It means that 1 out of 20 people without lupus will have an ANA that high.
The prevalence of lupus in the general population is a bit less than 1 per 10,000 (0.01%).
Therefore (based on those numbers) for a general population the only 0.2% of those with an ANA of 1:160 will actually have lupus and 99.8% of them will not. And that presuming that ANA is always positive when someone does have lupus.
Sometimes they can reflex a positive ANA to more specific tests … you may want to ask your doctor if they can call the lab and see if it can be added on. Negative results for anti doublestranded DNA for example would be reassuring.
My statement was that if you gather a group of healthy people, only 3-5% who do not have an autoimmune disorder would have an Ana of 1:160. Is that statement incorrect? I don’t know much about it, but does an Ana of 1:160 imply there is a very high probability of an autoimmune disorder? http://rheuminfo.com/diseases/anti-nuclear-antibody-ana-testing
However, not all ANA are trouble. We all transiently make ANA. If you go out and corral a group of 100 “so-called” healthy people and do an ANA test, what do you think will be the results? About 30 of them will have an ANA of 1:40, 10 will have an ANA of 1:80, and 3 will have an ANA of 1:160.
Why zoom in on lupus only? I have no idea what percentage of people actually have autoimmune disease, as I don’t personally think that is currently possible to accurately determine, but it is frequently estimated at 20% of the population.
Add in the positive ANA result and the fact that the person had symptoms that led to the ANA test in the first place and the odds that the person has autoimmune disease would obviously increase to greater than 20%.
But the point was to clarify what (only) 5% of normals having a positive test result means. Its meaning depends on how likely the disease is to be present in the population being tested. If the condition is uncommon in the population being tested then the vast vast majority of positive results will be false positives, even for a test that is only testing less than 1% of normals as having the condition.
Now I do not know what the likelihood of a connective tissue disease being present is given all people with the symptoms described by our op. Doubt you know much better. Nothing there though screams out specifically connective tissue disease. Many of them have very specific clinical pictures, and our op does not fit any of them. Not a rheumatologist or even an internist but I’d WAGer given the otherwise normal labs and lack of skin or joint findings not any higher, or possibly even lower than the general prevalence. Note any figure that estimates 20% for “autoimmune” is meaning inclusive of Hashimoto’s autoimmune hypothyroidism, Graves disease, diabetes, celiac disease, etc … not diseases that the ANA screens for and not consistent with the clinical and labs picture as described. This as described is NOT for example consistent with Sjögren’s syndrome (the most common connective tissue disorder), not dermatomyositis or a form of JIA … so on.
In the absence of a clinical scenario that is strongly suggestive of a connective tissue disorder an ANA positive a 1:160 does NOT imply there is a very high probability of an autoimmune, let alone connective tissue disorder (such as lupus being the one with the potentially least specific presentation), and normal blood sugar and normal thyroid function right there rules out the most common autoimmune disorders.
Please note … I am not saying what is or is not wrong with DoperChic. Not qualified even if I was her doctor and examining her in person. Just clarifying the limitations of and meaning of a “positive lab” …
grabbing a person at random (and knowing nothing else about them) from the general population of whom 20% have autoimmune disorders means that that there is a 20% chance of having grabbed an individual with an autoimmune disorder and
grabbing a random person from a group extracted from that population on the basis of them having autoimmune symptoms means that there is a greater than 20% chance of you having grabbed someone with an autoimmune disorder from that group,
then I don’t know what to tell you.
If someone has symptoms of a disease, you don’t think it is even a smidge more likely that they have that disease than a person who does not have any such symptoms?
What specific disease or diseases do you think DoperChic has the symptoms suggestive of? What is the prevalence of that disease (or those diseases) given that presentation?
Please do not answer “autoimmune.” Which autoimmune disease commonly presents as she describes her case and her labs? Diabetes? Hypo or hyperthyroidism? Celiac? Rheumatoid arthritis? JIA? Sjögren’s syndrome? Which one or ones? Remember normal blood sugar, normal thyroid stimulating hormone, normal kidney function, CBC, no joint or skin findings. So what specific disease or diseases do think she has the symptoms of?
If only diagnosing autoimmune disorders could be so easy!
