I’m really anxious to know if anything showed in the bloods I had taken immediately after seeing the rheumatologist. I’m also keen to know the hand, foot and chest X-ray outcome.
I’m expecting my next rheum date will be sometime in Sept; at my first appointment in May the rheum said he’d review me in 4 months time.
If there was anything of note, would it be standard for the rheum to write to my GP/me or do the results go on my file to be discussed at next rheum appointment? Is no news essentially good news!?
Grateful for any advice/thoughts… thanks in advance!
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Winter_night
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Hi Wn 🤗The results will go back to the doc who ordered them. So your rheumy can get a better picture of what's going on for you.With the blood test they test for something called ANA..if that is positive the sample is then sent for further testing to check ds-DNA. If this is positive too it strongly indicates lupus.
The waiting game is always hard but I'm pleased to hear your being investigated properly 😁You're rheumy will want to see you to discuss results in person n four months is about average time sp u just gotta be patient I'm afraid!! Easier said than done I know 💜🌈😽😽xx
Hello again KK. Thanks for this… it seems mad to me that one of very specific tests, for instance the double stranded dna or the SSA or SSB might have come back positive but will just sit in my file for 4 months. I’m trying to be patient but on days when the pain is worst I wonder what damage is being done by whichever process is wreaking havoc! But I know I need to work on coping with the uncertainty if I’m to keep sane 🤪 X
Uncertainty is the hardest thing to manage I always find. But you will get used to it and learn coping strategies for waiting. One of mine now is just to phone the consultant’s secretaries, GP reception and rheumatology Helpdesk - whichever can help me fastest - and always ask the consultant to copy you in.
Hopefully you’ll get a copy and the blood test results will be on the letter but if not it’s because they can take some time for the lab to process. I haven’t had copies of my last two immunology reports simply because my consultant wrote to me before they were back. But that’s okay for me as nothing really changes these days and she puts my immunology at top of her list of diagnoses now anyway.
It’s like learning the ropes of a new job being a long term conditions patient - you have to be pushy and firm but good humoured and friendly with it. Remember everyone is someone’s patient even your consultant so if you haven’t heard a thing for a month then it’s worth chasing and people should understand x
Results go back to whoever ordered the tests.I asked to be copied into all letters from my consultants.I usually get my copy 1-2 weeks or so after my appointment.i then keep them all together for the DWP x
Some departments may use a hospital patient portal, uploading letters and results there. If so details may be available of how to gain access if you ask their admin team.
Hi SC, unfortunately not in this case. My surgery doesn’t upload anything online and my NHS online record shows only medications and GP referrals at this time. I’m going to try the surgery to see if they can see my last round of bloods which were taken straight after rheum clinic but I think next rheum appointment will be where I have the full picture. Insofar as anyone can have a ‘full picture’ with suspected CTD. I’m beginning to understand how normal waiting and uncertainty is 😬 Thanks for your reply however, I appreciate it X
I don't have an NHS online record, that shows things like referrals. I need to look into getting this. Thanks, I did think maybe something was missing a bit as signed off so many letters relating to an NHS record
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Since I started seeing an NHS Rheumatologist I have been given access to the local hospital NHS Foundation Trust website.
Here is an example for Calderdale and Huddersfield NHS Foundation Trust
It seems to mirror what I can see at the hospital trust where I am a patient:
-Some copies of letters sent to your GP following an appointment at the hospital.
-Some information following a discharge from hospital.
-Selected blood test results once they have been authorised.
-Some hospital appointments.
-Some healthcare Information.
I only learnt about the portal after my first rheumatology appointment - I think from visiting the hospital website. It said to contact then if I wanted access - they emailed and it was easy to set up.
Importantly it gives blood test results, both those done at the hospital and those done at the GP surgery.
In fact more GP surgery blood results get displayed here than on my GP record..things like Immature granulocytes and Reticulocytes and % Reticulocytes
Letters to my GP I can also see.
Last rheumatologist I saw uploaded the letter to my GP the same day as I had my appointment...amazing - saw the letter immediately...
I can see Current issues (high level - single term entries), medications (and vaccinations), consultations, allergies.
The way in which Patient Access can be used to book appointments here seems to be changing. For a while everything seemed then to go through reception.
Now I notice the facility in Patient Access to make a face to face appointment - one slot is available on 21 July (today it is 5 July) nothing before or after.
