Guest guest Posted September 19, 2004 Report Share Posted September 19, 2004 Gillian I must tell you that I love your name. It is one of my favorites. I was on a natural thyroid for the first several years, but have done better on the synthetic. My thyroid gland is completely non-functioning at this point. I used a scooter for around 10 years and now have a power wheelchair which I love. I can be so much more independent with these aids and more. It makes me feel good to be able to do most things myself. My reacher is my next most important item. laurie > > Reply-To: > Date: Sun, 19 Sep 2004 17:09:19 -0000 > To: > Subject: Re: First post here, > > -Thanks Laurie for your reply..CAH is Congenital Adrenal > Hyperplasia/Hypoplasia..Mine didn't start in any definite sort of > way..just after a gynae op 6 years ago when things seemed to drop to > bits .Lots of things i have read say the steroid paths are > affected in Mito. > I was hyper for years withe the thyroid but apparently the > antibodies have just about knocked it out now..great fun..I asked > about thyroid meds because sometimes my FT3 goes too low and my doc > tried me on tertroxin T3 supplementation as well as Eltroxin (sorry > UK ) then he read about natural thyroid and wondered if that would > be better in Mito. > When my eloctrolytes are on rare occasions nomal..wow do I feel > better but unfortunatly B12 and disc trouble have put me in a > wheelchair..thats lifei suppose > Gillian > > > > > > -- In , Laureta Fitzgerald > wrote: >> Gillian >> >> Welcome to posting. I am glad you are on the list. >> >> I have autoimmune thyroid disease which is separate from the mito. > I have >> taken thyroid meds (synthroid) for over 40 years. It has > maintained my >> levels in the normal range. I have arthritis and chronic > tendonitis. I take >> Bextra for this, along with Glucosomine Chondrotin. Mine is not > rheumatoid >> arthritis. >> >> I hope the doctor gets all your thyroid and electrolyte problems > taken care >> of first. These could be causing some of the other problems. >> >> I have known people with mito who have lots of the other problems > caused by >> mito without the neurological and muscular problems. I think this > is kind of >> rare, but does exist. Mine started out as mostly muscular and I > now have >> many organ systems involved. >> >> What is CAH? >> >> laurie >> >>> From: " gillianstumps " >>> Reply-To: >>> Date: Sun, 19 Sep 2004 15:28:45 -0000 >>> To: >>> Subject: First post here, >>> >>> Hi all, >>> I was diagnosed with a complex1+1v deficiency wwith cox neg > fibres >>> last year..no grey matter disease just symmetric lesions in the >>> centrum semi-ovale and an emg showing no myopathy, neuropathy or >>> PN..just unfortunatly a thoracic myleopathy possibly caused by > B12 >>> deficiency...my mum and I have tested neg on gene testing and the >>> neuro has said this is not a neuro. illness but metabolic disease >>> causing neuro.symptoms..I now see a metaboic consultant who he >>> referred me to and this doc. has other mito. patients. >>> I have been getting your digests for a long time now and posting > on >>> braintalk where Alice told me to ask my questions here...so here >>> goes.. >>> I have been reffered to a specialist endo clinic for CAH and > steroid >>> testing which conditions I was told by metabolic Doc are often > found >>> in mito. They already have evidence of steroid lack in me...has >>> anyone else been tested for this and if so did treatment help > you? >>> >>> I have kidney illness proven on MRA which is causing many > symptoms >>> and pain now despite normal blood/urine tests except for low >>> potassium raised ammonia nad urea..this kidney disease >>> tubularinterstitial nephritis I was told is often found in Mito. >>> have any of you got this and how do you cope ??? >>> >>> We are also struggling to keep my autoimmune thyroid under > control >>> any advice?T4/T3/natural thyroid ? Had thyroid disease for 30 > years >>> now I also have rheumatoid factor on testing which GP thinks is > also >>> contributing to my problems and wonder what meds any of you take >>> with mito to alleviate the joints swelling and muscle