So my bloods have come back and I have tested positive for Anti-neutrophil cytoplasmic antibody

[lc24]

I don't know what it is and my GP says although its positive it significance isn't important?

[Rheadster72]

I am assuming you have symptoms or are you asymptomatic. Have a look and ask advice on Vasculitis Uk forum especially if you know your levels. ANCAs occur in varying proportions in people with GPA or MPA (ANCA-associated vasculitis). If you're not symptomatic for these conditions then a rheumatologist is unlikely to treat as the treatments can be reasonably harsh (cyclophosphamide or rituximab) so it's a case of weighing up benefit and risk.

Hope that helps.

[lc24 in reply to Rheadster72]

I have peripheral neuropathy and symptoms of b12, seen my neurologist who said he thinks its my B12 as its been 152ng/L however he ran several blood tests and my GP has said I tested positive for ANCA but basically said it wasn't anything.

[Foggyme Administrator]

Hi Ic24.

First, just wondering if your GP started intensive B12 treatment for your B12 deficiency, as requested by the neurologist (as per your previous posts). (Left a reply about this on your previous post but not sure if you've seen it?).

About the positive antibodies test...

Positive antibody tests are assessed via something called 'titre' and can be anything ranging from a weak positive (titre 1:40) up to a strong posItive (1:64). (Titres of 1:20 are considered negative). However, the level of titre is a poor indicator of any potential disease activity. Much depends on whether you are symptomatic - and you are symptomatic of 'something' and personally I think it's unwise of your GP to simply assume that your symptoms are due to B12 deficiency alone (which he never though you had anyway - despite deficiency serum B12 levels!).

When my C-ANCA levels were raised, the rheumatologist then did further diagnostic tests for MPO and PR3 antibodies to try and pinpoint the precise cause of the raised antibodies - something I'm not sure your GP can do. There are also other antibodies which, if present, link a raised ANCA to the presence of Ulcerative Colitis (sorry, can't remember what they are and no time to look them up - but only a rheumatologist can test for these).

In addition, if 'something' autoimmune is going on in your body, then you could perhaps benefit from full antibody screening - again, something your GP can't do.

It's usual to be referred to a rheumatologist for further investigations if antibodies are raised - especially if symptoms are present - to rule out any potential underlying autoimmune conditions (these are more likely if any of your family have an autoimmune condition - PA being one, but there are many others).

Here’s a link to information about the ANCA test and you can find out more by searching online (also look for ANCA, c-ANCA and p-ANCA).

labtestsonline.org/tests/an...

Having a raised ANCA does not mean that you definately have one of the autoimmune conditions often related with this, especially if the titre is low. And it is possible to have a false positive result.

However, in view of your symptoms and current state of health it would not be unreasonable to ask your GP to refer you to a rheumatologist for further investigation. A rheumatologist can undertake much more comprehensive antibody testing and may (or may not) turn up something that your GP can not test for. They would also be able to evaluate your current symptoms within the context of the raised ANCA and decide if treatment is required.

I say this because I had undiagnosed and then undertreated B12 deficiency for many years and when symptoms were only partially resolved, after much research (and a family history of autoimmune conditions), and raised ANA and ANCA antibodies (which my GP had ignored for years) I eventually insisted on referral to a rheumatologist.

I've now been diagnosed with an autoimmune condition and the rheumatologist is treating me with steroids and azothioprine (an immunosuppressant).

Certainly not saying that this will be the case for you. However, in view of the raised antibodies and your current symptoms, referral to a rheumatologist for further investigation would seem prudent. And if further investigations turn up nothing, it will put your mind at rest. But if something does turn up, then you can have discussions about potential treatments, if required (some treatments can be harsh - as Rheadster72 says - but there are a range of options that can be tried before having to turn to immunosuppressants - just to reassure you...just in case 😉).

Having said all this, think I'd also want to have a conversation with your GP about exactly why he thinks that the raised ANCA is not significant/important. Whilst also keeping in mind that he also thought that a proven B12 deficiency with neurolgical symptoms was neither significant nor important enough to treat 😉😤.

Good luck

👍

[lc24 in reply to Foggyme]

Im upset I don't know what it means, he just said well people that test positive for antibodies for rheumatoid arthritis doesn't mean they have arthritis. So is this anything to do with the symptoms I am getting. I went to GP earlier as I have such bad pains in my tummy I have had to go home from work today. He actually gave me B12 Injection but still doesn't have a letter from my neurologist. It was my neurologist that ordered these tests. He said its a bit of a funny one to order? I just don't know what testing positive for these antibodies mean. He said all my other test came back low normal so even the labs put its not of significance according to my GP.

[Rheadster72 in reply to lc24]

The bit about RA that you've said has made my blood boil! Your GP is totally ignorant. In a paper by Nielen 2004 or was shown that people with RA tended to have Rheumatoid Factor autoantibodies about 14 years before becoming symptomatic. Also, you get seropositve and seronegative RA, the latter being a little less aggressive.

Right coming back to ANCA associated vasculitis, I think the HCPs will wait until it manifests in a major organ - the most common ones being kidneys and lungs. Also get it impacting on ENT, so hearing or sinuses can show symptoms. They would look for tell tale bleeding, such as in urine, cough, nose.

I hope this is of some help. Seriously, check out the Vasculitis UK forum was they are very supportive on there.

In terms of symptoms my mum had - peripheral neuropathy for years, then pulmonary fibrosis eventually before she got the diagnosis.

