Anti CCP result 'dismissed' by |GP- am I worrying unnecessarily ?

sharon35

Hi,

Looking to see if others are willing to share experience of Anti CCP Positive test results, to help my understanding / reduce worry please.

Having suffered from fatigue and stiff fingers for a while, I asked my GP for blood tests to see if I had any Arthritis. These were done 16 Dec and I saw results online over Xmas, ahead of appt to discuss with GP 5 Jan. I also have ongoing issues with my feet and over December my cheeks (sinuses?) have begun to feel inflamed and my eyes itchy.

My CRP and Rh Factor were normal. Anti CCP Abnormal at 33.9 (vs 17 ). ESR not done.

Before seeing GP I researched on this & NHS sites and expected from what I had read to be referred to Rheumatology; having both stiff, enlarged fingers and a Positive Anti-CCP , which I read is 90%+ specific for having / going to get RA, and as such is at least a ‘early warning sign’.

In fact, my GP sort of dismissed the Anti CCP as marginal. At twice the recommended upper limit it doesn’t seem marginal to me but I cant find anything online (or from the lovely VA Helpline lady) which gives a range for that measure.

If Anti CCP ranges from 1 – 5000, I can see that 33.9 is still relatively low.

Is anyone willing to share their knowledge / their result to give me an idea of what levels do seem to trigger a referral / or people with confirmed RA who are getting treatment what theirs is?

I appreciate that there are many factors in a diagnosis, my GP did examine my hands for tenderness and ‘knobbly joints’, which he didn’t find. 

But from what |I am reading that would / could occur later and the Anti CCP test should give me the opportunity to catch this and get proper meds to stop the disease BEFORE damage is done.

I questioned him about this, as he then said the Anti CCP was probably an anomaly as the RF was negative, but that’s not what I am reading online

Just having been given anti inflammatory meds I am worried that potential underlying RA will progress , even if my fingers no longer feel stiff.

My GP is lovely and we get on well. I don’t want to challenge him if I am over worrying, esp.with all that they are facing ATM. On the other hand, as a GP he is not a specialist.

Anna

Hello@sharon35 and welcome to the online community,

You have certainly done your research about anti-CCP tests and their indication of rheumatoid arthritis. You say that your result was relatively low, but from what I’ve read, anything above 20 could be an early warning sign for RA. Other members who have experience of this type of test may like to contribute, but meanwhile, I would suggest that if you are concerned, make another appointment to see your GP. He sounds like he would listen to your concerns and explanation of why you would like to be referred to a rheumatologist.

The NHS page on rheumatoid arthritis talks in a bit more detail about anti CCP tests. Although it doesn’t mention specific numbers, it does make clear that a positive anti CCP could mean a diagnosis of RA, and that the Rh factor is not always present in such cases.

You might also like to look at the Versus Arthritis webpage on rheumatoid arthritis. It discusses symptoms and treatments that you might find useful to know about.

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

Best wishes, and do let us know how you get on,

Anna ( Mod)

Arthuritis

@sharon35 So sorry to here about your situation, you must be exhausted with worry. There is a way forward:

I had a similar issue and my gp lost me precious months in dismissing my suspicions, which unfortunately I was in denial of so didn’t push it. Catching it very early gives you the best possible chance of remission or even prevention. The NICE guidance is clear on this, but most GPs are not aware, and even often mistake OA for RA. Most heinous, is that they don’t realise time is of the essence in catching any serious condition early.

Here is the NICE instruction: (Never read by GPs)

Rheumatoid arthritis in adults: management

“1.1 Referral, diagnosis and investigations Referral from primary care

1.1.1 Refer for specialist opinion any adult with suspected persistent synovitis of undetermined cause. Refer urgently (even with a normal acute-phase response, negative anti-cyclic citrullinated peptide [CCP] antibodies or rheumatoid factor) if any of the following apply:

• the small joints of the hands or feet are affected

• more than one joint is affected

• there has been a delay of 3 months or longer between onset of symptoms and seeking medical advice. [2009, amended 2018”

You have at least 2, if not all 3 conditions. No ifs buts or debates.

It is beyond the scope of a GP to advise against NICE, and requires a specialist consultant referral immediately.

My own NHS rheumy was fuming when he heard what happened. Apparently they are meant to be notified within 3 days by GPs.

By the time I was diagnosed, months later, it had become a raging RA with ACCP of 500 (upper machine limit is 500 in private sector, 340 in NHS). I ended up going to a private Rheumy to get diagnosed as my own gp was not helpful. In a lot of cases they seem to be afraid of referring or looking dumb to the hosp consultant. He only finally referred me when both the private rheumy and another doctor at the NHS hosp where I was being seen for something else wrote to him to remind him how serious it was and needed urgent referral.

I would suggest you gently but firmly ask your gp to refer you to a rheumy to set your mind at rest if its really nothing, or a window of opportunity for you not to become a member of the frequent flyer programme here! (Nice as you are, if I can help you avoid this then all the better).

The CRP & ESR do not have to be raised, they just indicate absence of fire, the ACCP number is like litres of petrol leaking, you only need a trigger spark, and having those symptoms are the early warning signs its smouldering already.

Do let us know how you get on. Message me directly if you don’t get a prompt referral.

sharon35

Thank you so much.

That is the NICE passage I had read beforehand but was doubting myself with the GP being so casual. I naively thought that GPs would be familiar with all these, but I can now go back and quote that at him with renewed confidence.

I had taken a note of the NG100 paragraph and all with me, but in the heat of conversation simply didn't feel up to quoting at him. I should have more confidence but responses like yours now give me that confidence.

Will let you know how I get on.

I too am lucky enough to have the funds to give me the option of going private first if need be, so you sharing that has been a useful back up.

Thx again.

sharon35

Arthuritis I meant to say sorry to hear your story and for what you have gone through. I got 'into the flow' of typing with relief at what you were saying and forgot.

Thanks again, I have made a call to the Surgery to get a message with these further details to my GP , so hope he will now act.

Thx & best wishes, Sharon.

sharon35

Update, NHS App shows i have now secured a Hospital 'Referral to rheumatologist (XaAg8) ', GP said something about an 'advice referral' that they should respond to in 5 Working Days with their view on next steps , so not exactly sure its as per NG100 Para 1.1, but gets my info to a specialist, so I am happy things are moving forward.

Thx again

Sharon.

Arthuritis

@sharon35 Happy to help!