DRVVT 47 ( range is 22-43 sec)
CRP 1.700 ( range 0.000-1.000) mg/ld
SED Rate 58 ( range 0-20)
Albumin Serum 48.7 (55.0-63.0)
Albumin 3.41 (3.50-4.90)
Beta Serum 20.0 (9.0-17.6)
Beta 1.40 (0.60-1.20)
Hydroxy D2 < 3.0
D3 and vitamin D total 11.7 ( low)
No Abnormal restrictive protein bands seen ( do not know what that means)
Hypoalbuminemia ( this is probably due to proteinuria due to reoccurent kidney stones)
Protein total- normal
Protime INR - normal
Protein C function and S antigen- normal
Beta 2 glycoprotein IGG 15 ( <=19) normal
Beta 2 IGM 0 (<=19) normal
cardiolipin IGG 0 (<=22) normal
IGM 0(<=10) normal
HEM PANEL- ALL NORMAL except slightly low hemoglobin 11.8 ( 12.0-16.0)
Platelet, and mean Platelet Normal
Autodiff ( all normal)
ANA - normal
Smith antibody- neg
sjogrens ssa, ssb- neg
being refered to a lung specialist looking for sarcoidosis. I am a little thrown on my results. I do not understand what the DRVVT result would mean on clotting factor with lupus, if my lupus tests come back Negative. What does that have to do with anything.?
Is there any other tests anyone can think of that I need to be asking for?
I have had proteinuria for 20 years with no kidney function problems, stone development started ten years ago, painful joints, muscles and nerves, sometimes I get tunnel vision( once every couple of years) and sometmes I lose my side vision but never lasts more than twenty minutes, was told that was occular migrains, but getting tested for sarcoids on that one, bells palsy in November, good recovery accept left eye still a bit blurry, I can get fatigued. Had a small granuloma on right lung two years ago, but after bells palsy and steriod treament it was never mentioned on ct or xrays again. so I dont know if that means its gone or not. Use to be treated for hypertension until kidney stone removal then all went back to normal. I am over weight, due to being over weight I have a bit of fatty liver, which could be my albumin results. Seen Rheumy doc and after she ruled out I didn't have RA she was no longer interested in results, told me I had fibromyalgia, and that is why my crp and sed are elevated and that was it.. looking for suggestions and trying to understand how DRVVT is what it is without lupus.
The DRVVT is a test for anti-phospholipid antibodies, which corresponds to the lupus anticoagulant factor. Although "lupus" is in the name, you can have this be positive, like yours is, with or without systemic lupus. Antiphospholipid syndrome predisposed to blood clot formation, and can help explain why someone develops clots. The test is used to confirm that a clotting disorder exists, and calls for long term treatment for it to prevent future clots. The elevated sed rate, which is quite elevated and the high CRP are both inflammatory markers consistent with an possible antoimmune condition. Your serum ACE is definitely high, and sarcoidosis is a possibility, but there are false positives on ACE that can occur. The 20 year history of protein in urine should not be related to the kidney stones. The protein loss from kidneys can reduce the serum albumin. It is imperative to find out more about the proteinuria, and in view of all these abnormalities, I think lupus is still a possibility. You should have antibodies to DS DNA tested. Those correlate closely with lupus kidney disease. I think you should also see a nephrologist. The small granuloma in lung may not be meaningful, and unless you have other signs of sarcoidosis, the diagnosis of it is unlikely. I don't buy the fibromyalgia diagnosis. It doesn't cause sed rates of 58. Inflammatory conditions like lupus do, and I think that needs to be pursued further.
I think the DRVVT confused me because I have never had a clotting problem. I do see a kidney doctor and a urologist that follow me closely with the protenuria, but they do not seem to be bothered by it for a couple of reasons. 1. My kidney function tests always come out perfect. 2. We took it from 3 plus, to trace amounts just by getting rid of a 14mm kidney stone, limiting oxalates, and reducing sodium. 3. Because I spill the protein, and calcium in my urine, and my PTH is elevated, they are more inclined to blame the protenuria on Parathyroid Tumors which they say are not cancerous, but will cause these problems until removed. That being said. My concern would be the fact that I do not think they stop to evaluate that I have had the protein in my urine for over twenty years, and that was long before I ever had a kidney stone or calcium in my urine. I appreciate your answer very much. This is a very scarey time for me, and I will request that my doctor test my antibodies to DS DNA. I was told they did an ELISA test. And that came back negative? is that different from the DS DNA? They do plan on having me follow up with endocrinolgy to deal with the parathyroid gland, but this week alone they are having a heart monitor on me for a month, to see if we are missing problems, even though my stress test ( said I was out of shape but okay heart wise) and my echo came out good, now they want to make sure the rythm is what it needs to be when I am doing normal things, stressed out, and see if they catch something they are missing. Sadly this testing came from my neuropthomologist when I complained about my vision loss, the regular eye doctor said unless neuro says its occular migraines then no one should be diagnosing that, and once I spoke to her about my history, she was more aggressive about testing me than my rheum doctor was. I have a rheum doctor, urologist, nephrologist, nutritionalist,orthopedic and family doctor, neuroopthomologist,and a neuro doctor who deals with my nerves, and then to top it off.. a psychiatrist to try to help me keep my brain straight. You would think with them all working in the same university that at some point they are capable of coming together, looking at it all and figuring it out. That is why I am trying to talk with you all, and get a general idea, that for better advocation from me, what I can be asking them to look for, and what tests I might bring up to them. .Thank you again so very very much for responding.
Thanks for additional info- it is helpful. Interestingly, parathyroid adenomas, the benign small tumors, can be associated with sarcoidosis and parathyroid glands can be infiltrated by sarcoid granulomas and act like adenomas. So that lends support to the sarcoidosis possibity. If you've never had a clotting problem, it may be that a daily baby aspirin would be a good preventive measure. I would ask your Dr. about that. Also, the pituitary gland can be affected by both adenomas and sarcoidosis, and it sit right next to the optic chism. Tumors can press on the optic chiasm and affect vision as well as cause headaches. I would want a brain MRI done with attention to pituitrary gland. Bell's palsy can be a manifestion of autoimmune disease, like lupus, from inflammation of the facial nerve. The ELISA is a method of testing, not a test itself, so you'll still want to ask for a DS DNA antibody test. It sounds like you have a good team and Drs are doing a good job. With unusual problems like sarcoidosis, you need that, so keep advocating for yourself and learning and you'll do well. Keep us posted on your progress!