Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 I've been following some of the CoQ10 posts and wanted to add my experiences. I have had low Co Enzyme Q10 levels for years and am now on 2700 mg of CoQ10 a day (almost an entire bottle). My CoQ10 level is in normal range but I have been told by my mito doctor that it should be at least twice the upper limits of normal on supplementation so based on all I am getting, my bloodwork is still lower than it should be. Several hospitals across the country are participating in phase 3 trials for CoQ10 supplementation in children. They are looking for children who are willing to participate. There was info. about this at the UMDF Conference last week and it said that " all study participants will receive 6 mths of CoQ10 (10 mg/kg/day) and 6 mths of placebo, in random order, as well as a supplement of other vitamins and cofactors commonly used to treat mitochondrial disorders. If you know of a patient who has suspected or proven mitochondrial diseasem whose family might be interested in participating in this study, or if you have additional questions regarding the trials, please contact Ms. Lesa Gilbert, RN Coordinator of the CoQ10 Clinical Trial _gilbelr@medicine,ufl.edu_ (mailto:gilbelr@medicine,ufl.edu) Participating hospitals include: University of Florida, Gainesville; Rainbow Babies and Children's, Cleveland; Cincinatti Childrens, Cincinatti, OH; Hospital for Sick Children, Toronto, Canada. Ages of participants must be between 12 mths and 17 yrs " . Also, for those of you who need to get CoQ10 levels drawn at your local labs, I often get them sent to Cincinatti Children's. The following information below may help the lab to process it correctly. This particular lab fractionates the CoQ10 into Total, Reduced, and Oxidatized and gives a ratio of CoQ10: cholesterol. Also, you don't have to participate in the above study to get your labwork sent here....both adults and children can have CoQ10 levels sent. Malisa COENZYME Q10 LAB DRAWS The neuropharmacology and Clinical Laboratories of the Children's Hospital Medical Center in Cincinnati have recently joined to develop and offer a new test profile for assessing coenzyme Q10 status. This unique profile includes the concentrations of total, oxidized, and reduced forms of this essential cofactor, plus the total Q10 concentration indexed with total cholesterol. Coenzyme Q10 (also called CoQ or ubiquinone) is an endogenous cofactor which is essential for mitochondrial function and cellular energy production. It also serves as an important antioxidant, protecting membranes from oxidative injury, and conserving and regenerating vitamin E. A new method for measuring the reduced (or antioxidant) and oxidized forms of coenzyme Q10 has been developed in the CHMC neuropharmacology laboratory (see Clinical Chemistry 2001;47(2)256-265). Because coenzyme Q10 may be depleted in certain acute and chromic disease states, the ratio of reduced to total Q10 concentration is also a useful biomarker of oxidative stress. Patients who have coenzyme Q10 deficiency also have increased risk of mitochondrial and cellular injury from excess production of free radicals. Certain drugs and malnourished states may also tend to deplete the body's coenzyme Q10 reserves. Measurement of coenzyme Q10 concentrations in plasma can assist clinicians in detecting coenzyme Q10 deficiency states, and serve as a guide for dosing when oral supplementation is indicated. Because significant inter-product variability in the absorption and bioavailability of coenzyme Q10 has been reported with over-the-counter (OTC) Q10 preparations, the Coenzyme Q10 Profile will also assist in verifying the extent of absorption of Q10 from those products. Included in the Coenzyme Q10 Profile are the oxidized, reduced, and total Q10 concentrations. Also the fraction of the reduced Q10 in the total concentration, and the Q10: Total Cholesterol Index (or QCI0) are reported. Reference intervals and comments are also provided with each report. Potential indications for testing coenzyme Q10 status include: - Suspected coenzyme Q10 deficiency secondary to inheritance (rare) or other mitochondrial disease - Cardiomyopathy - Neurodegenerative diseases, e.g. Parkinson's, Alzheimer's, muscular dystrophy, ALS - Metabolic disease - Malnutrition - Presurgical screening for patients who have pre-existing coenzyme Q10 deficiency or who may have increased risk of ischemia-reperfusion injury - Prior treatment with HMG-CoA reductase inhibitors ( " statin " drugs) or other drugs which may lower coenzyme Q10 levels - Gastrointestinal malabsorption - Assessment of coenzyme Q10 dosing adequacy The Coenzyme Q10 Profile requires a minimum of 2 mL of heparinized blood (green to vacutainer tube), which must be placed on ice immediately and sent to the CHMC Clinical Laboratory for next morning delivery. Please call the CHMC Clinical Laboratory Outreach Director at in advance for billing, ordering, shipping, and