Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Whether this discrepency is significant would in part depend on the amount of deficiency found in the first test. Were the levels slightly, moderately or severely deficient? Lab error does happen, of course. Accuracy depends on how frequently the lab runs this test, how well their technicians are trained and their quality control. Normal variations in diet might account for a temporary, mild deficiency since carnitine is present in meats and other foods. One other thought--as I understand it, plasma carnitine levels do not always correlate with carnitine levels in muscle cells. In one form of carnitine deficiency specific to muscle, reduced activity is usually found only in muscle cells while plasma activity remains normal. Systemic carnitine deficiency has broader effects and in those cases plasma levels are usually reduced. may have something to add here, as she has systemic carnitine deficiency. Barbara > Hi, > I'm wondering if anyone else on this list has had experience with > their plasma carnitine levels reading deficient and later testing in > the normal range. I'm trying to figure out if this is something > that can happen (without treatment) or if the labs were read > incorrectly. > > There was an eight week timeframe between test, and no improvement > in symptoms (actually I feel worse), so I'm at a loss as to what to > think happened. > > Thanks, > Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Thanks for explaining it in this way. I didn't realize the difference between a systemic problem and muscle - regarding the carnitine deficiency. So, it sounds like if I really have low carnitine in my bloodwork - it is more likely to be a systemic problem, right? I was told I had a significant plasma deficiency (and there were two tests run -- one while at rest and one during exercise). I would be surprised if both were wrong. The " third test " was done at a lab that I don't have as much faith in their accuracy (they have made procedural errors before with my bloodwork). I didn't actually see the report yet but I was told the level was 22. (I have no idea what the normal range is -- I guess this would have been a good question to ask). I still haven't gotten the new numbers... I'm finding it extremely difficult to find the time to demand copies of everything, but I will pursue this. Thanks Maggie > > Hi, > > I'm wondering if anyone else on this list has had experience with > > their plasma carnitine levels reading deficient and later testing > in > > the normal range. I'm trying to figure out if this is something > > that can happen (without treatment) or if the labs were read > > incorrectly. > > > > There was an eight week timeframe between test, and no improvement > > in symptoms (actually I feel worse), so I'm at a loss as to what > to > > think happened. > > > > Thanks, > > Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 There is free, total and ester levels for carnitine. I was told the in metobolic disorders, often times the individual values may be within a normal range, but the ratio could be way off and signify a problem. P.S. Make sure they did carnitine and NOT carotene. I can't tell you how many times THAT has happened to me at the lab. whoewe2002 wrote: Thanks for explaining it in this way. I didn't realize the difference between a systemic problem and muscle - regarding the carnitine deficiency. So, it sounds like if I really have low carnitine in my bloodwork - it is more likely to be a systemic problem, right? I was told I had a significant plasma deficiency (and there were two tests run -- one while at rest and one during exercise). I would be surprised if both were wrong. The "third test" was done at a lab that I don't have as much faith in their accuracy (they have made procedural errors before with my bloodwork). I didn't actually see the report yet but I was told the level was 22. (I have no idea what the normal range is -- I guess this would have been a good question to ask). I still haven't gotten the new numbers... I'm finding it extremely difficult to find the time to demand copies of everything, but I will pursue this. Thanks Maggie Hi, I'm wondering if anyone else on this list has had experience with their plasma carnitine levels reading deficient and later testing in the normal range. I'm trying to figure out if this is something that can happen (without treatment) or if the labs were read incorrectly. There was an eight week timeframe between test, and no improvement in symptoms (actually I feel worse), so I'm at a loss as to what to think happened. Thanks, Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Good point, . My carnitine deficiency is secondary to a broad mitochondrial defect. Total and free carnitine have normalized with Carnitor, but the esterified fraction remains very low, indicating that the pathway is blocked. These values all come from muscle, however, not plasma. Barbara > >> > >> > >>>Hi, > >>>I'm wondering if anyone else on this list has had experience > >>> > >>> > >with > > > > > >>>their plasma carnitine levels reading deficient and later > >>> > >>> > >testing > > > > > >>in > >> > >> > >>>the normal range. I'm trying to figure out if this is something > >>>that can happen (without treatment) or if the labs were read > >>>incorrectly. > >>> > >>>There was an eight week timeframe between test, and no > >>> > >>> > >improvement > > > > > >>>in symptoms (actually I feel worse), so I'm at a loss as to what > >>> > >>> > >>to > >> > >> > >>>think happened. > >>> > >>>Thanks, > >>>Maggie > >>> > >>> > > > > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 Maggie, It's important that you know which carnitine level that was like explained there are several different ones. My Plasma levels- Total 22 Normal 51 Reference Range 29-73 Free 13 Normal 39 Reference Range 23-58 Urine levels- Total 472 normal 170 Range 62-369 Free 183 normal 68 Range 8-254 I've had my plasma free be as low as 9 before. