1. 1 Cases from the Consumer Information Website ASCLS Annual Meeting, Orlando, July 27, 2005 Cheryl CaskeyOmega Diagnostics, L.L.C. Susan LeclairUniversity of Massachusetts at Dartmouth Mary Ann McLaneUniversity of Delaware Mary Beth MieleUniversity of Delaware Bernadette RodakIndiana University, Indianapolis

2. 2 What the CI is and how it works n 1999: 7 intrepid ASCLS member volunteers n This is the first interactive, non-subscription- based, international service for consumers –http://www.ascls.org –http://www.LabTestsOnLine.org n Never publicized, but was “findable” by most browsers n 2005: 29 intrepid ASCLS member volunteers n 24/7/365

3. 3 What the CI is and how it works n 1999: fewer than 1 question per day n 2005: average of 15 questions per day We always need and welcome new volunteers.

4. 4 Workload by discipline Chemistry 60 – 65% Microbiology 0 – 5% Immunology 20 - 30% Hematology 15 - 20% Assignment to a team Handle all of your discipline questions in that 24 hour period Team decides how to handle “overlapping” questions

5. 5 The efforts have been noticed n Awards: –ASAE Summit Award, given to programs that significantly “enhance American society” –eHealthCare Leadership Program Gold Award for Best Health/Healthcare Content

6. 6 Hematology most common questions n WBC – low (most common) and high n HCT – low and high n Diffs – relative vs absolute values n Indices n MPV and RDW n ESR – the most diagnostic test of all

7. 7 Examples n My hematocrit was 16 and I had to have an infusion, but I am still suffering with headaches. Is it normal to have headaches with a low hematocrit? n My WBC is 3.2 and the range is 4.0 – 10.0. n The doctor told me my lab tests were fine, but on my copy there is an “H” next to the MPV of 10.7.

8. 8 Just a little information, please n I was wondering if you could answer a question about leukemia for me. I need to know what types of blood tests are done on what types of cells and possibly a few details on each of them to diagnose leukemia.

9. 9 Healthcare provider examples n What is the quickest and most efficient way for a patient to increase their hematocrit level? n I just had a routine physical exam. I’m an RN and would like to know what a platelet count of 700,000 and a WBC of 21,000 indicates. Why am I being sent to a hematologist?

10. 10 Worried mother n My son is a 5 years and 3 month old Chinese boy. His segs is too low and his lymphs is too high. He did not have any symptoms when I brought him for the blood test. I am really concerned. Do you think he may be infected with HIV. Do you think he may have leukemia?

11. 11 Patients’ right to know n I just finished treatment for dysgerminoma and had my follow up blood work. I am concerned about my eosinophil percentage of 34.0 when the range is 0-4. I called my oncologist’s office and the nurse told me that the only thing they look at is WBC, ANC and MONO and that patients should not receive copies of their blood work because they don’t know the significance of anything and they would tell ME when I should be concerned.

12. 12 Frustrated daughter n All I am trying to find out is what the effect on the body of someone having a very low (1,000) platelet count is. My mother has been receiving platelet infusions. –Several messages later - diagnosis of RAEB – trying to make decision to continue treatment – I referred her to social services at her local university, mentioned hospice and sent her information on MDS.

13. 13 Long term “friends” n Initial contacts can grow into a trusting relationship. We may become a source of support, comfort, inspiration, as well as technical information. n Case of 2 CLLers n ET  AMM

14. 14 Good teaching material n RBC3.69 x 10 9 /L (4.1-5.1) n HCT24.1% (35-47) n HGB7.3 g/dL (10.9-15) n MCV66.2 fL (80-100) n MCHC30.3 g/dL (33-36) n Fe2.7mmol/L (6.6-26) n Ferritin 3 µg/L (30-180) n I have been very tired and all I want to do is to eat ice. What do you think my problem is? What is your assessment?

