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New here. Waiting on lab results.


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Old 06-13-2016, 09:21 AM   #1
somebody84
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New here. Waiting on lab results.

Hello. I'm new to this board. I'm currently waiting on lab results that could confirm if I have lupus.

It's weird. I've been trying to get answers for years and the most caring doctor I have encountered is one from urgent care. I've been tested before, awhile ago, but it always comes back borderline, but I have also never experienced symptoms to this extreme before.

It started Wednesday in the middle of the night. I woke up with chills, a fever and really bad body aches. I thought I had the flu and took the next couple days to recoup. By the weekend I was still fighting a fever, but the chills had gone away. The fever was causing me to sweat excessively and I was getting dehydrated. My joints were so stiff it was hard to move around and my headache was killing me. I think from my neck. By Saturday evening I got a rash on my cheeks and across my nose and by Sunday morning I had a rash on my chest. So, my fiancé took me to Urgent Care.

The guy I saw was really caring and he was actually concerned with my symptoms. He said the rash I had was the butterfly rash and based off my family's history (auto immune diseases), my history and my current symptoms he thought it was more auto immune related, like lupus, and not the flu.

He ran a CBC and CHEM work up and my WBC, RDW% and platelets were low. He sent off for more tests like: lupus anticoagulant, t-reflex panel, RA factor, Sed rate and TSH. Oh, and he told me to see my primary care doctor right away.

So, here I am. Is it okay that I wait here?

 
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Old 06-13-2016, 10:00 AM   #2
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Re: New here. Waiting on lab results.

Hi & welcome. So sorry for your symptoms and the time it's taking to figure them out! The tests ordered by urgent care certainly include some of the main tests you'd expect a doctor to order for suspected lupus and similar AI's, also thyroid disorders, but some key ones might be missing, such as ANA, and tests for specific ANA subtypes (such as anti-ds-DNA, anti-Sm, anti-Ro, anti-La, and a whole raft of other "anti's"). Also, urinalysis is considered a must-do test where lupus is suspected.

So Urgent Care may not have ordered "everything" needed. Even so, why wait? Because your platelets and WBC were already confirmed low, I'd call my primary now. Why? Because you need to know whether your levels are DANGEROUSLY low. The antibodies mistakenly produced by our immune systems can attack various types of cells, including those two (platelets and WBC's). Additionally, WBC's can go low because of active lupus. But last---and this is a big one---platelets can sometimes even fall to a dangerously low level, which is called thrombocytopenia.

IMO, Urgent Care would probably have raised a HUGE hue & cry if your values were "scary-low"---but again, why wait, why not play it safe?

Does your Primary have computer access to the tests ordered by Urgent Care, or are they operating out of separate medical systems? If the two are separate, you could try to get copies of all results from Urgent Care, so that you could fax them to your Primary before your appt. or just bring them along with you.

This is not meant to scare you, btw, just to say that, in your shoes, I'd see my Primary quickly. Your Primary might refer you directly to a Rheumatologist, or might run more labs first, but main thing is to let a DOCTOR make that determination...

I hope this isn't lupus, but if it is, hang tough. Please know that many patients do well in this day & age.

I hope you touch base again soon, to let us know what's happening. And we're here anytime you feel like talking, OK? Sending best wishes! Bye for now.

 
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Old 06-13-2016, 10:31 AM   #3
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Re: New here. Waiting on lab results.

VeeJ - thank you for the reply.

You're right. I don't think he ordered the full testing, but he did say that they can only do so much diagnostic testing at an urgent care center and I think that's why he urged me to see my primary. I will be making an appt to see her this week. The sooner the better.

He did diagnose me with polyarthraglia, butterfly rash, other neutropenia and thrombocytopenia.

I don't know how low is too low. I just know my wbc is 3.3 and the range is 4.5-11 and my platelets are 106 and the range is 150-450. As far as my rdw% goes it was 11.2, but he seemed more concerned with the wbc and platelets.

I did get copies of my cbc to take for my primary and urgent care said as soon as the other tests get in I can come pick up copies, too.

Thank you. I'll see how soon I can get in to see my primary.

 
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Old 06-13-2016, 10:46 AM   #4
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Re: New here. Waiting on lab results.

Good, glad you'll proceed right now, not wait. When you call for appt, let them know your WBC and platelets are low, as maybe that will get you an appt faster. Yes, Urgent Care doctor sounds caring and very capable. We'll all watch for your updates. Sending hugs!

 
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Old 06-13-2016, 10:49 AM   #5
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Re: New here. Waiting on lab results.

VeeJ- thank you.

Oh, when I asked if I could wait here I just meant why I go through the process of this. The test results, my primary Doctor, etc. I wasn't literally going to wait and do nothing. Sorry if it came acrossed that way.

I'll keep everyone posted. Thank you again!

