I've had quite a few symptoms of what my GP suspects might be a CTD, spanning back about 10 years but lots more cropping up more recently.
She's requested (I think) an ANA test and I understand from googling that if the ANA is positive it then gets sent for ENA testing as well?
I'm not sure what the process is but it's been 2 weeks and I've still not had any results which is just driving me insane. The GP receptionist confirmed today that my blood samples are still showing as 'arrived' in the lab and suggested I wait until middle of next week to call again. She did say that immunology bloods do take a bit longer than others but I was also previously told it would be up to 2 weeks, so I don't know how much longer it can be!
Does anyone know if there's any kind of standard time frame for these? I'm wondering as well if, as it's taken so long, does that mean it's been sent for ENA testing too, as the ANA was positive? Or can it actually take more than 2 weeks just for an ANA test? Can I infer anything from how long it's taken?!
I literally spend half my days thinking about it, googling it, refreshing the NHS app and to be told it could be even longer has really thrown me off. I feel like I'm so close to a diagnosis after being dismissed for years over my symptoms ("you're just depressed", "it must be stress", "eyebrow loss does just happen" - to 27 year olds?!) and the wait is just killing me. Also absolutely terrified it'll all come back normal and I'll be back to square one!!
Thanks in advance x
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Helzipop
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These are usually fairly specialised tests and most labs save them up to do in batches for several reasons, not least being that a decent size batch means that any problems in odd samples are more obvious. The controls and standards are the same whether they do one patient in a run or 10 - so there is also a financial implication too. Different labs have different timetables and if your sample arrived a day or two before a "run", you would see the results sooner than if they had arrived the day after. After the batch has been run, they must be reported and signed off.
We are getting into the time of year where the NHS is making sure everyone gets their unused holiday allowance used up - and the specialist technologist for a given test may be on holiday or there may be other reasons for delays. There are a lot of staff shortages too at present and things take longer. Be patient - better the tests are done properly than rush them or someone less skilled does them just to fill in.
Thanks for this, it's really helped to understand how the processes work and not to try and predict results before they arrive! You're right, I'd definitely prefer the tests are done correctly than rushed, I guess I'm just struggling with the lack of information.
I did not get my test result until the nurse practioner who ordered them was back at work. Her colleagues would not cover as there was one positive result.
ENA is usually done at the same time. The person who ordered, saying what to include in the screen, if ANA is positive. The anti-dsDNA (significant in the diagnosis of SLE) is not in the ENA screen, but is usually done in parallel.
Hope this helps
Try not to worry either.
I was diagnosed with Undifferentiated Connective Tissue Disorder (UCTD) after ENA screen and anti-ds DNA came back negative.
If you see the right rheumy treatment is similar.
Blood test results can change with time. Different test centres can use different methods and cut-offs too. Doctors know this..
I've had a mildly low WBC two months in a row (3.7, minimum in expected range was 4.0), with mildly low neutrophils and lymphocytes. Otherwise all my bloods came back normal. The doctor just signed the second blood test off as 'satisfactory' despite suspecting a CTD and that the second test was ordered specifically because of the first low WBC. I hadn't been ill for months leading up to either test so it seems odd not to consider it but I'm obviously not a medical professional.
My other main symptoms are fatigue, eyebrow loss, brain fog, depression, anxiety, brittle nails, dry hair and some weird skin on my face. For quite a while I've been convinced I had a thyroid issue as the eyebrows thing is quite specific hypothyroidism and the other symptoms seemed to fit, but the tests always came back negative so I started looking at what else could look like hypothyroidism and came across lupus. Which is when I started to realise that my cheeks getting sore from the sun and pimply no matter how well I'm eating, may actually have been a malar rash the whole time. It started about two years ago and coincided with a time when I was eating a lot of pizza 😆 so I'd assumed that was the problem and started eating more healthily, but it never went away and regardless of suncream it always feels like it's burning when I sit in direct sunlight.
It's really hard to stay objective with these things though, I'm desperate to find an answer and it's very easy to make a disease fit with your situation. I don't have many of the 'usual' lupus symptoms of joint pain or kidney involvement, and I've previously convinced myself that I had a thyroid problem so I'm definitely capable of doing it here too. But then lupus affects everyone differently so it's possible.
Hopefully will get some answers in the next week. It seems mad to say it, but I'm actually hoping I do have lupus, just so that then perhaps I can start a treatment plan and finally feel myself again!
Also, though ANA is used as a screening tool, this is discouraged by rheumatologists. The doctor should suspect a connective tissue disease before ordering it. So if your GP told you he suspects a connective tissue disease, he likely has evidence. I was thought to be showing autoimmune tendencies as per rheumatologist even before ANA was done. So try not to see the ANA as a yes or no.
Try not to worry, easier said than done, I know. I had loads of bloods done on the 11th of this month. Some results came back the next day but others in drips. I am still waiting for the results of others. It is incredibly stressful to have to fight for recognition of our symptoms and having a label does somehow help. I have Lupus Lite UCTD. This GP seems to be on the ball, which is great. Do let us know what happens if you feel able and hope you get some answers soon.
