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Old 06-08-2004, 05:33 AM   #1
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Dee74 HB User
Really confused about these ANA titers.. help?

I'm going back Monday to the rude Rheumy that I saw a couple weeks ago who ordered a bunch of blood tests.. another ANA being one of them. I've never looked at my past ANA titers, so I'll have nothing to compare it to.

I want to go to him ARMED with information just in case he blows me off again - and I'll also have my hubby with me, who is not the quietest person in the world when it comes to doctors treating me like I'm a wacko..

I keep reading SO many different things about what is a normal ANA and what's not.. this is one of them..

Reference Interval
Negative: <=1:40
Borderline: 1:80
Positive: >=1:160


And this on another website....
"Patients with an antinuclear antibody titer of 1:40 and characteristic multiorgan system involvement can be diagnosed with systemic lupus erythematosus without additional testing; however, patients with an antibody titer of 1:40 who fail to meet full clinical criteria should undergo additional testing"

And of course, I've found different values as well.. I won't post them all, I'm sure you get the picture lol

So you see, I'm finding different numbers and it's just confusing me. I'm going to DEMAND a copy of my blood work from this meaniehead. And then when I go back to my regular doc, I'm going to request the copies of the others from her.. I'm sure she won't put up a fight at all. I just want to know what I'm looking at and if he tells me that the ANA is negative, which it could be, I just want to be able to verify that myself.

I want a friggin diagnosis.. whether it's Lupus, Fibromyalgia, or Lyme disease (those are the 3 main things they're considering). I DO have many symptoms of Lupus (rashes, mouth ulcers, muscle and joint pain, etc), but this doctor swears that you CANNOT have Lupus without a positive ANA.

Can you help me to understand? I mean, do different labs just have different titers they go by to know what's normal and what's not? If it's any help, I went through Quest Diagnostics this last time.

Thanks

 
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Old 06-08-2004, 06:28 AM   #2
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Re: Really confused about these ANA titers.. help?

Dee, I'm not going to speak to your ANA questions, as others here (AngelicBrat, etc.) are more conversant.

I just want to say that I finally got my Dx only because of *skin biopsy* results, and only when those were done by a teaching hospital dermatopathologist. I am ANA negative and autoantibody negative & have been all along because I am in a SUBSET, the intermediate one = SCLE, where ANA & autoantibody odds both are roughly 70/30.

My local doctors insisted that I needed positive bloodwork to get Dx'ed. Not so for THIS SUBSET... As far as how lousy you can get with this subset, you can have the full range of SLE symptoms, with the biggest problems possible but in lower probabilities. I was actually a "4" on the "4 of 11" at time of Dx.

So my thought here is this: ANY CHANCE at all that your fits the characteristics of an SCLE rash as oppsed to the malar rash? If so, *maybe* you need to find out if your doctors have ever even heard of SCLE.

This is one ugly thought, but none of my local doctors had---shockingly, incl. a local dermie who is also on staff at a Manhattan teaching hosp., whom I'd paid out-of-pocket in order to go to the "best".

I hope you two (you & your noble hubby) make out with "Dr. Rude Rheumie". I used to take my husband with me, too. Awful feeling, isn't it, to need "muscle" to see a doctor?! All my best to you.

Sympathetically,
Vee

 
Old 06-08-2004, 07:20 AM   #3
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Re: Really confused about these ANA titers.. help?

Veej, thanks

The rashes that I get are always on my upper torso. Mostly on my upper arms, sides, and upper back at the neckline. They're red patches, some are big, some are small, some are raised and kind of pimply looking, others are flat, scaly, and light red. They're all round, but one which is more oblong that's about 3 inches in length. None of them itch at all.

I haven't even shown them to any of the docs yet because I never suspected anything but really dry skin or something. So I'm going to let the Rheumy check them out Monday. And then maybe see a dermatologist.

If this rheumy doesn't figure it out or whatever, I'm going to Cleveland to some teaching hospital there. My regular doc has already mentioned that she would like to send me there. SO I guess that's the next stop if we don't get anywhere with the quackyidiotmeaniehead.

 
Old 06-08-2004, 10:26 AM   #4
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Re: Really confused about these ANA titers.. help?

Hi...I want to say don't settle or a fibro DX only....fibro does not cause joint pain. BUT a Lupus dx can take time for all the things to show up.

As far as the titers, I have seen 1:80 being considered a pos ANA for a diagnosis, I don't think that 1:40 would though.

Mine started at 1:80 and now a year later is 1:640....
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Old 06-08-2004, 03:50 PM   #5
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Re: Really confused about these ANA titers.. help?

Oooooooh, Dee74!

You seem to be describing something that sounds VERY MUCH like the rash I had for many years. It started in the early 90's, as welts that looked like mosquito bites. About 4 years of this, roughly every three months. Interestingly, I was getting more summer sun than I'd had since my teens.

Then the welts would appear and "morph" into big red rings. The very first red ring I got was on my back: local dr. treated me for Lyme. I was so sick the day it bloomed, I thought needed hospitalized: shivering, shaking, burning with fever, pain all over, dizzy, huge headache, etc. Then the rings started appeariing on upper arms, underarm area, shoulders, etc. NEVER on my face: nada there.

I had the ringlike rash format for four more years before being Dx'ed with SCLE = subacute cutaneous LE.

FYI, demographically, SCLE favors women (like the other lupus types), esp. those of W. European descent. Median age of onset is something like 43. Rash favors *upper torso*, but rarely appears on the face, too, though. (I howled when I read this data, it fit my situation so perfectly: I'd nailed *something* right! )

If you use your browser to look up SCLE, you can find pics. Look for the dermatology websites, ones written in "medical-ese". See what you think, just from a visual standpoint. (Biopsies still required, of course...)

Last I knew, Cleveland Clinic still enjoys a great rep. I was born & raised north of Pittsburgh & knew people who went to specialists in Pgh. & Cleveland. You do have good choices, Dee. So---regards & best wishes & good luck, from Vee

 
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