Do these numbers mean anything to anyone?

[rareoldme]

I’ve had my blood fest results back and this time it has a test that wasn’t on previous ones.

Serum C reactive protein level was 12.6mg.

GFR 84ml.

I called my doctor and I wasn’t able to speak to anyone so have to try again in a couple of days (I can’t call at 7:30 tomorrow as they ask because I’m on the phone to my son at that time as he goes to school)

I was wondering if anyone could shed any light on these and if it indicates a severity of inflammation or something or the likely hood of finally get a rheumatologist referral. Seems doctors don’t listen to repeat problems and hospital admissions. They have to have test results to make a referral and even they they disagree on what numbers justify it.

Thanks 😊

[PMRpro]

The CRP is a blood marker for inflammation. Is there a range in brackets next to the CRP result?

"Although “normal” CRP levels vary from lab to lab, it is generally accepted that a value of 0.8-1.0 mg/dL (or 8-10 mg/L) or lower is normal. Most healthy adults have CRP levels lower than 0.3 mg/dL."

So as you see - it is either quite raised or slightly raised - but it is a very general test and a cold or chest infection can send it into triple figures

GFR is the glomerular filtration rate and is a measure of kidney function. Over 60 is usually regarded as normal, it can be over 90 in young people and under 60 in older persons but still normal so 84 is pretty good and nothing to worry about.

[rareoldme in reply to PMRpro]

thank you. From looking online I saw the GFR was expected to be that of someone over 60. I’m 40. Does that change anything?

I haven’t had a cold or anything recently. Just pain as usual.

[PMRpro in reply to rareoldme]

No - Higher is better, 84 is very respectable.

There is inflammation somewhere - your GP might give in and refer but without knowing all the results and symptoms it is hard to say especially given the state of the NHS at present.

[rareoldme in reply to PMRpro]

where did you get that info from? Just trying to get to know more. Multiple hospital admissions and breathing problems with pleurisy and constant blood and protein in urine would hopefully get something. So far nothing. No support or able to tell anyone what’s wrong. 😔

[PMRpro in reply to rareoldme]

Out of my brain - I worked in the labs ...

The bit in quotes was to check the ranges and I just googled GFR normal range, then it didn't seem worth writing it when I could copy and paste ...

[rareoldme in reply to PMRpro]

in another life I would have loved to work in labs. Thanks for your help on this.

[PMRpro in reply to rareoldme]

My pleasure

[StriatedCaracara]

Who did the blood test?

I find that hospital blood results do not get imported to GP system that I view with Patient Access. I once had GP receptionist tell me GP not responsible for following up on them.

GP can access hospital bloods on the hospital Trust system (this also shows GP surgery results, as Trust lab does the GP bloods)

I have found I need to advice of hospital blood results for GP surgery to know of them.

[rareoldme in reply to StriatedCaracara]

A nurse did the blood test and sent it to the hospital. I can access them using the NHS app so I know exactly what is reported. So valuable given docs sometimes play it off as all ok when it clearly isn’t. Why is it so hard to get a diagnoses when all the signs are there and all the boxes ticked? C reactive protein has been higher before and marked as borderline. Should be less than 10. Mine is 12.4 and marked as doctor to review. But when it was up at 15 it was borderline yet that’s higher that 12!?

Bloody also show kidney function stage 2 so I hope this time once reviewed it will get something done. Just have to join a queue and cross my fingers!

[PMRpro in reply to rareoldme]

The persistently high CRP has possibly registered.

[rareoldme in reply to PMRpro]

hopefully get some support this time and a diagnosis. Being able to tell people what’s wrong is a huge part of understanding. Since I came back to Lupus it’s all clicked into place for me. It was suggested around 10 years ago then nothing came of it. Seems they are just happy to send me home time and time again with nothing noted as serious like ECG and suffer to the next spike.

[Spanielmadlady in reply to rareoldme]

Its hard because there are so many overlaps and results can flit between positive and negitive..... its very complex and often a wait and see scenario..the average time for a lupus diagnosis is 6 years . Try not to get too hung up on your eGFR as pmrpro said its fine.mine can alter from month to month .it can even depend on how much water youve drunk.mine was down at 60 when I was first diagnosised with LN but has now recovered to 90 with treatment . SML xx

[rareoldme in reply to Spanielmadlady]

it’s kinda good to know it takes around 6 years. Feels like it’s not me being badly handled. I’ve got to the point where I don’t go to the docs when it gets bad, even when I struggle to breathe, because I know the A&E admission will follow. I’ll be told to go down and around 8-10 hours later after an ok ECG and x ray I’ll be sent home and told to take ibuprofen and follow up with GP. Lather rinse repeat 😆

[PMRpro in reply to rareoldme]

The average time to diagnosis of many autoimmune conditions is said to be over 10 years - many are rare so the doctors have never seen them before.

