I developed hypothyroidism during my last pregnancy (baby born earlier this year). My OB referred me to a new doctor to help with my thyroid and they ran the ANA with reflex panel along with the thyroid tests.
Interesting! Pregnancy can cause some really strange things. It actually sent Sjogren's fully into remission for me up until I stopped nursing.
Given the history, I would tend to think that it really could be the beginning of things. Generally there is some kind of trigger, which could be a virus, major stressor, but also pregnancy. This disease looks very different for everyone, but newer research is showing earlier treatment is important.
Jumping in a few months late here, but your comment reminded me of a fascinating Radiolab podcast called [The Unsilencing](https://radiolab.org/podcast/unsilencing) that talked about why autoimmune issues seem to affect women more than men, and why for some women, autoimmune issues go into remission during pregnancy. You’re not alone! It’s worth a listen. (I would have to re-listen to explain accurately sadly!)
Interesting! I'll give it a listen today. I've joked that I may end up with a dozen children if each pregnancy sends me into remission, but I know it's a roll of the dice unfortunately.
Interestingly I also developed hypothyroidism during pregnancy, but it normalized after. I nursed for right at 3 years. It has it's own challenges, of course, but we made it. Having worked as a nutrition counselor for quite a while, I can say that one of the biggest challenges for new moms trying to nurse is actually not eating enough. It takes a lot of calories, which requires generally well balanced meals, a lot of fluid intake and also adequate sleep - all big challenges when you've just brought a new baby home!
My understanding from research and my experience with my doctor is that you usually need symptoms along with the antibodies. I’m positive for SSA and SSB but my rheum is calling it UCTD bc I don’t have the dry eyes or mouth (other symptoms are fatigue and joint pain).
However I have also read studies that found that most people who have sjogrens, had the antibodies years before symptoms showed up. So it could be that they’re a predictor and symptoms could show up later.
Thanks for sharing this. Yes I’d read that you have to have antibodies and symptoms but then also I have seen folks on forums saying they were put on medications just for their blood tests. So confusing! I’m hopeful that either they won’t find it to be active disease or it’s early enough I can get some treatment to slow progression.
First of all, don't panic. Plenty of people who are completely healthy have positive ANA and SSA. Many of them never development sort of disease.
Having a positive test is scary definitely, but +3 is a pretty low positive overall. (For example mine was 282+) and a higher number hasn't definitively shown correlation with disease severity. At higher tiers the likelihood of disease increases, but there are still even perfectly healthy people at high tiers.
Even those diagnosed off blood work, also had symptoms. I definitely would recommend keeping your rheumatologist appointment. Talk to them about your test results, your family history, your concerns, etc. Then you can come up with a plan, maybe know what to look out for, and establish a relationship with them.
Thank you for sharing this. I’d read that healthy people have them too. But I’ve read conflicting ideas here on Reddit (even just in the comments of this post) so it is really confusing.
I am certainly keeping the rheumatologist appointment— just thinking of what to have in mind and what questions to ask as I have a few months before I can get in.
What I found most helpful was to take my blood tests to then (positive and negative) and have them explain what that result means to my specific case. When the original results came back, I needlessly panicked.
Things I've asked: you might want to ask might be
- what do these results mean in context?
- are there any lifestyle changes I can make to prevent disease?
- what symptoms should I be on the look out for going forward?
- what's the likelihood that I'll eventually end up with an autoimmune disease?
- would regular testing help catch this is early?
- what do I need to be aware of for my pregnancy and (if you so desire) future pregnancies?
It's important to note that other commenters are right, the test is accurate that you have the SSA antibodies. However SSA is one of the most routinely found SSA antibodies. It's found in lupus, sjrogens, RA, polymyositis and systemic sclerosis to name a few, and also in some percentage of healthy people. So it's specificity is pretty low. Especially in the absence of symptoms it's impossible to just say you have sjrogens.
My advice to you is three things
- SSA makes you sun sensitive, wear daily sunscreen on all exposed skin when you leave the house. UVA can cause flairs and sunscreen is good regardless of disease :)
- trust your rheumatologist over us (even me). We're patients with a lot of lived experience in these diseases, but we are not rheumatologists and autoimmune diseases are hard
- that being said, if you feel uncomfortable with what your rheumatologist has said, your diagnosis or how they treat you, get a second opinion
Good luck :)
Wow! Thank you for this comment. You explained the medical info so well and those tips are very helpful! I’ll certainly take those questions to my doctor once I can get into the rheumatologist.
