hi it seems im posting on here a bit much but just dont know what to do. the rheumologist team are not accepting my referral because my blood test was not high enough. i'm in debilitating pain daily, i've got an appointment with the GP tomorrow morning again hopefully she will push them to accept the referral but surely there must be something wrong ?
is it possible that even if the blood test isn't high that there is a problem? i mean it's good news and bad news at the same time to hear that the blood test wasn't high enough. nobody WANTS to be diagnosed with this condition but given the amount of pain im in i'm really confused. there is no way this much back pain can be just due to posture and sitting at my desk for years on end? feeling so so hopeless. i would love to assume this will just vanish over time, i've ordered myself a standing desk so im hoping that will help my back get better but i havent had much luck with anything so far
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Amywoodx
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With the caveat that I’m not medically qualified. That’s complete and absolute rubbish, to the point that it’s hugely medically inaccurate: you can have an inflammatory arthritis with completely normal bloodwork. Some people with RA are defined as being seronegative, which means that their RF and anti-ccp levels are entirely normal. In Psoriatic arthritis (PsA), which is the condition I have, it’s extremely common for people to not only be seronegative, but also have entirely normal crp and esr, which are the blood markers for inflammation, even with visibly swollen joints. My PsA began in my lower spine and sacroiliac joints when I was 16, some 20 years before I finally, finally got a diagnosis: I now have widespread osteoarthritis and joint deformity entirely because GPs don’t always know what they don’t know, to a backdrop of some idiot, poorly qualified rheumatologist turning around and saying ‘well, I don’t know what’s wrong with you, but it can’t be arthritis because your bloods are normal’.
Don’t be like Charlie: push for help. In the absence of anything else, ultrasound of a painful joint is definitive for inflammatory arthritis. Meaning if there’s inflammation on the scan, then you definitely have some form of autoimmune driven arthritis and need to be under rheumatology. Can’t speak to Scotland, but in England and Wales, your GP can request an ultrasound. That’s what finally got me referred, diagnosed and on treatment three years ago, and my GP readily admits she only sent me for it on a whim out of desperation. Because all my bloods were normal, but my - at that time, singular - sausage finger clearly wasn’t 🤷♂️
that is honestly so shocking to hear and it makes me so mad that they can just reject people just for the reason that their bloods are normal or not high enough. Mine weren’t even normal, they just weren’t high “enough” and they are still not seeing me. This is why I have always had such a hard time believing anything the GP or any other doc says bc of stuff like this. Makes it so difficult to feel like you’re under proper care. I’m really done with the suffering, I’ve got an appt with the GP tomorrow I hope she pushes them to accept the referral and refers me for scans. There’s definitely something not right unfortunately and I need to be out of pain.
if you can print out Charlie’s reply as this will help explain it as the GP might not know all of this too as autoimmune is very diffeyand difficult for each person.
Second all of this. I have PsA with axial involvement and bilateral sacroillitis. I've never had an abnormal ESR or CRP (apart from once after a Covid vaccine).
I am so grateful that I was diagnosed when I was because I don't think I'd be referred now either. It was not easy getting diagnosed by any means, and I got dismissed by the first rheumatologist due in part to negative bloodwork. But getting a foot in rheumatology's door was crucial. As was having a fantastic GP.
No, they’re different conditions, although there is a lot of crossover in terms of symptoms. About 90% of patients with AS express the hla b27 antibody, whereas only 20% or so of PsA patients carry it, so in the absence of bone fusion, when docs are trying to decide between AS and PsA as a diagnosis, being hla b27 positive can carry a lot of weight. History generally is essential to deciding between the two, as PsA is a result of the skin and nail condition psoriasis: about 30% of all people that have psoriasis at any stage in their life will go on to develop psoriatic arthritis. You can also develop PsA first and then go on to develop psoriasis later, although this is rare. It can effect any joint, and in some people (myself included) it does significantly effect the spine, but routinely involves finger and toe joints, which AS generally doesn’t. For how common it is, PsA is surprisingly unknown amongst the medical community, usually has an asymmetrical presentation, and often completely normal blood results, which in combination means it can take an extremely, unnecessarily long time to get a diagnosis.