 
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Old 06-13-2016, 10:54 AM   #6
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Re: New here. Waiting on lab results.

Gee, thanks for clarifying! Yes, I was worried about your just waiting. Hope you get an appointment ASAP. You do NOT want very low platelets, as that can cause spontaneous internal bleeding, including brain. If you still have that headache, honestly, I'd head straight to the ER, not mess around. So go do your thing, OK? Sending more hugs! P.S. Forgot to say, yes, people who are still in diagnostic limbo post, and hopefully can gain some useful ideas & also make new friends. I'm glad you found us!

Last edited by VeeJ; 06-13-2016 at 11:55 AM. Reason: Added P.S.

 
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Old 06-14-2016, 04:24 PM   #7
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Re: New here. Waiting on lab results.

Quote:
Originally Posted by VeeJ View Post
Gee, thanks for clarifying! Yes, I was worried about your just waiting. Hope you get an appointment ASAP. You do NOT want very low platelets, as that can cause spontaneous internal bleeding, including brain. If you still have that headache, honestly, I'd head straight to the ER, not mess around. So go do your thing, OK? Sending more hugs! P.S. Forgot to say, yes, people who are still in diagnostic limbo post, and hopefully can gain some useful ideas & also make new friends. I'm glad you found us!

Thank you. I did take your advice and go to ER. It wasn't a very good experience, honestly. I started spiking a high fever again last night and my headache wasn't getting any better. On top of that I was getting petechiae type dots on my legs. Not only did they do nothing for my pain there was a lot of miscommunication. In the end the doctor thought the headache was caused by viral meningitis. They ran some more blood work and my wbc is still low, hematocrit was low, AST and my ALT were high.

I got my other lab results back from Urgent Care.

My sed rate was in range at a 12.

R factor was a 13. Just at the cut off. <=13 IU/ml was the reference range.

Ana screen says negative. There's no titer or anything.

My dsDNA Antibody index was 6.0 and considered high. The cut off was a 4. That's the first time I've seen that.

And my dsDNA antibody result was indeterminate.

So. I don't really know where this leaves me, but I have have an appt on Thursday. My primary Doctor left the practice (I just found out) but the doctor I'm suppose to be seeing has great reviews.

Last edited by somebody84; 06-14-2016 at 04:38 PM.

 
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Old 06-14-2016, 06:54 PM   #8
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Re: New here. Waiting on lab results.

Quote:
Originally Posted by somebody84 View Post
Hello. I'm new to this board. I'm currently waiting on lab results that could confirm if I have lupus.

It's weird. I've been trying to get answers for years and the most caring doctor I have encountered is one from urgent care. I've been tested before, awhile ago, but it always comes back borderline, but I have also never experienced symptoms to this extreme before.

It started Wednesday in the middle of the night. I woke up with chills, a fever and really bad body aches. I thought I had the flu and took the next couple days to recoup. By the weekend I was still fighting a fever, but the chills had gone away. The fever was causing me to sweat excessively and I was getting dehydrated. My joints were so stiff it was hard to move around and my headache was killing me. I think from my neck. By Saturday evening I got a rash on my cheeks and across my nose and by Sunday morning I had a rash on my chest. So, my fiancé took me to Urgent Care.

The guy I saw was really caring and he was actually concerned with my symptoms. He said the rash I had was the butterfly rash and based off my family's history (auto immune diseases), my history and my current symptoms he thought it was more auto immune related, like lupus, and not the flu.

He ran a CBC and CHEM work up and my WBC, RDW% and platelets were low. He sent off for more tests like: lupus anticoagulant, t-reflex panel, RA factor, Sed rate and TSH. Oh, and he told me to see my primary care doctor right away.

So, here I am. Is it okay that I wait here?
So with your WBC count and platelet count low and presence of anti dsDNA antibodies, plus fever, rash and joint pains/aching, I think you have an autoimmune disease and your PCP should refer you to a rheumatology Dr. Lupus can present with aseptic meningitis which looks just like viral meningitis. Did they do a spinal tap to check that out? Your platelet and WBC counts are not low enough for spontaneous hemorrhage or serious infection, so I would not be worried about that, but you have many signs and symptoms of possible lupus and should have all of this evaluated asap, especially if headache persists, as it requires spinal tap and high dose steroid treatment if aseptic meningitis is present. This usually causes severe headache and stiff neck. I would insist on getting evaluation right away.

 
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Old 06-14-2016, 07:03 PM   #9
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Re: New here. Waiting on lab results.