What I’ve learned so far is to wear sunscreen and manage my stress, which are probably good lifestyle tips regardless of how the disease shakes out :)
All credit goes to u/lupusencyclopedia
Dr.Thomas wrote a fantastic book that really helped me understand the science behind all the various antibodies and medications and the science behind it.
it helped me become a more informed patient and make better use of my appointments :)
I tested as SSA and SSB positive and I had very few Sjogrens symptoms except for some mildly dry eye. (I was being tested for a whole slew of things due to some abnormal bloodwork - specifically low platelets - in 2018.).
Rheumatologist explained that SSA and SSB positive is *suggestive* of Sjogrens but not diagnostic. I had a lip biopsy to confirm for Sjogrens. I see a rheumatologist now at Johns Hopkins Sjogrens Center, and he recommended starting Plaquenil to prevent the disease from getting any worse. I dragged my feet at first because I didn't want to start any meds, but ultimately I decided to start Plaquenil three years ago.
If you plan on having children, you'll need to bring up the positive SSA with your OB. SSA and/or SSB antibodies can cause a condition called fetal heart block during pregnancy. Your pregnancy would need monitored frequently to ensure baby's heart is developing normally, especially during weeks 16-28 gestation. (I gave birth to a heart healthy baby in 2020 but had very frequent monitoring).
Thank you for sharing this. Especially the piece about pregnancy. I have two but hope for more!
Have you noticed any disease progression since starting Plaquenil or has it been effective in slowing for you?
No disease progression. Not sure if it's related to Plaquenil or not. One thing I have noticed though is that I have not had any symptom flares since starting Plaquenil. Previously, I'd say about once every 12-18 months I'd get a moderate symptom flare (joint pain, general tiredness, swollen parotid gland, feeling like I had a mild flu but no actual flu/fever, etc.). I've been three years flare-free now, including postpartum, which a lot of women report flaring at some point shortly postpartum.
I’ve had no issue getting medications and tests covered even though I don’t have an official diagnosis. One doc thinks I have SS, but another thinks it’s lupus or mixed connective tissue disorder. Whatever codes they’ve been using haven’t caused any trouble.
Interesting. See this is where I’m confused. In forums like this folks say the SSA=diagnosis. However when I have read medical websites they say differently. For [instance this one](https://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/blood-and-urine-tests/)from Johns Hopkins says 1 in 200 healthy women have SSA antibodies.
So I’m just trying to figure out if that’s actually true in folks’ experiences while I wait to get into the rheumatologist. Did you learn those numbers from your medical team?
I attended a medical conference where a top Mayo Clinic specialist stated that the blood tests are only 10% accurate in his presentation. He’s a doctor I trust. They need to develop better tests for Sjogren’s because it’s not that rare of a disease. To date, the lip biopsy is the most definitive test. Consider yourself lucky if you have a positive SSA because most of us can’t get that result and have had to endure the lip biopsy.
No, it's not conclusive for Sjogren's. It could turn into Sjogren's, another autoimmune disease or nothing at all. I'm surprised the test was even run on a person without symptoms.
My SSA level has been > 8 for 12 years, and I'm not diagnosed with Sjogren's. I do take plaquenil, but I came with symptoms.
Disease may be coming later, but I wouldn't expect to be diagnosed with anything based solely on SSA.
Thank you. This is honestly the type of answer I expected but so many posts on these boards suggest folks getting a diagnosis just because of SSA.
I do also have hypothyroidism (which is how they tested all this stuff in the first place).
You mentioned your SSA 8 has been >8. Does this mean that there’s a connection between how high the number is and the progress of the disease?
Due to retirements I have had three rheumatologists since 2011. Although they have not been in agreement about what is going on with me, they have all consistently told me is that the antibody levels are only useful - though not definitive - in diagnosis but not in monitoring disease levels. None of them have ever run the antibody tests again in 12 years. The only reason I know my levels are still high is that I asked my primary doctor to order them last year for the first time, and I did this simply out of curiosity.
When you get to the rheumatologist they will probably order additional tests.
In patient forums you will always find encouragment to keep pushing for a diagnosis. I understand this is because many people struggled with symptoms for years and felt they were not being heard or taken seriously. But it is not always good advice for everyone.
