Driving myself mad with blood results. If it turns out it isn't lupus what could it be?

[SpottyTeacakes]

Had some blood results back (just in letter form from a consultant who doesn't want to see me again).

It says:

FBC, ENA, Dsdna, C3, C$, C1 esteraze inhibitor, autoimmune profile, immunoglobulins, tryptase and total IgE are normal.

ANA highly positive 1.1280 need to be repeated with other tests to exclude SLE. Vitamin d deficient needs supplements two times a day for four months.

I'm a bit annoyed as consultant didn't tell me she suspected SLE (but the letter says she did).

I repeated the bloods today but the results can take up to two weeks. Will try and get a call from my gp but in the meantime can anyone help? I just want to know what the other options are really.

Evening bump...

What are your symptoms. I have lupus but always have normal blood tests. Its not unusual with Lupus.

Well I went to the gp with severe hives, think swollen tongue etc. That's controlled with antihistamines to a point, I'm still always itchy with nettle like rashes.

I don't really have any other symptoms that would warrant a doctor. I get aching wrists a lot and I'm exhausted (usually in bed by eight I've been out tonight though). I'm diabetic (type 1) and close family member has lupus.

I don't think it can be as I know how it can be but obviously something is going on.

Thanks for answering

A big tongue and wrist pain. Have you had your thyroid tested?

Umm I think they routinely do my thyroid in my annual checks. Tongue definitely due to hives.

Name changed! I was diagnosed with lupus last week after a high ANA blood test and also anti-DNA antibodies (I'm also long term hypothyroid and have low vit B12 and vit D which I take prescription supplements for ).

I was referred to a rheumatologist by the GP and he did a whole batch of blood tests similar to what you've listed as well as a physical examination and brain MRI. As I understand it (and I'm new to this myself) you have to have four of the list of lupus characteristics to get a diagnosis- it doesn't just go on the ANA blood test. There's a lupus UK website with the full list. I also have mouth ulcers, thinning hair, photo sensitivity and a facial rash. I think there are lots of autoimmune and connective tissue disorders that can also have similar symptoms and blood results so it's a matter of working out which applies to you which isn't necessarily straightforward.

Was it a rheumatologist that you saw? Was it him/her that took the second set of bloods or the GP? My GP couldn't diagnose me and isn't happy to make decisions about medication etc as she said it needs to be done by a specialist. Seems weird that you've been discharged if you are showing symptoms- did they mention referring you to anyone else? If it wasn't a rheumatologist see if the GP will refer you to one.

Hope you gets some answers soon.

BTW I have no idea what the blood tests you posted mean but I think the Ana being high is a sign. Mine started with fatigue long before anything else. I was convinced it was my thyroid.
Hope you get some answers

Thank you. I currently have a horrible mouth ulcer

It was an immunologist I saw and there was a blood form in with the letter so I went to the drs and had it done. My GP hasn't even got the letter yet but I'm going to ring tomorrow and ask for a referral to a rheumatologist. It's all very complicated isn't it

After my thyroid test was normal I went back to the gp who thought it might be fibromyalgia so I was sent to a rheumatologist. Unfortunately he's a numpty, but hey ho.

Coco. Sorry you have a rubbish doctor. I've always been quite lucky with my consultants me gp on the other hand...

The more I read the more I think it isn't lupus but that ana result is the second highest it can be. Stupid body!

My repeat tests clotted so I've got to have them done again meaning an even longer wait!

Hi spotty
I don't know much about grown up arthritis but I do know about childhood one as ds was diagnosed with it when he was 4. Thankfully now in remission and goes to gosh for yearly check ups now.

But just wanted to say that when he was in the midst of all the illness and symptoms like rashes and joint pain (occurring in different parts of the body but mostly in the limbs) the consultants were weighing it up between lupus and juvenile arthritis. In the end they diagnosed him with systemic juvenile idiopathic arthritis. It was difficult for them to diagnose as it turns out, it was more of an elimination game rather than a diagnosis if you know what I mean.

What I would do is bang on and on until you get an answer or someone who will listen. We were pushed around for 6 weeks and we were in many a&e rooms across the south east (and south west!!) until our local paed said something like 'mrs nk, I think it could be juvenile arthritis...' And I was really false she said that because that was what dr google told me!! Anyway, from then on, they took us seriously, she wrote a letter to gosh, who rang me 3 days later and we got admitted on the following Monday.

I now know that if we had faffed on for much longer, the damage would have been irreversible. Even the consultant in gosh was impressed with his progress.

I know you have the tenacity () from the other thread..l so please pursue this!

I will! I know how it all works as I work at a gp practice it's just the waiting for results that's driving me mad. I bet they all come back normal this time must have been really hard for you with your ds and like you say it's all just process of elimination.

My understanding is that a raised ANA shows only that you have antibodies, not why. SLE can be one of the causes. I had a raised ANA whilst in hospital with lung inflammation, but do not have SLE. The next step is to see the rheumatologist.

That's my understanding too. I just want to know what it could be hate all this waiting!

If you are already seeing an immunologist, the next step is to wait and see what they recommend. There is a large amount of knowledge crossover between the 2 specialties and you don't necessarily need both yet. The immunologist will be well able to interpret those results without another referral.

The immunologist doesn't want to see me again.

I as told that the ANA can be raised just because you have been ill and can also be raised in perfectly healthy people with have no illness. So it might mean nothing at all, or be a red herring so to speak.

Yeah it can be but this is a really high reading and I haven't been ill. It's often found in healthy people over 65 but I'm in my twenties. I guess I'll just have to see what the next result is.

I think the hardest part is waiting for results and all the wondering that's impossible to avoid. Did the immunologist explain. It seems odd to discharge you (I am not a doctor) but perhaps it makes sense to your GP? Hope you get some answers soon.

Thanks. I didn't even know the immunologist suspected lupus. She made it sound like she was doing standard tests but it would come back as idiopathic. It's only when I received the letter (I was CC'd into the one to my gp) that I found out. My gp wasn't happy with the letter as it's not particularly clear. The immunologist was a locum so the letter was written before the blood results were back and they were just stuck on the end!

It is very hard waiting for results. These would be standard tests for an immunologist and they probably wouldn't bother explaining each one to you. They do a job lot so he/she didn't necessarily suspect lupus, just did a bunch of standard tests. Am not surprised the letter wasn't clear either - they have a tendency to talk in code

It is excellent news that they didn't want to see you again though as it makes it more likely it's 'normal for you'.

It's also nothing to do with the original problem of urticaria which is usually a random thing - you have my sympathy as I had it for months driving me mad before it disappeared as mysteriously as it came.

Thanks. The letter said she suspected SLE and at the end it said further tests needed to exclude it. I really don't think it is but it's still annoying!