It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Lupus Message Board

Lupus Board Index
Board Index > Lupus | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

My primary doctor recently ran some autoimmune labs on me. I've had this checked periodically for the last 5 years or so, because of the rather vague symptoms I seem to present with. I only just recently tested ANA positive (1:160, speckled) and Anti-dsDNA "borderline positive" (Negative range ends at 24, I was at 26?) I went to the Rheumatologist earlier that I was referred to and he basically said he didn't know what to make of my tests. He ordered a urine test, ferritin, vit d and yet another thyroid test for me to do before I come back. (I've had five different doctors tell me they think I have thyroid disease in the last two and a half years...but the tests are always negative.) So, anyway I was wondering if it sounds like I'm in need of a second opinion to you guys. I left the appointment feeling very confused. Is it possible to test "borderline" positive for a disease-specific antibody? Anyway, I'd appreciate any info on this disease or advice on who I should consult with next. Thanks.
Sillygal, yes, I think it's possible to test borderline for ANA, anti-ds-DNA, and other values. For starters, autoimmunes have to start somewhere; also, even when they've hit full stride, test values can fluctuate as flares come & go. Another factor could be the lab: the tests are difficult to perform. Finally, while some patients present full-blown, others progress slowly.

One of my books says asymptomatic people can have mildly positive or borderline tests (say, due only to a familial tendency), but that doctors don't treat unless symptoms are present. (And you generally must meet 4 or more of the 11 ACR criteria.) But you mentioned having symptoms... so you could describe them & ask for comments; or you could peruse lupus hardcovers written for patients, to see if yours are cited.

Re your LABS. Do you have copies, to see WHICH antibodies were tested? The ACR criteria (per "sticky post" at top of thread list) only includes the few considered "highly specific" to lupus = anti-ds-DNA & anti-Sm. The problem is that OTHERS are also possible in lupus. e.g., I was positive for anti-Ro, so if my drs. had run only anti-ds-DNA & anti-Sm, I'd have gotten nowhere.

re: THYROID, two friends of mine were borderline for several years. One has started treatment, the other hasn't. There probably is some accepted threshhold for treatment---did your doctor say what it is?

I think only you can sense when it's time to try a new doctor, but you could line things up, then wait & see. When lupus was 1st mentioned to me, I began reading. I also started a list of new doctors, incl. ones outside my suburb (I was losing faith in them). I waited until a big flare started, then called a teaching hospital dr. from my list.

I feel for you! Being in limbo is very confusing. I hope others here chip in with their thoughts. Sending warm wishes, Vee
Thanks for the reply and well wishes. I appreciate it. I had a response typed out but I was logged out for some reason. So, let's try this again :)

The only criteria for lupus I have are fatigue, mild anemia, hair loss, and possibly Raynauds? I'm not sure, but I just know my hands and feet get ice cold at times. That's actually what prompted my doctor to run the tests. I was at an appointment and had a family member with me. At the end of the appnt he shook both our hands and was disturbed by how cold mine were...but anyway.

Yes, I do have copies of the tests. I always request them after appnts. They did quite a few. No anti-la or anti-ro though.
The positive ones were SED (elevated at 35, it's been elevated in the mid 30s for the last yr and a half), CRP (just barely elevated), ANA (1:160, speckled), anti-dsDNA ("borderline positive").

As for the thyroid stuff, to be honest I'm so confused. I was actually put on thyroid meds for 6 mths last yr by an alternative dr I was seeing, despite my normal labs. About 70% of my symptoms went away, and 30% hung around. I didn't even realize the meds were helping me until I came off of them because the change was so gradual. I realize that I felt more normal and healthy on them, and feel rather, uh "poopy" off of them. I was taken off of them by an endo because I "don't need" them. I asked him why they had helped if I don't have a thyroid problem and he couldn't answer I dunno. I also have a slightly enlarged thyroid and thyroid disease runs on both sides of my family. No other autoimmune diseases though oddly enough.

Is a "flare" just a time when you feel really sick? I've noticed my symptoms follow a pattern that correlates with my cycle. I basically have reverse PMS. I feel fairly well the day before my period, during it and for a few days after. Then I feel like absolute crud the other 3 weeks of the month. The day before your cycle the female hormones plummet and stay down until about a week later and that just happens to be when I feel ok. I know there's a connection but my doctors can't seem to connect the dots and neither can I.

I also have a Vit D deficiency that is not responding too well to supplements. My D levels dropped 20 points in the last 5 months despite me taking a supplement everyday. I find that really strange. I also have a borderline low ferritin (26). I noticed the post about bug bites. When I was about 20 (27 now) I was bit by a mosquito at my Aunt's house. The mosquito bite swelled to the size of a tennis ball cut in half and would ooze pus when i pressed on it (sorry, that's a little tmi) it took about 3 weeks to heal. My Aunt thought it was the weirdest thing.

Anyway, this is way too long but I think I answered what you asked about. If you have any more input that's great. If not thanks again for the advice!
Yeah, that's what my primary said too. That the SED, CRP, and ANA show evidence of [I]something[/I], he just doesn't know what. I've had 2 drs in the past pass it off as anxiety or depression. But my primary says at this point with my labs that makes no sense and that something is wrong outside of my brain...

That's interesting that you had pre-menstrual issues as well. I did some reading yesterday and I saw an article that said that estrogen can exacerbate autoimmune disease symptoms. Maybe that's what we both experienced?

The tests that I mentioned (urine, thyroid, vit d, ferritin, etc) were the ones ordered at my appnt and I read them on the hospital's patient website. So they're very recent. However, my next appnt isn't until the beginning of next month so I have to wait to go over them with the doctor.

Oh trust me, I ask exactly what I want at the doctors lol. I used to be really wimpy and meek with doctors, until as you mentioned, I realized that gets us nowhere. I also had a nightmare a few yrs ago with getting a diagnosis for a previous life-threatening illness I had. The doctors' (there were several) collective negligence could have killed me, literally. So, yeah no more Mrs. Nice Girl lol.

The doctor was kind of vague I feel? He sort of just verbally and literally shrugged his shoulders, but not in a rude way at least. The only advice he gave me was to try to get my sleep habits under control to help control the symptoms. It's very difficult to do as I pass out into unintended naps throughout the day now. It messes with my ability to sleep at night. He also tried to explain my complete inability to lose weight on age...I told him I started having this problem when I was 16, and I'm still only 27 now, so uhhh :confused:? I think the age excuse is a little premature?, but maybe I'm just in denial ha...He also told me he's seen "tons" of patients with anti-dsdna at my level and that it was no cause for concern. He also said my ANA is a very weak positive and that I'm probably one of the healthy ppl that test ANA positive (but isn't that only like 5% of people?, the odds are not in my favor lol) If I sound annoyed forgive me, it's nothing against you of course. I'm just sick of being sick and sick of going to doctor appnts. Bleh :P

All times are GMT -7. The time now is 09:53 PM.

© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!