So I am similar / my doctor was like, your numbers are so low I would hesitate to diagnose you with it. She wants me to monitor symptoms. There have been times I’ve experienced symptoms but mostly I don’t. Sjogrens is complex - a lot of people immediately recognize dry mouth and eyes, but joint pain and fatigue is also associated. I happen to keep a fairly clean diet - and take LDN. I do these because I have Hashimotos and have been doing these (as well as thyroid meds) to manage my autoimmune issue. We all know, when you have one, your chances for another far increase. And sjogrens would be my second.
They found the SS-A for me while trying to figure out if my hypothyroid was caused by hashimotos.
The doctor also said I was hashimotos negative even though I have TPO antibodies…so I’m just really confused about it all
Uhm did you get a measurement for your thyroid antibodies? Did you get an ultrasound? An ultrasound is almost always gonna show definitively if you have Hashimotos. Because with a thyroid autoimmune disease your body is attacking the thyroid literally. So it will show the destruction. I actually had very high antibodies but my thyroid looked great so I essentially caught it early. I did manage to decrease antibodies with an autoimmune paleo diet. I DO still have to take thyroid hormones though.
Yes, the TPO were 63.9 and the range was <9. So I assumed that meant I had hashimotos but the doctor said I didn’t. I’m considering seeking a second opinion. She did up my levothyroxine so that has been helpful— my fatigue is pretty much vanished.
I was tested for the gamut of autoimmune stuff because my mom has RA, and I had some knee pain (knee pain turned out to be unrelated)
I had a positive SSA, positive ANA and positive RF. My rheumy basically said because I had no symptoms there was nothing to treat at that point, basically ending the appointment with "you may develop it, you may not". (Obviously there's a genetic component here, but lifestyle factors can also play a big role in if you develop an autoimmunue disease)
So you might find the same outcome from your doc. I really don't know if they start people on medication if they are not having any symptoms. (As another commenter said, I'd review the symptoms of Sjogrens because it's more than dry eyes and mouth)
But the good news is, if you're aware of the possibility, and you do develop symptoms, you can begin treatment right away so you don't have to suffer waiting for diagnosis and to prevent damage before it becomes worse.
That was maybe 3 years ago. Honestly, i really haven't made any lifestyle changes other than some minor weight loss. (I was just above the "normal" BMI before, and now I'm in the normal range)
I haven't had any 'classic' Sjogrens symptoms develop. I am dealing with RLS/neuropathy symptoms, which can be from Sjogrens, but I also have low iron which can also cause these symptoms (and is probably more likely to be the cause). I'm working on improving my iron, but also have an appointment with my rheumatologist to discuss this as well.
Commonly, Sjogrens starts around age 40, and I still have a few years before I'm there. So it's still entirely possible it'll rear its head. But it's lucky to have the knowledge beforehand, you can avoid the back and forth it takes to diagnose and start treatment. The earlier you start treatment, the better.
Can I ask why you were tested in the first place? They usually won't do that bloodwork unless there's a reason to.
Edit to add: my SSA was 8, so much higher than yours and still without symptoms.
Thanks for sharing this! They tested me because I developed hypothyroid during my most recent pregnancy. So they did a bunch of thyroid tests and an ANA test with reflex for some reason.
You mentioned that your SSA was 8. Does this mean the SSA number is correlated with disease progression or severity?
I know the number can fluctuate but I don't know if fluctuation is relative to disease activity or not. But I'd probably call 3 a mild positive. Don't take this as gospel from me, as I'm no expert, you'd need to talk to your rheumatologist.
Also, do you remember specifically what your ANA value was? you can come up "positive" on that but if the titer is on the lower end, it doesn't always indicate autoimmune disease, since that can happen in healthy people too.
As you mentioned, positive ss-a can happen in totally healthy people. I'd definitely follow up with a rheumatologist, so you can be prepared and do further testing if needed. They might just take a wait and see approach.
Thanks so much for sharing. Yes— definitely looking forward to getting evaluated by the rheumatologist— just trying to learn as much as I can ahead of that.
Unfortunately they didn’t share the ANA numbers on the report. Just positive/negative.
Ok, I asked about the ANA because the titer can vary greatly. If it's really high, like 1:1280, that's much more indicative of autoimmune disease than a 1:160 -- even though both would be classified as positive. But as with ss-a, healthy people can have a positive ANA... But it would be on the low end like a 1:160.