specimen collection information, or Dr. Miles, Pharm.D., CHMC Division of Child Neurology at (513) 636-7871. V. Miles, PharmD Prof. Of Clinical Pediatrics and Neurology Director, Clinical Neuropharmacology Laboratory Childrenc's Hospital Medical Center 3333 Burnet Ave. Cincinnati, OH 45229 Phone: 513/636-7871 Fax: 513/636-3980 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Hi Randall, I use the generic form of CoQ10 currently. My insurance pays for it so I don't have much choice which brand I use if I want to be sure it's paid for. However, in the past I have tried Tishcon and didn't notice much of a change in blood levels. I put the CoQ10 through my J-tube so this could be part of why I'm not absorbing it. However, Tishcon did make a liquid CoQ10 specifically for tubes and that didn't raise my blood levels either. I have been told that not having a rise in blood levels with high dose CoQ10 is pretty unusual and may have something to do with my underlying GI dysmotility as part of the mito disease. All this being said, I have noticed a significant drop in my leg pain by using CoQ10 (with all brands). It's the only thing that makes a difference in my leg pain. Again, these are just my personal experiences and most people do get a good jump in blood levels with CoQ10. Tishcon is supposedly the most reputable brand, but again, results about what works best will vary from person to person. I don't know what brand of CoQ10 they're using in the studies, but you could email the study coordinator to find out. Malisa In a message dated 6/27/2006 12:32:44 P.M. Eastern Standard Time, ranbo1@... writes: Malisa, May I ask what brand of CoQ10 you use? Also, any idea what brand they are using in these studies? Randall ----- Original Message ----- From: _Malilibear@..._ (mailto:Malilibear@...) To: _ @yahoogroumitold_ (mailto: ) Sent: Monday, June 26, 2006 9:40 PM Subject: CoQ10 Study & Labwork I've been following some of the CoQ10 posts and wanted to add my experiences. I have had low Co Enzyme Q10 levels for years and am now on 2700 mg of CoQ10 a day (almost an entire bottle). My CoQ10 level is in normal range but I have been told by my mito doctor that it should be at least twice the upper limits of normal on supplementation so based on all I am getting, my bloodwork is still lower than it should be. Several hospitals across the country are participating in phase 3 trials for CoQ10 supplementation in children. They are looking for children who are willing to participate. There was info. about this at the UMDF Conference last week and it said that " all study participants will receive 6 mths of CoQ10 (10 mg/kg/day) and 6 mths of placebo, in random order, as well as a supplement of other vitamins and cofactors commonly used to treat mitochondrial disorders. If you know of a patient who has suspected or proven mitochondrial diseasem whose family might be interested in participating in this study, or if you have additional questions regarding the trials, please contact Ms. Lesa Gilbert, RN Coordinator of the CoQ10 Clinical Trial _gilbelr@medicine,_gilbelr@medicine, ufl.ed_gilbelr@_gilbelr@medicine, ufl.edu_ (mailto:gi University of Florida, Gainesville; Rainbow Babies and Children's, Cleveland; Cincinatti Childrens, Cincinatti, OH; Hospital for Sick Children, Toronto, Canada. Ages of participants must be between 12 mths and 17 yrs " . Also, for those of you who need to get CoQ10 levels drawn at your local labs, I often get them sent to Cincinatti Children's. The following information below may help the lab to process it correctly. This particular lab fractionates the CoQ10 into Total, Reduced, and Oxidatized and gives a ratio of CoQ10: cholesterol. Also, you don't have to participate in the above study to get your labwork sent here....both adults and children can have CoQ10 levels sent. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Malisa, May I ask what brand of CoQ10 you use? Also, any idea what brand they are using in these studies? Randall CoQ10 Study & Labwork I've been following some of the CoQ10 posts and wanted to add my experiences. I have had low Co Enzyme Q10 levels for years and am now on 2700 mg of CoQ10 a day (almost an entire bottle). My CoQ10 level is in normal range but I have been told by my mito doctor that it should be at least twice the upper limits of normal on supplementation so based on all I am getting, my bloodwork is still lower than it should be. Several hospitals across the country are participating in phase 3 trials for CoQ10 supplementation in children. They are looking for children who are willing to participate. There was info. about this at the UMDF Conference last week and it said that " all study participants will receive 6 mths of CoQ10 (10 mg/kg/day) and 6 mths of placebo, in random order, as well as a supplement of other vitamins and cofactors commonly used to treat mitochondrial disorders. If you know of a patient who has suspected or proven mitochondrial diseasem whose family might