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 , Thanks. This helps me to understand a little better what I need to look at. I can't believe it, but I still haven't seen my lab report. I tried to get it faxed to me yesterday from three different doctor's offices. Left emails, voicemails and faxes for the doctors. I'm going to show up in person at my pulmonologist's office this morning to see if I get anywhere there. Maggie - In , LILQT4U1984@a... wrote: > Maggie, > > It's important that you know which carnitine level that was like > explained there are several different ones. > > My Plasma levels- Total 22 Normal 51 Reference Range 29-73 > > Free 13 Normal 39 Reference Range 23-58 > > Urine levels- Total 472 normal 170 Range 62-369 > > Free 183 normal 68 Range 8-254 > > I've had my plasma free be as low as 9 before. Hope this helps. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 Maggie, I have a severe carnitine deficiency due to a carnitine transporter defect within my renal tubes. It sounds like you are severely depleted as well but for a different reason or a different carnitine prob. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 , In my report it says Plasma levels (at rest) 22 Free carnitine 14 Carnitine esters within normal limits Looks like my tests results are fairly close to yours (except I think my urine tests fell within normal range). Interesting. Maggie > Maggie, > > It's important that you know which carnitine level that was like > explained there are several different ones. > > My Plasma levels- Total 22 Normal 51 Reference Range 29-73 > > Free 13 Normal 39 Reference Range 23-58 > > Urine levels- Total 472 normal 170 Range 62-369 > > Free 183 normal 68 Range 8-254 > > I've had my plasma free be as low as 9 before. Hope this helps. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 Hi Maggie, You might also make sure that the test wasnt for " creatinine " instead of the carnitine. Frustrating as it can be, sometimes errors occur and the wrong test gets done. Also, if you are waiting to get the paper copy of the results from Siva, you will prob have to fax in a request and tell them when you will pick it up in person. I have never met anyone that actually got a copy of anything sent to them from that office. The only way anyone has gotten lab reports (and believe it or not some of those were test errors run for the wrong labs which of course came back normal lol) was to drive down to the clinic and pick up the papers in person. Juli -- In , " whoewe2002 " <whoewe2002@y...> wrote: > Hi, > I'm wondering if anyone else on this list has had experience with > their plasma carnitine levels reading deficient and later testing in > the normal range. I'm trying to figure out if this is something > that can happen (without treatment) or if the labs were read > incorrectly. > > There was an eight week timeframe between test, and no improvement > in symptoms (actually I feel worse), so I'm at a loss as to what to > think happened. > > Thanks, > Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 Hi Maggie, Don't know if it will help any, but I can tell you Nikki's results. Each lab also seems to have their own reference range, so its important to find out what range yours uses. Total= 5 range 31-67 Free= 4 range 25-55 Esters 0.8 range 3.8-19 -- In , LILQT4U1984@a... wrote: > Maggie, > > It's important that you know which carnitine level that was like > explained there are several different ones. > > My Plasma levels- Total 22 Normal 51 Reference Range 29-73 > > Free 13 Normal 39 Reference Range 23-58 > > Urine levels- Total 472 normal 170 Range 62-369 > > Free 183 normal 68 Range 8-254 > > I've had my plasma free be as low as 9 before. Hope this helps. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 Hi Juli! Thanks. Those are some pretty low numbers. I find it interesting about the different ranges, and wonder why. I didn't have any bloodwork done with Dr. Siv (just met him for the first time Wednesday), but I can't seem to get the results from prior tests over to him -- and he really wants to see those. Maggie > > Maggie, > > > > It's important that you know which carnitine level that was > like > > explained there are several different ones. > > > > My Plasma levels- Total 22 Normal 51 Reference Range 29-73 > > > > Free 13 Normal 39 Reference Range > 23-58 > > > > Urine levels- Total 472 normal 170 Range 62-369 > > > > Free 183 normal 68 Range 8-254 > > > > I've had my plasma free be as low as 9 before. Hope this helps. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 Maggie The reason for the differences in ranges is due to the equipment that is used for measuring the levels. You can't compare one labs ranges with anothers, just like trying to compare apples and oranges. laurie > > Reply-To: > Date: Fri, 07 Nov 2003 21:54:17 -0000 > To: > Subject: Re: carnitine tests > > Hi Juli! > Thanks. Those are some pretty low numbers. I find it interesting > about the different ranges, and wonder why. > > I didn't have any bloodwork done with Dr. Siv (just met him for the > first time Wednesday), but I can't seem to get the results from > prior tests over to him -- and he really wants to see those. > > Maggie > > >>> Maggie, >>> >>> It's important that you know which carnitine level that was >> like >>> explained there are several different ones. >>> >>> My Plasma levels- Total 22 Normal 51 Reference Range 29-73 >>> >>> Free 13 Normal 39 Reference > Range >> 23-58 >>> >>> Urine levels- Total 472 normal 170 Range 62-369 >>> >>> Free 183 normal 68 Range 8-254 >>> >>> I've had my plasma free be as low as 9 before. Hope this helps. >>> >>> > > > Quote Link to comment Share on other sites More sharing options...
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