Let’s keep in mind though that her doctor, who has examined her and looked at her actual labs (sometimes things fall into the “normal” range, but are kind of borderline, so possibly still indicative of a problem; also, we don’t know exactly which tests were done), saw fit to refer her to a rheumatologist for diagnosis of why her ANA levels are what they are, as well as to a neurologist, AND an infectious disease doctor.
Her symptoms may not share a cause and I’m sure you are well aware that the body is not composed of independent systems. Is the immune system malfunctioning or is it responding appropriately to the infection? Hopefully she will get some answers, but I wouldn’t hold my breath.
Some autoimmune possibilities are polymyositis, lupus, and Hasimoto’s. Were I the OP, I would seek a more complete thyroid test panel and an EMG and look to wean off the Zoloft.
Wow. You all have been busy since I last checked in!
I’m still at work, printing out a few things I need to complete an assignment for grad school. I’m about to head out, but I’ll reply again soon, promise. There is a lot of great information here that I want to digest and reply to when I have more time. I might not get to it all until the morning as my paper has to take precedence for now.
True, but I’ve had periods of really good health, low stress lots of exercise; I’ve also had the opposite. In the periods where health wasn’t something I focused on all sort sod weird symptoms would occur that kind of went away when I got back to exercising etc.
Polymyoitis does not present as the op describes her case. It presents with central/proximal weakness (trunk, hips, and shoulders). And its prevalence is less than the prevalence of lupus. Lupus can present like almost anything so is not out of the picture. Hashimoto’s thyroiditis with a transiently normal TSH (which can happen if you test just as it begins to burn out) is going to be asymptomatic at that point in time. The presentation is not all “suggestive of” it.
I have no qualms or comment about the care she is getting. She is feeling unwell and her doctor is pursuing various directions simultaneously trying to get help figuring it out, coming up with an effective treatment plan, and to be able to give her set of symptoms a name. I would not personally presume to suggest any specific course of action, and certainly would not suggest that someone who I know little about wean off of their antidepressant.
Her belief however that she has “a 95% chance of having some sort of autoimmune disorder as up to 5% of otherwise healthy individuals can still have a titer of 1:160” is a misunderstanding of what the lab result means. The odds of her having an autoimmune disorder (given that we now know she has a normal blood sugar, normal liver and kidney function, and normal TSH, a normal eye exam (with no sign of inflammation such as iridocyclitis), and no reported joint or skin findings or other findings suggestive of any specific connective tissue disease, are very low. Non-zero and getting an expert’s input is reasonable, but very low.
She may end up with label of Systemic Exercise Intolerance Disorder (SEID, previously referred to as Chronic Fatigue Syndrome). I don’t know. But other things should be ruled out first.
Oh. The droopy eye lid (acquired ptosis) may be and likely is a red herring (from what I know of it usually is for no clear cause when it happens) but the one thing that it raises the possibility of is myasthenia gravis. This would include though more generalizable muscle weakness and easy fatigue of muscles and not per se explain the pain and headaches. Still, just as rheum may be needed to completely cross lupus off the list, the neurologist may be needed to cross myasthenia gravis off. It’s still an unlikely explanation.
Vitamin D btw is often low with a wide variety of chronic diseases. The directionality is likely the impact of the illness on vitamin D absorption and metabolism rather than the low D causing any of the signs of illness but a modest vitamin D supplement is reasonable, e.g. 1000 IU or so a day. Or modest amounts of real sunlight as close to every day as possible. Just don’t overdo it in either case.
While dismissing a disease because it is rare means usually being correct, that is not a good approach for the individual patient. Each person’s goal is an accurate diagnosis for themselves, whereas the doctor’s goal is to minimize the number of patients who do not get this. A doctor could actually make the decision to never diagnose any disease that is extremely rare and barely affect his/her diagnostic accuracy rate at all, but this could mean 100% inaccuracy for a patient or two.
Autoimmune diseases often do not present in a textbook manner. They are notoriously difficult to diagnose and it is quite common for patients’ complaints to be dismissed by doctors for years before they finally get a diagnosis that leads to a treatment that provides some relief. Unfortunately, autoimmune disorders are not well understood by anyone at this time.