stiffness > in >>> this condition which is running alongside my mito. >>> >>> The metabolic doc also found massive parietal antibody activity >>> which has inflamed all my stomach (endoscopy)and caused PA (B12 > def) >>> As a result of all this I have been told I have a mito.cyto not >>> myopathy with endocrinopathies autoimmune mediated with no > diabetes >>> in myself or family.or cardiomyopathy. they have coronary artery >>> disease >>> >>> Lots in fact most of what I have read does not 'fit' as most of > the >>> things listed at UMDF etc are not found in me it's almost as if > this >>> form of mito.cyto. is a seperate subset. I have high cholestral > and >>> the metabolic doc considered it okay to give me >>> avorstatin..simvastatin made me awfully weak...I know that they > find >>> fatty oxidation defects when the thyroid is not correctly > medicated >>> and there is lots of research on that . >>> >>> I am not interested nor is my family in genes etc...the metabolic >>> bloke here works on avoiding organ dysfunction and treating when >>> neccesary things caused by the mito. I think it's more holistic >>> >>> Oh well sorry this is so long and I have probably made it all > seem >>> muddled.I hope some of you with similar forms may have some >>> ideas/thoughts . >>> Thanks a lot..Gillian >>> >>> >>> >>> >>> >>> 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 September 19, 2004 Report Share Posted September 19, 2004 Gillian I must tell you that I love your name. It is one of my favorites. I was on a natural thyroid for the first several years, but have done better on the synthetic. My thyroid gland is completely non-functioning at this point. I used a scooter for around 10 years and now have a power wheelchair which I love. I can be so much more independent with these aids and more. It makes me feel good to be able to do most things myself. My reacher is my next most important item. laurie > > Reply-To: > Date: Sun, 19 Sep 2004 17:09:19 -0000 > To: > Subject: Re: First post here, > > -Thanks Laurie for your reply..CAH is Congenital Adrenal > Hyperplasia/Hypoplasia..Mine didn't start in any definite sort of > way..just after a gynae op 6 years ago when things seemed to drop to > bits .Lots of things i have read say the steroid paths are > affected in Mito. > I was hyper for years withe the thyroid but apparently the > antibodies have just about knocked it out now..great fun..I asked > about thyroid meds because sometimes my FT3 goes too low and my doc > tried me on tertroxin T3 supplementation as well as Eltroxin (sorry > UK ) then he read about natural thyroid and wondered if that would > be better in Mito. > When my eloctrolytes are on rare occasions nomal..wow do I feel > better but unfortunatly B12 and disc trouble have put me in a > wheelchair..thats lifei suppose > Gillian > > > > > > -- In , Laureta Fitzgerald > wrote: >> Gillian >> >> Welcome to posting. I am glad you are on the list. >> >> I have autoimmune thyroid disease which is separate from the mito. > I have >> taken thyroid meds (synthroid) for over 40 years. It has > maintained my >> levels in the normal range. I have arthritis and chronic > tendonitis. I take >> Bextra for this, along with Glucosomine Chondrotin. Mine is not > rheumatoid >> arthritis. >> >> I hope the doctor gets all your thyroid and electrolyte problems > taken care >> of first. These could be causing some of the other problems. >> >> I have known people with mito who have lots of the other problems > caused by >> mito without the neurological and muscular problems. I think this > is kind of >> rare, but does exist. Mine started out as mostly muscular and I > now have >> many organ systems involved. >> >> What is CAH? >> >> laurie >> >>> From: " gillianstumps " >>> Reply-To: >>> Date: Sun, 19 Sep 2004 15:28:45 -0000 >>> To: >>> Subject: First post here, >>> >>> Hi all, >>> I was diagnosed with a complex1+1v deficiency wwith cox neg > fibres >>> last year..no grey matter disease just symmetric lesions in the >>> centrum semi-ovale and an emg showing no myopathy, neuropathy or >>> PN..just unfortunatly a thoracic myleopathy possibly caused by > B12 >>> deficiency...my