Re: First post here, for Laurie

[Guest guest]

Many people even without mito. react to missing thyroid meds within

a day or two...what do you call a higher dose than normal ? Thyroid

meds are usually individualised per patient...query as you take a

different amount every day have they done a full adrenal assessment

as they work in tandem with the thyroid...when mine goes haywire I

have to take hydrocortisone till I stabalise again.

I was given coq10 to try... during the 6 months I was on it my

thyroid went berserk, caused AF etc etc...once they discontinued it

with me my thyroid has settled down beautifully..it had a definite

interaction and we won't be going down that road again..I have never

felt so hyper in my life !!

I agree we are all so very different thank goodness or the

world would be an awfully boring place.

Gillian

-- In , Laureta Fitzgerald

wrote:

> Gillian

>

> I believe you have Muscular Dystrophy Clinics over there. I also

think they

> help some with wheelchairs or scooters. I have relatives in

England and my

> son and daughter in law went to Ireland for their honeymoon, so I

get pieces

> of info now and then.

>

> I have to take a much larger dose of thyroid med than is normal. I

also take

> a different amount every other day which is strange. I also react

to not

> having it within a day or two and it isn't suppose to be like that.

>

> I guess we are all " special " . Oh, to not be so special.

>

> laurie

>

> > From: " gillianstumps "

> > Reply-To:

> > Date: Mon, 20 Sep 2004 14:07:35 -0000

> > To:

> > Subject: Re: First post here,

> >

> > Power chairs..scooters LOL I am in the Uk !!!! I have a

lightweight

> > sports chair we had to buy ourselves !!!!... I keep reading and

> > seeing on our TV about how easy it is in the states to access

> > transport, buildings etc..wow are you the lucky people..I

suppose we

> > may catch up eventually...my problem is not muscles

> > walkingwise..it's damage to the tibial nerves..apparently very

> > amusing when I do move my body to my family...laughter the best

> > medicine.You will have to excuse my British sense of humour at

times.

> >

> > My thyroid swings about so much..and as there has been issues

with

> > the stability of synthetics my GP thought as most people say the

> > mitochondria don't like things and find them hard to process it

may

> > prefer the natural drugs..more akin to what our bodies should

> > make !!!less work to do .

> > I know that over here there is a big research project into

> > mitochondria in health and disease taking place over 3 years, our

> > govt. have done some of the funding for it. That is why I see

Docs

> > who are not neuro's but interested in the metabolics side of

> > it..They told us that they think most mito's will be nuclear

> > encoded...that was after they took a fresh muscle biopsy..then

> > checked a frozen piece and found MITO. The neuro's were rather

> > shocked..it was not expected !!!

> > I always did like being different.......

> > Gillian

> >

> >

> >

> >>>> 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.

> >>>>>

> >>>>>

> >>>>>

> >>>>>

[Guest guest]

Many people even without mito. react to missing thyroid meds within

a day or two...what do you call a higher dose than normal ? Thyroid

meds are usually individualised per patient...query as you take a

different amount every day have they done a full adrenal assessment

as they work in tandem with the thyroid...when mine goes haywire I

have to take hydrocortisone till I stabalise again.

I was given coq10 to try... during the 6 months I was on it my

thyroid went berserk, caused AF etc etc...once they discontinued it

with me my thyroid has settled down beautifully..it had a definite

interaction and we won't be going down that road again..I have never

felt so hyper in my life !!

I agree we are all so very different thank goodness or the

world would be an awfully boring place.

Gillian

-- In , Laureta Fitzgerald

wrote:

> Gillian

>

> I believe you have Muscular Dystrophy Clinics over there. I also

think they

> help some with wheelchairs or scooters. I have relatives in

England and my

> son and daughter in law went to Ireland for their honeymoon, so I

get pieces

> of info now and then.

>

> I have to take a much larger dose of thyroid med than is normal. I

also take

> a different amount every other day which is strange. I also react

to not

> having it within a day or two and it isn't suppose to be like that.

>

> I guess we are all " special " . Oh, to not be so special.

>

> laurie

>

> > From: " gillianstumps "

> > Reply-To:

> > Date: Mon, 20 Sep 2004 14:07:35 -0000

> > To:

> > Subject: Re: First post here,

> >

> > Power chairs..scooters LOL I am in the Uk !!!! I have a

lightweight

> > sports chair we had to buy ourselves !!!!... I keep reading and

> > seeing on our TV about how easy it is in the states to access

> > transport, buildings etc..wow are you the lucky people..I

suppose we

> > may catch up eventually...my problem is not muscles

> > walkingwise..it's damage to the tibial nerves..apparently very

> > amusing when I do move my body to my family...laughter the best

> > medicine.You will have to excuse my British sense of humour at

times.

