Reading about what the different blood test results meant was part of the big google marathon. In the beginning, it was mostly about finding something that suggested that the diagnosis might be a mistake. That the test results were low, that they could be due to something else. Eventually, the unstoppable need for information was probably more a about feeling some kind of control. Searching for information became a place to put my focus when it felt like everything related to health and my own body was falling apart. An attempt to understand where on the lupus spectrum I was. I still ask for a copy of the test results from my check-ups. Yesterday it was time for a new round of blood tests and I asked for a printout of the blood tests from last month. Looking at det result from the antibody tests made me smile all the way out of the hospital.
There are a lot of test results on the printouts, so the ones I list below are just some of the ones I have had a curious relationship with this year. This must not be understood as me trying to interpret the blood test results in any way. I leave the interpretation of the test results to the doctor. The current status is that the doctor calls me if something is starting to look worse. But I still like to see the results on paper,that they are improving. That I am closer to the reference range than I was last time. What follows below are a lot of numbers, test results. But since this was the kind of info I tried to search for when I was diagnosed, I choose to share. ANA ANA stands for "Antinuclear Antibodies" this test screens for whether there are auto-antibodies that can attack the cell nucleus within the body's own cells. The test is either positive or negative. If this test is positive, it means that there are auto-antibodies in the blood, but it doesn't necessarily mean that you have a disease. Healthy people may have a positive ANA test, but if you have SLE, it's very rarely negative. A positive test is followed up by testing for different subgroups. The different subgroups are linked to different autoimmune diseases and give an indication of what is being attacked in the body. Anti-dsDNA (reference range: 0-10) This antibody is quite specific for SLE, which means that it is very rarely positive if you don't have SLE. This value can fluctuate and indicate rise or fall in disease activity. This antibody is one of the risk factors for developing lupus nephritis and vasculitis (inflammation of the blood vessels). When I got sick in December, the result was 269, while at the end of April it was down to 23. The last test from September shows that this is down to 17, which means I'm pretty close to the reference range !! anti-SM. (Reference Range 0-7) This antibody is very specific for SLE. 5-30% of those who have lupus have this antibody. This antibody is associated with the involvement of a number of organs and symptoms including kidneys, vasculitis, serositis (organitis) and Ryanaud's. The amount can according to this article say something about the disease activity, while according to Lupus Encyclopedia it doesn't. When I got sick, the result was 254, while at the end of April it was down to 25, now in September it's down to 13. SSA / Anti-Ro (reference range 0-7) this antibody is associated with Sjögren's Syndrome and SLE, but approximately 60% of those with Sjögren's syndrome have it as a secondary diagnosis of SLE, rheumatoid arthritis or systemic sclerosis. SSA increases the risk of rash and photosensitivity. In addition, it increases the risk of inflammation of the lungs, liver and heart. The antibody can pass through the placenta and cause heart block in the fetus. The antibody is also linked to the neonatal lupus rash. The amount is not related to disease activity and for me this has been over 240 this whole time. SSB / Anti-La (reference area 0-7) this is always mentioned together with SSA and is also linked to Sjögren's Syndrome. It carries many of the same risks including heart block in the fetus and neonatal lupus. Most often this is positive together with a positive SSA and less often on its own. When this is positive, there is an increased risk of developing Sjögren's syndrome over time. For me, this is negative. RNP antibody (reference range 0-7) This antibody is not as specific and appears in connection with several rheumatic diseases such as Rheumatoid Arthritis, Ryanaud's phenomenon and Mixed Connective Tissue Disease. It's often used to diagnose MTCD, as high rashes are often associated with it. When Anti-Sm is positive, this one is usually also positive. In my case, I had 29 in December, in April it was 10, while in September it was negative! Antiphospholipids are linked to a disease called Antiphospholipid Syndrome. This syndrome causes blood clots and can lead to miscarriages. Having some of the antibodies doesn't mean that you have the syndrome, as long as you have no history of blood clots and miscarriages. However, the fact that the antibodies are present increase risk for these kind of events and in the case of, for example, pregnancy and long flights, blood thinners may be needed. To confirm a positive result it must be tested twice at 12-week intervals. Each of the antibodies increases the risk on their own, but if you have all three antibodies and higher results the risk goes up. The fact that