Sorry, but Hashimoto’s with symptoms and a normal TSH is actually very common. (One possible reason for this is that the reference range is not truly correct for everyone and another is that the thyroid may be alternately under- and overfunctioning.) Consider the possibility that this diagnosis is often dismissed out of hand when the TSH is normal–the patient’s actual medical status does not change because of what someone enters on their chart. How many of these symptomatic patients will end up with a Hashimoto’s diagnosis later, after their TSH levels finally dip below normal? How many could have benefitted from earlier treatment had someone simply bothered to do a more thorough thyroid panel? I recommend this because it is a non-invasive blood test with no risk to the patient (I mean I guess there is always some risk to the patient for a blood draw, but it is trivial). There is no reason not to do it besides cost savings, but it is not even terribly expensive. She does have the symptoms, so pursuing this is sensible.
I am certainly not suggesting that the OP wean herself off any antidepressants without the supervision and approval of a doctor. I said were I the OP, I would look into this, as her symptoms are possible Zoloft side effects and it has been tentatively implicated as a possible cause of drug induced lupus in a few cases. While I have no doubt that antidepressants have helped many people, the potential for dangerous side effects is non-trivial. Ignoring the fact that these symptoms are side effects of Zoloft (not saying the drug induced lupus connection is a known side effect–that is something that has been considered and investigated on a very small scale and no certain conclusion has been drawn) headaches, fatigue, feeling off-balance, etc. is dumb. It is well-known that a patient may tolerate a particular antidepressant for years and then develop problems or for it to lose efficacy. It is clearly worth looking into this as a possible cause.
Yes, mathematically you are correct, but the OP is not part of the gen pop–she is symptomatic and thus her likelihood should be compared to that of other symptomatic people, not the gen pop.
When the cause for something is not clear, we must not confuse our lack of knowledge about what the cause is with there not being a cause. The body is a physical system and everything has a cause. It is easy to dismiss the unknown as a dead end, but even if it is unknowable with the tools at hand, it is anything but: it is a variety of possibilities, not a brick wall.
I’d suspect the antibiotics, but obviously the most serious possibilities should be explored.
I am not going to waste much effort arguing with AnaMan and the stinking pile he’s laid here but some misinformation should at least be corrected for the sake of everyone else. I apologize for the hijack I apparently triggered here with a simple comment about the meaning of a “positive” test not necessarily meaning what some here thought it did.
Within the realm of “alternative” medicine (naturopaths, chiropractors, homeopaths, etc.) “autoimmune” has become a common catch-all and boogeyman. And “thyroid disease” either “not diagnosed” by the mainstreams or not “properly treated” by them (which often must be treated with only special thyroid hormone sources that these quacks sell), “undiagnosed” by the crude tests and that mainstream physicians use, who “don’t really understand” the thyroid and its function and who are “not listening” to their patients. They attract many of those with chronic fatigue, aches, and malaise who have been told that their particular combination of “substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertion malaise lasting more than 24 hours” is not caused by the variety of other known and identifiable conditions that can include chronic fatigue, including thyroid disease. But the quacks throw a bunch of pseudoscience at them and sell them on special potions that only they sell. Beware.
Meanwhile most of the diseases that are “autoimmune” are diagnosed in a fairly straightforward fashion. Diabetes at the edges can get fuzzy as fasting glucose, hemoglobin A1c, and glucose tolerance tests are not always 100% concordant. TSH goes up out of range before blood thyroid levels get below normal range. There is reasoned debate about whether or not it is a good idea to treat “subclinical hypothyroidism” (where TSH has begun to rise but circulating free thyroid hormone levels are still well within normal range) or not but no, there is no such thing as Hashimoto’s causing a thyroid to alternately over and underfunction back and forth. What happens in Hashimoto’s is the body produces antibodies that attack the thyroid gland. This can in the very beginning cause a transient amount of stimulation of thyroid hormone release (which then lowers TSH) and then burns the gland out so that it can produce less. As its production goes down the brain (hypothalamus to pituitary) beats out enough initially by sending out more TSH … TSH increases and free thyroid hormones stay in normal range … but eventually it cannot keep producing enough even with being whipped with huge TSH levels and free thyroid hormone levels drop.
