Hi
I had a positive result for ANA and the ANA pattern was described as pattern 1 - normal - no action needed.
I asked my GP to explain in an email and to give me values. I just phoned my GP reception as hadn't received the email so she read it out and said there is a high degree of false positive for the test. I wasn't given any values.
I don't know what to think. It was negative in 2016.
Thanks
The ANA can be positive in healthy people or people with thyroid disease or even during infection. So it is a not really a great test when taken alone. I sympathize with your confusion.
Maybe I can be helpful in describing how I understand it after many years. When the test is done when a person is strongly suspected of having lupus, it can confirm the diagnosis. Strong suspicion would be, I think, when someone has the signs and symptoms listed on the lupus classification.
It might help for you to look at the classification for lupus. Though they are not diagnostic criteria, they are still relevant.
These illnesses are very hard for patients and for doctors. Tests are not good enough to diagnose all patients.
Your GP can monitor you and refer you out. You need help and an explanation.
K
Sorry to butt in but very interesting to learn about thyroid disease influencing ANA Kay.
Mine was quite high in 2016 when I was diagnosed with Sjögren’s having previously been equivocal/ inconclusive. At this time in 2016 an endo has put me on a thyroid med called Lyrothyronine/ T3 and then lowered my dose of Levothyroxine. I felt awful once the latter was lowered and this was when my ANA was tested and came back clear positive at 1:320 with a nucleolar pattern.
Then an NHS endo took me off the T3 and raised my Levothyroxine and I felt lots better than I had for ages within weeks.
Since then my ANA has gone down to a low positive, dropping a titre at a time - it was last taken 18 months ago and was only 1:80.
I have often wondered if there could be a relationship between how well my Hashimoto’s is managed and how well or unwell I’m feeling overall - but never considered it might also account for my ANA titre as well.
My dose of Levothyroxine has finally been raised to where it was before I started having RA symptoms in 2011. I think I am feeling more energised and much less stiff. So I’m increasingly convinced this thyroid replacement dosage is really significant for me. But my GPs have all overacted to my TSH blood when it shows as very suppressed and insisted on lowering my dosage whereas I like it when my TSH is right down low! X
TT -
I actually learned it on this forum. I think someone with a positive ANA was told it was likely her Hashimoto’s and not lupus. Then, recently, I saw it on a list of things that can cause a positive ANA. I will try to find it for you.
Oh, I would think it is very important to keep that thyroid at an optimal level. My friend with Graves’ disease, who was treated by this prominent guy in the field at the hospital where she worked, still talks about how he always stopped her to ask how she was feeling and stressed the importance of how she « felt, » not just how her labs were.
You may continue to perk up as your thyroid gets better regulated.
You aren’t butting in at all. We are having a conversation!
XK
Yes i think it’s a shame that endocrinologists usually don’t know more about rheumatology and vice versa. The only two endocrinologists I’ve seen have both said that my main autoimmunity is rheumatic rather than endocrine. But I’ve never been at all convinced about them being seperated out in this way. Similarly I think vit D deficiency is very often a much bigger issue than most doctors concede.
I was really struggling with very uncharacteristic depression when I decided to stop taking methotrexate for a while. My feet were very swollen and my island GP was annoyed with me for this decision but I’d had enough of the SFN and Raynaud’s and meds.
So I asked him to test my vitamin D level but he refused saying that this far north all of us have low vitamin D and we adjust and blah blah - he said he’s dark skinned and spends the days inside so is much more at risk than me. Then he said that it’s such big issue for him because Orkney and Shetland have the highest incidents of MS in the world so of course Vit D has been a major suspect but had been ruled out when lower levels were confirmed in the southern areas of Scotland than in our islands. It’s an expensive test to run and he could see no reason to run it on me!
I was really baffled so I decided to get myself tested privately while away. I got my full thyroid antibody panel tested too. Hashimoto’s was confirmed although my antibodies weren’t that soaring. But the lab actually phoned to say that my vit D level was well under normal and my calcium level was too low as well. At same time a podiatrist looked at my very swollen metatarsals and declared that I needed steroids to get this down ASAP. I went back to GP with all this and he reluctantly conceded that I needed AdCalD3 and happily gave me Prednisolone. I can’t recall if the steroids worked as I was forced to go back on dmards by my rheum - but I do know that since taking AdCal D3 daily plus some extra D3 during the winter months I’ve never suffered depression or severe synovitis again.
