Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Hi again Laurie, I bet we all hear that A LOT! lol I find it more than frustrating to have lots of what are sometimes minor and sometimes more than minor deviations on different test results only to be told that it is not significant. Grrr... I wonder sometimes why doctors have you TAKE the tests if they have so little confidence in test results? It also makes me crazy when they have a normal range that is so broad that the difference between the low and the high is very significant. And if you are at either end of the normal range they still consider you normal even though 2 points over the line would make you abnormal. I guess it is probably more my frustration at having an illness that is profound enough to take away my ability to function normally and yet continue to have many medical tests come back showing nearly normal results and the test results that are not normal are overlooked as not significant. I always see them as a clue, but doctors don't see them that way. They are not in a position to go on an exploration I guess. All the pity. In this instance though, I had blood test results that came back nearly normal about 8 years ago, but the pyruvate was low. The doctor who saw it ignored it saying it wasn't that low and he didn't know what significance it could be anyway. But I had never heard of mito at that time, and if he had taken the time to investigate, he might have stumbled upon a question of mito being a reason for a low pyruvate and I might have been diagnosed sooner. Sooner is always better than later. I don't know how to get that idea across to my doctors, when we seem to have such different views of test results. Adam In a message dated 5/13/2004 2:54:59 PM Eastern Standard Time, writes: > Message: 2 > Date: Thu, 13 May 2004 06:57:32 -0400 > > Subject: Re: pyruvate/lactate/ Laurie > > Adam > > I have asked repeatedly and keep being told that low values are not > significant. I wonder if they are even looking at all of us and seeing that > there are many of us with mito with this kind of test results and put their > heads together to figure it out. I will try to ask during the " ask the > doctor " time at the conference. > > laurie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Adam I think the problem with many doctors is that they are looking for something specific, but the lab only does that test as part of the panel. Then the doctor looks only at the one he wanted to see and ignores the others. I do know it is frustrating. There is also the issue of having abnormal labs which really aren't abnormal if taking a supplement or medication. There are times when questioning will result in some insight and other times not. laurie > From: AdamM321@... > Reply-To: > Date: Thu, 13 May 2004 17:14:31 EDT > To: > Subject: pyruvate/lactate/ Laurie > > Hi again Laurie, > > I bet we all hear that A LOT! lol I find it more than frustrating to have > lots of what are sometimes minor and sometimes more than minor deviations on > different test results only to be told that it is not significant. Grrr... > > I wonder sometimes why doctors have you TAKE the tests if they have so little > confidence in test results? It also makes me crazy when they have a normal > range that is so broad that the difference between the low and the high is > very > significant. And if you are at either end of the normal range they still > consider you normal even though 2 points over the line would make you > abnormal. > > I guess it is probably more my frustration at having an illness that is > profound enough to take away my ability to function normally and yet continue > to > have many medical tests come back showing nearly normal results and the test > results that are not normal are overlooked as not significant. I always see > them > as a clue, but doctors don't see them that way. They are not in a position > to go on an exploration I guess. All the pity. > > In this instance though, I had blood test results that came back nearly > normal about 8 years ago, but the pyruvate was low. The doctor who saw it > ignored > it saying it wasn't that low and he didn't know what significance it could be > anyway. But I had never heard of mito at that time, and if he had taken the > time to investigate, he might have stumbled upon a question of mito being a > reason for a low pyruvate and I might have been diagnosed sooner. Sooner is > always better than later. > > I don't know how to get that idea across to my doctors, when we seem to have > such different views of test results. > > Adam > > > In a message dated 5/13/2004 2:54:59 PM Eastern Standard Time, > writes: > >> Message: 2 >> Date: Thu, 13 May 2004 06:57:32 -0400 >> >> Subject: Re: pyruvate/lactate/ Laurie >> >> Adam >> >> I have asked repeatedly and keep being told that low values are not >> significant. I wonder if they are even looking at all of us and seeing that >> there are many of us with mito with this kind of test results and put their >> heads together to figure it out. I will try to ask during the " ask the >> doctor " time at the conference. >> >> laurie >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Adam , I share your frustration with test results (almost word for word) and doctor's interpretation (or lack of). I think about the only things one can do is try to learn as much as possible about the tests and the disease and become one's own advocate...which is why groups like this are a lifeline and SO important. THANKS FOLKS! Newbie question: I'm still trying to understand lactate and pyruvate levels in mito. In mito's who do have abnormal lactate and pyruvate levels, is the lactate generally high and the pyruvate low. Do you know how blood level test and urine level tests compare as far as reliability? The lab screwed up my blood tests, but I just found the results of lactate and pyruvate test levels from last August that were done by Meta-Metrix as part of an in depth biochemical urine panel. Thanks, Anita Quote Link to comment Share on other sites More sharing options...
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