Agreed though that SEID aka CFS (which I am not saying is **DoperChic’**s diagnosis; she is still in the excluding other causes range) has a cause (or multiple causes) that are just not yet understood. Which does not mean that any quack explanation for it should be accepted.
Don’t imagine I’ve offered quackish explanations when that hasn’t happened. It is true that there are massive quantities of quackery out there with regard to autoimmune disorders, but they are thriving because actual medicine is not filling the void with effective treatment options. I’m not blaming doctors or researchers for this or giving credence to quackish theories. Autoimmune disorders just aren’t well understood yet (at least I hope it’s a yet!).
It isn’t that “mainstreams” are failing to diagnose autoimmune disorders properly. An endocrinologist or rheumatologist is perfectly mainstream, and they WILL order blood work beyond TSH levels if they have any suspicion of thyroid involvement, as will some GPs.
Nowhere have I suggested anything quackish, “alternative,” homeopathic, etc. Asking your doctor to order bloodwork from an actual medical lab is not a “stinking pile,” and you seem to be adding in a bunch of crap that maybe you’ve heard someone else say and attributing it to me.
Plus, not that it really matters, you always spell my name wrong and I am not male.
Oh DoperChic, assuming for the sake of discussion that you do end up in that pathway with rheum and neuro clearing you, then another label that you may end up hearing is “fibromyalgia” which in many practical ways is the exact same thing as SEID/CFS and the same person is often labelled with one or the other just out of local culture. Fibromyalagia however does not require the post-exertional fatigue or cognitive impairment and can be evoked as a label after less time. Both have the same treatment approach and prognosis though.
With that in mind here is an article explaining more about what I am talking about with the ANA.
From a very practical POV the worst but frequent outcome right now if this does end up to be one of those labels is allowing your pain and exercise intolerance to result in progressively less movement and greater deconditioning. That becomes a downward spiral of dysfunction. Yet it is vital that the level of exercise one does is carefully graded to where they currently are lest one get into a “push-crash cycle.” Often PT input to guide through a prescription for graded exercise, beginning with brief low-impact sessions that include lots of rest time, is utilized. This intervention, a standard part of the team approach for the SEID-fibromyalgia spectrum, is also useful if another diagnosis ends up being found; asking your doctor for such a referral now rather than waiting for the consultants to agree on a name, may help cut off some of the impact of deconditioning before it gets too deep.
Hey there. Your post has me crawling out from under the SDMB rock I’ve been buried under for the last few years because it struck a chord.
It’s a long, long-ass story that would surely unfairly hijack your thread, but suffice it to say in the last two years my life was completely upended as inexplicable medical issues, seemingly unconnected, began popping up and taking over. 2014 was hell as I was sent from doctor to doctor, specialist to specialist, and endured soul-crushing combinations of dismissiveness and condescension. But I was certain something was wrong, no matter what the bloodwork said, and not only was something wrong–I was getting worse. It took me spending hours pouring over research and reaching out to communities of rare neurological conditions to find the right neurosurgeon to help me. I found one of the best of the best for this rare (and worse, misunderstood) condition–he is among the world experts on it. People fly in from all 50 states and 60 countries to see him. He’s 3000 miles away from me in New York, but I deteriorated so much I didn’t care. (I should note that at that point, the doctors all agreed something was wrong with me neurologically, but none of them–and I saw two neurologists and five neurosurgeons–could figure out exactly what.*) I sent him my MRIs and such in a Hail Mary pass over the summer, and a few hour-plus long Skype sessions later, I had life-changing, life-giving brain surgery this past January. The skull-crushing headaches that were becoming more and more severe, and more and more frequent, ended abruptly–as did my hand tremors–and life was, is, bright once again. I have nerve damage and can no longer work, but life can be lived now, and I am grateful.
I say all this because this two-years’-long traumatic experience has taught me a few things.
One, doctors are human. Very human. They have limits, they make mistakes, they have different personalities. Some like a good puzzle. Some don’t want to be bothered. Some are in a hurry to slap a name on a condition and walk away. And, some are rusty in their training–I had two neurosurgeons and a neurologist mismeasure my malformation right in front of my eyes because they used the wrong starting points. They then told me the malformation wasn’t there. Um…yes, it very clearly was, but YIKES.
