I had blood drawn on Friday and the some of the results came in today. (The doctor said he thinks the ANA must be positive and they are conducting further tests that are holding up the rest of the results.)
The only abnormal result so far is my platelet count being 585 (normal range is 150-450).
I was trying to find what that might mean in connection to lupus but it looks like most have -low- platelet counts? I'm not finding information on what thrombocytosis might be connected to, only that it can cause clotting? Isn't that what APS does, too?
The ANA came back positive, but only 1:80 Homogeneous. Before it was 1:320 Speckled. There was also blood in my urine. So he's telling me to see this specialist, but they can't get me in until May 17. Aren't they just going to repeat the same series of tests? Couldn't they do that now and discuss the results with me on the 17th, at least?
Shari, I asked him (GP) about specific tests for APS, as I knew I'd never had it tested previously, and I have had one definite miscarriage (tho I had a full-term pregnancy subsequently, with a threatened miscarriage in the 2nd trimester) and I have always had clotty periods, tho I didn't know that wasn't normal. He said if the ANA came back positive, he would refer me to another rheumatologist. I think he didn't know what APS was or what he would ask them to test, he looked unsure of my question. There is a bit of a language barrier with this particular doctor, I may not have been clear in my question.. :/
I thought I might be getting somewhere but I now I still feel like I'm running in circles.
It definetley sounds like you need a rheumatologist. I would see if they could move that appt. date up as blood in the urine indicates a problem. I doubt they'll send you for bloodwork before your appt., but bring a copy of the bloodtest results with you so you don't repeat them unnecessarily. APS (antiphospholipid antibody syndrome) can cause miscarriages and clotty periods. I'm not saying it's what you have, but you certainly should test for it. I'm going to ask Angelicbrat to read your post, as she is very knowledgeable about interpreting bloodwork on both lupus and APS. I'm sure she can help you sort this out. Shari
The part that confuses me with APS (well, that I'm aware of confusing me, I probably have the whole concept confused!)
...if APS is 'sticky blood'...why does that make you feel lousy? I know Angelic says if you have APS the Coumadin makes you feel so much better...is the blood 'sticking' to toxins or something weird like that? I sometimes have weird numb-pain in my left arm and my feet have cycles of swelling which is painful, but I'm not aware of any clots, definitely no seizures, and even with my miscarriage, it was detected so early they said that it's very common, but most women just don't even know they are pregnant in the first place.
Sticky blood prevents oxygen from flowing effortlessly to all body parts. It's kind of like sludgy oil in a car. If it can't get to the parts, they won't perform properly. Hence, aches and pains, fatique, confusion, etc. Hope this clarifies it a bit. I'm sure Angelic will be checking in shortly. Stay tuned. Shari
I finally called the Lupus Foundation of Illinois for a recommendation of a specialist, and that very nice lady said the teaching hospitals are best if you have them available to you and gave me contacts at three. Amazingly, Dr. Robert Katz at Rush Presbyterian (UIC) is both on my insurance and can see me next Friday!
[The funny thing is, my boss gave me permission just this morning to tell some organizers at work that I had a dr appt that day so I wouldn't have to go to an 'optional' (but entirely expected) staff party. I think it was kismet!]
I am finally here.. I had some appts in the city today and just got home a little while ago
Ember- The Rheumatologist will run MANY more tests to see what is going on. Usually, the GP will run the "basic" antibody tests. The Rheumatologist will run tests such as the Anti-DNA, ENA panels etc to try and figure out WHY your ANA is positive. My best advice to you is to make sure that he does do ALL of the testing (including the tests for APS). And Shari is right about explaining APS.. its very much like sludgy oil.. the blood will tend to "stick" and clot more easily in patients with APS! Once you are treated, the blood flow improves with the blood thinners.. making the "oil" in the car free flowing again.. like its meant to be. With improved blood circulation, we have a huge improvement in our symptoms. I notice that my circulation is SO much better now, my hands and feet don't turn as "denim blue" as they did before- and I don't have as bad of hot/cold spells either with the blood thinners. If your platelets are high, I would suspect that it could be from infection, iron deficiency or Rheumatoid Arthritis. do you have low iron in your blood? That is my suspicion.. it is very common with those of us with autoimmune diseases to have iron deficiency. Myself, I have both B12 and iron deficiency! I would check with your GP and see if you have a low iron level first and they we can go from there.
I am glad that you are going to see a Rheumatologist soon. The Rheumatologist should be able to figure out what is going on with you. Sometimes they aren't the greatest with Lupus patients, but I will hope that this one is able to get you figured out! Just remember to take a symptom list, your blood work (with all the abnormalities), and other useful information with you. Please take care and let us know how it goes Ember!!