Guest guest Posted December 3, 2005 Report Share Posted December 3, 2005 Joanne, I'm afraid I can't really help you with the labs, but wanted you to know I understand your frustration. My husband, (no mito), had a blood clot in the spring of this year. Docs found out he has a clotting mutation, Factor V Leiden that makes his blood clot too much. He has been on blood thinners since the time of the blood clot. Now he has low red blood count, low white blood count and high iron. The first hemotoligist just blew it all off. We have now started him seeing a different one. He ran additional labs and has now told us if the results are normal, then a bone marrow aspiration is the next step. I sure hope doesn't have to go that far to get answers, but I wanted to mention that since hemtoligists also handle cancer treatments, they don't all have a strong focus on blood disorders. You may need to also keep that in mind. Joanne Kocourek wrote: > Please help me " sort out " abnormalities in 's labs. Every search I've tried links me back to Thalessemia but nothing quite " fits " . > > Hx: was diagnosed with Thalessemia B minor around the age of 4 and treated for a number of years (until her values were stable). She, also, has a diagnosis of Plasminogen Activator Inhibitor Deficiency. Over the past several months her CBC has been doing odd things, ie RBC drops to around 3.5 and MCH elevations with low RDW. Hematoilogy keeps saying she's NOT anemia as her H & H are ok. THey also have stated repeated she doesn't heve/didn't have Thalessemia B minor (even though no labs were ever done other than the initial diagnostic ones) and her rion levels, etc are all fine (again, they never redraw them ,just seemed to assume). I asked our case managing physician to do some basic labs to recheck since one group insists things are fine, yet looks pale, is more tired, etc. (and he agreed). > > Labs: Hemoglobin A high 97.9 (94.1-97.7%), Hemoglobin F 0.2 (0-2.0%), Hemoglobin A2 low 1.9 (2.3-3.9%). TIBC high 492 (294-434), Vit B 12 high (200-1100), Ferratin 10.6 (10-70), Iron 81 (44-142), Retic 1.2 (0.5-2.2%). > > Her Lactate was 17 high (4-15) and Pyruvate 1.42 high (0.3-0.7), Ammonia 20 (normal) . Amino acids and organic acids pending. > > Bill Rhead siad the metabolic labs are " off " and maybe we need to look at adding Mg (Dr. Whiteman said no previously as her MG level is high end of normal). No one seems concerned about the hematology labs yet given her RBC is bouncing between very low normal and low, I can't help but wonder why? > > Dr. Rice (case managing doc) is open to my opinions/thoughts, especially if I can support those ideas with journal articles etc. Do you have any idea what these values might indicate??? > > >Joanne Kocourek (mom to , lies, and ) >visit us at: http://www.caringbridge.org/il/annakris > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2005 Report Share Posted December 3, 2005 Thanks , I really wonder if our case managing doc needs to run everything by the ONE Hematologist that seems to have a far better knowledge of mito. Even with a normal H &H, Kristne often " acts " anemic. I also realize that kids (and adults) with chronic pulmonary issues often have higher H&H because of the pulmonary issues so her H&H may be inflated as a result. I'm just really FRUSTRATED. She has had a marked increase in signs/symptoms that aren't resolving...cardiac, GI, hem,...and it's disconcerting. Maybe it is all related to a mito brown out type situation, yet rest fluids, etc aren't turing it around. dgregori dgregori@...> wrote: Joanne, I'm afraid I can't really help you with the labs, but wanted you to know I understand your frustration. My husband, (no mito), had a blood clot in the spring of this year. Docs found out he has a clotting mutation, Factor V Leiden that makes his blood clot too much. He has been on blood thinners since the time of the blood clot. Now he has low red blood count, low white blood count and high iron. The first hemotoligist just blew it all off. We have now started him seeing a different one. He ran additional labs and has now told us if the results are normal, then a bone marrow aspiration is the next step. I sure hope doesn't have to go that far to get answers, but I wanted to mention that since hemtoligists also handle cancer treatments, they don't all have a strong focus on blood disorders. You may need to also keep that in mind. Joanne Kocourek wrote: > Please help me " sort out " abnormalities in 's labs. Every search I've tried links me back to Thalessemia but nothing quite " fits " . > > Hx: was diagnosed with Thalessemia B minor around the age of 4 and treated for a number of years (until her values were stable). She, also, has a diagnosis of Plasminogen Activator Inhibitor Deficiency. Over the past several months her CBC has been doing odd things, ie RBC drops to around 3.5 and MCH elevations with low RDW. Hematoilogy keeps saying she's NOT anemia as her H & H are ok. THey also have stated repeated she doesn't heve/didn't have Thalessemia B minor (even though no labs were ever done other than the initial diagnostic ones) and her rion levels, etc are all fine (again, they never redraw them ,just seemed to assume). I