15. 15 A chance to educate patients n My hemoglobin is 14.2 and my ferritin is 13.2 (20-120). How can my ferritin be low when my hemoglobin is good. Don’t they both involve iron in your blood? n My father just had blood work done and his HGB was >20.0. He has lung problems and is a heavy smoker. Can smoking and lung disease affect his hemoglobin?

16. 16 Hemostasis and Thrombosis “Coag” Most common questions n PT and INR – by far the most common n APTT n Lupus anticoagulants n Anti-phospholipid antibodies n Protein C and Protein S

17. 17 Coag Examples n I take Coumadin and I used to get my PT results in seconds. Now I get an answer called an INR. Is that a new test? Nobody can explain to me what it means – just that it is the way the report is now given. n What are the symptoms of an INR of 8.0?

18. 18 Scary, but with a happy ending… n I had been on coumadin for a month without any monitoring. I wanted to get off, so the doctor ordered an INR. It came back 11.1 and he called me at work to come right to his office for a shot of vitamin K. n The doctor apologized. Three days after the vitamin K shot, my INR is 1.6. No one told me that I could not take fish oil or that there were any diet restrictions while taking coumadin. Thanks for all your information.

19. 19 This is a foreign language to me n I was found to have an elevated APTT in pre- op screening. I have never had any bleeding problems. I was told that I have a lupus anticoagulant as evidenced by the positive hex phase study, elevated ACAs and inhibitory pattern in multiple factor levels. I was told that because of the lupus anticoagulant that I might be at increased risk of post-op thrombotic episodes. What does all this mean in plain English?

20. 20 Some questions are fairly easy- and some more complicated n FAIRLY EASY n What is thrombosis? n Why would my physician suggest that I take a baby aspirin every day?? n NOT SO EASY n My daughter has been diagnosed with Klippel Trenaunay Syndrome. Her doctor wants to start her on Coumadin. How does that relate to KTS? n My baby has been diagnosed with Kawasaki Syndrome. Is it usual for the platelet count to approach 1 million?

21. 21 And some require a hemostasis/thrombosis GURU n I am homozygous for Factor V Leiden and heterozygous for MTHFR C677T. My two sons’ testing came back with 2 copies of the A1298C mutation and their factor V activity levels were approximately 126-140%. Does that make me C677T/A1298C? What is the thrombotic risk for my sons? And George Fritsma came through

22. 22 Chemistry scope of questions n A recent test indicated my ALT was fine but my AST was 15 (the range being 16-40). What does a lower number mean? Is this dangerous? What is standard crininine level for a 67 yr. old male? n What is the BCP cholesterol test? n Hi, Can amas test for cancer ? can you do it? thanks

23. 23 A pharmacopeia…and the thick PDR n I am on 1 mg of Primogyna daily…iron tablets, garlic, gelatin capsules, brewers' yeast…Ginko Biloba and Noni…Cozaar…Allegra, Nasonex, and Atrovent. n If taking a c-peptide test how would the drugs Amaryl (glimepiride) & Avandia (Rosiglitazone Maleate) I am taking for diabetes affect the test? n I am taking eltroxin since 1998…. St.Johns Wort…Depakote, mebaral… lipitor

24. 24 What could that possibly be??? n The test is a HRP test. It's either related to my heart disease or my diabetes. n What is a gamma test? I have results but I don’t know what it is for. Is there a charge for this service, if so please disregard my message, thank you. n My 77-year-old father has been asked to have a "12/60 creatinine" test. O presente texto está na lingua portuguesa (Brasil) e os exames são de minha filha Raquel que apresenta icterícia, cefalopatia, colecistopatia acalculosa e tem 21 anos de idade e gozava de perfeita saúde. Não consome alcool ou outra droga qualquer, exceto um remedio recomendado pela dermatologista de nome Flutamida. Eu ficaria muito grato com suas explicações para os resultados dos exames que transcrevi abaixo: Bilirrubina direta 7,10 mg/dl; Bilirrubina indireta 4,90 mg/dl; Bilirrubina total 12,99 mg/dl Material: sangu; Método: Jendrassik mod. http://www.altavista.com

