Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Joanne, I know nothing about this lab, but just wanted to say that my labs can vary considerably depending on which metabolic " groove " I am in. Certain tests can be abnormal for a period of months or even a year or two and then revert to normal for a while. In fact, some of these abnormal results tend to take turns. When some are off, others will be okay and vice versa. Just my experience. Barbara > Your thoughts please....my girls have had consistantly abnormal endocrine labs at > Children's Hospital of Wisconsin, Mayo Clinic and our local hospital lab. Recently, > they were seen by an adult endocrinologist at Froedtert Hospital (Milwaukee). She > ordered repeat studies which were run by Dynalab. I received the results yesterday > and they were all normal (with very different values than have been consistant at > the other labs). Does anyone know how reputable this lab is? How likely would it > be to have one normal set of labs for both daughters when all of their studies have > been abnormal at the other labs for almost two years? > > > 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 May 20, 2006 Report Share Posted May 20, 2006 Joanne, the same thing here, my sons endocrine labs were off for about a year and then they were normal and have been for several years with the exception of once when he was very sick. why not have them repeated then at the same lab that they came bcak normal at? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 1) They ordered several thousand dollars worth of labs. 2) The doc had NEVER seen a " surviving " young adult with mito before and wasn't keen on trying any treatment to begin with. 3) Both girls have definite clinical signs/symptoms that there are problems in this oprgan system, but now they really don't want to treat. I have no idea what or how to proceed. MitomomX3@... wrote: why not have them repeated then at the same lab that they came bcak normal at? 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 May 20, 2006 Report Share Posted May 20, 2006 Hi Joanne, Are you back from " Doggie Boot Camp " yet? I hope you had a good time there. Sorry to hear that the girls are having problems with their endocrine systems. I also have labs that have been high for years and still are. I am going to see an endo at HUP. Plus my DEXA Scan came back as very bad. I know that is too far for you to travel. Plus I don't even know if he is good or not yet. I will let you know after my appt. in June. It is so hard to find doctors that will treat us, once they hear Mitochondrial disease, they want nothing to do with us. Best of luck!! Hugs, Ann-Marie Re: Dynalab?? 1) They ordered several thousand dollars worth of labs. 2) The doc had NEVER seen a " surviving " young adult with mito before and wasn't keen on trying any treatment to begin with. 3) Both girls have definite clinical signs/symptoms that there are problems in this oprgan system, but now they really don't want to treat. I have no idea what or how to proceed. MitomomX3@... wrote: why not have them repeated then at the same lab that they came bcak normal at? 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 May 21, 2006 Report Share Posted May 21, 2006 Joanne, why did they send you to a new lab anyway? If the one you were going to before was reliable... I sure hope they take into consideration that they have been abnormal for so long. And that they have symptoms. I will be thinking of you and the girls and hoping it all works out... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 I am humbled to hear of what some of you are having to go through and thoughts are with you just reading the mails. May I interject though and ask which particular tests you refer to when talking about endocrines? thks in advance. pamela Re: Dynalab?? Joanne, the same thing here, my sons endocrine labs were off for about a year and then they were normal and have been for several years with the exception of once when he was very sick. why not have them repeated then at the same lab that they came bcak normal at? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 Joanne, I am so sorry to hear that. what a terrible way to be treated.. Ignorance is so frustrating....I know you will keep fighting for those girls...know that I am thinking of you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 The new lab was at the hospital where the adult specialist is located. And, they are NOT taking into account the all of the other labs have been abnormal. MitomomX3@... wrote: Joanne, why did they send you to a new lab anyway? If the one you were going to before was reliable... I sure hope they take into consideration that they have been abnormal for so long. And that they have symptoms. I will be thinking of you and the girls and hoping it all works out... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 The problem that I run into when getting monthly labs(due to being a long term consumer) is that each lab has a different " normal range " for the results of their labs. Because of this I had to make sure that every month my labs are sent to the same lab. I use a Specialty lab that does a lot of testing for those on TPN. I find it ridiculous that this " new " lab won't take into account the results of the testing that was done at the other labs where the results were abnormal. I guess you can say that the " new " lab certainly isn't thinking " outside the box " What a shame when one lab thinks that their lab is superior and doesn't take into account all the results. Good Luck Joanne! Hugs, Ann-Marie Re: Dynalab?? The new lab was at the hospital where the adult specialist is located. And, they are NOT taking into account the all of the other labs have been abnormal. MitomomX3@... wrote: Joanne, why did they send you to a new lab anyway? If the one you were going to before was reliable... I sure hope they take into consideration that they have been abnormal for so long. And that they have symptoms. I will be thinking of you and the girls and hoping it all works out... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 that was suppose to say: " due to being a long term TPN consumer " sorry .. Hugs, Ann-Marie Re: Dynalab?? The new lab was at the hospital where the adult specialist is located. And, they are NOT taking into account the all of the other labs have been abnormal. MitomomX3@... wrote: Joanne, why did they send you to a new lab anyway? If the one you were going to before was reliable... I sure hope they take into consideration that they have been abnormal for so long. And that they have symptoms. I will be thinking of you and the girls and hoping it all works out... Quote Link to comment Share on other sites More sharing options...
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