Help understanding doctors notes: Morning everyone... - LUPUS UK

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Help understanding doctors notes

Leenie0811 profile image
14 Replies

Morning everyone,

I hope you are well, I have been looking through my online medical record and found my referral to rheumatology. The doctor has noted my ANA levels were weakly positive 1/40 back in 2013 when I was suspected of rheumatoid arthritis and currently they have risen to 1/360. The letter then says my extended ANA was negative (I cant find this in my test results), my ESR is 9 and my CRP <2.

I had a look on google for ESR and CRP but it come up with a lot of things, could anyone explain these to me and potentially what that means to the rheumatologist?

Thanks,

Leenie x

14 Replies

They tell your rheumy how bad your inflammation is. ESR means Erythocyte Sedimentation Rate and just means something isn't quite right, but the doc has to investigate to find out what. Your numbers are brilliant, for ESR anything above 20 is a warning and CRP should be no higher than 5 or 6. It stands for C Reactive Protein. Once my ESR was 86!!!

. Hope this helps. :-)

in reply to

Hi Poems - just to say that the fluctuation of ESR and CRP are apparently only really relevant to rheumatic people with RA and probably not so much to Lupus. For me with my Sjögren’s my ESR (or equivalent PV in my lab) would consistently be around 90-100 or more now. Yet my doctor tells me that this is just my normal for Sjögren’s and CRP of 13-30 isn’t apparently significant either.

Not sure how they figure this out or whether they are right (seeing a Sjögren’s rheumy privately in a few weeks to check) but guessing low stuff isn’t necessarily brilliant - although it would represent a miracle of wellness for me and probably for you! X

in reply to

Thank you Twitchy, yes I explained it from the point of view of an RA sufferer. My GP explained the ESR to me as anything over 20 indicated illness, but that's all. Of course I don't know how it is represented for Vasculitis or Sjogren's. As you know, I don't have Lupus (as far as I know),

in reply to

Sorry if I sounded bossy Poems. I’m feeling physically and mentally out of sorts today - sudden onset of wild wind and rain here a relief for me! I just didn’t want Leenie 0811 to feel that her bloods were necessarily fine that’s all. It’s depressing when our bloods don’t represent how we feel isn’t it and her ANA is same as mine and that indicates autoimmunity at least.

Vasculitis seems to be similarly represented by these inflammatory markers as RA. I know some have RA, Lupus and Vasculitis without high inflammatory markers but mostly the ESR is high when disease is active. Not so for Sjögren’s though - it’s usually very high regardless of how we feel all rheumies tell me.

My ESR never got under 20 and my CRP never below 12 unless I’m on steroids or dmards but I’m not offered these anymore. Now all soar and I’m told it’s “just” my primary Sjögren’s.

Life was more interesting with RA diagnosis as my old GP would ask me to predict my markers each month and I was invariably spot on. 🤷🏼‍♀️🥴😊

in reply to

I didn't think you were being bossy sweetheart. I know all your advice is given for the benefit of those who need it, and as I'm not infallable, I too need correction. :-O I'm so sorry you are having a rough time right now. To be honest, I forgot I was on the Lupus forum and not the RA forum.

in reply to

🤗🤗🤗

Leenie0811 profile image
Leenie0811 in reply to

Thank you for the clarification Twitchytoes, I spoke to my mum who has arthritis and she convinced me I had nothing to worry about with those results but when I showed her your comment we both understood how bloods sometimes don't reflect how we feel

Leenie0811 profile image
Leenie0811 in reply to

Thank you for explaining what the abbreviations mean :)

Melba1 profile image
Melba1

Hi Leenie,

It will depend on your symptoms too. Your current ANA is moderately high which meets one of the criteria for lupus but ANA is non specific so can be positive in a number of conditions and in healthy people (although the level you now have means autoimmunity should be closely looked at). I think the ‘extended’ ANA your letter referred to is probably the ENA tests (extractable nuclear antigens) they do if ANA is positive. This can help them narrow down different types of autoimmune connective tissue disease but lots of people have negative ENA.

CRP and ESR are measures of inflammation. In some people (not all) CRP usually rises in an infection and ESR but not CRP rises in a lupus flare. Although your numbers are good and within normal range many of us with lupus don’t have a normal inflammatory response so our ESR and CRP remain low even when very inflamed and unwell. I have had severe (hospitalised) lupus flares, pneumonia, kidney infections etc and my ESR/ CRP don’t move at all.

Hopefully you’ll get a rheumatologist who’ll put the blood results with your symptoms and you’ll get answers x

Leenie0811 profile image
Leenie0811 in reply to Melba1

Thank you Melba1, I get fevers and the butterfly rash along with mouth ulcers and joint pain predominantly in my hands/feet although sometimes it goes to my hips. Sometimes when the fatigue hits me bad I get swollen glands in my throat and struggle with my voice.

I've noted down all my symptoms ready for my rheumatologist appointment, unfortunately its in November so a little bit of time to wait! Its good to know that the ESR and CRP don't always correlate with a flare, I am just fed up of the not knowing :(

Roarah profile image
Roarah

ESR and CRP are relevant but not specific tests for inflammation. When severly high they help point to many rheumatic diseases. They are also very important in predicting cardiovascular diseases at lower elevated levels. A specific CRP above three is a high risk indicator of potential cardiovascular disease.

Leenie0811 profile image
Leenie0811 in reply to Roarah

Thank you for the explanation Roarah, its good to know about cardiovascular disease too as my fathers family have had issues. Its mainly been bad diets that caused heart attacks so I am always cautious! Plenty of fruit and veggies :)

Roarah profile image
Roarah in reply to Leenie0811

Diet is very related to CRP so keep up with your anti inflammatory diet ( fruits, veggies, omega 3s, etc). Your under 2 value is a great sign that you might avoid the hereditary trend in your family.

Leenie0811 profile image
Leenie0811 in reply to Roarah

that's good to know, I eat plant based but do have an omega supplement. I try my best to stay away from any processed foods all in hope it helps with the symptoms!

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