25. 25 Do they really mean that? n What is the significance of elevated nitrates in the urine? n I had a test to determine my blood glucose level since I have type 2 adult onset diabetes… hemoglobin A1c 5.6… I was expecting a reading similar to the blood test results that I get daily on my glucometer. How can I interpret the lab results? Thank you. n I am interesting to know the test for cinetic creatinine concernig to eliminate the cromogenous

26. 26 …you’re thinking of doing what? We are exploring this test in our ED. I am interested in getting information on the technique used to perform the test (I know the sample is placed in a cartridge which is placed in a portable meter— what I don’t know is whether the reading is by mass spectrometry, electrophoresis, or some other technique). Do you have any information? Thanks in advance for any assistance you can provide.

27. 27 Questions about Microbiology n Center around infectious diseases –Risk of transmission n Include specimen collection n Interpretation –Culture results –Antibody levels n Treatment 40% 15% 14% 17% 6% 8%

28. 28 Interpreting laboratory jargon n Subject: Urine culture What does mixed urogenital flora, less than 10,000 colonies/mL effect the test results? Google searching comes in handy Question: For information about Bilharziazis, please visit – http://www.cdc.gov/ncidod/dpd/parasites/schistosomiasis/ factsht_schistosomiasis.htm

29. 29 Uh Oh! n During an annual exam my docter advised me that I may be infected with chlamydia. I have been completely faithful to my boyfriend of three years, and have never had an issue with previous exams. Could I still have gotton this if my boyfriend has been faithful to me? I have heard that in some cases an STD can go undetected for some time is this true? n I know that Trich is a STD but what causes it exactly? Also who gets it first a man or a woman?

30. 30 Questions from physicians n Question: Patient was screened for HepB as part of pregnancy blood testing. No known risk factors. n Wife Results Oct/04 n HepB-HBsAg positive n HepB-HBeAg non reactive n HepB-Anti-HBe Reactive n Given results below were the husband and wife ever exposed to HepB, are they currently infectious (acute/carrier), is further testing required? n Wife Retest Results Nov/04 n HepA-AB(IgG+IgM) Negative n HepB core IgM AB Negative n HepBs Antibody <10 Nonimmune n Wife Second Retest Nov/04 n HepBs Antibody <10 Nonimmune n Husbands results Nov/04 n Surface Antibody (Anti-HBs) <2.0 n Liver Markers Normal n Antibody (Anti-HAV) Not detected What do you think?

31. 31 Serology Testing for HBV HBsAgAnti-HBsAnti-HBc Total Anti-HBc IgM Susceptible Neg (neg) Acute infection POSNegPOS Chronic infection POSNegPOSNeg Immune - Past inf. NegPOS Neg Immune - Vaccinated NegPOSNeg

32. 32 HIV serology n Hi - I would just like to know what the numbers mean on my negative HIV test results. My print out is as follows for 4 tests since May 2004. n May 2004 AxSym HIV 0.30 HIVNG n Jul 2004 AxSym HIV 0.29 HIVNG n Oct 2004 AxSym HIV 0.40 HIVNG n April 2005 AxSym HIV 0.30 HIVNG n Test - AxSYM HIV 1/2 Ag/Ab MEIA n What are these numbers (ie. 0.30 etc) and why do they change? n If I am HIV Neg why is there a reading at all? n This is very confusing and I asked the nurse at the clinic where I got the results who said “the number is just something to do with the type of test” but to me it seems to be some kind of measurement???

33. 33 Obsessed by HIV n hi ascls,this is me again…there is something i still cant get convinced enough about the blood circulation of the eyes..well, does the blood from the eyes flow thru down the body..? but i just wonder does blood in the capillaries of the eyes flow back to the body..? this question is crucial to me as im afraid hiv virus might get into the eyes as for my past encounter of the semen gettin to my eyes.. n (And then, 7 e-mails later)…i recently had a couple of dust particle from my shoe went into my coke drink…..will i get any hiv disease drinking that lot of dust in the drink or pose any danger to my health?