mum and I have tested neg on gene testing and the >>> neuro has said this is not a neuro. illness but metabolic disease >>> causing neuro.symptoms..I now see a metaboic consultant who he >>> referred me to and this doc. has other mito. patients. >>> I have been getting your digests for a long time now and posting > on >>> braintalk where Alice told me to ask my questions here...so here >>> goes.. >>> I have been reffered to a specialist endo clinic for CAH and > steroid >>> testing which conditions I was told by metabolic Doc are often > found >>> in mito. They already have evidence of steroid lack in me...has >>> anyone else been tested for this and if so did treatment help > you? >>> >>> I have kidney illness proven on MRA which is causing many > symptoms >>> and pain now despite normal blood/urine tests except for low >>> potassium raised ammonia nad urea..this kidney disease >>> tubularinterstitial nephritis I was told is often found in Mito. >>> have any of you got this and how do you cope ??? >>> >>> We are also struggling to keep my autoimmune thyroid under > control >>> any advice?T4/T3/natural thyroid ? Had thyroid disease for 30 > years >>> now I also have rheumatoid factor on testing which GP thinks is > also >>> contributing to my problems and wonder what meds any of you take >>> with mito to alleviate the joints swelling and muscle stiffness > in >>> this condition which is running alongside my mito. >>> >>> The metabolic doc also found massive parietal antibody activity >>> which has inflamed all my stomach (endoscopy)and caused PA (B12 > def) >>> As a result of all this I have been told I have a mito.cyto not >>> myopathy with endocrinopathies autoimmune mediated with no > diabetes >>> in myself or family.or cardiomyopathy. they have coronary artery >>> disease >>> >>> Lots in fact most of what I have read does not 'fit' as most of > the >>> things listed at UMDF etc are not found in me it's almost as if > this >>> form of mito.cyto. is a seperate subset. I have high cholestral > and >>> the metabolic doc considered it okay to give me >>> avorstatin..simvastatin made me awfully weak...I know that they > find >>> fatty oxidation defects when the thyroid is not correctly > medicated >>> and there is lots of research on that . >>> >>> I am not interested nor is my family in genes etc...the metabolic >>> bloke here works on avoiding organ dysfunction and treating when >>> neccesary things caused by the mito. I think it's more holistic >>> >>> Oh well sorry this is so long and I have probably made it all > seem >>> muddled.I hope some of you with similar forms may have some >>> ideas/thoughts . >>> Thanks a lot..Gillian >>> >>> >>> >>> >>> >>> 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 September 19, 2004 Report Share Posted September 19, 2004 Gillian I must tell you that I love your name. It is one of my favorites. I was on a natural thyroid for the first several years, but have done better on the synthetic. My thyroid gland is completely non-functioning at this point. I used a scooter for around 10 years and now have a power wheelchair which I love. I can be so much more independent with these aids and more. It makes me feel good to be able to do most things myself. My reacher is my next most important item. laurie > > Reply-To: > Date: Sun, 19 Sep 2004 17:09:19 -0000 > To: > Subject: Re: First post here, > > -Thanks Laurie for your reply..CAH is Congenital Adrenal > Hyperplasia/Hypoplasia..Mine didn't start in any definite sort of > way..just after a gynae op 6 years ago when things seemed to drop to > bits .Lots of things i have read say the steroid paths are > affected in Mito. > I was hyper for years withe the thyroid but apparently the > antibodies have just about knocked it out now..great fun..I asked > about thyroid meds because sometimes my FT3 goes too low and my doc > tried me on tertroxin T3 supplementation as well as Eltroxin (sorry > UK ) then he read about natural thyroid and wondered if that would > be better in Mito. > When my eloctrolytes are on rare occasions nomal..wow do I feel > better but unfortunatly B12 and disc trouble have put me in a > wheelchair..thats