[rareoldme in reply to PMRpro]

wow that’s scary. But also kind of understandable. Lupus isn’t that rare though is it? So I’m hoping this time round when I point it all out I will be on the way to a diagnosis. All this just to convince my GP to to a rheumatologist referral. This is only the beginning of it

[PMRpro in reply to rareoldme]

LupusUK calls it a "relatively uncommon disease" - and it does present in very vague and varying ways like most autoimmune disorders which is what confuses them!

lupusuk.org.uk/medical/lupu....

[StriatedCaracara]

londonlupuscentre.com/post/...

includes

"There is a lot of people that know little or nothing about the disease, lupus is not classified as a “rare disease”. Hundreds of thousands of people have it, and millions suffer with it - worldwide. Statistically, it more common than cystic fibrosis, muscular dystrophy, and multiple sclerosis - combined. However, is it mistakenly thought of as a “rare disease” because of its mysterious heterogeneity and unusual ways the disease presents itself. Lupus is considered a widespread disease; but, the general public knows so little about it because lupus awareness lags behind so many other illnesses (that are ironically less common). "

I googled Dr Arvind Kaul and watched his YouTube talks etc

It is important to get diagnosis and treatment asap.

My local rheumatology referral, when I eventually got one, did not work. Told me it was all in my head etc etc

There are Lupus Centres of Excellence across some parts of the UK - travelling may add value.

Other folk go private 'just to get a diagnosis' (even if no insurance).

The letter with the diagnosis on, then can help with other referrals. Consultant can also make NHS referrals eg to Kidney specialist.

[rareoldme in reply to StriatedCaracara]

I will look at those videos when I can. I’ve also been told it’s in my head. I went around on crutches for 2 months because of knee pain. That was all in my head. I just had to think I was ok and I would be ok. I just thought crutches were a bit of fun and enjoyed the struggle of a city centre commute with an office job. Silly me!

[StriatedCaracara in reply to rareoldme]

One of my biggest hurdles was getting my surgery to do Anti-nuclear antibody (ANA) test.

This came back strong positive so GP surgery had to follow up. Following that result one GP said I was one of the patients surgery was most concerned about.

They referred but then rheumatologist said it was all in my head. Basically there was no other blood test confirming lupus.. Criteria changed 2019 making diagnosis more dependent on specific blood tests.

In relation to the 11 symptoms I have most of them.

Second rheumy diagnosed Undifferentiated Connective Tissue Disorder (UCTD) which is treated in the same way.

Believe more people have UCDT than SLE.

Lots of folk on this forum are UCTDers...

So much criteria dependent and criteria change with new generations of research and 'experts'.

[rareoldme in reply to StriatedCaracara]

o my god. I’ve read the ANA test isn’t a definitive yes or no and that it’s only a pointer. The bigger picture needs to be looked at. But then docs reply on that. Not sure I’ve ever had an ANA done. Is it a normal blood test?

[StriatedCaracara in reply to rareoldme]

I've done a new post.

Learnt so restricted in help that is available that in the end have to do so much still ourselves. Even with treatment (to prevent organ damage..) then still get weird things happening day to day.

So taking control when we can take control helps loads.

Having our own records and learning from them, so we can communicate to medics in another gear when we get the chance, helps loads.

Also we can work on our own strategies and share what works..brilliant forum this..

healthunlocked.com/lupusuk/...

[StriatedCaracara]

I phoned hospital immunology department that does the tests. Spoke to lead clinician who told me what to do.If surgery did not do test she told me to change GP.

Well they did the test and also asked for ENA screen and anti-doubled stranded DNA test.

ANA positive and strong so surgery then prioritised my follow up.

.. ESR and CRP just inflammation flags, so best to prove autoimmunity if poss by getting ANA done. Then head to rheumy..

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Did you find out the cause? I just had the same test with the same number. 12.