It’s most frustrating! I had an ANA and ANCA test done on the 2nd of January, both positive but it says ‘MPO patterns found in ANA positive serum. ANA test to follow’. The results have never arrived and my gp said that all was ok and that with my results they wouldn’t follow up with further tests and that I’d have to go privately if I still suspected Lupus.
I'd not even heard of an ANCA test so I just googled it! So your ANCA results came back and said they would do an ANA also but they never sent the results?
Hi Helzipop…. I know how you feel, I had a whole batch of antibody tests November 15th and they only came back on Tuesday so that was over two months , I now have them apart from the ANA which is still saying ‘no result’ in my patient knows best account, it’s so frustrating 😫! I did put a post up the other day about them as they were in an odd format with no reference ranges 🤦♀️.
Hope it’s not too much longer before you get yours and you get some answers 🤞x
I feel for you so much, two months is a mad length of time to wait for results!! Have you got an appointment to talk through your results with your GP? I had a look at them and they make zero sense to me!
They were ordered my rheumatologist, I have UCTD with secondary Sjögrens and they check my bloods every so often but this time just seemed to be a silly amount of time to wait for results! I’m seeing my rheumy in a couple of weeks. I don’t have internal organ involvement but more recently I’ve had a positive lumbar puncture showing systemic inflammation and inflammation of the CNS , which could be CTD related, I’ve yet to find out. It does get to you when you’re poorly for so long and and don’t have answers so it’s completely understandable saying you hope it is Lupus, there are a few other CTD’s. I do hope your test results give you some answers. Keep us posted when you get them, would be interesting to know how you get on.
I was told to always have my blood tests done three weeks before my rheumatology appointment as the ANA test can take longer than the rest of the blood results. I've been to appointments and although FBC etc were back the ANA and DS DNA we're still not back.
That's really helpful, thank you. It seemed like such a long time but it's sounding more and more normal now! If I'd known upfront it would be so long it would have made it easier, but initially I was told nothing and just saw the other results popping in on the app, then when I asked about the ANA they said '7 working days' then it was '2 weeks' and now it's essentially 'how long is a piece of string'.
Just to clarify, do you mean some appointments you've not had the results even after 3 weeks?
I know that problem of assuming a symptom comes from something else that is happening at the same time. I agree it doesn’t sound like the pizza. Did you tell the doctor the rash was sore and came out in the sun? Do you remember feeling other symptoms after sun exposure?
I can certainly see why your GP is doing tests with your photosensitivity rash and low white count and fatigue.
I definitely told my doctor about the rash and fairly sure I mentioned it was sensitive to sunlight, but I can't see that on the notes she's made so I'll mention it next time to make sure it's recorded.
I totally agree with you. It’s a sad state of affairs, the NHS is on its knees and the government plans are just to force us all into seeing private doctors.
I think you have a really good GP and I bet he will be watching you no matter what the ANA results are. He still has to be able to explain to himself why a young woman is not feeling well, has a low white count and is losing her eye brows. Not sure how that would be approached.
Maybe that is not comforting. Just thought it might help to know you will be cared for no matter what. Deep breaths.
I really hope so! I was definitely prepared to be fobbed off again so it was really good to hear there was something new to test rather than just rechecking my thyroid or just telling me I'm depressed. I know I am, but that in itself could be a symptom of something else...
The skin thing is like lots of raised little bumps sort of between my eyes and hairline. It looks a bit like a rash as some of it is pink, but in other areas the bumps are all skin coloured and more sparsely spread. For ages I thought it was some sort of eczema or dry skin (it's hard to see it properly in the mirror!) but it doesn't respond to any kind of moisturising or creams at all.
Thanks to everyone who replied. I've finally got some limited results, took 3 weeks in the end!
I've been told I've tested positive for anti- Ro52 and anti-LA on an ANCA test but nothing more yet. Have a telephone appointment with my GP on Tuesday afternoon to talk it through, but according to the receptionist they've said it's "quite normal"?
I've had a quick Google and it seems the combination of those antibodies is more likely with Sjogren's Syndrome, but with the photosensitive rash and eyebrow loss that points more towards SLE. Would love to hear your thoughts!
Have to say I'm feeling validated at last, finally a test has come back which shows I'm not going completely crazy. Although now I'm worried my doctor doesn't think it's a big deal if it's considered "quite normal"...
I would wait for your telephone call to draw conclusions about “normal.” Things get lost in translation. As I said before, your GP was already suspicious of autoimmune disease. Having these antibodies come back positive would seem to validate his concerns. They look at the total picture. I think you must have had a positive ANA to get these positive specifics antibody.
Only a doctor can really pull it all together. Your GP may want a rheumatologist to make the diagnosis.
I have positive anti La antibodies with lupus-like autoimmune disease. My symptoms are similar to yours.
Hang in there. Good you will talk to your GP soon.
Just to update anyone that's interested, I had a call with my GP yesterday and she's decided to refer me to a rheumatologist. No idea how long it'll take but I'm very glad!
Turns out my ANA result was 1/640 and I was positive for anti-Ro52, anti-Ro60 and anti-La, with anti-Sm 'equivocal'. From a bit of googling I understand that to mean somewhere between positive and negative, but not completely sure.
Sure it'll still be a few months before I get an actual diagnosis but I'm feeling a bit better knowing it's going somewhere.
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