit. Have you seen a rheumatologist yet? I got a diagnosis based on symptoms when I presented to the consultant. They then confirmed with blood tests. My rheumatoid factor was elevated but she did say that even if it was normal my symptoms were text book.

As for vitamin d, I am almost constantly deficient despite taking supplements. Your body uses bit d in the inflammation process so your low levels again reinforce that you have active inflammation going on. Get some vitamins- take 20k a day for a month and then one a week. That really does help.

mindutopia · 23/05/2019 13:57

I haven’t seen anyone yet. I have my follow up appointment with the GP next week. I just looked up my test results online as I wanted to be able to prepare any questions for her. Do you think they will refer me even if initial test results show nothing much? I certainly feel awful but I’ve been breastfeeding for a year and a half nearly (though been weaning in the past month) and I am massively sleep deprived as I get up between 4-5am every day between a combination of my youngest dc waking and my work schedule. It’s hard to know why I feel so awful anymore as my lifestyle is pretty stressful unfortunately at the moment. Sad

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Likeamobvie · 23/05/2019 20:34

Have they tested you for other things op? Iron levels? Could it be thyroid issues? My RA was fobbed off because I have Hashimotos, thyroid issues cause joint pain and also fatigue.

RandomMess · 23/05/2019 20:44

Does anyone in your family have psoriasis? It sounds like PA with which you also gave low Vit D levels...

DH was accidentally diagnosed speedily by the consultant after the GP being very dismissive AngryAngryAngry

You can never have had Classic psoriasis skin lesions and develop PA as it's an immunity condition not a skin condition.

mindutopia · 23/05/2019 21:27

Yes, thyroid levels fine, iron is always really good, everything else checks out fine. No other history of autoimmune conditions, no psoriasis, though that was a possible suggestion by my gp.

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RandomMess · 23/05/2019 21:57

No psoriasis in family at all? Like 2 generations back?

RandomMess · 23/05/2019 21:59

Actually they have no idea where DH got his psoriasis from 🤷🏽‍♀️

Hizz · 26/05/2019 16:28

I thought RA was diagnosed by a Rheumatologist taking into account all symptoms as well as blood results so I'd ask for a referral, they would test RF and anti CCP.
I developed RA in my 50s but had joint pain when I was BFing in my late 30s / early 40s. I also used to get joint pain with PM's. No idea if there's a connection. I've never had my cholesterol tested so don't know about that.

I do know someone who woke up one day with full on RA symptoms out of the blue. He's perfectly fine now, just takes hydroxychloroquine.

Getting up at 4 am, working, BFing and having a toddlerShock. That's enough to make you ill. Can you get a break?

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