However the swelling in my hands and stiffness returns whenever my Levothyroxine is lowered or needs raising.
FoggyMoggy I’m sorry to hijack your post with this conversation but I’m hoping it might be slightly useful to you and others here too perhaps.
That is a shame you had to test on your own. I am a little surprised because thyroid disease is common in autoimmune disease. Also, I thought vitamin D deficiency was common in autoimmune disease too. I have been monitored for both things and now take vitamin D and B12. I swear I got less loopy after my vitamin B levels came up.
Let’s hope you feel less fatigued on a higher dose of thyroid medication.
Hi TwitchyToes, yes had same fight to get Vit D on NHS and the same excuses about everyone being low and needing to take supps, even though mine's been low in the past. I do take a spray supplement with K2 but I also think there's a problem with absorption and also low Vit D can be an effect of some illnesses rather than a cause
Sjögren’s can cause all these symptoms you describe and facial rashes and can present as ME and FM. More often it presents Seronegative than Lupus.
Thanks Hidden . When diagnosed with ME I did ask to be tested for Sjrogrens among other things and he said it would be relatively easy, so not sure why I've not. It could be meds causing the rashes though since I have hyperhidrosis and the meds obviously dry you up, although I've been taking them for a couple of years but noticable rashes have only come recently.
Hyperhidrosis and the opposite are common with Sjögren’s too. Your dr was wrong - Sjögren’s is often hard to diagnose because 30% don’t have the blood markers and it can present in many ways other than the classic form of sicca syndrome. The only way to get diagnostic clarity - if bloods are negative - is take a biopsy from inside of the lip. This is how I was diagnosed having previously been diagnosed with RA.
Thanks Hidden . I'm sorry my post was misleading. I don't think the specialist said SS was easy to diagnose - just that the tests were quite simple but I have heard the best way is to have a lip biopsy done. How do they do that? Do you have to be referred to a specialist (what sort) and I assume they give local anaesthetic as a dentist would?
I'm also really interested in what you say about hyperhidrosis also being a symptom of SS. I have tried researching and have found very little apart from a thread on an Australian SS site where someone mentioned this in passing. I would love to know where I can find out more. The HH is so debilitating, I am virtually housebound because of it and it's worse in the winter. I would love to know the SS connection and the biology of why it occurs. Any information gratefully received 
I get spells of HH now during the summer months alongside Erythromelagia. You might want to look this condition up as it can cause huge sweats or none. I had a 24 hour pee test due to this in July to rule out something - not sure what. sruk.co.uk/scleroderma/eryt...
In Raynaud’s months I have none. Also the small fibre neuropathy and autonomic neuropathy combo are usually responsible for this symptom in people with Sjögren’s and with the other extreme. I guess I know because I use an international FB group for Sjögren’s and people often mention excessive sweating or overheating/ heat stroke because they can’t sweat. Or both extremes like me!🥴🙄
The lip biopsy was just fine for me and it was also definitive of Sjögren’s. It’s mildly invasive but I’ve had much much worse investigations and dentistry done before and since. Just a small anaesthetic and a few days recovery much same as a punch biopsy taken from anywhere else in the body.
Thanks Hidden . Yes most people get HH in the heat but mine's much better in the warmth which is counterintuitive, though there are other cold sweaters like me and others who sweat regardless. I was in a SS Facebook group - not sure if it was the same one, I think mine was for UK - just to see if HH was one of the symptoms but it all depends on the right people seeing your post at the right time.
I did have a 24 urine test for something a couple of years ago but think it was to rule out adrenal problems causing the HH. So do you think the HH is the flip side of the same problems in SS? That sort of makes sense. Mine is so bad, I am changing clothes a lot every day and sometimes in the night especially in the cold . A good day would be changing only 2 or 3 times. The worst day ever was when i had to change 27 times (when I had a cold a couple of years ago). That was an extreme but I have had 10-15 changes now and again. You can imagine why going out anywhere and especially in the cold is an uphill struggle. usually taking 4 or 5 changes of clothes is enough for a short trip and if I've taken meds. Anxiety and exertion are also triggers.