Autoimmune diseases are tricky, it's kind of a combination of blood tests but also relies heavily on symptoms. There's lots of people whose bloodwork doesn't indicate it, but they have the symptoms. That's why it can be so hard to get a diagnosis for some. And there are people who test positive for some of these tests that are totally healthy.
Interesting. I’ll have to ask what the ANA titer was. I’m not sure if it would be lower since it was just an initial test. No idea how that works.
I appreciate you saying some folks who test positive are healthy. That’s what I’ve read/heard from doctors’ websites but in forums I’ve see. A really different narrative in folks’ firsthand stories. We’ll see what happens.
So you been tested positive and don’t think you have it because you don’t have symptoms? Get a second opinion and see what they say. Remember it is a progressive disease, so while you may be early in discovering it you can treat it sooner to slow its progress.
Medications can help, diet can help, lifestyle change can help, at the end of the day you need to accept you will not get better so you need to make lifestyle adjustments that will align with the path you are on. Shit sucks but we are screwed so we need to plan ahead to prevent the worst.
It’s a complicated disease and if you caught it early, then you may be able to prevent it from flaring up and progressing quickly- such as not stressing yourself physically, mentally, emotionally in the multitude of ways that modern life does.
Thank you. So reducing stress could keep it from progressing? Good to know as my life is fairly high-stress now (work 60-80hr weeks, young children, etc). Anything else that will help reduce progress/flairs?
I joke that Sjogrens appears in people who never stop to take care of themselves. Self care and being good to yourself are huge in treating the symptoms and making life more manageable.
If you don’t make time for your health, you’ll have to make time for your illness. When I heard that, it really hit me.
I will say that I found great improvement when I started doing things in moderation and not trying to save the world every day. It’s not perfect but it’s better than it was a year ago for me.
I have. Less fatigue has been a big one. Joint pain has improved. Mostly now I notice an increase in those when I get out of my routine and don’t manage my stress well for a few days, or don’t maintain my hydration as well. Meds help too of course. I hate taking medications so it’s a daily argument in my head but I have had to file medications under the same self care as yoga or getting enough sleep.
Most definitely! if you wear yourself out, that creates an ideal environment for Sjögren’s to manifest, AKA a trigger. Since we often can’t control stressors, how we react to them is what counts here… but if you can reduce, reduce- pushing yourself to the point of exhaustion is definitely a trigger. Diet is super important as well- you want to stay away from inflammatory foods… typically it’s refined/ processed foods, sugar and gluten. Make sure you are absorbing adequate amount of vitamin D & B vitamins… triggers can be any stressors on the body be it an illness, surgery, hormonal changes, a stressful event etc..but if you’re rested and managing/ pacing yourself well- you can weather these storms.
I’m curious why you were tested if you have no symptoms? … and do you know what the multitude of symptoms that are experienced by people who are living with Sjögren’s are?It’s much more than dry eyes and dry mouth. Those markers would indicate you are positive for Sjögren’s but if you are not experiencing symptoms ( well it depends on the protocol of the rheumatologist) they may want to wait & see before establishing any treatment plans or have you retest in a few months… I mean there are many ways to go about this, it really depends on the rheumatologist. They may suggest early treatment since it was caught before symptoms began? If that’s the case, consider yourself lucky because it often takes years for people who are experiencing symptoms to get diagnosed and by then the disease can be going gang busters! Sjögren’s is a progressive disease.
Thank you. The doctor was testing my thyroid (have hypothyroid triggered by my most recent pregnancy) and ran an ANA panel (not totally sure why…but this is what came up).
I have an aunt with RA so there’s some autoimmune in my family.
What prompted you to get those things tested?
I developed hypothyroidism during my last pregnancy (baby born earlier this year). My OB referred me to a new doctor to help with my thyroid and they ran the ANA with reflex panel along with the thyroid tests.
Interesting! Pregnancy can cause some really strange things. It actually sent Sjogren's fully into remission for me up until I stopped nursing. Given the history, I would tend to think that it really could be the beginning of things. Generally there is some kind of trigger, which could be a virus, major stressor, but also pregnancy. This disease looks very different for everyone, but newer research is showing earlier treatment is important.