There’s an article on creaky joints about the differences if you want to know more, although bear in mind it’s US based so some of the treatment and diagnostic info is not entirely applicable in the UK:
Beginning at 16, my first and sole symptom for about 10 years was SI and lower back flares, but I subsequently had involvement in other joints, including dactylitis (colloquially called sausage fingers), which is considered a feature fairly specific to PsA. Add in that I also had a short lived, single plaque of psoriasis on my calf at 15, and that I’m hla b27 neg, and in my case PsA becomes the obvious conclusion. It would be rare, but it is possible to have both at the same time, though.
When I was diagnosed referral criteria were joint pain in more than one joint lasting more than 6 weeks, lasting morning stiffness and going “ouch” when GP shook my hand!
How times have changed, and not for the better sadly.
But I was also extreme lucky to be sent to a rheumatologist who looked at me and not blood tests. As my blood tests are never far out of the normal range. It happens, and quite commonly, so your rheumt dept are narrow minded idiots.
Have you has the anti-CCP blood test? If you have and that was normal them quite possible to be sero-negative. If not, ask your GP to do it.
Thoughts
Ask GP to refer push for a referral on basis could be ankylosing spondylytis or psoriatic arthritis (both which present with pretty normal bllod tests) or refer you elsewhere
Ask GP send you for ultrasounds or MRI
Ask GP for a private referral and then ask your family and friends to contribute to this for a christmas present. About £200.
It really is such a lottery isn’t it - not to mention very unfair! I was diagnosed more or less the same way as you including the ‘ouch’ as my very enlightened doctor shook my hand. I’m sero-negative too and since I went totally gluten free about eight years ago my CRP is always low.
I love your suggestions - it would be well worth asking for a referral for an MRI.
has being gluten free helped with ur pain? My mum is gluten free and I think it helped her but I’m wondering if I should try a month free of it. It is so difficult though hahaha I love my gluten. And yes I think I’ll ask for an MRI tomorrow when I speak to her but I think she will tell me only the rheumatology can do that
GP can do things, but then they have to pay for them not the hospital. If they say no, stare her firmly - but politely - in the face as say “is it that you don’t want to spend your budget on me?”
Not sure if it has helped with pain- I don’t get a lot of pain now and I can do more with my hands - back then I couldn’t pull plugs out of their sockets without using ‘plug pulls’ on them and I often dropped things and the base of my thumbs used to hurt. I’d say pain wise I’m not so bad but then I’m also taking hydroxychloroquine.
I’d say going totally GF helped a lot with my IBS, it reduced my thyroid antibodies which were high before but it could have been time for them to reduce naturally anyway so who knows and my CRP is always low.
I’m not sure that your GP can refer you for an NHS MRI - I couldn’t even get my previous doctor to send me for a regular x-ray - in the end my physio referred me for a private MRI
I was gluten free many years before RA raised its head and I've had that for a long time too. I'd suggest you've had some really good advice on here and as I can see you've had pain issues for many years it might be something else and only your GP can really advise you. Some people have RA testing positive for the condition, others negative but still have it, and some have the antibody but it doesn't develop. So its is a disease that is many faceted but also remember that a CRP low score may just mean you have an infection as there is no way to tell if inflammation is purely down to RA or another condition. Have you been tested for Pernicous Anaemia ? or Glandular Fever or ME or could you have trapped a nerve which can be very painful. I would urge you to not loose hope but not put everything down to a diagnosis which at this stage is far from certain. I've also ask what blood test you had was it for CRP and / or p.ANCA or ANA as if you tested positive for p.ANCA or ANA then you really do have a definitive diagnosis and whilst there may be long wait you should hopefully be seen by an RA consultant.
yep not a good sign that they’ve rejected me right off the bat so really makes me wonder about who I’m even being referred to 🙄🙄 I just need the tests and scans asap. Love the idea of the Christmas present hahah! Seriously considering at this rate
I’ll ask tomorrow but I’m sure she’ll give me a silly response as they always do 🙄 they don’t even tell me how to take my medication properly, had to google it! Or ask here
yes you must ask! Damage was done to my joints while I waited for diagnosis test after test. Damage that can’t be undone and affected my life. Don’t let whatever condition you have run riot because of lack of progress with GP etc it’s definitely worth INSISTING!