[lc24 in reply to Rheadster72]

Well does being treated for about 4-5 bouts of sinusitis in a year have any significance. These results also gone to neurologist, so wondering if he has a different take, I wanted to get my blood tests printed but they couldn't do it apparently so I have no idea what else my neurologist tested. Iv never even heard of ANCA before. I lost my eyesight in my one eye for several minutes and was investigated for a TIA, but they put it down to occular migrane on the basis my angiogram and ECG a week later was all okay. I really thought I had got to the bottom of my problem when neurologist said he thought it was due to my B12. So can you have ANCA and be perfectly healthy?

[Rheadster72 in reply to lc24]

In answer to that last Q, the rheumatologist said yes when I was asking home about ANCA. He also suggested you can have ANCA positive test but then show negative in a subsequent test. I'm a bit sceptical on that latter point of them going. Have you seen a rheumatologist or an ENT with an interest in GPA (used to be called Wegeners)? They would be able to tell you the significance of your results in the context of your symptoms. You are likely to get nowhere with your GP. If you could afford it, if suggest seeing a local rheumatologist privately to discuss the significance - that way you'll be seen quicker and be able to put your mind at ease.

[lc24 in reply to Rheadster72]

Whenever I ask for referrals I always get 'no there is no need'. Im done with it all, is it worth seeing a GP privately or will they all be like this.

[Rheadster72 in reply to lc24]

Personally, I would insist your GP do you referral to a rheumatologist privately. GP private would cost about 90 quid and rheumatologist would be about 200 but because you already have ANCA test then it warrants seeing a rheumatologist

[Foggyme Administrator in reply to lc24]

Just a thought...if you decide to get a private appointment with a rheumatologist, ring the private secretary for the Consultant first and ask if they will be prepared to transfer you the their NHS list for further testing/treatment. The type of blood tests you need will be very expensive.

You can find the secretary's telephone contact details on the private hospital website - usually under the consultants name.

Most consultant's are happy to do this, but some don’t, so best to check first. If you're unlucky enough to find one who doesn’t do transfer to the NHS, keep looking because there will be others who do 😉.

Having said that, you have a right to a NHS referral, especially because of your test results and ongoing symptoms.

You could write a letter to the practice manager at the surgery and formally request an NHS referral to a consultant rheumatologist.

Any change you could change GP surgeries?

Good luck

👍

[Foggyme Administrator in reply to lc24]

Ic24. Reading your reply about frequent sinus issues and eye problems...

To say again....please insist that your GP refers you to a rheumatologist. You do have a right to do this.

Is there another GP in the practise you can see...someone who may have a least little,idea of what they're doing...or should be doing. (Going s bit out of sync here - also see reply I,ve left below 😉)

[Foggyme Administrator in reply to lc24]

No idea if this is related to your symptoms. It may be, or it may not. Yes, you can have a raised ANCA and be healthy, but you do have symptoms and are unwell, and at this stage it's better to rule out other things that might be happening rather than assume it's all down to B12 deficiency. Only a rheumatologist can give you the answers you need. So...

The only way to know for sure is to ask your GP to refer you to a rheumatologist for further testing and investigations.

Incidentally, about your doctor's claim that those who test positive for rheumatoid arthritis don't always have it. The thing here is that only a rheumatology consultant can do the necessary tests to rule it in or out. A GP can not tell because they are not able to order the specialist tests.

Also - ANCA is not a 'funny' test to order - the neurologist must have wanted to rule out autoimmune condition (s) as a possible cause of your symptoms.Also assuming that your GP tested other antibodies too, not just ANCA? Ask him, and if not, request that these are done.

Ask for a referral to a rheumatologist. It's your right to ask for this.

About the B12 injection - did he only give you one.

You should have 6 injections (one every other day) and, because you have neurolgical symptoms, you should then continue with an injection every other day until there is no further improvement.

If your GP has insisted that one B12 injection is all you need, print the B12 treatment alert, the BNF treatment guidelines, and the BSH guidelines that I left in my reply to your previous post, then go back to your GP and ask him why he isn't treating you in line with current guidelines.

We see many people here who are upset but the way they are dealt with by their GP's. I'm so sorry that you are another one. Please just try to remember that you are unwell and you have a right to be taken seriously and investigated then treated appropriately.

It might help if you have someone who can go with you to your GP appointments. And if they can understand you problems (and perhaps read the responses I've left here and on your other post), then that person can step in to support you, if necessary. GP's are often more attentive and less hostile if there is a witness in the room. Sad, but true.

Good luck

👍

[Rheadster72 in reply to Foggyme]

Totally agree Foggyme and on reflection my time was a little negative about the treatments. I've just had a rheumatology appointment to request an ANCA test as my mum had MPA. She certainly improved on cyclophosphamide-based treatment. In my experience GPs have even less knowledge of vasculitis than B12 deficiency. My GP had me virtually dictating the referral letter for the rheumatologist!

[Foggyme Administrator in reply to Rheadster72]

Funny you should say that Rheadster72...my GP insisted that I write my own referral letter to the rheumatologist! Disgraceful.

And as to autoimmune conditions...no idea at all. I have to research everything and go with some idea of what he should be doing. Highly dangerous because I'm not a doctor and really need support from someone who,knows what they're doing.

Not able to change GP's so I'm stuck with this state of affairs.

Sometimes it's a lonely business, this trying to get well 😉😀.

[Rheadster72 in reply to Foggyme]

That is priceless and ridiculous at the same time.🤤