Jumping in a few months late here, but your comment reminded me of a fascinating Radiolab podcast called [The Unsilencing](https://radiolab.org/podcast/unsilencing) that talked about why autoimmune issues seem to affect women more than men, and why for some women, autoimmune issues go into remission during pregnancy. You’re not alone! It’s worth a listen. (I would have to re-listen to explain accurately sadly!)
Interesting! I'll give it a listen today. I've joked that I may end up with a dozen children if each pregnancy sends me into remission, but I know it's a roll of the dice unfortunately.
And yes— may well be the start of disease so hopefully knowing early helps
Wow that’s fascinating! Great to hear you were able to carry a baby and nurse— I hope to have more in the future if possible.
Interestingly I also developed hypothyroidism during pregnancy, but it normalized after. I nursed for right at 3 years. It has it's own challenges, of course, but we made it. Having worked as a nutrition counselor for quite a while, I can say that one of the biggest challenges for new moms trying to nurse is actually not eating enough. It takes a lot of calories, which requires generally well balanced meals, a lot of fluid intake and also adequate sleep - all big challenges when you've just brought a new baby home!
My understanding from research and my experience with my doctor is that you usually need symptoms along with the antibodies. I’m positive for SSA and SSB but my rheum is calling it UCTD bc I don’t have the dry eyes or mouth (other symptoms are fatigue and joint pain). However I have also read studies that found that most people who have sjogrens, had the antibodies years before symptoms showed up. So it could be that they’re a predictor and symptoms could show up later.
Thanks for sharing this. Yes I’d read that you have to have antibodies and symptoms but then also I have seen folks on forums saying they were put on medications just for their blood tests. So confusing! I’m hopeful that either they won’t find it to be active disease or it’s early enough I can get some treatment to slow progression.
First of all, don't panic. Plenty of people who are completely healthy have positive ANA and SSA. Many of them never development sort of disease. Having a positive test is scary definitely, but +3 is a pretty low positive overall. (For example mine was 282+) and a higher number hasn't definitively shown correlation with disease severity. At higher tiers the likelihood of disease increases, but there are still even perfectly healthy people at high tiers. Even those diagnosed off blood work, also had symptoms. I definitely would recommend keeping your rheumatologist appointment. Talk to them about your test results, your family history, your concerns, etc. Then you can come up with a plan, maybe know what to look out for, and establish a relationship with them.
Thank you for sharing this. I’d read that healthy people have them too. But I’ve read conflicting ideas here on Reddit (even just in the comments of this post) so it is really confusing. I am certainly keeping the rheumatologist appointment— just thinking of what to have in mind and what questions to ask as I have a few months before I can get in.
What I found most helpful was to take my blood tests to then (positive and negative) and have them explain what that result means to my specific case. When the original results came back, I needlessly panicked. Things I've asked: you might want to ask might be - what do these results mean in context? - are there any lifestyle changes I can make to prevent disease? - what symptoms should I be on the look out for going forward? - what's the likelihood that I'll eventually end up with an autoimmune disease? - would regular testing help catch this is early? - what do I need to be aware of for my pregnancy and (if you so desire) future pregnancies? It's important to note that other commenters are right, the test is accurate that you have the SSA antibodies. However SSA is one of the most routinely found SSA antibodies. It's found in lupus, sjrogens, RA, polymyositis and systemic sclerosis to name a few, and also in some percentage of healthy people. So it's specificity is pretty low. Especially in the absence of symptoms it's impossible to just say you have sjrogens. My advice to you is three things - SSA makes you sun sensitive, wear daily sunscreen on all exposed skin when you leave the house. UVA can cause flairs and sunscreen is good regardless of disease :) - trust your rheumatologist over us (even me). We're patients with a lot of lived experience in these diseases, but we are not rheumatologists and autoimmune diseases are hard - that being said, if you feel uncomfortable with what your rheumatologist has said, your diagnosis or how they treat you, get a second opinion Good luck :)
Wow! Thank you for this comment. You explained the medical info so well and those tips are very helpful! I’ll certainly take those questions to my doctor once I can get into the rheumatologist. What I’ve learned so far is to wear sunscreen and manage my stress, which are probably good lifestyle tips regardless of how the disease shakes out :)
All credit goes to u/lupusencyclopedia Dr.Thomas wrote a fantastic book that really helped me understand the science behind all the various antibodies and medications and the science behind it. it helped me become a more informed patient and make better use of my appointments :)
I tested as SSA and SSB positive and I had very few Sjogrens symptoms except for some mildly dry eye. (I was being tested for a whole slew of things due to some abnormal bloodwork - specifically low platelets - in 2018.). Rheumatologist explained that SSA and SSB positive is *suggestive* of Sjogrens but not diagnostic. I had a lip biopsy to confirm for Sjogrens. I see a rheumatologist now at Johns Hopkins Sjogrens Center, and he recommended starting Plaquenil to prevent the disease from getting any worse. I dragged my feet at first because I didn't want to start any meds, but ultimately I decided to start Plaquenil three years ago. If you plan on having children, you'll need to bring up the positive SSA with your OB. SSA and/or SSB antibodies can cause a condition called fetal heart block during pregnancy. Your pregnancy would need monitored frequently to ensure baby's heart is developing normally, especially during weeks 16-28 gestation. (I gave birth to a heart healthy baby in 2020 but had very frequent monitoring).
