Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hello,
I was just diagnosed a few days ago with Lupus. I just moved to Virgina from Michigan and fell into this diagnosis. I started going thru what labs I could find. I have found out since 2006 I have blood and protein in my urinalysis.
My recent UA proteinuria was 30 and my eGFR>59.
My ALT in 2006 was 22, 2007 was 44, 2009 was 37 and recently 14.
My AST in 2006 was 21, 2007 was 22, 2009 was 23 and recently 15.
If you could just explain what all these #'s and names mean I would greatly appreciate it. The doctor(Internist) is referring me to see a rheumatologist and dermatologist. The 1st time seeing this doctor was this past week. I went from having familiar surroundings, doctors and family to lupus........I feel like I should have gotten a manual with the test results. Not to mention a diagnosis I was not expecting..I already have Chronic fatigue syndrome and fibromyalgia. Thanks for any help with decoding this=)
I was just diagnosed a few days ago with Lupus. I just moved to Virgina from Michigan and fell into this diagnosis. I started going thru what labs I could find. I have found out since 2006 I have blood and protein in my urinalysis.
My recent UA proteinuria was 30 and my eGFR>59.
My ALT in 2006 was 22, 2007 was 44, 2009 was 37 and recently 14.
My AST in 2006 was 21, 2007 was 22, 2009 was 23 and recently 15.
If you could just explain what all these #'s and names mean I would greatly appreciate it. The doctor(Internist) is referring me to see a rheumatologist and dermatologist. The 1st time seeing this doctor was this past week. I went from having familiar surroundings, doctors and family to lupus........I feel like I should have gotten a manual with the test results. Not to mention a diagnosis I was not expecting..I already have Chronic fatigue syndrome and fibromyalgia. Thanks for any help with decoding this=)
Every lab is different and will show different results, but on average I think up to 20 is usually normal.
One abnormal test does not mean that you have liver problems but it is the whole panel that tells the story more. The tests can be complicated.
If you learn nothing else from us, learn these things: ALWAYS ASK FOR COPIES OF YOUR LABWORK. Just because a doctor mentions something doesn't mean that you have that disease. (Doc will say, "You know, it looks like myasthenia gravis" and then the person freaks out they she has MG when it was really just an off the cuff remake. Doctors make mistakes. If you only knew the number of times everyone on this board has been told they have lupus, no they don't have lupus, yes they do..... I'm currently in the no I don't category. Now about your info:
Tests like the AST and ALT fluctuate ALL THE TIME. They are liver function tests and they CAN be affected by viruses. However, you can't tell anything looking at two tests from 2006, Normal AST (aka SGOT) is between 4-40 so both of your AST were NORMAL. Normal ALT (aka SGPT) is between 5-50. Again NORMAL. So now you know you have normal liver tests right now. Good thing..
Let's look at what's going on NOW. Protein and GFR have to do with your kidneys and not your liver (though everything is connected in the long run)..
The amount of protein you are passing (was it 24/hr test?) is quite high. Normal is under .01. Did the doc mention whether you were passing cell casts, red blood cells, leukocytes? Usually with high protein there are other things that go along with it and those things can point at where the problem actually is in your kidneys.
The creatinine clearance rate for your age as a woman should be 71-121. To calculate GFR you use a formula:
GFR = (140 = age)(weight in kg)
___________________
72 X serum creatinine (which I don't have)
Then for women values are 85% of predicted so multiple the number by .85 to get an actual value.
The reason that I wrote out this formula is so that you understand that someones a test value isn't want it appears to be.. The computers are set up to give values for MEN. And that can skew things. The testing was all initially done on men so the values are for men. Later, the techs went back and came up with formulas to correct for what comes up and get a number for women. I am guessing based on the "e" in front of GFR that this was all done electronically possibly without the information in the formula. If you can give me the info, I'll calculate it for you and we can see whether it matches.
The normal GFR for women is (115-125) so your rate is LOW. My lab book (("Interpretation of Diagnostic Tests" Jacque Wallach) puts you in the category of "mild impairment" so this is something the doc will watch.