> >

> > My thyroid swings about so much..and as there has been issues

with

> > the stability of synthetics my GP thought as most people say the

> > mitochondria don't like things and find them hard to process it

may

> > prefer the natural drugs..more akin to what our bodies should

> > make !!!less work to do .

> > I know that over here there is a big research project into

> > mitochondria in health and disease taking place over 3 years, our

> > govt. have done some of the funding for it. That is why I see

Docs

> > who are not neuro's but interested in the metabolics side of

> > it..They told us that they think most mito's will be nuclear

> > encoded...that was after they took a fresh muscle biopsy..then

> > checked a frozen piece and found MITO. The neuro's were rather

> > shocked..it was not expected !!!

> > I always did like being different.......

> > Gillian

> >

> >

> >

> >>>> 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.

> >>>>>

> >>>>>

> >>>>>

> >>>>>

[Guest guest]

Gillian

My thyroid disorder is Hashimotos which is autoimmune, so there has never

been any other endo workup other than for hyperparathyroidism. I have always

had to take a larger than normal dose which is probably due to the

inadequate metabolism. I take about twice what is normal for someone my age.

My needs have not fallen as I have aged, which is normal. I have been on

this alternating dose for the past 10 years with success. I do get my

values tested at least every 6 months to monitor it, along with my

electrolytes, ect.

laurie

>

> Reply-To:

> Date: Tue, 21 Sep 2004 09:39:06 -0000

> To:

> Subject: Re: First post here, for Laurie

>

>

> Many people even without mito. react to missing thyroid meds within

> a day or two...what do you call a higher dose than normal ? Thyroid

> meds are usually individualised per patient...query as you take a

> different amount every day have they done a full adrenal assessment

> as they work in tandem with the thyroid...when mine goes haywire I

> have to take hydrocortisone till I stabalise again.

> I was given coq10 to try... during the 6 months I was on it my

> thyroid went berserk, caused AF etc etc...once they discontinued it

> with me my thyroid has settled down beautifully..it had a definite

> interaction and we won't be going down that road again..I have never

> felt so hyper in my life !!

> I agree we are all so very different thank goodness or the

> world would be an awfully boring place.

>

> Gillian

>

>

>

> -- In , Laureta Fitzgerald

> wrote:

>> Gillian

>>

>> I believe you have Muscular Dystrophy Clinics over there. I also

> think they

>> help some with wheelchairs or scooters. I have relatives in

> England and my

>> son and daughter in law went to Ireland for their honeymoon, so I

> get pieces

>> of info now and then.

>>

>> I have to take a much larger dose of thyroid med than is normal. I

> also take

>> a different amount every other day which is strange. I also react

> to not

>> having it within a day or two and it isn't suppose to be like that.

>>

>> I guess we are all " special " . Oh, to not be so special.

>>

>> laurie

>>

>>> From: " gillianstumps "

>>> Reply-To:

>>> Date: Mon, 20 Sep 2004 14:07:35 -0000

>>> To:

>>> Subject: Re: First post here,

>>>

>>> Power chairs..scooters LOL I am in the Uk !!!! I have a

> lightweight

>>> sports chair we had to buy ourselves !!!!... I keep reading and

>>> seeing on our TV about how easy it is in the states to access

>>> transport, buildings etc..wow are you the lucky people..I

> suppose we

>>> may catch up eventually...my problem is not muscles

>>> walkingwise..it's damage to the tibial nerves..apparently very

>>> amusing when I do move my body to my family...laughter the best

>>> medicine.You will have to excuse my British sense of humour at

> times.

>>>

>>> My thyroid swings about so much..and as there has been issues

> with

>>> the stability of synthetics my GP thought as most people say the

>>> mitochondria don't like things and find them hard to process it

> may

>>> prefer the natural drugs..more akin to what our bodies should

>>> make !!!less work to do .

>>> I know that over here there is a big research project into

>>> mitochondria in health and disease taking place over 3 years, our

>>> govt. have done some of the funding for it. That is why I see

> Docs

>>> who are not neuro's but interested in the metabolics side of

>>> it..They told us that they think most mito's will be nuclear

>>> encoded...that was after they took a fresh muscle biopsy..then

>>> checked a frozen piece and found MITO. The neuro's were rather

>>> shocked..it was not expected !!!

>>> I always did like being different.......

>>> Gillian

>>>

>>>

>>>

>>>>>> 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.

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

[Guest guest]

Gillian

My thyroid disorder is Hashimotos which is autoimmune, so there has never

been any other endo workup other than for hyperparathyroidism. I have always

had to take a larger than normal dose which is probably due to the

inadequate metabolism. I take about twice what is normal for someone my age.

