CRP and ESR levels normal but symptoms persistent

[poppywildflower03]

I'm just wondering if anyone else has experienced frustration with their labs saying one thing but their body saying another.

For some context I do have an appointment with a rheumatologist in July and I just saw my GP or PCP. I would say I had a peak of symptoms in the month of February and by the time I finally was able to see my doctor last week I was of course a lot less symptomatic but still experiencing joint pain, raynauds, swelling in feet and ankles, shortness of breath etc.

My B-12/folic, Vitamin D and iron are all good and normal numbers+ I take supplements for them as well and I'm consistent; so thats how I know my symptoms are not deficiency related issues. I have hashimotos but my levels for that are good as well.

My CRP was 3.0mg/L and my ESR was 9 so both pretty normal, CRP being mildly elevated. She still referred me to rheumatology given the amount of symptoms I have but I feel so silly.

I know CRP and ESR aren't the main markers for lupus and lupus can also have lower CRP--RA usually has high CRP-- but it's quite frustrating nevertheless...bc I feel like I'm just in my head and over reacting as my labs aren't showing what I feel. I've been taking pictures when my joints turn red and swell, when I get swelling in my feet and ankles, BP readings that have a high diastolic, or really just the main physical manifestations. I've been trying to track everything meticulously but I still fear being dismissed if my labs come back normal again in July.

I'm just curious to know about others journeys when it came to getting diagnosed and what it took.

[KayHimm]

Try not to make too much of any labs. Your GP must see clinical signs of an autoimmune disease in order to refer you to a rheumatologist. Swollen ankles may be a lot more significant than anyone lab.

What the rheumatologist looks for is signs of inflammation in the joints or other organs. They will want to know what is causing your shortness of breath.

Take photos of any rashes and record any fevers.

Best of luck. Keep us posted.

Kay

[StardustZiggy in reply to KayHimm]

I'm the same, there is studies that say "lupus" can burn out. Really frustrating, I still suffer all the symptoms but my bloods say different. One day hopefully, GP's will get it>

[StriatedCaracara]

Ultrasound of an area can also be used to establise if there is inflamation.

Some people do not get values that are signicantly raised. Below is a link to post with couple of papers:

healthunlocked.com/lupusuk/....

[FredaN]

I have inflammation that shows up in ultrasounds, but doesn't in blood tests. Strangely, my ESR and CRP are always exactly the same - right at the bottom end of the normal range. As low as they can go, in fact! It's a bit of a puzzle to me, but the inflammation that was found was deemed "chronic longterm", so I don't know if at one point maybe the inflammatory markers were raised, but my body has somehow adapted to it? It's probably not as simple as that, but I have read many people on here with normal blood tests that have gone on to get a diagnosis. Rheumatology will likely do a wider range of blood tests to build a better picture of what's going on.

It's good that you're taking photos of these things, as I find that really helpful in appointments. Hope that helps.

[tiredmum]

I have seronegative lupus. All my blood tests come back fine, bottom of the range for some but my symptoms prove differently. I suffered from swollen knees, fingers and ankles, rashes on my face , hands and arms, ulcers in my nose and mouth, reacted badly to insect bites, raynauds, anti phospholipid syndrome, hair loss, pleurisy, sores on my fingers and toes, fatigue, unable to walk very far, ibs, tachycardia……. I took photos of all these and kept a diary. My rheumatologist diagnosed me and sent me to St Thomas’s in London for confirmation.

It was a long battle, 10 years after being dismissed by one hospital saying it was all in my head after spending 2 weeks in hospital with stroke symptoms. Persevere though, it’s worth it xx

[KayHimm in reply to tiredmum]

Maybe the term seronegative lupus is not correct. Your anti-phospholipid antibodies are quite specific to lupus when someone has secondary APS.

You are a perfect example of how the signs and symptoms are first, labs confirm.

At any rate, you are in the small percentage of ANA negative patients. I was like you for five years. I was taken seriously and, like you, the aPL was considered significant.

Sorry you had to wait so long to be diagnosed. It is disheartening to hear how often that happens.

Good you told your story. Helpful for others to hear.

Kay

[KayHimm]

Poppywildflower -

One other point is that there are many abnormalities that your GP could have noted that also are concerning. Anemia of chronic disease is common. That seemed of more concern to my GP than ESR, which was only high for a short time.

You are certainly not over-reacting. Swollen joints in a young woman is probably a concern even if all labs are normal. I don’t know that but just guessing because even RA can be negative.

I just re-read your post. You also have Raynaud’s. That doesn’t need labs to confirm.

So you need to feel confident in your GP’s referral.

Kay

[Alexia01]

Hi there,

I totally know what you mean about the blood results and it’s so frustrating. But you need to listen to your body as you know when somethings not right.

I had to push my GP hard to get an ANA test which thankfully came back positive, I’m also Anti Ro positive. I have a diagnoses of Lupus and Sjogrens.

My complement levels are always low even when I’m flaring and my dsDNA is negative.

I was once told by my rheumatologist that a lupus flare wouldn’t normally show a really high CRP it may just be elevated. She claimed that if CRP is really high it would normally mean it’s an infection.

I think you just have to learn what the numbers mean for you. If my CRP is 3 it’s definitely a flare, as it would normally be 0.5.

My ESR is always low and never increases during a flare, I was told some people just have a naturally low ESR baseline, even when inflammation is present.

Hope that helps, best of luck with your journey

Xx

[Jerg]

I so understand this as I feel the same way. Going to see the consultant is so depressing as you are told constantly how your body is and not how you feel personally and blood test shows all is good when this is so far from the truth.

Nothing to help with pain anymore. I am so frustrated

[Tonkie]

oh I needed this post! I have been diagnosed with UCTD and my bloods are always normal. Even when I feel absolutely terrible, I’m swollen with rashes everywhere.. ulcers in mouth and nose. I have reynaulds and a lot of the symptoms of lupus. But still my bloods are always fine. I’ve had ONE very weak positive ANA and that’s it. My CRP is always on the bottom end of normal. It was 4 once, but that’s it. I have regular bloods due to methotrexate and even when I feel like I’m in a flare my bloods will be the same. I guess I just want the validation - someone acknowledging it. I went for bloods last week with swollen knuckles, rashes all over my arms and legs. My hands all blistered and I’ve been eagerly waiting my CRP level back hoping it shows something this time. I’ve had all other results but not that. You guys have made me feel better about it not showing anything because I reckon again it will come back the low end of normal.

[poppywildflower03 in reply to Tonkie]

I read a couple of journals and some people here also mentioned that perhaps we all have our own “normals” so when it’s high for us it might still be in the range of what is considered generally normal levels. I also read up that with lupus CRP can be on the low end, usually CRP is high with something like RA.