TITLE:  Chat with Dr. Eric Hoy—“Lab Tests and the Vasculitis Patient”
DATE:  January 18,  2014
Ed:     PAN Support Network Moderator
Dr. Eric Hoy:
Lamar:  Clever, Missouri
Karen:   Australia
Maltshop Hop:   Australia


Ed Becker_ PSN Moderator: Welcome to the PAN Support Network Web Chat.  Tonight, we'll be talking with Dr. Eric Hoy.
Here is a short video featuring Dr. Eric and focusing on our topic tonight---

Ed Becker_ PSN Moderator: Please ask away. If not I'll just ask some that people have forwarded to me..
Dr. Eric...when a vasculitis patient gets lab results that come back "abnormal" what would you say are the key things that person should realize, understand or take into consideration to keep perspective?

Dr. Eric Hoy: It depends what is "abnormal" and how abnormal the results are. The result should be compared to the reference (normal) value. If the value is barely outside the normal range, we need to watch the result, but not panic about it.

Ed Becker_ PSN Moderator: You mentioned in your video that people should not only focus on the abnormal, but the normal reading too that can tell you a lot, correct?

Dr. Eric Hoy: Yes, the normal is important, and the history of lab results is important, too.  For example, if we are looking at kidney function tests, there are 2 tests that are a good screening indicator. They are the BUN and the Creatinine.

Ed Becker_ PSN Moderator: Both are very important, right.  Obviously they are. What is the significance of the BUN reading to the Creatinine reading? I mean, if one is much higher than the other is that a red flag?

Dr. Eric Hoy: If both have been normal for a long time, and on one occasion the BUN is slightly high, but the creatinine is still normal, that would be a reason to watch, but not to panic. 

Karen: What if creatinine is suddenly much higher?

Ed Becker_ PSN Moderator: Yeah, sorry. If the Creatine is much higher than BUN. What might that indicate?  Also, let’s say a patient gets back a 'concerning' report that has some higher than normal readings.  What is a good step to do next?   Ask for another test? Is that standard? I guess it's about taking in all of the test results to get the clear picture. Conclusions can’t be made on just one reading. So a  question—What does a high Creatine reading mean if it’s  much higher than BUN.

Dr. Eric Hoy: OK, a quick indicator of the relationship between BUN and Creat
 In our hospital lab, the normal BUN level is 6-20, and the normal Creatinine is 0.6-1.2. I like to look at the ratio of BUN to Creatinine. It is usually between 10:1 and 20:1,

Ed Becker_ PSN Moderator: Eric. When you say in your hospital. Does that mean that ratio may be diff in another hospital?

Dr. Eric Hoy: There may be slightly different "normal" ranges in different labs, based on the method they are using, the patient population, and the units that they report. Outside the USA, the units are usually different.
So if someone has a BUN of 10, and a Creatinine of 1.0, they are in the normal ratio.   If the BUN goes up to 20, but the Creatinine is still 1.0, they are still within the ratio. If the BUN is 21, it is slightly high, but with a Creatinine of 0.9, the ratio would be 19:1, and still within the "normal". I would want to watch the patient carefully, but it is not reason to panic.
Ed Becker_ PSN Moderator: Okay. So really the bottom line to the patient when they get their labs back is to really have a discussion with their doctor about it. Go over and don’t just focus on one test, but look at the whole spectrum. Here's a question from Tom a few min ago. He asked if you could walk through the whole lab process from when the blood is drawn to when it comes back as a report. I guess a quick tour for the layman.
Let’s begin…at the beginning.
So that blood gets drawn, or the biopsy is taken?
Where does that vial or tissue go and what "journey" does it taken.

Dr. Eric Hoy: Good question from Tom. The blood is drawn into vacuum tubes (usually). These tubes may have an anticoagulant in them to prevent clotting of the blood, or they may be plain plastic tube in which the blood will clot.

Ed Becker_ PSN Moderator: Why the difference in clotting tube vs not clotting?