be interested in participating in this study, or if you have additional questions regarding the trials, please contact Ms. Lesa Gilbert, RN Coordinator of the CoQ10 Clinical Trial _gilbelr@medicine,ufl.edu_ (mailto:gilbelr@medicine,ufl.edu) Participating hospitals include: University of Florida, Gainesville; Rainbow Babies and Children's, Cleveland; Cincinatti Childrens, Cincinatti, OH; Hospital for Sick Children, Toronto, Canada. Ages of participants must be between 12 mths and 17 yrs " . Also, for those of you who need to get CoQ10 levels drawn at your local labs, I often get them sent to Cincinatti Children's. The following information below may help the lab to process it correctly. This particular lab fractionates the CoQ10 into Total, Reduced, and Oxidatized and gives a ratio of CoQ10: cholesterol. Also, you don't have to participate in the above study to get your labwork sent here....both adults and children can have CoQ10 levels sent. Malisa COENZYME Q10 LAB DRAWS The neuropharmacology and Clinical Laboratories of the Children's Hospital Medical Center in Cincinnati have recently joined to develop and offer a new test profile for assessing coenzyme Q10 status. This unique profile includes the concentrations of total, oxidized, and reduced forms of this essential cofactor, plus the total Q10 concentration indexed with total cholesterol. Coenzyme Q10 (also called CoQ or ubiquinone) is an endogenous cofactor which is essential for mitochondrial function and cellular energy production. It also serves as an important antioxidant, protecting membranes from oxidative injury, and conserving and regenerating vitamin E. A new method for measuring the reduced (or antioxidant) and oxidized forms of coenzyme Q10 has been developed in the CHMC neuropharmacology laboratory (see Clinical Chemistry 2001;47(2)256-265). Because coenzyme Q10 may be depleted in certain acute and chromic disease states, the ratio of reduced to total Q10 concentration is also a useful biomarker of oxidative stress. Patients who have coenzyme Q10 deficiency also have increased risk of mitochondrial and cellular injury from excess production of free radicals. Certain drugs and malnourished states may also tend to deplete the body's coenzyme Q10 reserves. Measurement of coenzyme Q10 concentrations in plasma can assist clinicians in detecting coenzyme Q10 deficiency states, and serve as a guide for dosing when oral supplementation is indicated. Because significant inter-product variability in the absorption and bioavailability of coenzyme Q10 has been reported with over-the-counter (OTC) Q10 preparations, the Coenzyme Q10 Profile will also assist in verifying the extent of absorption of Q10 from those products. Included in the Coenzyme Q10 Profile are the oxidized, reduced, and total Q10 concentrations. Also the fraction of the reduced Q10 in the total concentration, and the Q10: Total Cholesterol Index (or QCI0) are reported. Reference intervals and comments are also provided with each report. Potential indications for testing coenzyme Q10 status include: - Suspected coenzyme Q10 deficiency secondary to inheritance (rare) or other mitochondrial disease - Cardiomyopathy - Neurodegenerative diseases, e.g. Parkinson's, Alzheimer's, muscular dystrophy, ALS - Metabolic disease - Malnutrition - Presurgical screening for patients who have pre-existing coenzyme Q10 deficiency or who may have increased risk of ischemia-reperfusion injury - Prior treatment with HMG-CoA reductase inhibitors ( " statin " drugs) or other drugs which may lower coenzyme Q10 levels - Gastrointestinal malabsorption - Assessment of coenzyme Q10 dosing adequacy The Coenzyme Q10 Profile requires a minimum of 2 mL of heparinized blood (green to vacutainer tube), which must be placed on ice immediately and sent to the CHMC Clinical Laboratory for next morning delivery. Please call the CHMC Clinical Laboratory Outreach Director at in advance for billing, ordering, shipping, and specimen collection information, or Dr. Miles, Pharm.D., CHMC Division of Child Neurology at . V. Miles, PharmD Prof. Of Clinical Pediatrics and Neurology Director, Clinical Neuropharmacology Laboratory Childrenc's Hospital Medical Center 3333 Burnet Ave. Cincinnati, OH 45229 Phone: 513/636-7871 Fax: 513/636-3980 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Melisa Great info. Thanks for sharing. laurie > > > > > > > I've been following some of the CoQ10 posts and wanted to add my > experiences. > > I have had low Co Enzyme Q10 levels for years and am now on 2700 mg of > CoQ10 > a day (almost an entire bottle). My CoQ10 level is in normal range but I > have been told by my mito doctor that it should be at least twice the upper > limits of normal on supplementation so based on all I am getting, my > bloodwork is > still lower than it should be. > > Several hospitals across the country are participating in phase 3 trials > for > CoQ10 supplementation in children. They are looking for children who are > willing