Asking for ESR & CRP numbers: At the beginning of... - PMRGCAuk

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Asking for ESR & CRP numbers

Rache
Rache

At the beginning of my PMR diagnosis, when I rang for my blood test results, the receptionist told me my ESR was normal but to contact GP about my CRP level, just that - no numbers offered. Asked GP later and my CRP level was 27. I did not think to query ESR level. A month later after being on 15mg Pred, my GP ordered a second blood test. When I rang, I was again told my ESR was normal. I asked for exact numbers for CRP and was told it was now 6.7, a significant drop.

Having recently read on this forum that we should keep a record of our changing levels of both ESR and CRP, I rang reception again today. It turns out my ESR had dropped from 24 to 6 since taking Pred!! I am amazed I wasn’t informed of this big drop. Surely this is very relevant information which should be shared with the patient. Just to remind others to always ask for details of their results and don’t just accept their ‘normal’. I imagine 24 must have been high for me personally and I would have been very reassured to know how much it had come down.

20 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

This is range they should be in -

ESR Averages (based on 1996 study)

Age 20. Men 12, Women 18

Age 50. Men 14, Women 21

Age 90. Men 19, Women 23

Another study shows slightly difference values -

Age under 50. Men 0-15, Women 0-20

Age over 50. Men 0-20, Women 0-30

CRP Reference Range

Adult: less than 8 mg/L

Up to 1 month: less than 6 mg/L

Most patients (90%) without organic disease have CRP levels less than 3mg/L and 99% have levels less than 10mg/L.

The problem is, as individuals, we don't usually know what our normal is as it's not a test that is done when you don't have anything wrong. Some people's are a lot lower normally than the averages stated.

Once you are on the Pred then your inflammation levels are usually kept artificially low.

But it is a good idea to know what your levels are, then you can monitor yourself - if you are that way inclined. Some are, some aren’t. But a comment of “normal” is a bit meaningless really.

Rache
Rache in reply to DorsetLady

Thanks for the info, DorsetLady. So my normal might actually have been a bit higher than the lower levels shown by my second test. I agree ‘normal’ is a bit meaningless from what you say

Thanks DL

You are entitled to ask for a printout of your results from reception. Also most surgeries now have an on line facility so you can see your results directly. I find it great.

Rache
Rache in reply to piglette

I don’t think I have access to online results, just appointments and prescriptions but will ask now you mention it

piglette
piglette in reply to Rache

Patients must have full access to their medical records retrospectively from April 2020, according to the new GP contract. Worth checking to see if you can get yours now. Otherwise ask for a printout. That often gives more information and the recommended normals. Also notes from the doctor even.

Rache
Rache in reply to piglette

Not sure if that applies in N Ireland. We are often behind the times and we don’t even have a government here these days 😬

11caroline29
11caroline29 in reply to Rache

I got access to my sons medical notes from GP in April and my medical notes in July last year from Belfast Trust. I’m sure patients notes were freely available from May 2018 in N.Ireland.

Hidden
Hidden in reply to piglette

Thanks for that piglette. They haven't put records or tests online at my surgery. I will try and make sure I will get mine on by April 2020 now. I have clicked something to say I want all my results etc available to.me online.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Rache

If you have access to appointments & prescriptions there’s no reason why you shouldn’t have access to records and results. Sometimes you do need to request these facilities. Some surgeries don’t do it automatically- I think they are a bit wary about some patients reading them and not understanding. But they aren’t accessible until GP has okayed them.

Rache
Rache in reply to DorsetLady

Thanks DL, am definitely going to ask at my next appointment. I often feel very ‘cap in hand’ going to the doctors, speaking to receptionists. It’s why I hate having to do it. Having said that, I have a new female GP who has been very friendly and down to earth and willing to respect my input on PMR progress. Curt receptionists are another matter ☹️

I’m sick and tired of being told my markers are normal. I know my ESR coasts on 4, always has done. When I had a serious infection once it was only 8. When my GCA was at its height and my eyes were shutting down it was 16. Recently it went up to 12 for the first time in 2 years, yet I’ve had to fight to get it redone.

I know how you must feel. It would be nice to be credited with some knowledge of our own bodies!

PMRpro
PMRproAmbassador

Yes - my point exactly. In fact, by modern standards, 24 is on the high side.

The normal range may be 1-20 or even 1-30 - but that is the range of levels which would be found in a large population of 10,000 or more healthy people. It is not the range which you can accept in a single person. My personal normal is also low single figures - and for several weeks it hovered at 16-18 which no-one commented on as it was still solidly "in normal range".

But if the average doctor doesn't understand that concept - how would a receptionist? Nor do any of them really seem to get the significance of trends. Here the trends are plotted on our computer records - which I find quite comforting.

Yes that’s an illuminating explanation. Your posts are very satisfying to read 🙂

In America, many hospitals & physician groups have online medical records that the patient has access to. In my town, it is called MyChart.

When I have blood work, an X-ray, a DexaScan, mammogram or a urinalysis, my results are available to me as soon as they are available to the doctor who ordered the test.

And, you can bring up a chart with past results and even display (and print) a graph.

You can message your doctor, and they can answer online. I find this more convenient than going through a switchboard and leaving a voice message and waiting for an answer when it’s convenient for the doctor to return calls.

I've monitored my ESR and CRP for all five years of PMR. Ever week for the first few months, monthly for more than a year, then every three months, where I am now. I ask for copies of any and all blood work and have had no difficulty with these requests while lining in the Northwest Territories or Alberta, as long as I sign a release of information. (Note: in both these locations ESR is no longer tested, only CRP.)

Having this information on hand and charting it out has enabled me to identify that a CRP reading bordering on 10 pretty much guarantees a flare is on the way, or confirms one already taking place. When diagnosed with PMR my CRP was169.9.

FYI, I have also asked for and received all medical reports, including bone density, Vitamin D levels, rheumatology and other specialist reports, X-ray results, etc. Access to information legislation in Canada guarantees a person's right to their medical information with the signing of the appropriate release of information request.

I live for the day when I can access medical records on-line.

I asked the lab the does blood tests to send me a copy direct. Not a problem. So if there is a query, I have it to discuss with the doctor. Not the other way around.

Rache
Rache in reply to sondya

Sounds like things are very different in America, Canada & New Zealand!

sondya
sondya in reply to Rache

Rache - same with the Rheumatologist and my GP. Happy to share their case notes. As they say, an informed patient is proactive with a good attitude.

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