So I stupidly signed up to "patients know best" which in my case is debatable seeing as I'm an English teacher.
Anyway I went for my first post methodrexate blood test today and was hoping someone would call me to reassure me about my liver numbers.
No one called so when I got the email from patients know best I tried to have a look. Of course all the numbers look terrifying but from what I can work out my liver looks ok. What is terrifying is a few red stripes which surely can't be good and it looks as though my CRP has me at deaths door. I have stopped looking now because it's driving me even more mad than I already am with all this horror. But please tell me that it's not unusual to have sky high CRP with RA???
Feel like getting myself measured up for a blooming coffin right now!
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Bon1
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CRP is usually used as a measure of inflammation (though it can be high in other things such as a transient infection), so yes, having a high CRP (and often very high) is quite common in RA. It may indicate that maybe your RA isn't under particularly good control right now (need to compare it to your last or usual results), but then again it is considered a fairly non-specific marker and could be raised for a whole lot of reasons, including if you have any kind of infection or bugs right at the moment. I don't think you need to panic though - I am sure you have quite a bit more time before you need to be measured for coffins !
Oh thank you so much for the reply. That certainly helps.... Like I said there were other scary red lines too but in the end I just stopped trying to work them out. I suppose the next question along from that is how quickly can things go wrong in terms of bloods on methodrexate? I have only had two doses - 7.5 mg - and I gather that's a really low starting point. I hate to say it but I have lost a. It of faith in my rheumatology department because they didn't arrange for any sulphasalaIne blood tests meaning that i was in it for nearly 3 months and liver about to explode by the time they realised! I guess because of this I am concerned that they might not spot something for a second time!
Hi there. What exactly is it that frightens you? Is it numbers in general or these particular ones? Not trying to belittle your experience but just work out how best to help you.
No problem! I guess it's a combo between complete ignorance of any thing medical and then trying to work out using Dr Google what the red lines might mean ( I am assuming that these are the ones out of the normal range because all the rest have a green line next to them. As They say - a little knowledge is a dangerous thing!)
As far as I can make out most of the "red" results seem to have some sort of direct link with inflammation or RA. Which would obviously make sense. The one that I am not sure about is lymphocytes. It is marked as red but I am not clear whether they are high or low - and there does seem to be some sort of link to RA but I am not sure if perhaps the mtx could have done something to those numbers.
On balance I think I should have stuck to literature!!!!
Lymphocytes are a type of white blood cell, and have a role in your immune system. RA means your immune system is a bit wonky, so logical that your lymphocyte count is also wonky.
The important thing to look at is the normal range, which I hope is clearly given in your results? I wouldn't bother too much with DrGoogle at this stage. Then see how many of your results fall outside the normal range and by how much.
For example, you say your CRP is sky high. How much outside the normal range is it? The red marker will show up even if the result is a fraction out of the normal range, but may not be anything to worry about. Similarly with your lymphocytes, are they below or above the normal range and by how much? My WBC was below the bottom of the normal range for several years, but not by enough to worry about.
My GP always looks at my results before I get to see them and annotates them so that I know whether or not she is worried by any result that is 'abnormal'. If anything worrys her she suggests repeating the test to see if it is still abnormal. Only then when there have been 2 abnormal results would we start to get worried! Hopefully yours will do something similar.
Personally I think it's good to learn about your own results, but not necessarily using an automated system. We're all different, so the normal ranges may not be right for you, and over time you'll learn what your normal is if you keep a record of your own results. As earthwitch says, high CRP is a common in RA and with infections. And it sounds like you are newly diagnosed, so yet to get your RA controlled. Two doses of 7.5mg MTX are not likely to have done much yet - usually you need a couple of months at doses of 10mg or over to get a result (although some people do get a response with less). I think my CRP was 120 on diagnosis, and took nearly a year to get into"normal" range.
So it is to be expected that your CRP is above what they give as "normal". and results that are a bit over the line can be flagged up when actually a few points over or under are really of no great concern. But they have to set a cut off point somewhere! With my rheumy department the results go to a computer, and then only get flagged up to a human being if something is way over (or under) that cut off.
Although it can and does happen that people respond badly quite quickly, like with you and Sulphasalazine, that doesn't happen often.