She's written back to then and said that I still need to be seen as my symptoms are still there and won't shift. She didn't really respond properly when I told her that there could still be a problem even if the bloods are not high enough, she seemed like she knew but didn't really want to acknowledge it but still grateful that she is pushing for a referral. She mentioned the waiting list time could be 4 months though :/
This sounds so similar to me, although my GP was convinced I had RA, I met 3 rheumys over near on a year,(this was 12yrs ago) each time sent away & I remember being told, his words”you categorically do not have RA”, so back to the gp, I left my job, moved home to be near family & started again, hallelujah I was diagnosed with RA. Don’t get wrong I was a bit like you thinking great I don’t have RA (I didn’t even know what it was then!). But it must something, but once I was told I could of hugged him as I knew I could start a treatment..
my gps in both places were convinced I had RA from the start & found it very frustrating for them & me, as they could only give quick fixes, boasts of steroids, then I was back to square one!!
I think Charlie’s post is very helpful.. I hope you get the help/treatment you deserve.. I wish you all the very best ongoing. It is hard when your up against it & not being taken seriously, soul destroying.. kindest thoughts 🌸
like some of the others have mentioned it is perfectly plausible to have inflammatory arthritis and normal bloods. Mine are never far out of range. I was dismissed by my local rheumatologist for 4yrs, re having an inflammatory arthritis and actually ended up being seen by a Nass medical adviser in Leeds 250 mile away (long story), who diagnosed me on my initial visit with her from X-rays. I suffered 25yr before diagnosed, so had fused SI joints and fused ribs at diagnosis. This has led to problems with my lungs as they can’t expand fully.
Here is the booklet NASS havd re getting a diagnosis. Under the section re tests it states 50% of AS patients never have raised markers. I am back with the local team so I could get biologics, but have to have this page open every time, when they try to dismiss a flare because bloods are fine.
I was very similar, I did have a flare but the time the doctor saw me I was nearly normal again. My bloods were fine too. I am self employed so I went private it was the only option so I could get treated and carry on working! This was all before covid. It was the best thing I did got seen and put on meds. I did have X-rays done on NHS which showed damage but I think I had RA for several years before I went to GP!
I had problems for a number of years but never went to GP. That flare was only a couple days but it was very bad we had to have a on call doctor out in middle of night!! It is very strange How it works. When I have had other flares they have lasted longer but not as bad . The 3-4 months is actually better than I was told pre covid ! It’s still a long time when you are in pain though !
I agree with others that you need to get a scan. I was diagnosed with psoriatic arthritis despite having no pain or swelling when I first saw the rheumy (I had just had a cold and in my case having any other illness seems to calm my arthritis) but my GP had pushed for an x-ray which showed changes consistent with PsA in my fingers, and my psoriasis has been visible for 45 years. My inflammation markers have always been normal, no matter how bad my inflammation was.
But there are, of course, other conditions that can cause severe back pain. A friend of mine had several operations to correct mechanical problem with his back but still had pain. Eventually he had one final operation which uncovered a large cyst pressing on his spine. After that was removed he was fine. In his case, his scans missed the cyst, but normally anything like that should show up. So push for that scan!
One of the problems GPs and their patients are going to be having more of is that the British Society for Rheumatology referral guidelines say that rheumatologists will not accept referrals for osteoarthritis amongst other things. This means that GPs can say 'just a bit of osteoarthritis' and refuse referral. As others have said if bloods are normal, which they often are, this will add to their desire to refuse referral.
I think, no hope, that a backlash from patient groups and individual patients will result in a change in the guidelines, but I won't be holding my breath. Instead I am busy as an Expert by Experience getting onto as many workgroups, focus groups and scrutiny boards to make the patient voice heard loud and clear!
I have osteoarthritis as well as PsA/AxSpa. The problem I find is that GPs assume rheumatology are dealing with anything MSK, but rheumatology think osteo is outside their remit and GPs can deal with it. So I'm left in care limbo when it comes to the OA.
one way of deciding if you have OA or inflammatory arthritis is how you respond to exercise. OA typically gets worse with movement and improves with rest. Where as inflammatory arthritis gets worse with rest and improves with exercise. So anyone who states they have stiffness lasting more than 30 mins and who feels better with movement, should be referred to rheumatologist irrelevant of what blood tests show.
Unfortunately unlike surgeons who discharge patients once they’ve performed surgery, rheumatologists keep adding to their lists, as you are generally under them for life. OA responds to different meds to control it, and gps have access to those meds. However inflammatory arthritis requires dmards or biologics to control it, which can only be prescribed by a rheumatologist. So that is one of the deciding factors in who manages specific types of arthritis. My local Trust actually have a private company who have taken over the management of the more straightforward rheumatoid cases, with access to the rheumatologist for advice. It means patients are being seen very local to where they live, and that the more complex cases can be reviewed more regularly. I’m not a fan of private care creeping into the nhs, but I’m aware that we can’t keep just adding to rheumatologists lists, which only get less when patients sadly pass away.