Have you been to see a nephrologist? He'd be the doc to handle any kidney disease. The scary part about kidney disease is that the tests don't show impairment until late in the game so you'll need to be followed to make sure this doesn't get worse. Or you may need medication.
I know this is a lot of info to swallow. However, I'm going to give you a link to a website about labwork which might help you understand: http://www.labtestsonline.org/understanding/analytes/ast/test.html
Re your diagnoses of CFS: it's likely that you don't have CFS. Lots of lupus patients are diagnosed with that prior to getting enough of the criteria to be diagnosed with lupus. We are particularly susceptible to making antibodies against ANYTHING. Members of this list can tell you war stories of being told they had AIDS or other scary things when it wasn't the case. Just the standard, cheap way of testing for those diseases looks simply for the antibody, something we make quickly and the disease goes no further.** And the majority of symptoms for CFS are also lupus symptoms. Discuss this with your new rheumy. Fibro, however, often coincides WITH lupus.
Tracy
** About AIDS and lupus. In the 1980s, many lupus patients received contaminated blood because the hospitals didn't know to screen for AIDS. In a group of non lupus patients given tainted blood accidentally at hospitals, about a 1/3 developed AIDS/HIV (like Elizabeth Glazer). No lupus patients developed AIDS. Since then a peri-natal infant came up with AIDS and lupus, and one woman (whose lupus was questionable). I'm not saying to skip safe sex, but it is NICE to hear that our disease does do something for us. Much like sickle cell anemia which protects Africans from malaria when the person only has 1 marker; 2 markers means sickle cell and possible death. So please, still practice safe sex, but I thought I'd mention it. (It's mentioned in Wallace's book.)
Tracy
Are you sure the doc said "MIXED" connective tissue disease and not "Undifferentiated" connective tissue disease? These are two VERY different things. MCTD is when you have MORE THAN ONE AI disease (like lupus AND Sjogrens for instance). (Note: having lupus and fibro does NOT mean you have MCTD.) UCTD is when you don't have enough SPECIFIC symptoms to classify you as any particular disease. It's unlikely (though not impossible) that a first time diagnosis would give you a MCTD diagnosis, but rather more likely it's UCTD which is working up to having lupus..... You would have to have positive antibody tests for several diseases and youi don't mention that.
No offense intended (and I am NOT saying that you aren't hurting or sick so don't misread this), but I would hold off investing in lupus as your diagnosis UNTIL you see the rheumy. If this doc confused MCTD and UCTD, then he's not well versed in rheumatology and you may have had just a positive ANA and he decided that you have lupus. It's pretty common for internists to say you have something and the specialist to say you don't. But the specialist is the one with the real training.
Now, regarding Dr. Wallace: The Lupus Book is at least 10 years old and has not been revised and rereleased. Dr. Wallace is considered to be the FORMOST EXPERT in lupus and is the author of the several thousand page DuBois' book which is THE text book. Wallace does more lupus research than any other doc in the world also. It may be that what's in that book doesn't jibe with other studies because the book is OLD and the science has changed. That being said, just because someone posts on this list that she has something doesn't make it a fact either. Wallace has treated thousands of lupus patients and not found over lap between the two diseases which makes perfect sense if you think about it. You can not have immunodeficiency AND lupus because they are mutually exclusive. However, you can have FALSE POSITIVE HIV tests in lupus patients (and that happens all the time). More than likely that woman may believe that she has HIV because she has an inexperienced doctor who isn't aware of the false positives. Dr. Wallace may not be right 100% of the time, but he has more experience and knowledge about lupus than most doctors put together. He was a resident in DuBois' lupus clinic at USC Hospital which was the FIRST lupus clinic in the USA. Wallace has also written more scientific papers on lupus than any other living doctor. So before you throw stones at him, check the publication date of something. Science evolves. This is exactly why when I was first diagnosed the survival rate was 5 years in the books. And most of those books talked about patients in the 1970s when only the most ill patients got diagnosed. And although science evolves, those same books remain on bookshelves....