I don't have lupus - at least I don't think I do,never looked into it properly to be honest - but thought I'd post this on the lupus board as I know ANA testing is often connected to lupus and someone here might be able to help me understand. I normally post on the Thyroid board as I suspect that is what is wrong with me. I'm still undiagnosed but have climbing tsh and thyroid antibodies which might indicate Hashimoto.
A few weeks ago my mother found my medical records from my childhood. I used to live in Italy at that time but I am now living in the UK. When I was 12 years old I developed a low grade fever,tiredness,fatigue.This was a couple of months after I'd had mumps. They tested lots of different things and amongst them there was this ANA 1:80 weak positive - speckled. I know that ANA is to test autoimmune diseases but what I don't understand is why I was just sent of my merry way if it came back positive. Was it perhaps that it was a weak positive? Anyone had similar results?
The conclusion of all the tests was that I had a fever that they couldn't explain and that it would pass on its own...and it did. But now I am left wondering if it meant anything. I don't think I have had ANA tested since then so I might try to get my gp to test it to see if it's anything different over 25 years later!
Any help would be much appreciated
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chihiro
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Hashimotos can be part of autoimmune disease. I first presented with thyroid issues which led to removal of the gland. I associated all my health probs to it, and was well for a year after. I also had a weak positive ANA at that time. Unfortunately, my thyroid started growing back and I had a 2nd removal. I never really went back to full health. I gained more lupus type symptoms and was eventually diagnosed. I think the reason you were left at 12 years of age, is probably because you got over your illness at the time. Sometimes Drs do adopt a 'wait and see', approach. I have a cousin who was told in her 20's, that her bloods showed lupus. It was 30 years later that it became active. Your Drs probably didn't want to 'label' you at a young age and give you potent medication. Sometimes ignorance is a good thing if you are well. There are many autoimmune conditions. Rheumatoid arthritis has a positive ANA, so it could be something else. It's not a bad idea to get it tested again, to see if the titre has increased. But for a lot of people, they always get a negative ANA and you may still get this. I have had lupus for 15 years, and only ever had 4 positive tests. Hope this helps.
So if I understand what you are saying ANA isn't a reliable test and even if you have an autoimmune disease you could still get a negative? Can you get false positives?
I totally agree with you that what happened when I was 12 was a wait and see approach and perhaps the mumps had something to do with it after all. The other possibility is that at the time I was being treated for growth problems with growth hormone injections and perhaps the medication gave a false positive. Is that possible?
I've just had a quick google of hashimoto and ANA and it appears that people with Hashi can have positive ANA results so now I am starting to wonder....hmmm
ANA is non-specific for lupus, anything autoimmune related can show positive ANA, even healthy people can have positive ANA. If a patient has mild and self limiting symptoms coupled with a low titre (as you had), the presumption is against lupus. Once ANA gets into higher titres, then the doctor will start looking closer at the symptoms and a possible lupus diagnosis. But there are many autoimmune diseases in between, thyroid being a possibility.
The problem with having a diagnosis is that all symptoms get put down to it. If you're noticing new symptoms that don't add up with what you expect, do insist on being checked up for other autoimmune diseases, these things tend to come together. If there are no symptoms, your GP might be reluctant to start testing - mainly because testing isn't always clear cut and could create more worry than necessary.
Even if your episode when you were young was lupus, if you have no symptoms now, then I'd leave it alone to sleep! It might never wake up, fingers crossed.
Hi Purpletop thank you for replying and explaining.
It seems to me then that maybe testing ANA is a bit of a waste of time if it can turn up positive in healthy people and can be negative when you actually have lupus. How confusing!!
I've just been looking at my medical notes again and trying to decipher them as not only am I up against medical lingo and I also have try and find the English equivalent LOL
An DNA was negative which I think I have read to be a more specific test for Lupus, is that right?
ANA 1:80 positive speckled
IgG 1020 (726-1085)
IgA 79 ( 70-229)
IgM 71 (35-72)
Any idea what these results mean?
The other note that was made is that at the time I was on growth hormone injections. For some unknown reason my body was producing growth hormone but not using it.
Not using the growth hormone sounds like something to do with your pituitary gland. Have you had any ct scans done at the time?
Still, if you've developed normally from that stage on, then I suspect things have regulated themselves with the added artificial hormone.
Your results above only show a weak ANA with immunoglobulins within range. The later would increase if inflammation or infection is present in the body. Lupus sufferers tend to have those out of range when disease activity is high but not everyone. Yours above are normal, so no worry there.
The symptoms you mentioned suggest thyroid issues (the feeling cold, cold extremities, tiredness, hair loss, pins and needles) although the joint pain and the randomness of your rashes seem to suggest another autoimmune disease, not necessarily lupus.
So although ANA is non specific, in light of your current symptoms I'd ask for it to be tested but I suspect your GP will do that anyway.
Go prepared when you see your GP - explain how long you have had each symptoms and at what degree of intensity. Just listing them to him/her won't be enough.
Not sure if I had scans but have a feeling I probably did. I remember lots and lots of blood tests, some where I had to stay in bed for hours whilst they came and drew blood every hour or so. I remember having lots of x rays but my memory is quite hazy when it comes to all of this as I hated every second of it.
I don't have access to all results but I know a few of them because they were included in their report when they decided to put me on the growth hormone injections. It says that my body was producing normal amounts of GH, that my thyroid didn't seem to be a problem and that they couldn't explain why this was happening but a trial of GH injections would be advisable. It worked, my body started growing again and after two and half years I stopped the injections.
GP is screening me for CFS so lots of tests will be done in the near future. I'm hoping that amongst them there will be ANA but if there isn't I am planning on bringing up this result from my childhood.
I'm quite happy with the idea of not having Lupus. Now that I have done some reading about it I can see that it pretty much sucks and I really feel for all those that have it. Getting a diagnosis sounds even harder than getting a non-straighforward thyroid disorder diagnosis. As I said in a previous post I am starting to wonder whether it is possible that I had initial stages of Hashi back then. The first stage often doesn't cause symptoms but blood tests can show signs of it. I don't know if my thyroid antibodies were tested at the time but I am trying to find out if I'd be able to access all the results from that period in my life, just takes a while as I am not living there anymore!
Will certainly update when I have more news. Thanks again Purpletop.
Hi chihiro, yes some auto immune conditions have a false ANA reading for lupus certainly. I'm not that knowledgable on all this. Don't laugh but I'm sure I read somewhere that lupus patients can have a, false positive for syphyllus !!!!! If you don't have any other symptoms like joint pain, fatigue, etc.., then I wouldn't worry too much about it. Hashimotos is enough to deal with. Purpletop, who also replied, is much better to explain the proper medical facts. I'm sure she would reply to you again. Take care.
Thanks again 6161. You do know that when you tell someone not to laugh it is most probable that they will
I do have symptoms and I am still trying to figure out what is wrong with me. I dont't have a diagnosis yet and still fighting with the doctor to be taken seriously.
Symptoms are: fatigue, joint pain that comes and goes in knees,hips,fingers,toes, 24/7 pins and needles in feet and hands, cold extremeties and feeling cold most of the time, hair loss, orange tinged hands, random swelling of fingers and lips (especially the outline), faint upside down triangular shaped red areas on my cheeks more pronounced on one side that comes and goes especially in the summer. TPO antibodies have gone from top of the normal range to triple that amount in 3 months and my tsh has also increased but still in range. This is why I am suspecting Hashimoto.
I also seem to go through periods where I have a low grade temperature that I can't explain and goes away on its own similar to what I had at 12 years old. When I get this I will feel run down and achey.
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