lifei suppose > Gillian > > > > > > -- In , Laureta Fitzgerald > wrote: >> Gillian >> >> Welcome to posting. I am glad you are on the list. >> >> I have autoimmune thyroid disease which is separate from the mito. > I have >> taken thyroid meds (synthroid) for over 40 years. It has > maintained my >> levels in the normal range. I have arthritis and chronic > tendonitis. I take >> Bextra for this, along with Glucosomine Chondrotin. Mine is not > rheumatoid >> arthritis. >> >> I hope the doctor gets all your thyroid and electrolyte problems > taken care >> of first. These could be causing some of the other problems. >> >> I have known people with mito who have lots of the other problems > caused by >> mito without the neurological and muscular problems. I think this > is kind of >> rare, but does exist. Mine started out as mostly muscular and I > now have >> many organ systems involved. >> >> What is CAH? >> >> laurie >> >>> From: " gillianstumps " >>> Reply-To: >>> Date: Sun, 19 Sep 2004 15:28:45 -0000 >>> To: >>> Subject: First post here, >>> >>> Hi all, >>> I was diagnosed with a complex1+1v deficiency wwith cox neg > fibres >>> last year..no grey matter disease just symmetric lesions in the >>> centrum semi-ovale and an emg showing no myopathy, neuropathy or >>> PN..just unfortunatly a thoracic myleopathy possibly caused by > B12 >>> deficiency...my mum and I have tested neg on gene testing and the >>> neuro has said this is not a neuro. illness but metabolic disease >>> causing neuro.symptoms..I now see a metaboic consultant who he >>> referred me to and this doc. has other mito. patients. >>> I have been getting your digests for a long time now and posting > on >>> braintalk where Alice told me to ask my questions here...so here >>> goes.. >>> I have been reffered to a specialist endo clinic for CAH and > steroid >>> testing which conditions I was told by metabolic Doc are often > found >>> in mito. They already have evidence of steroid lack in me...has >>> anyone else been tested for this and if so did treatment help > you? >>> >>> I have kidney illness proven on MRA which is causing many > symptoms >>> and pain now despite normal blood/urine tests except for low >>> potassium raised ammonia nad urea..this kidney disease >>> tubularinterstitial nephritis I was told is often found in Mito. >>> have any of you got this and how do you cope ??? >>> >>> We are also struggling to keep my autoimmune thyroid under > control >>> any advice?T4/T3/natural thyroid ? Had thyroid disease for 30 > years >>> now I also have rheumatoid factor on testing which GP thinks is > also >>> contributing to my problems and wonder what meds any of you take >>> with mito to alleviate the joints swelling and muscle stiffness > in >>> this condition which is running alongside my mito. >>> >>> The metabolic doc also found massive parietal antibody activity >>> which has inflamed all my stomach (endoscopy)and caused PA (B12 > def) >>> As a result of all this I have been told I have a mito.cyto not >>> myopathy with endocrinopathies autoimmune mediated with no > diabetes >>> in myself or family.or cardiomyopathy. they have coronary artery >>> disease >>> >>> Lots in fact most of what I have read does not 'fit' as most of > the >>> things listed at UMDF etc are not found in me it's almost as if > this >>> form of mito.cyto. is a seperate subset. I have high cholestral > and >>> the metabolic doc considered it okay to give me >>> avorstatin..simvastatin made me awfully weak...I know that they > find >>> fatty oxidation defects when the thyroid is not correctly > medicated >>> and there is lots of research on that . >>> >>> I am not interested nor is my family in genes etc...the metabolic >>> bloke here works on avoiding organ dysfunction and treating when >>> neccesary things caused by the mito. I think it's more holistic >>> >>> Oh well sorry this is so long and I have probably made it all > seem >>> muddled.I hope some of you with similar forms may have some >>> ideas/thoughts . >>> Thanks a lot..Gillian >>> >>> >>> >>> >>> >>> 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...
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