So I would urge anyone who wakes with stiffness, and has pains that improve with movement to argue that suggests inflammatory and should be referred.
Morning. My Rheumatology Nurse always used to tell me, “Your GP is a GENERAL practitioner”. As many have said bloods don’t necessarily give an accurate picture of things. Being tenacious and assertive is the way to go. Good luck.
Sorry to hear about the difficulties you are currently having Amy. It never ceases to amaze me how many of us have had to jump through a stupid number of hoops before we have been taken seriously, especially if sero-negative. It took me three years to get diagnosed myself, and I wish that during that time I had been more aware of the care that I should have received because then I would have pushed for it. For that reason, I thought you may find it useful to have a read of the NICE guidelines re rheumatoid arthritis diagnosis, hopefully the following link will work
Finally, just picking up on something mentioned above re going gluten free. If you are eating gluten currently, I would suggest asking your GP to request a test for celiac disease before you consider cutting gluten out - it can cause many of the same symptoms and is something that a rheumatologist would most likely check for at a later stage to rule it out anyway. It took me so long to get diagnosed, that I had already gone gluten free in a desperate attempt to improve my symptoms somehow, so the test wasn’t meaningful for me by the time the Rheumy requested it.
Sending you lots of luck and a big hug for your Gp appointment today 🤗
Hi as others have said already you can have sero negative inflammatory arthritis where the blood tests done show inflammation or only mildly raised inflammation markers. It took me 9 years to eventually get diagnosed with RA after having been seen but turned away 3 times by the only one Rheumatologist at our local hospital. Eventually in desperation my GP asked me to go privately in a different area & the rest is history. That was 23 years ago & im still being treat at that hospital. I’ve refused to return to my local one.
There are lots of conditions that are under the sero negative inflammatory arthritis umbrella & it could be so don’t do as I did & just accept it. You know your body so don’t give up. Ask for a second opinion with a different trust if you have to. You are entitled to one. Hope you get some answers soon x
I was told not to worry my aches were probably menopausal! Twenty years on with RA it was the other way around!! Early menopause creating RA symptoms that had been there for years. Aches pains hot cold hobbling!
Keep fighting for help and join the RA Warriors on this site. 🌺🌸
Mine also always comes back normal and I’ve also got Psa and OSA all over my body and I’m agree with everything Charlie wrote like it was wrote from me lol only mine started in my knees and drs told me I was overworked for years before I told them I think it’s something else as I had a week off and couldn’t hardly move. Then they mentioned arthritis and my journey began many years ago.
Hi, i have only just read your post, but it does sound all too familiar. I am now 64 but first approached my GP re strange, random joint pain flare ups, when I was in my late-ish 30s. Initially blood tests showed nothing. Fortunately for me, the young GP was still prepared to refer me to my local hospital and also requested X rays. He said he didn't expect them to find anything, suggesting it might be ME. However, when I had the X rays, they clearly showed deterioration in both feet and hand joints and on that basis I was diagnosed with RA (initially suggested Sjogrens sydrom because of dry mouth and eyes) and treatment started after that. Initially I was put on strong anti inflammatories and then the Malaria drug (the name of which escapes me at the moment); then methotrexate and when none of that worked, I was finally offered Anti TNF. The latter has until early this year, been very effective - I started it around 17 years ago. I switched from Infliximab hospital infusions to Adululinab, self injections, a few years back. Unfortunately, I am no longer responding very well and have quite a few joint problems again and the resulting poor sleep and restrictions on day to day life. I see my consultant for a 6 monthly check up in Feb 23 and will see what he suggests then, but I am unsure what, if anything else can be offered.
However, going back to your problem! As others suggest, I would urge your GP to refer you for X rays at least, if not a scan (maybe the latter is the preferred method of diagnosis anyway these days?). Best of luck. A
That's outrageous Amywoodx Insist they see you. Make an official complaint if need be. Sounds very unusual and highly irregular!
Agree with Charlie's explanation. PsA for me too, doesn't show on RA test but healthcare providers must listen to you and help with your symptoms. xx
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Rheumatology nurse appointment disappointment 
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