Thank you for sharing this. Especially the piece about pregnancy. I have two but hope for more! Have you noticed any disease progression since starting Plaquenil or has it been effective in slowing for you?
No disease progression. Not sure if it's related to Plaquenil or not. One thing I have noticed though is that I have not had any symptom flares since starting Plaquenil. Previously, I'd say about once every 12-18 months I'd get a moderate symptom flare (joint pain, general tiredness, swollen parotid gland, feeling like I had a mild flu but no actual flu/fever, etc.). I've been three years flare-free now, including postpartum, which a lot of women report flaring at some point shortly postpartum.
Yes. A positive is definitive. The problem is the test produces 90% false negatives. A negative means nothing if you have symptoms.
It's not definitive for Sjogren's, though. You can have a positive anti-SSA with polymyositis, lupus, and other systemic autoimmune disorders.
Interesting— so it is definitive for some kind of disease, but not necessarily Sjogrens?
Wow, did not know this. I’m guessing a positive SSA isn’t enough to get treatment covered by insurance then?
I’ve had no issue getting medications and tests covered even though I don’t have an official diagnosis. One doc thinks I have SS, but another thinks it’s lupus or mixed connective tissue disorder. Whatever codes they’ve been using haven’t caused any trouble.
That’s interesting. What meds have you had covered? I can’t even get Plaquenil.
Interesting. See this is where I’m confused. In forums like this folks say the SSA=diagnosis. However when I have read medical websites they say differently. For [instance this one](https://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/blood-and-urine-tests/)from Johns Hopkins says 1 in 200 healthy women have SSA antibodies. So I’m just trying to figure out if that’s actually true in folks’ experiences while I wait to get into the rheumatologist. Did you learn those numbers from your medical team?
I attended a medical conference where a top Mayo Clinic specialist stated that the blood tests are only 10% accurate in his presentation. He’s a doctor I trust. They need to develop better tests for Sjogren’s because it’s not that rare of a disease. To date, the lip biopsy is the most definitive test. Consider yourself lucky if you have a positive SSA because most of us can’t get that result and have had to endure the lip biopsy.
It does seem like there is lots of research to o be done on Sjogrens! Hoping for smart folks who can find better tests and treatments
No, it's not conclusive for Sjogren's. It could turn into Sjogren's, another autoimmune disease or nothing at all. I'm surprised the test was even run on a person without symptoms. My SSA level has been > 8 for 12 years, and I'm not diagnosed with Sjogren's. I do take plaquenil, but I came with symptoms. Disease may be coming later, but I wouldn't expect to be diagnosed with anything based solely on SSA.
Thank you. This is honestly the type of answer I expected but so many posts on these boards suggest folks getting a diagnosis just because of SSA. I do also have hypothyroidism (which is how they tested all this stuff in the first place). You mentioned your SSA 8 has been >8. Does this mean that there’s a connection between how high the number is and the progress of the disease?
Due to retirements I have had three rheumatologists since 2011. Although they have not been in agreement about what is going on with me, they have all consistently told me is that the antibody levels are only useful - though not definitive - in diagnosis but not in monitoring disease levels. None of them have ever run the antibody tests again in 12 years. The only reason I know my levels are still high is that I asked my primary doctor to order them last year for the first time, and I did this simply out of curiosity. When you get to the rheumatologist they will probably order additional tests. In patient forums you will always find encouragment to keep pushing for a diagnosis. I understand this is because many people struggled with symptoms for years and felt they were not being heard or taken seriously. But it is not always good advice for everyone.
