Can anyone give any insight on my possible lupus diagnosis?

[rosael56]

Hi! I'm new to this forum. I've been unwell now for nearly 2 years. Mainly fatigue, but also dizziness, brain fog, malaise, joint pains etc.

I was diagnosed with autoimmune hypothyroidism a year ago and treatment has made no difference. I was also diagnosed with POTS (dysautonomia) in the summer. But despite treatment I still have many symptoms, and many of them don't fit the conditions I am diagnosed with.

So my GP did some more blood tests and I got these results:

ANA 1:80 homogeneous

ENA positive

Anti-dsDNA 36.5 (>35 positive)

My GP suggested Lupus based on these results. I am now waiting for rheumatology.

I just wondered if anyone could give me insight on my blood tests? I'm aware my ANA and dsDNA are fairly low positives, but could I still have Lupus?

I do get some symptoms which fit for it. I get flare ups of joint pain in both my wrists at the same time, which is so severe I have to wear wrists braces for a week or two until it passes. I have horrible fatigue, I often feel achy/malaise as if I have flu. I have had painful swollen lymph nodes a couple of times for no apparent reason. I have hair loss, bladder issues, stomach issues. So far I HAVE NOT had any rashes or fevers.

Thank you for anyone who has read this/any replies!

[KayHimm]

Rosae -

The most important thing to know is that the rheumatologist will take everything in context. This is the art of medicine as well as why their three additional years of training is necessary to diagnose these conditions.

You may have a low titer ANA that would be seen as insignificant in an older woman with known osteoarthritis. But your low positive ANA could be viewed as significant if you are a young female with joint pain.

Everything will be sorted out. Did your GP see your joints when flared up? Any noted joint tenderness or swelling would be important. You may be able to have an ultrasound at some point to detect swelling.

Dysautonomia would be noted but hard to know what rheumatologist will do with the information. Even in people already diagnosed with autoimmune disease, they tend to say “dysautonomia possibly related to autoimmune disease.” At least that is the case with me.

Do you have photos of your hair loss or a doctor’s description? That could be helpful.

I can hear you have had a very rough time. Your many symptoms of fatigue, brain fog, and flu-like aches are very important and need to be expressed. They are not specific to any one disease so other things that are specific have to be focused on.

The antibodies from your ENA test are also in the picture and will be interpreted.

Good thing your GP referred you to a rheumatologist.

Best of luck.

Kay

[rosael56 in reply to KayHimm]

Thank you so much for your response. I am a young woman (34) with joint pain. I get flare ups of pain particularly in both wrists at the same time, which seems to come out of nowhere. Then it goes away suddenly and I will have periods of time with no pain. So it feels like it's autoimmune in nature due to the pattern. Unfortunately my wrists weren't flaring when I saw my GP, so he wasn't able to inspect for swelling.

As for hair loss, I do have photos. But its also just obvious from looking at my hair.

I wish I had more concrete symptoms, like fevers or rashes as it seems my case is quite vague.

Thank you for your input x

[KayHimm in reply to rosael56]

You do have concrete symptoms like your hair loss and positive blood work. Many early cases of autoimmune disease present with vague symptoms. Trust your GP. Be prepared not to get a definitive diagnosis from the rheumatologist. They seem to like to watch some mild patients for a while and putting them on medication with few side effects. They have different ways of expressing less clear cut cases - borderline lupus, probable lupus.

Have your questions prepared.

Keep us posted.