asked our case managing physician to do some basic labs to recheck since one group insists things are fine, yet looks pale, is more tired, etc. (and he agreed). > > Labs: Hemoglobin A high 97.9 (94.1-97.7%), Hemoglobin F 0.2 (0-2.0%), Hemoglobin A2 low 1.9 (2.3-3.9%). TIBC high 492 (294-434), Vit B 12 high (200-1100), Ferratin 10.6 (10-70), Iron 81 (44-142), Retic 1.2 (0.5-2.2%). > > Her Lactate was 17 high (4-15) and Pyruvate 1.42 high (0.3-0.7), Ammonia 20 (normal) . Amino acids and organic acids pending. > > Bill Rhead siad the metabolic labs are " off " and maybe we need to look at adding Mg (Dr. Whiteman said no previously as her MG level is high end of normal). No one seems concerned about the hematology labs yet given her RBC is bouncing between very low normal and low, I can't help but wonder why? > > Dr. Rice (case managing doc) is open to my opinions/thoughts, especially if I can support those ideas with journal articles etc. Do you have any idea what these values might indicate??? > > >Joanne Kocourek (mom to , lies, and ) >visit us at: http://www.caringbridge.org/il/annakris > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2005 Report Share Posted December 3, 2005 Joanne If it is decided that should try magnesium, you might want to check with docs about using magnesium orotate. Dr. Cohen suggested it for me and I am pleased with the results. I spill magnesium, so was taking 3500 mg. of magnesium oxide. I now take 2000 magnesium oxide and 1500 mg. magnesium orotate. Good luck with getting some answers. laurie > Thanks , > > I really wonder if our case managing doc needs to run everything by the > ONE Hematologist that seems to have a far better knowledge of mito. Even > with a normal H &H, Kristne often " acts " anemic. I also realize that kids > (and adults) with chronic pulmonary issues often have higher H&H because of > the pulmonary issues so her H&H may be inflated as a result. I'm just > really FRUSTRATED. She has had a marked increase in signs/symptoms that > aren't resolving...cardiac, GI, hem,...and it's disconcerting. Maybe it is > all related to a mito brown out type situation, yet rest fluids, etc aren't > turing it around. > > dgregori dgregori@...> wrote: Joanne, > > > I'm afraid I can't really help you with the labs, but wanted you to know > I understand your frustration. My husband, (no mito), had a blood clot > in the spring of this year. Docs found out he has a clotting mutation, > Factor V Leiden that makes his blood clot too much. He has been on > blood thinners since the time of the blood clot. Now he has low red > blood count, low white blood count and high iron. The first > hemotoligist just blew it all off. We have now started him seeing a > different one. He ran additional labs and has now told us if the > results are normal, then a bone marrow aspiration is the next step. I > sure hope doesn't have to go that far to get answers, but I > wanted to mention that since hemtoligists also handle cancer treatments, > they don't all have a strong focus on blood disorders. You may need to > also keep that in mind. > > > > Joanne Kocourek wrote: > > > Please help me " sort out " abnormalities in 's labs. Every > search I've tried links me back to Thalessemia but nothing quite " fits " . > > > > Hx: was diagnosed with Thalessemia B minor around the age > of 4 and treated for a number of years (until her values were stable). > She, also, has a diagnosis of Plasminogen Activator Inhibitor Deficiency. > Over the past several months her CBC has been doing odd things, ie RBC > drops to around 3.5 and MCH elevations with low RDW. Hematoilogy keeps > saying she's NOT anemia as her H & H are ok. THey also have stated > repeated she doesn't heve/didn't have Thalessemia B minor (even though no > labs were ever done other than the initial diagnostic ones) and her rion > levels, etc are all fine (again, they never redraw them ,just seemed to > assume). I asked our case managing physician to do some basic labs to > recheck since one group insists things are fine, yet looks pale, > is more tired, etc. (and he agreed). > > > > Labs: Hemoglobin A high 97.9 (94.1-97.7%), Hemoglobin F 0.2 > (0-2.0%), Hemoglobin A2 low 1.9 (2.3-3.9%). TIBC high 492 (294-434), Vit > B 12 high (200-1100), Ferratin 10.6 (10-70), Iron 81 (44-142), Retic 1.2 > (0.5-2.2%). > > > > Her Lactate was 17 high (4-15) and Pyruvate 1.42 high (0.3-0.7), > Ammonia 20 (normal) . Amino acids and organic acids pending. > > > > Bill Rhead siad the metabolic labs are " off " and maybe we need to > look at adding Mg (Dr. Whiteman said no previously as her MG level is high > end of normal). No one seems concerned about the hematology labs yet > given her RBC is bouncing between very low normal and low, I can't help > but wonder why? > > > > Dr. Rice (case managing doc) is open to my opinions/thoughts, > especially if I can support those ideas with journal articles etc. Do you > have any idea what these values might indicate??? > > > > > >Joanne Kocourek (mom to , lies, and ) > >visit us at: http://www.caringbridge.org/il/annakris > > > > Quote Link to comment Share on other sites More sharing options...
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