So busy moaning earlier I forgot to ask
I have bloods done monthly now instead of two weekly
But does anyone look at the results? It’s just that I feel so stiff and painful I think my inflammation may have increased but how would I know ?
Thanks guys x over and out from me for now xx
My GP looks at mine and ok’s them, my rheumy refers to them at appointments. I have access to them also on the systm online app.
I am the same as Kitty J. Have mine monthly and can honestly say that my ESR levels faithfully track how much pain I am feeling.
I don't know. I suspect someone looks at my blood tests to approve prescriptions. I know my rheumatologist doesn't look at scan results though.
If your GP has signed a Shared Care agreement then he will be checking once the results are back. They sometimes do this before surgery in the morning, but more usually before they do their rounds after surgery. Sometimes Rheumys may do too, more often than not when seen in clinic tough. Be assured though if anything is awry someone will contact you.
Do you not have a drug monitoring record book at all? Not everyone does but if you do you can keep an eye on your results, or ask the nurse who takes your bloods to let you know how your previous bloods were, although if there were any unusual values you'd have been contacted before then.
My rheumatologist requested a shared care agreement with GP to prescribe methotrexate in December. I've heard nothing, methotrexate isn't showing on my GP record, and hospital appear to have arranged my next set of bloods. Does this mean GP has rejected the request? Not honestly expecting you to know the answer, just I've never been in this situation before. I don't know how it works.
Rheumatologist asked me to call them and confirm the shared care agreement, but how can I possibly do that when nobody includes me in the communications!?
I was given a methotrexate book to record blood test results but I have no way of seeing the results. My book is empty.
Not necessarily. Although if the hospital is filling your MTX prescription & your next drug monitoring bloods are at hospital that would suggest that your GP hasn't yet signed a Shared Care agreement. It may be that he wishes to seek more info from your Rheumy if he's not confident in taking the responsibility of the prescribing of & monitoring a patient on MTX (more usual if you're the first patient he's had taking it), he doesn’t wish to take the responsibility or he's simply not got round to it. As you all have to be in agreement (meaning you are involved in the decision) you may initially contact the Practice Manager, ask if she can check on your behalf why there is a delay. It needs acknowledgment either way & an idea when it will be in place, if he is going to sign it.
I hold my drug monitoring blood test book. When I have bloods taken it's then that my previous months results are entered. That said the bloods are checked long before then, when they are received back from the lab so don't worry. I think sometimes a printout is supplied instead & you enter the result into your book, it depends on how your Practice chooses to do it.
I hope this helps.
Thank you. That is helpful. I feel like I'm being left out of the loop.
You shouldn’t. As I say you are included so do ask, otherwise it won't be resolved, if he's not aware of the request particularly. GP's are notorious for playing catch up with paperwork.
I get my bloods sent to RA and my GP if my RA team forget to add GP on form the nurse adds him on too as she does the bloods so I can see the results rather than chase RA team. It helps me understand what is going on,
If there is anything of concern in your blood test results the laboratory alerts the person who orders the test. You can check your results on line…..but as most don’t know what to look for it isn’t very useful.
Thanks everyone my bloods are requested by rheumatology through the gp and I go to gp surgery to have the done. The rheumatologist normally tells me how they are when I have an appointment x. I do remember they called me before when the information marker was going up and up each time. I’ll check with the nurse today for any update xx thanks for all your help 😃
Hi, my results go to my consultant and I ring rheumatology nurse for results if I am concerned 😊
Hi
I have my blood tested every month ( RA and CKD ) and rely on my GP to check the results. Well not quite! I also keep track of them myself, the system in Wales is that a small book is supplied to the patient and the results are filled in by the surgery, it’s very much a hit and miss system. I used to go to the surgery every month and get the results, but the staff there don’t take too kindly to that ( too much work ? ) Anyway, it’s about every three months and I then log the results into a spreadsheet so it’s very easy to see trends or results that are out of range.
All of the normal expected results for each test are published on the NHS web site. It’s not that I don’t trust doctors!
Chris_0
If you get the NHS app you can see your test results and what they should be
A 500 Rheumatoid Factor went unnoticed or dismissed in 2010 until I was enabled to access online records after diagnosis in 2016! I’m expecting contact after recent CKD result but I’m not holding my breath as my GP is on maternity leave and I had to instigate my own bi-monthly blood test at hospital because the practice did not respond to phone requests for an appointment there. Unfortunately the delay put my next test appointment out of ‘sync’ with Rheumy’s phone appointment in March so he won’t have the benefit of latest results that should otherwise have been available. ☹️
Mine are three-monthly now. The GP sees them and the rheumatologist too. I can feel creaky sometimes, but the blood results are fine.
Wait, are we not supposed to creak? 😬😝
Hahaha, it’s the law I think
Creaky is a good description 😂😂
Most places have an automatic alert so if a result is out of normal range it will get flagged. My rheumy only looks at the results if they are flagged.
But I check them myself every time!
My platelets fell by nearly 65% when I started sulfasalazine, but stayed within normal range so no alert. Then I started to bleed from every orifice but I was told my last blood tests were normal.
Next blood tests confirmed thrombocytopenia, thanks to another 30% drop. Looking at the trajectory is important too, especially on new drugs. Doctors here don't have time to do that. But I do, if only they would give me the results.
Why can’t you get your results? I thought this was better now in the UK.
(I get mine by email the same day, but not UK)
Just no way to access results of tests requested by hospital. If GP orders them they go on online portal. I believe some areas of UK have hospital portal or access through the NHS app. Not here.
