Testing : I have tested positive for the ANCA... - Vasculitis UK

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Hazbaz57 profile image
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I have tested positive for the ANCA blood test now 3 times, I keep getting blood results come in regarding different lymphocytes ect, I don’t really know what they mean and what is a good score ect? Any help in understanding would be lovely!

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Hazbaz57 profile image
Hazbaz57
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May7 profile image
May7

I'm ANCA pos as well, have been for six years. Amongst the many tests they do regularly is the Full Blood count. I can tell you that the reference range shown for Lymphocyte count is 1.1 - 3.5 10^9/L Mine is usually at the lower end of the scale, around 1 give or take. Last week it was 0.66, recorded as Outside reference range. The whole Blood Count results were recorded as Normal. My consultants are used to what is normal for ME, but take action when something is really not right.

I hope this helps.

Hazbaz57 profile image
Hazbaz57 in reply to May7

Thank you for your reply, I have no diagnosis as of yet as the doctor is waiting for all tests to come back, including some tests such as hepatitis? I have scans and X-rays booked also

May7 profile image
May7 in reply to Hazbaz57

So it sounds as though you are at the beginning of this long journey. I started with unexplained breathing problems, which, after long waits for spirometry etc, led to no less than 13 blood tests. The chest clinic then referred me to Rheumatology because my results showed ANCA pos Vasculitis, specifically EPGA, once known as Churg Strauss. The short story is that I was put straight onto Prednisolone to control the inflammation, plus other stuff. Regular blood tests have kept a check on me. It's a long road that we travel, and I wish you the very best.

Hazbaz57 profile image
Hazbaz57 in reply to May7

It’s definitely a long journey! Like I said got my scans and X-rays coming up

Chris-Bromsgrove profile image
Chris-Bromsgrove

Your symptoms, along with the positive ANCA results suggests vasculitis but probably not enough for a definite diagnosis. Usually with ANCA associated vasculitis you are likely to have one or more organs affected eg kidneys, lungs, sinuses. Diagnosis is normally achieved through a biopsy of the affected tissue. All I know about lymphocytes is that they are part of the immune system. They produce B cells and T cells used to fight infection. Medication used to treat vasculitis suppresses the number of B cells you produce to stop the autoimmune response (ie stops your immune system attacking you)

Hazbaz57 profile image
Hazbaz57 in reply to Chris-Bromsgrove

Yeah I have had sinus problems for the last 7/8 months, ear and eye problems also, and just the general feeling of being unwell

citygirl1234 profile image
citygirl1234

Hi,

It sounds like your GP is monitoring you while you wait for the rheumatology referral to come through. If you haven’t already, I would check that your referral has been sent to rheumatologist who is a vasculitis specialist. Some departments are huge and it’s not unheard of for referrals to end up on the wrong list. (I experienced this myself). It’s frustrating but in the mean time, make sure you have copies of all of your appointment letters / results so you have them ready for when your appointment comes through.

The usual tests that they request for monitoring are:

* Full Blood Count (FBC) also known as Complete Blood Count (CBC)

* Urea & Electrolytes (U & Es) - this is a kidney function test

* Liver Function Test (LFT)

* C-Reactive Protein (CRP) Test

This page gives you an overview of what each test is for in layman’s terms: nhs.uk/conditions/blood-tes...

The doctor who requested the test should be able to tell you if your results are in range or normal for you. Out of range isn’t necessarily always a problem but it really depends on the situation. It’s particularly important that your kidneys are monitored as ANCA vasculitis can affect the kidneys. They may also ask you to do regular urine tests as well.

The ANCA blood test is much harder to interpret, and is something usually left to vasculitis specialists and immunology. Does your result tell you if you have PR3 or MPO antibodies or does it just say you are ANCA positive?

If you have sinus and ear problems are you also under ENT? For some people, ANCA vasculitis can start with sinus issues.

Hazbaz57 profile image
Hazbaz57 in reply to citygirl1234

I am already seeing a specialist, they are the ones who have tested me for all of this stuff

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