firewatcher Posted November 10, 2010 Report Share Posted November 10, 2010 I got my latest labs in the mail today. My RBC, hemoglobin and hematocrit are HIGH:RBC: 5.32 M/uL (normal = 3.8-5.1)Hemoglobin: 15.6 g/dL (normal = 11.5-15.5)Hematocrit: 48.7 % (normal = 34-45)Dehydration was not an issue, this was not fasting and was after dDAVP and fluid. This is the highest mine have been and are heading into polycythemia range. Does anyone else have numbers like this? Did you find a cause? I see my GP tomorrow; I was going to ask for an epo level test. I am not liking what I see since I am wracking up stroke risk factors. Any thoughts? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 10, 2010 Report Share Posted November 10, 2010 I know some of us have talked about this issue before, and I wish someone would do a poll to see how many have EVER had this issue. I had a high hematocrit about 10-13 years ago, and doctor just said go donate blood. I was feeling fine, so just forgot about it--until we started talking this issue a few months ago. I just had around 14 tubes of blood drawn over the last two weeks and REALLY thought, oh no! BUT, I actually feel fine!! I just figured I would feel more lightheaded and draggy, but I actually walked in a Walgreen's store today. I never go in a store!So, grill your GP tomorrow about this. I find it relevant that some people were making references to feeling better when they to an NSAID because it might be somewhat of a blood thinner. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted November 10, 2010 Report Share Posted November 10, 2010 I'm with you. My hemoglobin has been in the 16 g/dl range. This was even pre-POTS. I have no idea what the cause is, but I like the theory of compensatory reaction due to poor tissue perfusion. My physician thought it was hemoconcentration. My hemoglobin has been lower the last 2 times it has been tested (14.9 g/dl), so maybe the volume expansion has had an effect. An EPO level would be interesting. I have thought about asking my endo for this lab. Quote Link to comment Share on other sites More sharing options...
sj75 Posted November 10, 2010 Report Share Posted November 10, 2010 its something that seems to run in my family. Mine was always on the very upper end of normal or just above. Since being a child i have suffered the most horrendous nose bleeds at times and interestingly felt much better after i have been freed of some of the 'red stuff' at the end of a nose bleed.Since having my son (12 years ago now) my rbc has been more normal and the nose bleeds are very few and far between. No idea why though.x Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 10, 2010 Report Share Posted November 10, 2010 mine is usually low end of normal. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted November 10, 2010 Author Report Share Posted November 10, 2010 Well, my doc was befuddled. He ordered the epo test and it should come back in a few days. If it is high, I get a sleep study to rule out Central Apnea, if it is low, I get a trip to the Hematologist. He thinks that this is all part of "that other thing" that is going on other than POTS. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 10, 2010 Report Share Posted November 10, 2010 Well, my doc was befuddled. He ordered the epo test and it should come back in a few days. If it is high, I get a sleep study to rule out Central Apnea, if it is low, I get a trip to the Hematologist. He thinks that this is all part of "that other thing" that is going on other than POTS. Hey Jennifer-Post about your epo test after you get the results. I'm very curious to see what direction this goes for you. So many here have the high red blood cell numbers- what you learn could help the rest of us OR it's that other thing your docs keep referring to. Beyond time to figure that out . I'm glad you've gotten the ball rolling.Hang in there-Julie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted November 24, 2010 Author Report Share Posted November 24, 2010 Just an update:I got my labs today and my serum erythropoietin levels were just shy of middle range. This excludes polycythemia and myloprofliferative disorders (leukemia){EPO level would be low} but it doesn't rule out hypoxia or apnea since it was drawn 6 hours after waking. So it is probably either reduced plasma volume, which should not happen on dDAVP, renal issues or hypoxia...all of which are likely. Serum EPO reference intervals are 4.0-27.0 mIU/mLanything lower than or near 4.0 with an elevated RBC or hematocrit would indicate polycythemia.A level above 13.5 suggests hypoxic conditions. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 24, 2010 Report Share Posted November 24, 2010 So, back to square one, huh! It is all so complicated. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted November 24, 2010 Author Report Share Posted November 24, 2010 Actually, I'm a little further than square one since I don't need to see a hematologist for polycythemia/leukemia. Now we just have to figure out which one or combination of the three it is! So it is actually pretty good news. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 17, 2011 Author Report Share Posted February 17, 2011 Well, I saw a hematologist after my GP told me to. It was slightly better than expected; he actually came into the room and talked to me. He even looked through my "big ol' binder of stuff." I was shuttled back and forth for several blood draws and then he tells me....."it must be normal for you." The only caveat was one pending blood test: JAK-2 mutation. He said that if that is off, I'll be seeing him every six months. I won't get the results for a week or so since it is a genetic test. He did say that I need to get my kidneys checked out though. and round, and round it goes..... Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 17, 2011 Report Share Posted February 17, 2011 (((((Jennifer)))))"Normal for you???" What are you: non-human? Seems like a cop-out to me. Your high RBC's need explaining. I'll be curious to see what the Jak 2 ends up showing. I find it funny he thinks you need your kidneys looked at- you think??? I think those RBC's need to be looked at more Sorry you didn't get any real answers...yet.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
sandymbme Posted February 21, 2011 Report Share Posted February 21, 2011 Not really much help, my RBC is frequently low. I have a tendency towards anemia, which was a total mystery to everyone treating me, until I found out a few days ago they strongly suspect Celiac Disease, which can cause anemia. (AHA!) But my numbers never get about low to mid normal...Sandy Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 1, 2011 Author Report Share Posted March 1, 2011 I came back negative for the JAK2 mutation! The hematologist says that it can only be a plasma volume issue without anemia. I am supposed to find a weight where my BP is "normal" and stay there if I can. He also told me to never allow a doc to "take a pint" out of me...that would be bad! duh. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 1, 2011 Report Share Posted March 1, 2011 I came back negative for the JAK2 mutation! The hematologist says that it can only be a plasma volume issue without anemia. I am supposed to find a weight where my BP is "normal" and stay there if I can. He also told me to never allow a doc to "take a pint" out of me...that would be bad! duh.Yay- re the JAK2- you didn't need that!!! And, your blood volume question seems to have been answered- right? Does that mean that you are most likely a low-flow subtype? Quote Link to comment Share on other sites More sharing options...
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