I've not had a biopsy before so not sure how a punch biopsy feels!
Anyway thanks for the link, I did just have a look. I must say though that I don't feel burning or tingling. My skins feels cold and damp. So I just sweat in response to the cold most of all. Not saying I don't sweat e.g. when had a cup of tea but the cold is far worse. People feel my skin and it's cold, damp and clammy.
I did get sent a lot of stuff from the SS society - can't remember the full UK name, but HH wasn't mentioned much if at all.
Maybe because most people with Sjögren’s have a kind of relapse remit type that doesn’t cause extensive neuro symptoms. So it’s mostly dry eyes and mouth, flu like ache and severe fatigue and it doesn’t usually degenerate beyond these for the majority.
Excessive sweating or not being able to sweat, if it’s not hormone related, is usually autonomic neuropathy. This can be associated with Sjögren’s, Lupus, FM and ME as I’m sure you are aware. hopkinssjogrens.org/disease...
“What Other Neuropathies can occur with Sjögren’s Syndrome?
1. Autonomic Neuropathy
Sjögren’s syndrome can cause nerve damage which regulates the coordination of heartbeat, respiration, and gastric motility. This is called an “autonomic neuropathy.” Examples of symptoms include lightheadedness when standing, decreased or increased sweating, and feeling full despite eating small meals. The diagnosis of autonomic neuropathy should be made by a neuromuscular specialist.”
Thanks Hidden - my ENA was negative. I understand that can flag up Sjrogrens? So not sure whether it's that or not.
My ENA is negative for Sjögren’s but weak positive for limited Scleroderma. However my main rheumatic disease is Sjögren’s so far. As you know I was diagnosed by lip biopsy.
Strange as mine is negative with antibodies for thyroid xxx
Yes but some have ANA and thyroid antibodies but no autoimmune diseases where others have the opposite. For me it’s about my free thyroid hormone levels and it’s about how high my TSH, FT3, T4, CRP and PV/ ESR are because these directly coralate wjth how symptomatic I am. So - in my case these should dictate treatment - not antibody levels. The only chance we have to improve symptomatically is by getting to know our own normal levels of bloods and learning to match them up with our symptoms.
We can’t do this without good doctors who choose to believe, trust and empower us to be proactive - if we are physically or mentally well enough to - which most of us here are. If we can post here and comment then we can surely learn to match our symptoms with our signs.
To me it’s all about learning to trust our instincts - like any really good detective. Bad doctors call this “health anxiety”, good doctors realise we are just doing our best to get ourselves well and will try to help us in our efforts! X
Btw, my thyroids (all of the main ones) are normal and have been tested for Hashimotos before.
Well that’s one good thing at least!
TT is my go to for thyroid.
No test has shown anything wrong with my thyroid. I watch your posts and TT close so I know what I’m looking for.
Thanks Fog for the side road. 😘
Eek please don’t expect much of me on thyroid stuff Doaty - I’m okay on Sjögren’s and things vascular. But not so great at all on thyroid despite having had Hashimoto’s for nearly 20 years! I really struggle with endocrine stuff - no head for numbers. I just about grasp mine but that’s it!! X
Thankyou for this info because I also have been diagnosed with lupus but think that the hashimoto causes most of my problems. Interesting. First time I had heard that there could be a relationship between hashimotos and ANA
Your doctor may think in your case the ANA is a true positive. You probably have other positive specific tests and symptoms. But, yes, it is important to to make sure your thyroid disease is optimally treated.
I am no expert on the complicated ANA test. Looks like it also depends on the way the test is done. What we know is that not all positive tests are true positives.
Hope your symptoms improve!
Hi KayHimm, I asked for the test because of rashes on my face and also have FM which has many overlapping symptoms with Lupus. I have had pleurisy years ago, suffer with ME/CFS and have always had mouth ulcers, migraines, pains etc
It certainly makes sense that you wanted to be tested. The symptoms of lupus can overlap with many illnesses. The ones the doctors look for are ones that indicate symptoms that are specific to the disease. As an example, I get canker sores and have UCTD. My ulcers are not the kind typical of lupus. So my mouth sores are not counted in my symptoms. I am using my own example to help you see how the doctors have to view each symptom and lab test carefully. I have some rashes that are consistent with my autoimmunity and some that are from photo allergy. It gets harder and harder!