Dr. Eric Hoy: Whether we use clotted blood or unclotted depends on the test and the method used for that test.

For most autoimmune tests, we let the blood clot and then separate the liquid part, the serum. This is why the tests are sometimes called "serologies". The vial goes to the lab, and may be separated into smaller portions to go to various parts of the lab and different instruments. Some of the instruments are highly automated, and will run the appropriate tests with very little human intervention. Other tests require a lot more interpretation and care from a well-trained laboratory scientist.

The BUN and Creatinine are among the automated tests, and tests like ANA (Anti-Nuclear Antibody) and ANCA (Anti-Neutrophil Cytoplasmic Antibody) require more interpretation. The management of specimens is a huge task of the laboratory professionals. Not only lost, but mixed up samples can be a huge problem, and we are constantly coming up with better handling system. Most labs use barcodes on all samples.
The difference in the way tests are run helps explain why some results may be available the day after your blood is drawn, and others may take a couple of days.

Ed Becker_ PSN Moderator: I am honestly amazed how often it doesn't go wrong given the thousands of specimens.  Dr. Eric...I know this is a 101 question. But I always wondered how my vial of blood doesn't go missing or something. Or have I just been lucky?

Dr. Eric Hoy: I was in a lab this week where they receive over 4,000 specimens a day, and run over 15,000 individual tests per day. And they aren't the biggest lab I've encountered!

Ed Becker_ PSN Moderator: Now when you say a tests like ANA orANCA need interpretation...how is that physically done?   Is there a lab tech who studies it and evaluates the reading?   Physically working with that one sample?

Dr. Eric Hoy: Yes, the ANA and ANCA require an examination under a specialized microscope. The individual has to be trained in what to look for, and how to interpret what they are seeing.

 If the test they are using is inferior (some reagents are cheaper than others), or the person who is examining the sample isn't skilled, the answer can be wrong.
This is where the automated microscope that I helped develop comes in. It makes the process easier. It doesn't eliminate the human, but makes the job easier for that person.

Ed Becker_ PSN Moderator: Trying to picture this actual environment. This part of the process could be a huge room with hundreds of techs all processing and interpreting individual vials or samples.  Is that accurate?

Dr. Eric Hoy:  Usually not hundreds working on the same test.  One tech working on hundreds of specimens is more common.

Ed Becker_ PSN Moderator: So the tech evaluates and then prints off the results and then sends the report back to the doctor?

Dr. Eric Hoy: That's right. And then the doctor (non-rheumatologist) calls and asks what the results mean, so the lab tech has an opportunity to teach.

Ed Becker_ PSN Moderator: Great point...I mean is this a frequent thing. The doctor will call an expert in lab test analysis for clarification.  That's what you've done for so long, right? You help the doctor understand so he or she can communicate to patient.

Dr. Eric Hoy: Yes, most GP's don't see autoimmune diseases often enough to become familiar with all of the tests, and the possible interactions among the tests. In those cases I will often be asked for consult.  That's what has been buttering my bread for over 30 years.

Ed Becker_ PSN Moderator: So what happens to that vial of my blood after it has been tested. I know I don't get it back! 

Dr. Eric Hoy: You don't want it back. We use up most of it, and the rest gets treated to make it non-infectious (in case you have some dread disease), then it goes to a special waste treatment facility.

Ed Becker_ PSN Moderator: That's interesting. So some of the blood is recycled...safely I mean? )Or, do you mean for research use?

Dr. Eric Hoy: If we find something really interesting, we may keep a little bit of the sample for teaching new techs what to look for (that's what I was doing last week in the UK), but most of the leftover part goes to sewage treatment, or a very high temperature incinerator.

Ed Becker_ PSN Moderator: And Eric. This is obviously true whether it's blood or tissue from a biopsy?
Either get disposed or used same way?

Dr. Eric Hoy: Ed, yes, tissue, blood, urine, saliva, whatever we have used for the tests gets disposed in the same ways.