Two, get copies of everything. EVERYTHING. Every blood test, every MRI CD, everything. Look them over yourself. Keep them handy. Three ring binders with sheet protectors are awesome for that.
Three, radiologists/techs in general are human. I had multiple MRIs and conflicting reports–it depended on the radiologist and in at least one case, their report was colored by what the referring doctor had suggested.
Four, politics are thick in medicine. One MRI report (the images themselves were highly useful) was useless–and flat out obviously wrong–because, I believe, a very powerful, highly-reputed, semi-retired-but-still-a-BIG-name-at-84 specialist neurosurgeon had examined me a year prior and dismissed me. The radiologist explicitly referred to that doctor’s findings in my report, even though he was not the referring doc and I hadn’t seen him in 8mos, and would not contradict him. I had other cases where one doctor didn’t want to step on another doctor’s toes and that affected how they treated my case.
Five, listen to your body carefully and trust what it is telling you. I was absolutely convinced early on something was neurologically wrong with me, and it took my local doctors over a year to agree with me.
I hope you get the answers you need and get relief soon. May it be a simple solution and easy treatment.
*One neurosurgeon did actually see the issue on my MRIs, but felt it was too small and too complicated to be worth operating on. He’s the only local NS to whom I would ever think of going back or to whom I’d refer others.
I have a bit of an update on my own condition. But first I thought I’d reply to some of the posts shared since my last update…
I’m playing a bit of phone tag with a second rheumatiologist they recommended. If they have a similar wait time for an appointment, I’ll give my primary doc another call.
I just went through the results of my lab tests. They’re not all online yet. So it’s possible that a vitamin D test is part of the missing results, but I’m not sure. Vitamin D is not part of the list as far as I can see.
You’re right about that. I actually had an active MRSA infection when I had the bloodwork done, so it certainly may have skewed the results.
This is all great advice. I have struggled with my weight most of my life, certainly all of my adult life. When the proverbial shit hits the fan, I turn to food for comfort. The worse I feel or the most stressed out I get, the more food “helps” me. I completely agree with you that I need to lose weight and that doing so would really help me in both the short and long-term. I just don’t have the mental and physical energy right now to tackle one more thing.
Exercise at this point is pretty much not an option. I’m exhausted every day all day. The thought of adding a workout into my already packed day is just not possible right now. I can – and should – work to improve my diet in the long run, but for now I’m in total survival mode, doing just what I have to do to get through my day.
I did take up your last bit of advice. I went out on Friday to a local salon and got a facial. It was wonderful and relaxing. I even booked myself a Swedish massage for two weeks out. It was so nice to just take an hour or so for myself.
AnaMen, you hit the nail on the head here. I can push through pain. The fatigue is something else. I’m constantly exhausted, both physically and mentally. But it’s the attitude I get from so many who hear I’m dealing with whatever this thing is. “Just push through it”, “don’t sit around, it only makes it worse”, “regardless of how you feel, you need to do xyz”. It’s maddening.
I’m going to stay out of the discussions on my ANA bloodwork. I don’t have enough of a handle on just what the results mean to be able to meaningfully contribute. I’ll clarify what the results mean at my next doctor appointment, be it with my GP or a rheumatologist.
With all due respect, there is no way I’m going to look into weaning off of the Zoloft. Taking it has saved me from going in regular deep bouts of depression. I was damn near suicidal last fall when I started it. Zoloft is a wonder drug for me.
You may have something though with suggesting a more complete thyroid test panel. That may very well be the next step. As I said above, I’m going to try to get in with a rheumatologist sooner than later. IF not, I’ll follow up with my GP and suggest that we look into further bloodwork based on the results from the first set.
I hear you and totally agree. If I had the energy to exercise I would. If I cared enough to buy and prepare healthier foods, I would. I have so much on my plate (no pun intended) right now that I just don’t have the energy to do it. I know that sounds awful, but it’s my truth.
I had attempted to lose weight earlier this year. I stuck with it for about a month or so. Not that long, I know. I lost about 15 pounds, but still felt awful. I wasn’t able to start a real exercise plan because I was still so tired all the time.
Wow Ruffian I am so sorry to hear you had to go through all of that. But I’m glad you finally got the help you needed to recover. Thank you for sharing your story. It gives me hope that something will be found and I will get the help I need too.
