Hi everyone, my name is Claire. I’ve just received back some blood test results (Rheumatoid Factor and Anti CCP antibodies). The Rheumatoid Factor came back negative but the Anti CCP came back as 10.4 K/UL.
The test states that normal range is under 2.9 K/Ul yet mine is over 3 times higher.
The last time this test was done it said I had 14 U/ml which they said was weakly positive.
Both times the doctor has told me these results are of no clinical significance but I just don’t understand why.
I suffer with pain in my hands, wrists, elbows, knees, hips and feet. I have been told it’s Fibromyalgia. They have gave me Naproxen but it does nothing for the pain.
Can anyone explain:
1. Is K/ul results the same outcome as measurement in U/ml? Because it looks like different readings to me. I keep reading that <20 u/ml is negative but they said last time that 14 was weakly positive 🤷♀️ and now that normal range is <2.9 yet mine is 10.4 and the measurement this time is in K/ul not u/ml.
2. Anti CCP shouldn’t appear in the healthy population according to facts I’ve read so the fact that it shows in my blood work and that I suffer pain that keeps me awake surely means something? 🤷♀️ yet I keep being told it’s of no clinical significance.
I’m very concerned that this is going to keep getting overlooked but I’m being made to feel that it’s not important. My Grandad had Rheumatoid Arthritis and I saw what it did to him in particular his hands.
Does anyone have any advice? I’ve included my test result as a photo.
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I honestly think your best bet is to go back to your doctor and ask him to explain your test results clearly& explain why he doesn’t give any other diagnosis than Fibromyalgia. Make a list of what puzzles you.
I presume you don’t have a rheumy nurse as you have no RA diagnosis? If your rheumatoid factor is negative it is quite unlikely that you do have RA.
However, you could ask again for a referral to see a rheumatologist…but unless you choose to go privately you would probably have a very long wait…but as you say your GP hasn’t seemed willing to refer you it would definitely be worth it to put your mind at rest.
It is very bad that you doctors haven’t discussed this with you. But do take comfort that even if you are diagnosed with RA you are very unlikely to suffer like your grandfather. Treatments are just worlds better now, and most people can live pretty normally.
Anyway kU/l are the same as U/ml. So 1000 U’s in a litre is the same as 1 U in a thousandth of a litre (a millilitre).
Generally RA is not diagnosed on a blood test alone. The doctor should take into account physical signs and symptoms that he or she can detect, family history, and preferably imaging results too. As well as pain do your joints go red and swell? Are they stiff in the morning? These are more important diagnostically than just pain with RA.
But is this your GP? As a GP really is not the best person to diagnose this. So you need to push for referral.
And yes, there is a pretty wide margin on what constitutes “normal”. So your results aren’t that indicative in the abscence of other signs. My anti-CCP was well over 150.
There are so many potential musculo-skeletal diseases that it can take a while to get a precise diagnosis. But keep asking and you’ll get there.
Hello. My anti-CCP level was 214. I believe that once it’s positive, it’s simply a matter of the degree of positivity—whether it’s a strong or weak positive, etc. Have you done the Rheumatoid Factor test? If both tests are positive, along with a clinical examination, that should be sufficient for a diagnosis of Rheumatoid Arthritis.
Mine before I got diagnosed was at 80 u/mL and it says normal.ref is below 10u/mL. This is what the blurb says on my NHS app results:Please remember that RA remains a clinical diagnosis and as a rule, test results on their own, outside the context of clinical symptoms and signs, cannot be interpreted. Nonetheless, if a patient is positive for both CCP and RF, it is very likely that they have RA and it is possible that they may develop a more severe form of the disease. If a patient is positive for CCP but not RF and clinical signs suggest RA, then it is likely that they have early RA or that they will develop RA in the future.
If a patient is negative for CCP but has a positive RF, then the clinical symptoms and signs are more important in determining whether a patient has RA versus some other inflammatory condition. Remember that RF, particularly weak RF results, can be found in patients with infections, and in the elderly.
If a patient is negative for both CCP and RF, then it is less likely that they have RA. It must be emphasised, once again however, that RA is a clinical diagnosis based on patient’s symptoms, examination, and radiology, and may be made in the absence of positive autoantibodies.
Many people have a negative RF factor and still have Rheumatoid Arthritis, Seronegative RA. Mine is Seropositive RA and was diagnosed by blood test alone when I was a young teen. On the other hand, people can have high Anti CCP antibodies without having RA. I'd second what AgedCrone said, go back to your doctor and ask them to explain the test better for you and to push for more tests to get to the bottom of what is going on. Anti CCP can also determine who's likely to have a severe reaction to the disease and more damage however this isn't always the case.
Seronegative RA isn't as easy to test for, it takes longer with xrays, medications and ruling out other things first.
Definitely keep notes, if writing is difficult then voice notes on your phone. Can't forget to say anything to the GP or consultant then.
Sounds like you have sero negative rheumatoid arthritis. The higher your anti-CCP, the more likely damage will occur. Mine was over 600, so I can see why your dr wasn't concerned about 10.4.
Thanks. The problem is the Dr never explains tests. I see my results on the NHS app and all I see is that the lab has recorded 2.9 being the upper limit for normal range. When I’m seeing my own result at 10.4 it leaves me thinking that’s high because I’m more than 3 times over what they consider normal so because I’ve had no explanation, I’m left concerned.
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