ANA test results : Hi, I’m reaching out in the... - LUPUS UK

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ANA test results

PurpleKoala24 profile image
4 Replies

Hi,

I’m reaching out in the hope someone is able to help me translate my ANA blood tests. I’ve had symptoms for over a year, predominantly fatigue/exhaustion, painful joints, mouth sores, feet that turn purple when cold (I also have a coeliac disease diagnosis from 2015).

My results are back on the NHS app with a lab comment of ‘positive, ANA titre = 80’ with a further test for serum ANA pattern as ‘speckled’ yet HCP comment is ‘normal, no further action required’.

Does anyone have any experience or advice please?

Thank you in advance.

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PurpleKoala24 profile image
PurpleKoala24
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Loobie72 profile image
Loobie72

hi, it’s been a very long time since I tested for ana, but it annoys me greatly they put so much stock in the test. It’s notoriously unreliable. Very common for false positives as well as negatives.

All I can say is if you get push back based solely on ana results, look the doctor dead in the eye and say - you know as well as I do how unreliable ana test are.

Hope you find answers 😊

OldTed60 profile image
OldTed60

I think they often dismiss a weakly positive ANA because a significant proportion of the non autoimmune population carry this too. But with symptoms they shouldn’t because it’s positive and therefore you should be referred for further testing. Mine was same titre a year ago when last tested and is considered borderline on lab report but in context now of having scleroderma and Sjogren’s is just classed by my rheumatologist as +ANA. So I would go back to GP and firmly request that any positive ANA with symptoms should surely lead to further testing for specific antibodies or a referral to rheumatology

KayHimm profile image
KayHimm

PurpleKoala24 -

Fatigue and joint pain for a year is very hard, and it must be confusing to now have seen these test results.

I don’t know everything that is taken into account with ANA interpretation. I think the GP can always contact a rheumatologist when unclear in a particular case. You need to talk directly to your GP to see what they think.

In general, everything is taken into account. One thing you want to know is whether your mouth ulcers are consistent with lupus. I would ask about that. I have a connective tissue disease but my mouth ulcers are what I always thought of as canker sores. Mine are not significant. Your GP may have noticed the type of mouth ulcers that lupus patients get. I would want to know that information because it can represent skin involvement. Also, did they note swelling in your joints? If your joint exam showed certain features that is important too.

Did the GP think you have Raynaud’s?

The ANA is important. It can be positive one time and negative another, though, particularly in milder patients. So they do re-test when symptoms evolve.

Let us know what your GP says. Good luck.

Kay

Dhewitt215 profile image
Dhewitt215

I tested positive once in the beginning of being sick. Then negative for 12 years! I was also on a significant amount of steroids during those 12 years. My rheumatologist KNEW what was wrong...just couldn't prove it through blood work. He continued to treat me as best he could with quite a bit if pushback from BCBS. Gosh, I despise insurance companies...a conversation for another day. Finally, a full myosis panel, and there it was...positive ana...positive smith...lupus, Rheumatoid Arthritis, dermatomyositis. Everything my 1st rheumatologist knew I had wo the bloods. He retired...boo. But it took that long to finally PROVE to insurance that's what I had all along. So, now getting medications specific to those diseases...not just treating symptoms. Don't give up...t can take quite a while.

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