to participate. There was info. about this at the UMDF Conference > last > week and it said that " all study participants will receive 6 mths of CoQ10 > (10 mg/kg/day) and 6 mths of placebo, in random order, as well as a > supplement > of other vitamins and cofactors commonly used to treat mitochondrial > disorders. If you know of a patient who has suspected or proven > mitochondrial diseasem > whose family might be interested in participating in this study, or if you > have additional questions regarding the trials, please contact Ms. Lesa > Gilbert, RN Coordinator of the CoQ10 Clinical Trial > _gilbelr@medicine,ufl.edu_ (mailto:gilbelr@medicine,ufl.edu) Participating > hospitals include: > University of Florida, Gainesville; Rainbow Babies and Children's, > Cleveland; > Cincinatti Childrens, Cincinatti, OH; Hospital for Sick Children, Toronto, > Canada. Ages of participants must be between 12 mths and 17 yrs " . > > Also, for those of you who need to get CoQ10 levels drawn at your local > labs, I often get them sent to Cincinatti Children's. The following > information > below may help the lab to process it correctly. This particular lab > fractionates the CoQ10 into Total, Reduced, and Oxidatized and gives a > ratio of CoQ10: > cholesterol. Also, you don't have to participate in the above study to get > your labwork sent here....both adults and children can have CoQ10 levels > sent. > > Malisa > > > COENZYME Q10 LAB DRAWS > The neuropharmacology and Clinical Laboratories of the Children's > Hospital Medical Center in Cincinnati have recently joined to develop > and offer a new test profile for assessing coenzyme Q10 status. > > This unique profile includes the concentrations of total, oxidized, and > reduced forms of this essential cofactor, plus the total Q10 > concentration indexed with total cholesterol. > > Coenzyme Q10 (also called CoQ or ubiquinone) is an endogenous cofactor > which is essential for mitochondrial function and cellular energy > production. It also serves as an important antioxidant, protecting > membranes from oxidative injury, and conserving and regenerating vitamin > E. A new method for measuring the reduced (or antioxidant) and oxidized > forms of coenzyme Q10 has been developed in the CHMC neuropharmacology > laboratory (see Clinical Chemistry 2001;47(2)256-265). > > Because coenzyme Q10 may be depleted in certain acute and chromic > disease states, the ratio of reduced to total Q10 concentration is also > a useful biomarker of oxidative stress. Patients who have coenzyme Q10 > deficiency also have increased risk of mitochondrial and cellular injury > from excess production of free radicals. Certain drugs and malnourished > states may also tend to deplete the body's coenzyme Q10 reserves. > Measurement of coenzyme Q10 concentrations in plasma can assist > clinicians in detecting coenzyme Q10 deficiency states, and serve as a > guide for dosing when oral supplementation is indicated. > > Because significant inter-product variability in the absorption and > bioavailability of coenzyme Q10 has been reported with over-the-counter > (OTC) Q10 preparations, the Coenzyme Q10 Profile will also assist in > verifying the extent of absorption of Q10 from those products. Included > in the Coenzyme Q10 Profile are the oxidized, reduced, and total Q10 > concentrations. Also the fraction of the reduced Q10 in the total > concentration, and the Q10: Total Cholesterol Index (or QCI0) are > reported. Reference intervals and comments are also provided with each > report. > > Potential indications for testing coenzyme Q10 status include: > - Suspected coenzyme Q10 deficiency secondary to inheritance (rare) or > other mitochondrial disease > - Cardiomyopathy > - Neurodegenerative diseases, e.g. Parkinson's, Alzheimer's, muscular > dystrophy, ALS > - Metabolic disease > - Malnutrition > - Presurgical screening for patients who have pre-existing coenzyme Q10 > deficiency or who may have increased risk of ischemia-reperfusion injury > - Prior treatment with HMG-CoA reductase inhibitors ( " statin " drugs) or > other drugs which may lower coenzyme Q10 levels > - Gastrointestinal malabsorption > - Assessment of coenzyme Q10 dosing adequacy > > The Coenzyme Q10 Profile requires a minimum of 2 mL of heparinized blood > (green to vacutainer tube), which must be placed on ice immediately and > sent to the CHMC Clinical Laboratory for next morning delivery. Please > call the CHMC Clinical Laboratory Outreach Director at in > advance for billing, ordering, shipping, and specimen collection > information, or Dr. Miles, Pharm.D., CHMC Division of Child > Neurology at . > > V. Miles, PharmD Prof. Of Clinical Pediatrics and Neurology > Director, Clinical Neuropharmacology Laboratory Childrenc's Hospital > Medical Center 3333 Burnet Ave. Cincinnati, OH 45229 Phone: 513/636-7871 > Fax: 513/636-3980 > > Quote Link to comment Share on other sites More sharing options...
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