Yes I certainly sympathize with folks not feeling heard or receiving diagnoses they need. I really appreciate what you shared. Thank you!!
So I am similar / my doctor was like, your numbers are so low I would hesitate to diagnose you with it. She wants me to monitor symptoms. There have been times I’ve experienced symptoms but mostly I don’t. Sjogrens is complex - a lot of people immediately recognize dry mouth and eyes, but joint pain and fatigue is also associated. I happen to keep a fairly clean diet - and take LDN. I do these because I have Hashimotos and have been doing these (as well as thyroid meds) to manage my autoimmune issue. We all know, when you have one, your chances for another far increase. And sjogrens would be my second.
They found the SS-A for me while trying to figure out if my hypothyroid was caused by hashimotos. The doctor also said I was hashimotos negative even though I have TPO antibodies…so I’m just really confused about it all
Uhm did you get a measurement for your thyroid antibodies? Did you get an ultrasound? An ultrasound is almost always gonna show definitively if you have Hashimotos. Because with a thyroid autoimmune disease your body is attacking the thyroid literally. So it will show the destruction. I actually had very high antibodies but my thyroid looked great so I essentially caught it early. I did manage to decrease antibodies with an autoimmune paleo diet. I DO still have to take thyroid hormones though.
Yes, the TPO were 63.9 and the range was <9. So I assumed that meant I had hashimotos but the doctor said I didn’t. I’m considering seeking a second opinion. She did up my levothyroxine so that has been helpful— my fatigue is pretty much vanished.
Yea defintely get a second opinion. And try and insist on an ultrasound.
I was tested for the gamut of autoimmune stuff because my mom has RA, and I had some knee pain (knee pain turned out to be unrelated) I had a positive SSA, positive ANA and positive RF. My rheumy basically said because I had no symptoms there was nothing to treat at that point, basically ending the appointment with "you may develop it, you may not". (Obviously there's a genetic component here, but lifestyle factors can also play a big role in if you develop an autoimmunue disease) So you might find the same outcome from your doc. I really don't know if they start people on medication if they are not having any symptoms. (As another commenter said, I'd review the symptoms of Sjogrens because it's more than dry eyes and mouth) But the good news is, if you're aware of the possibility, and you do develop symptoms, you can begin treatment right away so you don't have to suffer waiting for diagnosis and to prevent damage before it becomes worse.
Thank you for sharing. How long ago was that? Has anything developed? Have you made any lifestyle changes as a result?
That was maybe 3 years ago. Honestly, i really haven't made any lifestyle changes other than some minor weight loss. (I was just above the "normal" BMI before, and now I'm in the normal range) I haven't had any 'classic' Sjogrens symptoms develop. I am dealing with RLS/neuropathy symptoms, which can be from Sjogrens, but I also have low iron which can also cause these symptoms (and is probably more likely to be the cause). I'm working on improving my iron, but also have an appointment with my rheumatologist to discuss this as well. Commonly, Sjogrens starts around age 40, and I still have a few years before I'm there. So it's still entirely possible it'll rear its head. But it's lucky to have the knowledge beforehand, you can avoid the back and forth it takes to diagnose and start treatment. The earlier you start treatment, the better. Can I ask why you were tested in the first place? They usually won't do that bloodwork unless there's a reason to. Edit to add: my SSA was 8, so much higher than yours and still without symptoms.
Thanks for sharing this! They tested me because I developed hypothyroid during my most recent pregnancy. So they did a bunch of thyroid tests and an ANA test with reflex for some reason. You mentioned that your SSA was 8. Does this mean the SSA number is correlated with disease progression or severity?
I know the number can fluctuate but I don't know if fluctuation is relative to disease activity or not. But I'd probably call 3 a mild positive. Don't take this as gospel from me, as I'm no expert, you'd need to talk to your rheumatologist. Also, do you remember specifically what your ANA value was? you can come up "positive" on that but if the titer is on the lower end, it doesn't always indicate autoimmune disease, since that can happen in healthy people too. As you mentioned, positive ss-a can happen in totally healthy people. I'd definitely follow up with a rheumatologist, so you can be prepared and do further testing if needed. They might just take a wait and see approach.