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Originally Posted by ladybud View Post
So with your WBC count and platelet count low and presence of anti dsDNA antibodies, plus fever, rash and joint pains/aching, I think you have an autoimmune disease and your PCP should refer you to a rheumatology Dr. Lupus can present with aseptic meningitis which looks just like viral meningitis. Did they do a spinal tap to check that out? Your platelet and WBC counts are not low enough for spontaneous hemorrhage or serious infection, so I would not be worried about that, but you have many signs and symptoms of possible lupus and should have all of this evaluated asap, especially if headache persists, as it requires spinal tap and high dose steroid treatment if aseptic meningitis is present. This usually causes severe headache and stiff neck. I would insist on getting evaluation right away.


Thank you for the reply! I do have a severe headache and very stiff neck. I never heard of aspectic meningitis. The doctor at the ER talked about during a lumbar puncture but advised against it. He said he didn't think it was necessary. Which I thought was strange because with meningitis a lumbar puncture is usually the next step.

I got all the blood work from the urgent care and the ER Doctor to take to my primary on Thursday. I'll ask about a rheumatologist. The rash on my face tends to get worse in the sun and I also end up getting a rash on my arms and chest. I'll have to take a photo for the doctor in case.

 
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Old 06-14-2016, 07:42 PM   #10
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Re: New here. Waiting on lab results.

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Originally Posted by somebody84 View Post
Thank you for the reply! I do have a severe headache and very stiff neck. I never heard of aspectic meningitis. The doctor at the ER talked about during a lumbar puncture but advised against it. He said he didn't think it was necessary. Which I thought was strange because with meningitis a lumbar puncture is usually the next step.

I got all the blood work from the urgent care and the ER Doctor to take to my primary on Thursday. I'll ask about a rheumatologist. The rash on my face tends to get worse in the sun and I also end up getting a rash on my arms and chest. I'll have to take a photo for the doctor in case.
Honestly I would go back to the ER and ask to have a lumbar puncture and mention aseptic meningitis from possible lupus as a possibility. Take all your lab results with you. I don't think the ER Dr. would dare refuse to do it or admit you under the circumstances of a second visit with same complaints in view of your symptoms. Meningitis can cause seizures, and that is an emergency in itself. Your PCP cannot do a lumbar puncture, and that will delay things even more. I think you need to go back to ER. LP isn't bad as long as being done by experienced competent Dr. I personally would not go home without it or being admitted to be done in AM by neurologist or interventional radiologists experienced in procedure.

 
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Old 06-14-2016, 07:59 PM   #11
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Re: New here. Waiting on lab results.

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Originally Posted by ladybud View Post
Honestly I would go back to the ER and ask to have a lumbar puncture and mention aseptic meningitis from possible lupus as a possibility. Take all your lab results with you. I don't think the ER Dr. would dare refuse to do it or admit you under the circumstances of a second visit with same complaints in view of your symptoms. Meningitis can cause seizures, and that is an emergency in itself. Your PCP cannot do a lumbar puncture, and that will delay things even more. I think you need to go back to ER. LP isn't bad as long as being done by experienced competent Dr. I personally would not go home without it or being admitted to be done in AM by neurologist or interventional radiologists experienced in procedure.
PS if you have a university teaching hospital nearby, I would go to ER there, as they will be more aggressive at checking you out with something more unusual than run of mill illness

 
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Old 06-15-2016, 03:53 AM   #12
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Re: New here. Waiting on lab results.

Good morning. Petechaie can occur from infectious diseases (cytomegaloviruses, mono, meningococcemia, Rocky Mountain spotted fever, strep, scarlet fever, etc.)... as well as from vasculitis and thrombocytopenia (low platelets). But I imagine there are other possible causes, too.

Although I think lupus presenting as meningitis is extremely rare, I'd sure want meningitis investigated thoroughly. Did ER doctor say why he thought lumbar puncture wasn't necessary? Also, did he ask about drugs taken recently, including NSAID's? (List all, and take list wherever you head today.)

For platelets, normal range is 150,000 to 450,000, but zero's aren't used, so a result of 110 fits the definition of thrombocytopenia (I *think*).

Whomever you see today, you could ask point-blank if you also need an infectious disease specialist, if the subject isn't raised. I too hope you get to see new doctors today. GOOD LUCK!

 
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Old 06-15-2016, 06:55 AM   #13
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Re: New here. Waiting on lab results.

Just thought of another complexity: anti-ds-DNA isn't exclusive to lupus. It can also elevate in chronic hepatitis, Primary Biliary Cirrhosis, and infectious mono (and there might be more). So there are many strands here, it seems, that only doctor(s) can figure out. I think you're smart to keep pressing for help, and I hope you get more soon, like today! More hugs.

Last edited by VeeJ; 06-15-2016 at 06:58 AM. Reason: added phrase

 
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Old 06-15-2016, 08:15 AM   #14
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Re: New here. Waiting on lab results.

Thanks everyone..

