Normal for me!

I always get a printout of my blood test results, as I like to be informed about my body. Today when I read my printout I was amused to see a note the GP must have written to himself which read "normal for her"!

As my esr rate is pretty high, although it has been higher, and I have the usual slightly anaemic counts, I wondered: am I supposed to accept these levels? My esr rate has never dipped below the rate at diagnosis last year, and the anaemia indicators are creeping up ever so slightly every month. If this is normal for me, why am I taking a toxic drug which wipes me out every weekend?

All these questions, and the constant one: am I making a fuss about nothing?

6 Replies

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  • At my GP practice different GPs check my blood results. I've seen some variation - what is 'satisfactory' for some is 'high' for others. And I suppose that, over time, a moderately raised ESR that doesn't go down might be assessed as your 'normal' ..... I recall that one rheumy said that as my ESR went down to 4 whilst I was on steroids, that was the kind of level I personally should aim for. I think some people have an ESR of 30 or so that begins to looks less worrying if it doesn't shift despite improvement in other areas. I'm no expert of course and this is a question your rheumy might well answer for you.

    Your ESR is unlikely to be the only reason for taking the drugs. There are other indicators - stiffness, swollen joints etc. & how they progress is going to influence your rheumy's assessment of whether or not the current drug treatment is working.

  • A degree of anaemia is part of the package with many chronic conditions - not only RD - it is known as 'the anaemia of chronic disease' - a really catchy title. :)

    Although there are standard ranges for results, everyone has their own levels and will start feeling sick/well as certain numbers are hit. It is possible that a degree of anaemia and a particular ESR are your new normal.

    Maybe good to take away that your GP is checking your results and has made a judgement of them which seems to be based on knowledge of you? However, if you are feeling unwell or still concerned, it would be worth raising the subject the next time you see them.

  • I think the others are right. The raised ESR is a sign of autoimmunity rather than active disease so I've been told by three different consultants, a surgeon and a professor.

    You haven't said what yours is but I was told that my normal, as a woman of 52, is anything of or below 30. Mine was 64 yesterday which I would have considered quite high for me only a month ago. But last week it was touching 80, so now I feel quite pleased that it's relatively low, even though I'm in just as much pain.

    The CRP is apparently the more reliable measure of active disease and mine was 5.6 yesterday whereas the week before it was 160 because I had pancreatitis as a reaction to the latest DMARD, Azathioprine. It normally sits in the mid teens.

    What I'm trying to say is that I'm at last realising that these markers don't mean too much in themselves because they can be influenced by age, weight and infections as well as systemic inflammation - they are very non specific and need to looked at seen in context of your other bloods as well as your symptoms.

    Some people have very low markers compared to me but they still have erosive disease - which so far I don't.

    It has taken me four long years to remotely understand all this and I'm still unsure about the frequent discrepancy between my ESR and my CRP. I was told and also read that this usually only applies to Lupus sufferers but I'm also told I don't have Lupus!

    I do know the CRP is a more immediate response to inflammation and can swing dramatically from high to low and back up again. Whereas the ESR is more of a historic record of the inflammatory process over weeks as it rises and falls less rapidly. For me my ESR represents the way I feel perfectly whereas the CRP doesn't but I can still predict both pretty accurately these days.

    I think you are right to query whether the drugs are working or not if you can see physical changes taking place and you are still in pain and feel tired and unwell. I would rely on these as your criteria for active RA over blood results if you can.

  • Thanks all of you for taking the time to reply. I can see sense in each response, and will take the chance to talk through my concerns at my next face to face appointment. Have a peaceful and pain free night!

  • My GP scanned through my latest bloods on the computer last Friday when she started me on gabapentin. I'd had a lipids test when my monthly bloods were taken & she said they're all good for me as were my drug monitoring bloods. Maybe this is what yours was meaning when he wrote the note, that the levels were what he expected to see, your personal "good" or normal levels? We have to remember that we're all different, then there's erosive & non erosive, each of us react differently to meds, there's no ideal number for any of our bloods, there are "normal" ranges but what may seem high in one person is an acceptable level for others.

    The one person to ask of course to be perfectly clear is your GP, he'll tell you what he meant. ;)

  • I think you are lucky to have a good gp, mine have taken no interest in me or my blood results.

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