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Dr looking at possible lupus - can you help me make heads or tails of these results


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Symptoms - On/off strange pains for years. Sometimes in joints, sometimes in muscles. Headaches. Digestive issues. Definite sensitivity to wheat/gluten (been GF over 6 months). Almost daily hives since last October. Brain fog. Fatigue.

First tests were done years ago after hip pain so bad I could barely move. ANA was 1:320 at that time. Dr put me on 5,000IU d3 a day and after a few months, it resolved. As time went on other symptoms, as noted, popped up and continued to bother me more as time went on.

August 2016 I went back to dr for issues. She did a whole gamet of tests. ANA was positive ANA speckled 1:160. Went to Rheumatologist. Things must have been better enough by then that he was satisfied with my tests and said to come back if things got worse.

Fast forward again to this year. Symptoms are bad enough if it interrupting my life at times. I know many are so much worse, so sometimes I tend to downplay things, but I know that if I feel bad enough that I just need to lay down for hours, it's not normal. So I am trying to address things.

She did CBC w/ diff and CBC. I was originally in for a follow-up on cholesterol issues. I left with her being unconcerned with cholesterol and wanting to put me on naproxen for RA. Sigh.

Sent me to an allergist who did skin test to see if hives are from allergy. Only thing that showed up was trees. But, he ordered all the following tests. I think I am missing a few results. I know he ordered TS4 and TSH and vitamin D. I don't see those in my health portal?

ANA speckled 1:160

DNA ANtibody Double Strand 159 (said negative reference range was anything under 200?)

Thyroglobulin Antibody was less than 20

Thyroperoxidase Antibody was less than 10

ENA Sjogren B = 4


Anti JO1 = 2

Anti Scleroderma = 5

ENA Sjogren A = 13

Smith Antibody = 4

With these results could we surely say lupus is negative? I don't want to have anything "wrong", but it sure would be nice to have an explanation. :)

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When I first started getting tested for autoimmune diseases, at first only one test was positive which was hypergammaglobulia.  I started being treated by rheuamotologists.  Next up were positve ANA and SSA,, I think after birth of second child.  Anti- phosphophiled anitbodies were next.  I was put on Plaquenil after birth of my third child, when I really went downhill immediately after birth.  I was diagnosed with only Sjogren['s Syndrome and other autoimmune non erosive arthritis.  Lupus was brought up several times later but never confirmed until a few years ago.  Earlier than the lupus, non RF factor type RA was added about ten years ago and more medications.  WIth my latest rhuematologist, it has been confirmed that I do have lupus also and did for many years but my numbers weren't high enough.  After age 50, all my numbers went wild and yeah I have a lot of autoimmune diseases.  My rheumatologist has told me that in the last number of years, the thinking about autoimmune connective diseases is changing because so many of us start out this way- unclear which and end up with multiple diagnoses,.  ANd yes, I actually have symptoms of all and now some type of marker for each (RA is the actual joint damage that has occured while I wasn't on the strongest drugs.   My journey is over the last 30+ years.  

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1:160 puts you at borderline. Given that you're symptomatic, go back to the rheumatologist and push for answers. If you get the rash again, photograph it and then go in for a scrape biopsy with the rheumy.

Based on the cursory stuff that you describe, your PCP seems to be out of her depth, your allergist may be on to something, and your rheumatologist seems a bit too laid back for as bad as you describe yourself feeling. Look, there are times when you have to really tell people (without exaggerating) how bad you really are doing.  We stoically stiff upper lip a lot as mothers, especially as homeschooling mothers, but what you're describing is not normal.

Naproxen is a cr-p idea, btw. If you're needing pain relievers more than 1-2x/week, you need to be on a true disease modifying drug (DMARD) like plaquenil or the like.  Taking an anti-inflammatory pain reliever deals with the symptoms, not the cause, and doesn't prevent the organ damage that can come from both lupus and RA.

If they thought RA, they should be looking at sed rates, cr-p levels, etc.  If they thought lupus, they should be checking liver, kidney, and heart function. Most of us with autoimmune stuff are weird mixes of both. I know few lupus people who are straight up lupus, and few that are straight up RA....which is why they should be testing for both (including sed rate, cr-p, etc.)

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I agree that going on Naproxen by itself is a very bad idea. 

Also, where were the labs done, like what lab service did them? I have had doctors in 4 different states and four different specialties of doctors telling me not to go to Labcorp or have testing done by them.  

Also, if anyone is suspecting RA, you should have been checked for Rheumatoid Factor too.  