Lamar: My inflammatory markers all returned to normal before being treated but was still started on Prednisone. Why would that be?  Thoughts?

Ed Becker_ PSN Moderator: Dr. Eric stepped away, but when he comes back let's ask him

Dr. Eric Hoy: Lamar, which is a question for your doctor(s). They may be looking at inflammation from a biopsy, even though the marks are back to normal.

Karen: which labs in particular (if any) indicate flare?

Dr. Eric Hoy: Karen, often there is no change in the labs, even though symptoms change.

Karen: What does elevated creatinine indicate

Dr. Eric Hoy: Elevated creatinine indicates reduced kidney function, but it depends on how elevated the creatinine is, how long it's been elevated, and other factors.

Joyce:  The VF's mission is to help educate our patients and family members about vasculitis and help you find physicians and resources to help you manage the disease. We believe education is key.
The VF offers a detailed website, newsletter, VF consultants, symposiums, chapters, etc. I am thrilled we have two people from Australia as well as Hawaii and Missouri and Atlanta.

Ed_PSN Moderator:
Folks, rather than go into a lot of detail here tonight in this venue, I’ll steer you to the VF website where you can really dig into the details.
The VF is a huge resource and it would take too long to cover everything here.
Here is a link to the website.  I encourage you to visit and just look around.
Joyce, the VF is also heavily involved in promoting vasculitis research, correct?

Joyce: Absolutely.  We fund research on vasculitis. We just selected 3 studies for funding starting this month.

Ed_PSN Moderator: Talk about what happened this past year in terms of significant events, goals, and accomplishments.​

Joyce: Well...we funded our V-RIDI impact study - which is a two year study to during the impact of vasculitis on our patients and families. No one has this data and we need it to be able to advocate more effectively for more research funding.

We hosted a great patient symposium in Philadelphia this past summer.
I think one of the most important things we did this year is videotaping our patients and family members and creating a library of stories for our community to watch. Ed spearheaded the project: Extraordinary People Living Extraordinary Lives.
The videos are amazing - people sharing their personal stories. It really brings home the fact that we are NOT alone.

Ed_PSN Moderator: Some people may think the VF is just a website resource. But it's really a lot more than that, isn't it?

Joyce: The website is a great tool. It is a year-old and has had over 140,000 visitors. I think the VF "connects" people to the resources they need. I see that as our role.
Connecting patients to doctors; researchers to patients; patients/families to each other to provide support and education. We can all learn from each other.

Ed_PSN Moderator: Final question before opening up.   Joyce, let's say I'm a newly diagnosed patient.  What should I do in terms of getting help from the VF? Maybe I need a rheumatologist or maybe I need to find a clinic that specializes in it?  What should I do? Would I call or contact the VF?   What can the organization do for me at that point?

Joyce: the first critical step (and often the hardest) is finding experienced and knowledgeable doctors who KNOW vasculitis. They may be experts in something else but you really need doc/s who knows vasculitis. We can help you identify physicians near you (if you're lucky) but often patients have to travel to one of our vasculitis centers.
We also like to connect you with other patients who maybe be able to "mentor" you or just offer support. Social media has provided some tremendous support avenues.
You also have to educate yourself and your family about the disease. There is a learning curve for most people because most people have never heard of the disease before they are diagnosed. Then you have to learn to spell it and pronounce it.

Ed_PSN Moderator:    As I say...there's simply too much to share about the VF in this forum, so I encourage you to just visit the website and look at all the resources there.
Whether or not you have PAN, Cryo, CSS, it doesn't matter.. the VF really covers all of the vasculitic diseases..
Okay..with that we'll open to questions. Estella..you have the  first one, please go ahead

Estela: My question was for the lab indicators for someone to go on remission.

Ed_PSN Moderator: Do you mean interpret lab results which may indicate a remission?

Estela: Yes

Ed_PSN Moderator:
Well, as I say, neither  Joyce nor I can speak to the clinical side here.  I think  Estela could find some answers via the VF site. What do you think, Joyce?