I have the same problem and it’s most annoying. I would like to monitor the changes myself. In order to access them in the past I have had to phone my consultant’s secretary and ask her to copy and post them. I’ve felt reluctant to do that whilst the NHS has been under such pressure.
Even pre-pandemic if I called and asked for scan results I'd get "What do you want them for?" from the dragons. Er... because they're my scan results. "Why do YOU want to keep them from me?" is the real question.
I have bloods done monthly, which are checked by the GP, but I ask the receptionist for the ESR and CRP numbers so I can keep a check on them. I did once ask for a print out but it was frowned upon I think. I have to say it looked a bit scary anyway, as there were some things with red exclamation marks on, but had been told it was ‘normal no action’. I think however it was that it was just normal for me at the time.
My rheumatologist has always printed my forms off, and GP take bloods. It goes on a special reporting system, that flags concerns rather than the main pathology system. Unfortunately the results are not clearly visible for GP & don’t appear online or on nhs app. This month they have reviewed the shared care agreement and passed blood ordering to GPS so hopefully things will be easier for me to monitor. Before nurses were inundated with people checking because gps were declining prescriptions because they couldn’t see results.
Different hospitals/GPs have different arrangements. At my hospital they have DAWN blood monitoring department and they issue prescriptions for DMARDs (I’ve still not worked out what DAWN stands for!) I always wondered if anybody routinely checked the results but in the last couple of months I’ve been phoned twice the day after blood tests so it’s good to know that they are. First time was for my daughter to say her CRP was raised and they asked if she had any symptoms and would she like to see anyone. The second time was to tell me my ALT levels were slightly raised and they asked me to repeat the blood test 2 weeks later.
Ours is called the BUC and it was always said to me as if I knew what that meant. Blood and urine clinic maybe?
Could well be. DAWN is run by the rheumatology department and both phone calls were from rheumatology doctors, the first from a registrar and the second from one of the consultants (although not mine). As well as looking at blood results they also do all the DMARD prescriptions. It seems a strange set up as we do have shared care but hospital has agreed to do this part on behalf of the GPs.
It's interesting. I've never heard of it being done that way for all DMARDs before but it's a bit like how biologic prescribing works here, and that seems to be efficient.
DAWN is a piece of software for monitoring patient blood results. 4s-DAWN.com
(There was also a DAWN early arthritis research programme but I think that has finished)
Hello Gotta,
I’m on shared care pathway which means my GP surgery does my blood tests which were every 8 weeks but are now every 12 weeks because of Covid. The results are put into patient access online and I can see them usually within 48 hours.
My Rheumy team can access them remotely and it is this that generates the hospital to keep prescribing my Biologics. It is not only the results that matter but the fact that they can check from these results that you are compliant in actually taking the medication you have been prescribed.
My GP does not do ESR as that is a non specific test for inflammation but goes on CRP.
I always think looking back at my period of onset and diagnosis where ESR was taken regularly that for myself it does seem to show my inflammation levels more relate-ably in the way I’m feeling than CRP. But hey ho.
I would recommend anyone who can to ask for Patient online access if offered by their surgery as it’s great to see the graphs of your test results. I can see my ALT for example going back years now and my HBA1C that I still have tested after Steroids gave me Diabetes.
Definitely important to get to know your own blood test results and see how it effects you in real terms, as others have quite rightly pointed out if there is something flagged then you would be notified. My GP texts me to say go and have a repeat in a week if anything looks out of range.
All the best
Mx
I have Patient Access but cannot see by blood test results if the Hospital requested the test, only if the GP did. My results also go into the DAWN monitoring system, like Bpeal.
My GP checks them, but does not pay attention to detail or seemingly pay attention to my individual situation. I request a print out every month and monitor them myself. I'm seronegative.
For example this month, the receptionist told me over the phone my bloods were normal, but the print showed me to be lymphopenic and my Hg , ferritin and haematocrit, although sitting at the bottom of the normal range had dropped quite substantially from last month.
I was anaemic last year and completed a 6 month course of ferritin in November, it looks as if I'm becoming anaemic again, so I've started taking floradix again. If next months bloods do not improve I'll contact my GP.
I never assume the medical profession will contact me over results, rather I always chase up.
It really depends on your practice. I can access mine on ‘systmonline’ so always look for myself. I always get a recall if something is ‘off’.
I’ve signed a million consent forms at my GP practice so that I can have access to blood results etc. I don’t have them done on a regular basis as I’m unmedicated atm so technically don’t need monitoring. I also have my rheumy bloods done by my GP and working in pathology I know GP gets a paper and electronic copy within 24 hours so I give it a couple of days and ring the surgery (they have specific times for results). and get them myself even though they’re supposed to be on systmonline that takes weeks to update.
I would not rely on a GP checking results. I have had abnormal liver function results and never been contacted. Ask to see if you can access your results online or if not always phone to check. Expecting a GP to do what they are supposed to do is a recipe for disaster and can be fatal as I have discovered to my cost. Losing my husband has convinced me that the system cannot be relied upon; there will always be something like Covid, flu, Christmas, staff shortages or illness, funding cuts or a myriad of other reasons. The only person you can rely on to have your best interests at heart is you, unless you are lucky enough to have a partner or someone in the family who will investigate and advocate on your behalf.
I've occasionally had the doctor at the lab phone me in the evening of the same day if there was something untoward. They asked me to contact the GP in the morning. Then the GP rang before I could.. I'm in Edinburgh.
no problem asking for a print out at my primary care centre.No flags no problem....thats not always the case for the patient
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