they are present means there is an increased risk that clots may form, it doesn't mean that it will happen. Nor does it say anything about how often or how serious they become. Lupus anticoagulant (LA) (reference range 0.68-1.34) - The risk in connection with pregnancy is highest if you are diagnosed with lupus anticoagulant or have all 3. On this I have 1.02, meaning negative! At this point it feels like I have to be happy for all the antibodies they don't detect. Anti-cardiolipin IgG (aCL) (reference range <20) The antibody affects the body's ability to regulate coagulation in the blood so that clots form. I have had a result on this one twice, with 41.4 in February and 35.7 in May. According to the doctor it's not a high titer, but it is a positive result with all the precautions it entails. From 10-39 is considered a weak positive according to this lab handbook. Beta 2 GPI IgG (aβ2GPI) (Reference range <20) When diagnosing APS, this is more specific than the 2 above, and in some cases the only one that is found. I had a slightly higher result with 91.2 in February and 85.7 in May. Complement C3 and C4 (reference range C3: 0.83 - 1.93, C4: 0.15-0.57) The complement system is proteins in the immune system that help the antibodies and the white blood cells fighting invaders. One of several tasks of this protein is to attach itself to and label infectious invaders so that the immune cells can find them and attack. They are usually inactive and are activated by infection. In lupus, low or declining values can be a sign of increased disease activity, since these are consumed when activated. Therefore, C3 and C4 are part of the tests that are monitored to monitor disease activity. These are very small numbers, so for my own part I just register that they are both higher than they were in December. SR (reference range <20): Blood drop (SR) indicate there is an inflammation in the body and how strong it is. It's a measure of how many mm the blood has sunk in the test tube in one hour. With inflammation, the cells clump together more and sink faster / further down. The higher the number, the stronger the inflammation. By comparison, my tests in December showed 44, down to 15 in April and now 7 in September. B-HbA1c (Reference Range 27-42) Long-term blood sugar. Since I am on prednisolone, my doctor monitors my long-term blood sugar to see that I am not developing diabetes. This was especially important when I was on the higher doses. I already have a close relationship with blood sugar and the effect of insulin through my sister who has had diabetes since she was little. Long-term blood sugar fluctuates a bit, and it may look like the effort I put in to limit sugar intake was reflected in March when I was down to 33 compared to 39 in December. And when I eased up a bit, it was up to 41 in June. Now in September it was 36, but since I am now down to 5mg prednisolone, I don't worry as much about blood sugar as I did in January-March. Creatinine (reference range 45-90): Creatinine is a waste product from the muscles that the kidneys filter from the blood and into the urine. If the kidneys don't work properly, the level in the blood rises. There are some variations on what is normal for a person, among other things, muscle mass, but it gives an indication that there is something wrong with the kidneys. In December this was increased up to 122, while in April and September I was within the normal with 74/75 e-GFR (Creatinine) (reference range> 80) eGfr stands for "estimated glomerular filtration" rate and says something about how effectively the kidneys filter the blood. It's the creatine level put into a mathematical formula that takes into account age, gender and race. In December, this dropped from 77 to 49 during the week after I had taken the first tests at the GP. 49 means slightly to moderately reduced (45-59). Combined with the other results, I was quickly admitted for kidney biopsy. In April and September, on the other hand, this test was normal again with 89/87. Leukocytes (reference range 3.5-11.0) Leukocytes are a measure of the number of white blood cells. This test result appeared on my radar this autumn when I was told that I had falling white blood cells. This is common in lupus and is called leukopenia. Leukopenia can be due to both increased disease activity and a side effect of the medicine. These have fluctuated slightly from 4.4 in December, down to 2.8 in April, up to 3.8 in June, 2.3 in July and 2.2 now in September. Sources: The Lupus Encyclopedia www.ncbi.nlm.nih.gov/pmc/articles/PMC4475431/ www.orgentec.com/en/products/alegria/Autoimmune+Disease+Diagnostics/Rheumatology+Diagnostics/ORG+210.html tidsskriftet.no/2021/05/klinisk-oversikt/svangerskapskomplikasjoner-hos-kvinner-med-systemisk-lupus-erythematosus Https://nhi.no/sykdommer/infeksjoner/undersokelser/blodsenkning-sr/ https://www.hss.edu/conditions_understanding-laboratory-tests-and-results-for-systemic-lupus-erythematosus.asp Https://labtestsonline.org/tests/cardiolipin-antibodies
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AuthorA blog about beeing newly diagnosed with lupus. Dreaming of becoming a mum once the disease is under control. I am translating the blog to English so the posts will appear on this page as I go. Archives
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