Then there is 'Emergencies TELEPHONE CALL' and when I click on this I could make an appointment where my GP phones me on 3 August. Again there is only one slot.
You can use Patient Access to make blood test appointment once a GP has been contacted and has approved the request.
After asking for a printout copy of my entire GP medical record, my Patient Access account got updated to include a new item:
Documents - Here copies of consultant letters get uploaded, and also I can see copies of communications I have sent in.
If you have a log in gp you should be able to look at any results you have come in via that. It will indicate if anything needs attention or is in normal range. My Rheumatologist copies me in on all correspondence with my GP surgery. Alternatively you can just go to reception at your GP surgery and they will usually run you off a copy of your results if you ask.
Hi DG, thanks for your reply… unfortunately my surgery doesn’t offer online access to patient records and files but they are helpful and it’s fairly easy to pop in so I’m going to try and do that today. I think the best I can hope for is that they can see the bloods I had done at the hospital the same day I saw the rheum. After that initial face to face appointment in May, the rheum wrote to my GP and copied me in, setting out the symptoms, recapping on diagnosis to date (fibromyalgia and erythromelalgia) and detailing what additional tests he has ordered. I suspect I’ll just have to wait until I see him next - which will be sometime after I see the dermatologist he’s referred me to in mid Sept - to have the full set of results. X
Like others have said, my rheumatology department copy me into all correspondence to my GP, and the letters always say what happened at my appointment and any test results. (Though the test results are often described rather than precise values e.g. "ANA mildly positive" "such and such test normal".) But it can be a long wait for their letters, I find - at least 2-3 weeks, sometimes more like 4-5! Waiting feels awful when you're in suspense, I know. It's tough! I try to get a balance between reading up a bit on the tests and diagnoses, but also trying hard to distract myself with other things, because I can get very anxious otherwise, but everyone is different & has different coping strategies so I guess it's finding what works best for you.
Hi Cat, thanks for your reply. I really empathise with the point around the fine line between educating yourself with over doing it… I tend to go down the Google rabbit hole sometimes! 😆 The rheum I saw sent a very detailed letter to my GP within about 3 weeks of me seeing him and he copied me in. He sets out the history of symptoms and recaps on what has been diagnosed so far by other consultants (fibromyalgia & erythromelalgia) and then he lists the additional tests he’s ordered. I have my next consultation with him around late Sept time (date tbc). By then I’ll have seen the dermatologist also. But unless he follows up with another letter in the meantime re test outcomes, I think I will need to patient. Not easy but Im learning patience is essential when it comes to slowly evolving CTD symptoms! X
That is a tough wait. I really struggle with the Google rabbit hole (nice description!) too, and am finding, as you say, that patience is essential. I am learning that stress/anxiety drives my Lupus, and then the Lupus also drives the stress/anxiety, so they can become a vicious circle, making me more unwell. I am trying to learn the balance between educating myself and obsessing over my health, but it is a hard one, especially at points when my Lupus is flaring or I'm ill with something else and I'm worried. So far, I find I'm often right when I think/notice something is wrong with my body, but quite often wrong in terms of what I actually think it is or how bad it is (can end up catastrophising!). That said, I really did not expect the Lupus diagnosis - that was a nasty surprise! Wishing you the very best for your test results and next consultation, and hope you can find ways to relax and not feel too anxious in the meantime (so much easier said than done, I know) X
Thank you Cat. I appreciate the lovely msg of support. I’ve taken a lot of comfort from ‘speaking’ to people on this forum. I’ve also learned so much about what to look out for and what certain things mean. X
Download the NHS patient App on to your phone, and perhaps download another linked to your GP Practice. I use one called patient access. Your GP practice website might mention which one they use ad there are at least 5 out there available, but the practice will need to give you a code/log in details etc. From there, all your blood results will come up on the app. The NHS one is, imo, better. Less faff getting access to stuff you want, including repeat prescriptions.
Hi Blue Feather. Thanks for your reply. Unfortunately my surgery doesn’t upload anything online. I’ve used those apps in the past when I was living elsewhere and they were handy. But on the plus side, it’s generally easy to speak to someone at my surgery and they are helpful so I am going to pop in today to see if anything more has been appeared by way of blood results… once the sun goes in! 😎
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I try to get a balance between reading up a bit on the tests and diagnoses, but also trying hard to distract myself with other things, because I can get very anxious otherwise, but everyone is different & has different coping strategies so I guess it's finding what works best for you.
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