34. 34 Why me? n I have bugs-yes bugs- in my urine. I noticed in the toilet little things floating & upon closer inspection with magnifying glass there were lots...of them swimming. I went to my doctor who did a urine test, said n I had infection & gave me 30 cephalexin caps. I've taken all of them which has been 10 days but I still see some bugs & lots & lots of eggs in all different stages of development. n I think the bugs I pass now are not alive but why are there still so many eggs & when will they be gone?

35. 35 Typical Immunology Question Mix n ANA 35% n RF/RA 16% n Celiac Disease 4% n Complement 2% n Miscellaneous 43% –Mono –Rast, IgE –Cardiolipin Antibodies –Immunoglobulins –Other antibodies

36. 36 Immunology n Typical questions include –ANA: My ANA came back positive. the Titer was 1:320 and speckled what does this mean? –RF or RA: I had been tested for RA 6 years ago. I have my medical records and I don't know how to ead it. What test would hev been ordered and how is it abbreviated? Also what would the test results look like? Lab test ordered under what heading would I find the info? thanks very much

37. 37 Other Questions n am a 49 y/o female, my lab results are the following: complement component C3.......mg/dl........130.03 complement component C4.......mg/dl..........10.71 are these within the normal range n Is this (antiphospholipids) the same as anticardiolipin antibodies?

38. 38 Some Questions Are Different... n Can you tell me how many serological celiac tests are done annually in the US? Thank you.

39. 39 And My Personal Favorite Question Can you get pregnant from oral sex?

40. 40 Ongoing Dialogue n Happy Holidays! I have to ask another question. Does +ANA, speck patt and +Anti-nRNP happen in about 5% of the population when nothing is wrong with them? As always I look forward to hearing from you. Respectfully Yours

41. 41 Help Needed at Times n Follow up questions after the initial answers are sent. Original question sometimes requires help: n How old does a baby have to be to have a RAST test?

42. 42 Some Questions Require Team Discussion n My sister has been suffering from severe attacks for the last couple of years and does not seem to be getting anywhere with her doctors. Her normal symptoms are hives (a bad attack looks like severe burns as the hives all merge together), shivering, occasional loss of sight, weakness, low blood pressure, fainting, weeing herself and crying (fear). She finds an antihistamine calms the attack down but very rarely has enough warning an attack is looming until it hits her. She has recently performed a home test on her blood which shows a high level of Ige anti- bodies and really wants to push on to get some help from her doctors……

43. 43 (cont.)…. Our mother attracted anti-bodies after she gave birth to my sister 30 years ago and at that time there were only 3 people out of a population of 35,000 with these anti- bodies diagnosed. Any advice you can give us to help my sister would be appreciated as I worry about her driving in case she takes an attack on a busy road and harms herself. The only factors we can identify as common are the change in body temperature (i.e. gym then walking into cold air), cheese, vodka, white wine and bread and she has tried eliminating and also combining but cannot make an obvious connection to her attacks. I look forward to your reply in the hope you can shed some light on what she could be going through. Some Questions Require Team Discussion

44. 44 Answers…. n Often similar for common questions n Resources used –Texts –PDR –Reference laboratory web sites –Internet –Colleagues

45. 45 And there are times we’d rather not know… n I am a 17 year old male and i have a 2 inch penis. I am emailing you to find out will my penis grow any more. If no, is there some type of medication (that works) and is to increase my penis. It is kind of embarrising not to have a girlfriend or take a shower at school.

46. 46 Truly legal implications n How does one test for the presence of semen in a sample of womans underware? I have several samples I have collected, but don’t know what to do with them. Please help. Thank you.