I know I don't have chronic hepatitis but those were good possible suggestions. Or are you referring to autoimmune hepatitis? My doctors have suspected lupus for years but my results always came back indeterminate. I think this is the first time my dsDNA index came back positive. Unless the dsDNA index is directly related to the dsDNA result? I have no idea. I've just never gotten any actual answers. I never thought about an infectious disease doctor. Good idea. I've seen a rheumatologist before but they kept feeding me medicine and I only saw them 5 minutes every visit. I eventually left. I haven't searched for a new one, yet.

My last blood work showed my platelets as 101. So, they had diagnosed me with thrombocytopenia. Along with low wbc.

When I showed the ER Doctor my rash he hadn't even looked at my blood results yet. He assumed it was from viral meningitis. He said he didn't want to do the lumbar puncture because he didn't think it was bacterial and I would be put at risk for possible infection and so he advised against it.

I think I'm having a reaction to that medication they put me on. Which is weird, because I've had that medicine before. It's butalbital/acetaminophen/caffeine. It's not working on my headache, it's making my skin super itchy when I take it and then my stomach looks rashy.

During my visit there I told several people that I've been alternating between Tylenol and Ibuprofen due to the fever and pain. (I'm still running a fever). I also told them I was taking no other medications because my fiancé and I were in the process of trying for a baby. Well, besides a prenatal. So anything I was taking I was no longer taking. I even brought my blood results from Urgent care and made them aware. This is going to sound bad but I even cried when I left because I did not feel I received adequate treatment. The doctor didn't even run any bacterial tests even through the nurse drew blood for it. The only time I saw him was when he advised against the lumbar puncture. He kept saying I was there for a headache and I kept having to explain to him there were fevers and rashes involved. When the nurse first saw me she asked if I was there for belly pain. It was a disaster. In the end they gave me a migraine medicine to take home for this viral meningitis.


I do have raynauds if that helps. I get the facial rash from time to time. The urgent care doctor noticed it. Recently I've been getting rashes on my face, chest and arms when I go outside. I've also had my gall bladder removed. I have numerous stomach issues. Joint pains. Unexplained rashes and fatigue. The whole process has been draining which is why I stopped searching for answers.

This past year alone I've been diagnosed with inappropriate sinus tachicarydia, strep throat (treated and done with) and now this. Then last year I had a case of pleurisy.

I just don't know what to do.

So. I will follow up with the doctor on Thursday and go over everything with her. I've never seen her before so maybe fresh eyes will help.

I apologize for the story. Thank you.

Last edited by somebody84; 06-15-2016 at 10:08 AM.

 
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Old 06-15-2016, 01:14 PM   #15
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Re: New here. Waiting on lab results.

somebody, your story hurts to read, but please don't apologize for it, ever! It's complex, so here's a suggestion for writing it down bare-bones. Jot down your symptoms, findings, and meds---in date order---using sentence fragments (to keep it short, because brevity helps doctors zoom in)---do so & take it along with you. That way, YOU won't forget anything, plus you could hand that list to your next doctor(s).

It could turn out that you have multiple conditions, related or unrelated, like an autoimmune, or multiple autoimmunes, or autoimmune plus viral, or who knows...? I'd just list everything, just as it happened.

So much of what you describe sounds lupus-like, except that you didn't mention that ANA (the threshold test) was ever positive, which it mostly (but not always) is.* Also, there are degrees of elevation for anti-ds-DNA---low-positive, positive, and strongly positive---so how high yours is would likely be meaningful to a doctor. And I believe it's possible to have thrombocytopenia in conditions other than lupus. Also, the fact that your liver values are elevated could mean meds, hepatitis (including autoimmune), fatty liver, etc., i.e., various reasons are possible.

*Those with ANA-negative lupus, according to a lupus hardcover I keep, fall into four distinct groups: those with antiphospholipid antibodies, those with biopsy-documented kidney lupus, those for whom prolonged meds had suppressed the ANA findings, and those positive for anti-Ro but with ANA staying negative. You may be wondering, has anyone here fit into one of these categories? I did, as one example. I was anti-Ro positive but ANA-negative, with dx confirmed by a seldom-done sophisticated skin test called the Lupus Band Test (LBT). Yes, rare dx'es happen. SOMEONE has them, else experts wouldn't know they're even possible.

So above is why I was wondering if there are multiple possibilities here, both lupus, lupus plus something, and not-lupus.

What med(s) did your former rheumatologist have you on? What was his dx or dx'es? (Only curious.) Maybe it was AFTER you stopped seeing him that your WBC, platelets, etc. shifted greatly?) Meaning if he never saw the "current you", maybe he never learned enough to firm up an appropriate dx. Urgent Care & ER just saw the "current you", yet I think neither is a good bet for a complex specialty diagnosis. That's not meant to insult them, it's just not what they do best.

Did you check the possible side effects for the migraine med? Skin itchiness & body rash listed?

What time is your appointment tomorrow? We'll be counting the hours with you!

 
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