I cant remember my crp but i know anti ccp1 and 2 were relevant along with esr. I think we can all get alarmed by high readings but i am given to understand they need to be looked at in a broader spectrum with regard to reaction to certain med combinations etc and these readings can apparently give them a better indication of your situation. Ive felt "ok" as much as you can be with acute RA and had horrendous readings but that could have shown what has been or i guess what is coming, on the other hand i have felt absolutely cant get out of bed awful and had no high readings. Also i think many readings are only relevant in relation to previous readings when they are changing meds etc on you and then can be a positive indication of improvement. Im sure i have now made a "misty" matter into a thick fog so teacher my work here is done ;). (and dont you dare mark my punctuation and grammar! lol)
Ha! No it's as clear as mud now. And everyone gets an A*. I would be beyond clueless if it wasn't for this forum. I guess over time these numbers will come to mean a bit more. Thanks so much again. Are you guys generally confident in your Rheumatogy departments that they can be relied on to get in touch sharpish if a problem comes up?
I wouldn't say sharpish, but eventually.... I missed a blood test once and it did take them several weeks to notice (I only have them every couple of months now).
I had a book that my results were written in ,i had to carry it with me all the time ,and in the booklet it gave the abbreviation ,what it meant and what the normal was ,so i kept good track of it ,aswell as my gp ,sadly i no longer have it as i switched to enbrel ,but ask your surgery and ghey should have some ,or be able to explain to you
I go for blood tests every 3 months to check kidney and liver function. When I go to see my consultant I ask what the results are. I hate it when they say normal. What is normal for one person is not always normal for everyone. This CRP can be between 18 and 5 (normal). But if you have an infection or a flare-up these effect the reading. Or if you just start medication or change medication. These can all effect the CRP reading. All it actually shows is something is going on. Don't worry too much. If it's 49 or higher then your consultant will advise extra medication or physio, Or just carry on and it will go down on its own depending on the cause. Hope this helps. It can be scarey but after 16 years I take it in stride.
I can't access my blood results through the gp practice I am temporarily registered with, although they will show me them on their computer screens, but won't print these off for me. I find not knowing my own results infuriating so I have used alternative methods to access them now. Under the pretext of seeing a private consultant for example or needing then to make a decision about having an op!
I think it's good to have abs to understand these test results because if, like me, you have problems with drug allergies or nasty side effects - the blood results are the visuals you may need to stay on track with the medications.
My liver didn't like MTX much but it did settle down as long as I didn't touch any alcohol. My old gp practice monitored my bloods and prescriptions and would phone me up on the same day when my liver function tests were wonky and tell me to drop a dose the following week or redo the tests at shorter intervals.
I can understand why you've lost faith after the Sulfasalazine incident so it's good you are learning to double check them- but it's important to be pragmatic because some "red lines" will just be slightly raised or under and may just be your own normal. My RBCs are like this - always just over range. I finally asked a GP about this and she told me that it was just me - slightly thicker blood than many but nothing at all too worry about.
With all chronic conditions it's important to learn to self manage in my opinion - but not to let it obsess or panic you. You will get to know what's your normal pattern that way and it will become just like reading some of the more familiar literature -set texts you will soon know and understand well!
Twitchy I think you should change GP practice. I thought you had a right to receive such results. If I can't get into the GP surgery to pick up blood test results any time I make them post them to me ..,,,,and they do
Thanks. I'm moving to a new practice soon Cornish Rex so it doesn't seem worth picking a fight as the GPs themselves have all been great - locum a few days ago was encouraging me to learn more and showing me the computer screen. They just don't want to print them because they say it costs time and money. I do feel there's more to it red patients knowing to much or something but not worth fighting over now!
Unfortunately there is no "right" to receive information. You definitely have the right to request your own patient notes and information about you, but the doctor in charge of your case can refuse to give it to you if they believe for any reason at all it might be harmful for you to know (which could include psychological reasons, or them thinking you won't understand it).
You're right, it's a dpa exemption. But you can challenge it with the information commissioner. I'd be amazed if any GP dared to try and use the exemption though
Hi sorry if this has already been covered. I like getting my results as I'm not completely confident that they are being looked at by the doctors at the hospital. I use the methotrexate book as a base line for either the results are normal....I am a bit of a control freak though !
Back to results that are out of range - as has been suggested by other people, your own normal may be outside the average range for normal, and that is quite OK - by definition not everyone will fit the average. The key thing really is to watch whether any of the results are changing, and keep changing in the same direction. For example, readings of 15, 17, 15, 14 (when normal range is up to 15) would likely not be significant, but a series of readings of 15, 17, 18, 18, 20 might show something is happening in a slightly negative way. One single out of range reading, also may not be significant, as sometimes it really only means anything if several tests show the same trend. Also, an odd high or low reading if there has been something else going on (like when you are just getting a cold, or have had an infection of some sort, or your body has had some other physical stress) may have nothing to do with your RA or treatment and will come right on its own. So, keep an eye on what is changing, rather than what the actual numbers are, and if in doubt, ask your GP if it is significant.
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