47. 47 Unique outside research needed to answer some… n do you think that if doc ock used amylase and starch hydrolysis he could defeat spider man? (listed as a “health care provider”!) …then there’s always back to square one… n what does protective mean on the green level

48. 48 And what do our healthcare colleagues ask?  I am a pharmacist and would like to know what electrolytes testing tells a doctor. Also, is there a web site that would tell tell me what lab testing reveals to a doctor? What is so important about a relation between Sodium and Potassium?

49. 49 And what do our healthcare colleagues ask?  I am a physician. What are the effects/consequences of pancreas removal? n As a nurse, I am curious if you can tell the difference between inherited and acquired osmotic fragility?

50. 50 Time to challenge the clinician! n I am 28 years old from the philippines. I had this bad headache at the back of my head. It‘’s agonizing. for almost a month its attacking once in a while but lately more thank a week now the headache is getting worst. So, i had an ESR test and it say there the normal range is 0-20 but my result is 40. But the doctor ask my age and I said 28 and he added 14 into it that makes it normal he said. so, am not really sure if what he said is correct. so, pls. let me know so they're be light into this matter.

51. 51 Words of Thanks n Thank you very much... you are a big help, you heaved me from depression... n WELL YOU WERE RIGHT (CA19-9)

52. 52 Words of Thanks n THANK YOU THANK YOU THANK YOU!!!! I’m so glad that I could FINALLY get an answer (couldn’t even get one from the Doc!) n dear sirs, i have gratefully received your prompt response, and would like to thank you for your concern and for taking the trouble to examine my test and send me a reply. (saudi arabia)

53. 53 Words of Thanks n thank you for avverything, I appreciate. P.S. Send an email should you ever visit Greece :) n Thank you for your prompt reply. That was awesome. n I just wanted to thank you for your prompt response, and I want to congratulate all of you for this wonderful site. n You are providing an invaluable service! Thanks again.

54. 54 Words of Thanks mother’s HDL n Thank you very much for your prompt reply… The service your profession provides is truly remarkable: the fact that you work 'behind the scenes' is immaterial to a person who has received correct treatment due to the initial accurate work done by professionals like yourself. God bless you all.

55. 55 Words of Thanks n I am humbled and impressed by the fact that you actually answered my dog questions. n I graduated from Harvard Public Health School. I have worked in Shanghai for almost 3 years. I am confused most of the time when I go to hospital. Now I will re- evaluate what those doctors say before I take any medical action.

56. 56 Words of Thanks n Wow, thank you so much! What a great service you provide, isn't the Internet just great? Well, sometimes :) In this case for sure, GREAT! Thanks for sharing your knowledge. n Bernadette, you guys are awesome. I found this site about two years ago and have used it about four times. For those of us that seek knowledge, since knowledge is power, I love this site

57. 57 Words of Thanks n Am I impressed or what! Here I was, alarmed at home, and there you are ---right on time with reassurance that nothing that is happening inside my body should keep me pacing the floor at night. What a service! I send you my gratitude. I must tell everyone I know about this service. I have already e- mailed my own physician. Here in Toronto one now waits twelve hours to be seen, and can count on another six or seven hours before anything is said. Whoever is funding you may I just say: Money well spent. Keep up the good work. Canadian blessings

58. 58 Words of Thanks n Thank you so much for your information. You are the first person to speak to me about this in an intelligent, non-layman way. I find that though I do my own research and bring my ideas to the doctor's office for discussion, I never get a straightforward and intellectually elevated answer. Thanks for clearing up some of my questions and for digging into this issue for me.

59. 59 Getting interested? n What is it worth to you? –You get 1 CEU towards your NCA requirement every year. –You join a unique group of people who are Creating a new awareness of clinical laboratory science across the world Actually, really, honestly saving lives Some of the best friends you will ever have

60. 60 Want to get involved? n Talk to me. –I will send you a copy of an orientation manual and hook you up with a current member. (I happen to have a few with me right now.) –They will guide you through the manual and get you up and running. –Thanks for coming! We look forward to talking with you!