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And have you had a complete thyroid lab? TSH, Free T3, Free T4, Reverse T3? I see the he ordered TSH, but you *must* have Free T3, Free T4, and Reverse T3, as well. There are lots of other thyroid measurements, which may be interesting but which don't really indicate whether you're hypo or hyper thyroid.

I know that there are many things which can have those symptoms, and that thyroid issues are not always the problem, but it is so easy to rule out thyroid issues if the doctors would just do the right labs.

If you can talk him into doing all of the proper thyroid labs, then you have to look for these results: TSH in the lower fourth of your lab's ranges; Free T3 in the upper fourth of the lab's ranges, Free T4 in the upper half. Do not settle for being told that your labs are "in range."

Check out this long pathetic list of symptoms. These are not just symptoms that people reported;  " these are also symptoms which patients have reported greatly improved or totally went away once they moved over to Natural Desiccated Thyroid (or adding T3 to their T4) and found their optimal dose, which is key along with having optimal iron and cortisol

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I had borderline numbers for years, with frequent random hives. I also have a wheat allergy and a ton of drug allergies.  I have gotten a malar rash in the sun since I was 15. I went on a low histamine diet and my numbers went way down.  As in, all but 2 in the last test were zero. And I haven't had repeat kidney infections or pneumonia since. So I know it's a pain in the butt to stop eating tons of your favorite foods and go on a more restrictive diet, but I'd start there, especially with your random hives.

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Thank you all for the many responses and helpful questions to consider!

My PCP did do C-Reactive and Sed Rate and other things a year ago. She basically just told me to do the naproxen for a few months and if it didn't help, then she would re-do my bloodwork and I should go back to the Rheumatologist. She literally told me not to go see him yet. Pshhh. I have not used the Naproxen! But, one of you said if I am taking something more than twice a week, that is something. I have taken so much ibuprofen and tylenol in the past year. Oye. 

Last check (a year ago), my C-reactive and sed rate were both normal. Sed Rate was only 7. I haven't had those re-checked yet?

Pen, you asked about organ damage signs? I don't know? I'm not sure how we would know that. I don't think I have had the classic lupus rash. My face is more sensitive to sun, but not that rash like I would see when googling images.

Prairiewindmomma, I agree completely! Thank you for the reply. :)


Attolia, I was tested for celiac a year ago. Gliadin IGG was 3, Tissue Transglutaminase IGG was 10, Gliadin IGA Antibody 10, IGA Gammaglobulin 225, and Tissue Transglutaminase IGA was 13. I was told all was negative. My PCP did do Food Intolerance Testing (blood test). I came back extremely high for all eggs, all dairy, and medium response to gluten and wheat. But my body's reactions to gluten are enough I would never eat it just to be retested. :) 

It was a lab in Ann Arbor, Michigan that processed some of my results.

Seasider too - I have not been checked for SIBO. Would my PCP order that or maybe my chiropractor could?

Ellie - when they call me back I will ask about those other thyroid tests. I have a friend here who told me the same thing! She said it's hard to get a dr to order those. ?

Katy - Yes! I think more dietary changes are going to be my saving grace here. :) 


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28 minutes ago, melissamomof5 said:

Ellie - when they call me back I will ask about those other thyroid tests. I have a friend here who told me the same thing! She said it's hard to get a dr to order those. ?

Yes, it is. ::weeps:: The average number of doctors that people see before being properly treated for thyroid conditions is *five*.

Most adult women who have thyroid issues have Hasimoto's, an autoimmune disease.  Proper thyroid medication is key (unless you catch the thyroid disease early enough that diet and supplements will help; for many of us it was too late for that by the time we were diagnosed), but there are things that can help any autoimmune disease. You've already eliminated gluten, which is good, but there are often foods which trigger the symptoms; one way to figure out if any foods are the problem is to do the Autoimmune Protocol. It's an elimination diet; many people have really been helped by doing it and changing their diets. If you do Facebook, check out the Hashimoto's 411 page. Lots and lots of really helpful information.

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  • 1 month later...
On 9/18/2018 at 8:03 PM, Ellie said:

And have you had a complete thyroid lab? TSH, Free T3, Free T4, Reverse T3? I see the he ordered TSH, but you *must* have Free T3, Free T4, and Reverse T3, as well. There are lots of other thyroid measurements, which may be interesting but which don't really indicate whether you're hypo or hyper thyroid.



I just had some of these tests done but don't know what optimal levels are.  Is there a chart or range you can post a link to?

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