Joyce:   I'm not a doctor but you should be having blood tests done regularly. Also, are your symptoms improving?  Yes, I would suggest you go to our website Estela to get more information.

Estela:  My symptoms are improving. No more pain, nodules.

Joyce: Physicians used to only look at blood tests but now they are looking at everything. Are your symptoms decreasing, i.e. joint pain going away, kidney function improving,
Also there is a couple of videos on the YouTube education channel about clinical monitoring and what lab tests mean. The physicians break it down.#

Ed_PSN Moderator: Estela. Actually I'll put you in touch with Dr. Eric Hoy. He is our medical advisor. He is a lab guru.  Write to me at eob50@consolidated.net and I'll connect you with Dr. Hoy.

Nick: General question.  Has the venue and date for this year’s VF symposium been set yet as would like to get there?

Joyce: We are not planning any big symposium this year due to the expense. Instead we are offering a series of online webinars beginning in late January. Also, we are asking our chapters to host educational meetings in their areas. These will be like mini-symposiums. If you have an idea for a webinar please email me jakullman@vasculitisfoun​dation.org with your idea.

Nick: Thanks Joyce. Sounds good so look forward to getting details

Ed_PSN Moderator: I think the webinars will be terrific...they will be accessible to so many people.  Go ahead Lamar#

Lamar: When will Dr. Hoy be a guest?

Ed_PSN Moderator: Well...we're working out the date, but it may be as soon as next Sunday. He's globe-trotting right now.
Joyce, mention a little bit about the consultants with VF and how they can be a valuable resource

Joyce: We are fortunate to live in the day of the internet. It allows us to connect with great physicians. There are vasculitis centers that do patient care and research.  There are other physicians that just see patients or do research. Both are critical roles. So, our goal is to connect the patients with them whenever possible.

Ed_PSN Moderator: We also are lining up some rheumatologists and researchers to be our guests so you can chat directly with them.

Joyce: Absolutely. Ed is the best general. I really believe we can conquer vasculitis because we are all working together.

Ed_PSN Moderator: So Joyce..the info on the website is of course free...
Nick: No more from me Ed....just thanks to you and Joyce for ALL the good work! We are never alone

Joyce: The VF encourages people to join the organization. Dues are US$35/year but can be waived if a financial hardship. We want to be connected with as many members of the vasculitis community as possible.

Ed_PSN Moderator: By the way...the VF really is an INTERNATIONAL organization. That's important to remember. We have chapters all over the world, right?#

Joyce:  This makes our awareness and advocacy efforts MUCH stronger. We really need people to be involved as much as possible. We understand that sometimes health, work, family get in the way but we love it when people participate in such activities as Vasculitis Awareness Month in May.
We do have members all over the world. I would love to talk especially to the Australians on board tonight. I spent a year backpacking through Australia so love the country. We just selected a research study from the Australian National University for funding. I am hoping this will be a way to springboard getting the group active again. I know people have had challenges keeping it going due to limited resources, etc.

Ed_PSN Moderator:   I think the takeaway message is that you should bookmark the VF site and make it our go-to resource. The PAN Network works very closely with the VF.
If you need information, a consultant, or some options to find care...the VF can help you there.

Lamar: I believe VF dues are a tax deduction also.

Joyce: We will absolutely try to help you. Yes. They are tax deduction for US citizens.

Ed_PSN Moderator: Well, Joyce, I know you have to be somewhere. Thank you for joining us tonight. I think the chat room worked really well for us. I look forward to many more chats down the road
I'll be sticking around folks..if you want to chat a bit longer. Ask questions. Just chew the fat for a little bit.

Maltshophop: Ed l like the look of the new chat room, easy to follow.

Joyce: This was a lot of fun. I love this chat room and I think will be a great tool for the other disease groups also. I can see us hosting a lot of individual chats on specific subjects. Thanks again for inviting me. Cheers.