You might want to ask about the pleurisy and take photos of your mouth sores. Migraines are a whole complicated issue. Lupus experts are still trying to sort that out.
It really is confusing, particularly for patients when they see so many similar features. It may help you to listen to a video by a lupus expert to hear what they look for and how they diagnose. It feels very different than when you see a list of symptoms or « warning signs. »
Hope that helps. Most important thing going forward is to report new symptoms. These illnesses evolve over time.
K
Thanks KayHimm . Yes problem is these symptoms e.g. migraines are associated in so many overlapping conditions, same with fatigue and pain. The rheumy who diagnoses me years ago with FM said he didn't think I had Lupus but he didn't even test for it.
Well, a rheumatologist may not feel the tests are helpful unless there are certain symptoms. I know that may not make sense to us, but they learn the clinical picture and when to do labs. If a patient does not have the clinical picture, then they would not diagnose lupus even with certain positive tests like ANA. Confusing, right?
The best thing to do is go over each of your symptoms with your doctor. They can explain better what each may mean.
Another way to think of it is that to a doctor lupus is a disease that damages organs and blood through inflammation. That is why you see lots of symptoms with « itis » in them. They look for pleuritis, arthritis, pericarditis, dermatitis, cerebritis.
I know it is very confusing, particularly because autoimmune diseases share general symptoms with other illnesses.
Do you have someone treating your fibromyalgia? This is a debilitating illness. You need and deserve help.
Thanks KayHimm - yes I have some arthritis (but osteo after a bad ankle sprain which is actually a small break in one of the bones), and possibly dermatitis. Some bloods did show small inflammation e.g. Reactive C protein that I had privately but it was only just high. This may sound strange but I do feel sometimes that my head is inflamed, e.g. tender spots on the scalp that are really tender and sore. Sometimes they go into a migraine.
No, I don;t have anyone treating fibromyalgia as it encompasses so many symptoms as you will know, so the various symptoms get treated e.g. pain as and when it occurs and it's hard to treat the fatigue. The hyperhidrosis which seems to be separate (and could be a form of dermatitis but only in so far as it affects the skin) is the symptom that has one of the worst affects on my life
When I last saw a physio he did say he would re-refer me to the rehab time re my FM but I've not been able to get back to the physio as other health things have taken priority
I really do feel for you. Your symptoms are very hard to live with. Whatever the diagnosis, don’t minimize what you have. Get treatment for your current fibromyalgia and migraines. Both of these illnesses can be debilitating.
Good luck with all of this.
K
Thank you kindly KayHimm . I can manage the migraines with medication although one of the side effects is hyperhidrosis which is one of my worse symptoms. I can manage the fatigue in my way. It's just a managing of trying not to overdo it and resting when I can. Often easier said than done! X
My ANA was negative for 20 years unless I was flared up. Now it’s almost always positive. Treat the patient not the test.
Best of luck to you
Doaty
Thanks. My ANA was done in 2016 and negative but I asked for it to be done because of rashes on my face, plus I was diagnosed with FM ten years ago and ME/CFS last year
ANA alone can't predict u as a lupus patient. I had to go for something called ANCA and CANCA test. Later, a biopsy confirmed that I was having SLE-vesculities... My experience and information tells me that lupus shows up it's symptoms quite late. So, consult the right doc who could actually help u the exact problem ASAP... Hope that u find your ans soon.
Thanks Putloo. I asked for the test because of rashes on my face and also have FM which has many overlapping symptoms with Lupus. I have had pleurisy years ago, suffer with ME/CFS and have always had mouth ulcers, migraines, pains etc
It’s amazing what doctors don’t know about migraine. I mean, it’s in the studies and patients know it, but doctors don’t. I work in neurology and have migraine syndrome. Sometimes I have to take a migraine pill just to find out a few hours later it’s lupus symptoms.
My point is it’s hard having concomitant diseases. Sending you strength and peace.
Doaty
Thanks Doaty. Yes migraine seems to be a part of so many similar conditions too like FM and ME. GPs do treat each symptom separately which is why I would prefer to have a specialist who will looks at them all in the round. Blessings to you
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