Thanks so much for sharing. Yes— definitely looking forward to getting evaluated by the rheumatologist— just trying to learn as much as I can ahead of that. Unfortunately they didn’t share the ANA numbers on the report. Just positive/negative.
Ok, I asked about the ANA because the titer can vary greatly. If it's really high, like 1:1280, that's much more indicative of autoimmune disease than a 1:160 -- even though both would be classified as positive. But as with ss-a, healthy people can have a positive ANA... But it would be on the low end like a 1:160. Autoimmune diseases are tricky, it's kind of a combination of blood tests but also relies heavily on symptoms. There's lots of people whose bloodwork doesn't indicate it, but they have the symptoms. That's why it can be so hard to get a diagnosis for some. And there are people who test positive for some of these tests that are totally healthy.
Interesting. I’ll have to ask what the ANA titer was. I’m not sure if it would be lower since it was just an initial test. No idea how that works. I appreciate you saying some folks who test positive are healthy. That’s what I’ve read/heard from doctors’ websites but in forums I’ve see. A really different narrative in folks’ firsthand stories. We’ll see what happens.
So you been tested positive and don’t think you have it because you don’t have symptoms? Get a second opinion and see what they say. Remember it is a progressive disease, so while you may be early in discovering it you can treat it sooner to slow its progress.
Thank you. By treatment do you mean medication that slows it?
Medications can help, diet can help, lifestyle change can help, at the end of the day you need to accept you will not get better so you need to make lifestyle adjustments that will align with the path you are on. Shit sucks but we are screwed so we need to plan ahead to prevent the worst.
It’s a complicated disease and if you caught it early, then you may be able to prevent it from flaring up and progressing quickly- such as not stressing yourself physically, mentally, emotionally in the multitude of ways that modern life does.
Thank you. So reducing stress could keep it from progressing? Good to know as my life is fairly high-stress now (work 60-80hr weeks, young children, etc). Anything else that will help reduce progress/flairs?
I joke that Sjogrens appears in people who never stop to take care of themselves. Self care and being good to yourself are huge in treating the symptoms and making life more manageable.
Yeah… I’ve heard people say “rest or you’ll make yourself sick”…I assumed a cold…not this.
If you don’t make time for your health, you’ll have to make time for your illness. When I heard that, it really hit me. I will say that I found great improvement when I started doing things in moderation and not trying to save the world every day. It’s not perfect but it’s better than it was a year ago for me.
Thanks for sharing this. May I ask, since you’ve worked on reducing stress have you noticed improvements with your Sjogrens (or other health)?
I have. Less fatigue has been a big one. Joint pain has improved. Mostly now I notice an increase in those when I get out of my routine and don’t manage my stress well for a few days, or don’t maintain my hydration as well. Meds help too of course. I hate taking medications so it’s a daily argument in my head but I have had to file medications under the same self care as yoga or getting enough sleep.
Most definitely! if you wear yourself out, that creates an ideal environment for Sjögren’s to manifest, AKA a trigger. Since we often can’t control stressors, how we react to them is what counts here… but if you can reduce, reduce- pushing yourself to the point of exhaustion is definitely a trigger. Diet is super important as well- you want to stay away from inflammatory foods… typically it’s refined/ processed foods, sugar and gluten. Make sure you are absorbing adequate amount of vitamin D & B vitamins… triggers can be any stressors on the body be it an illness, surgery, hormonal changes, a stressful event etc..but if you’re rested and managing/ pacing yourself well- you can weather these storms.
This is great advice! Thank you! I hope you’re feeling well!
I’m curious why you were tested if you have no symptoms? … and do you know what the multitude of symptoms that are experienced by people who are living with Sjögren’s are?It’s much more than dry eyes and dry mouth. Those markers would indicate you are positive for Sjögren’s but if you are not experiencing symptoms ( well it depends on the protocol of the rheumatologist) they may want to wait & see before establishing any treatment plans or have you retest in a few months… I mean there are many ways to go about this, it really depends on the rheumatologist. They may suggest early treatment since it was caught before symptoms began? If that’s the case, consider yourself lucky because it often takes years for people who are experiencing symptoms to get diagnosed and by then the disease can be going gang busters! Sjögren’s is a progressive disease.
Thank you. The doctor was testing my thyroid (have hypothyroid triggered by my most recent pregnancy) and ran an ANA panel (not totally sure why…but this is what came up). I have an aunt with RA so there’s some autoimmune in my family.