My needs have not fallen as I have aged, which is normal. I have been on

this alternating dose for the past 10 years with success. I do get my

values tested at least every 6 months to monitor it, along with my

electrolytes, ect.

laurie

>

> Reply-To:

> Date: Tue, 21 Sep 2004 09:39:06 -0000

> To:

> Subject: Re: First post here, for Laurie

>

>

> Many people even without mito. react to missing thyroid meds within

> a day or two...what do you call a higher dose than normal ? Thyroid

> meds are usually individualised per patient...query as you take a

> different amount every day have they done a full adrenal assessment

> as they work in tandem with the thyroid...when mine goes haywire I

> have to take hydrocortisone till I stabalise again.

> I was given coq10 to try... during the 6 months I was on it my

> thyroid went berserk, caused AF etc etc...once they discontinued it

> with me my thyroid has settled down beautifully..it had a definite

> interaction and we won't be going down that road again..I have never

> felt so hyper in my life !!

> I agree we are all so very different thank goodness or the

> world would be an awfully boring place.

>

> Gillian

>

>

>

> -- In , Laureta Fitzgerald

> wrote:

>> Gillian

>>

>> I believe you have Muscular Dystrophy Clinics over there. I also

> think they

>> help some with wheelchairs or scooters. I have relatives in

> England and my

>> son and daughter in law went to Ireland for their honeymoon, so I

> get pieces

>> of info now and then.

>>

>> I have to take a much larger dose of thyroid med than is normal. I

> also take

>> a different amount every other day which is strange. I also react

> to not

>> having it within a day or two and it isn't suppose to be like that.

>>

>> I guess we are all " special " . Oh, to not be so special.

>>

>> laurie

>>

>>> From: " gillianstumps "

>>> Reply-To:

>>> Date: Mon, 20 Sep 2004 14:07:35 -0000

>>> To:

>>> Subject: Re: First post here,

>>>

>>> Power chairs..scooters LOL I am in the Uk !!!! I have a

> lightweight

>>> sports chair we had to buy ourselves !!!!... I keep reading and

>>> seeing on our TV about how easy it is in the states to access

>>> transport, buildings etc..wow are you the lucky people..I

> suppose we

>>> may catch up eventually...my problem is not muscles

>>> walkingwise..it's damage to the tibial nerves..apparently very

>>> amusing when I do move my body to my family...laughter the best

>>> medicine.You will have to excuse my British sense of humour at

> times.

>>>

>>> My thyroid swings about so much..and as there has been issues

> with

>>> the stability of synthetics my GP thought as most people say the

>>> mitochondria don't like things and find them hard to process it

> may

>>> prefer the natural drugs..more akin to what our bodies should

>>> make !!!less work to do .

>>> I know that over here there is a big research project into

>>> mitochondria in health and disease taking place over 3 years, our

>>> govt. have done some of the funding for it. That is why I see

> Docs

>>> who are not neuro's but interested in the metabolics side of

>>> it..They told us that they think most mito's will be nuclear

>>> encoded...that was after they took a fresh muscle biopsy..then

>>> checked a frozen piece and found MITO. The neuro's were rather

>>> shocked..it was not expected !!!

>>> I always did like being different.......

>>> Gillian

>>>

>>>

>>>

>>>>>> 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.

>>>>>>>

>>>>>>>

>>>>>>>

>>>>>>>

[Guest guest]

-Hi Laurie,

This is where the difference of systems with our NHS kicks in...mine

is Hashi's as well..but I automatically was tested for

all other autoimmune antibodies as well..thats when other problems

showed up which were then followed through..its great that you are

having success with the way you take your meds...which really does

prove the point that meds must be indivualised.

Hashis has a nasty habit of being part /parcel of autoimmune

syndromes which have a classification of their own.Thats why I was

tested.

Gillian

-- In , Laureta Fitzgerald

wrote:

> Gillian

>

> My thyroid disorder is Hashimotos which is autoimmune, so there

has never

> been any other endo workup other than for hyperparathyroidism. I

have always

> had to take a larger than normal dose which is probably due to the

> inadequate metabolism. I take about twice what is normal for

someone my age.

> My needs have not fallen as I have aged, which is normal. I have

been on

> this alternating dose for the past 10 years with success. I do

get my

> values tested at least every 6 months to monitor it, along with my

> electrolytes, ect.

>

> laurie

>

> > From: " gillianstumps "

> > Reply-To:

> > Date: Tue, 21 Sep 2004 09:39:06 -0000

> > To:

> > Subject: Re: First post here, for Laurie

> >

> >

> > Many people even without mito. react to missing thyroid meds

within

> > a day or two...what do you call a higher dose than normal ?

Thyroid

> > meds are usually individualised per patient...query as you take a

> > different amount every day have they done a full adrenal

assessment

> > as they work in tandem with the thyroid...when mine goes haywire

I

> > have to take hydrocortisone till I stabalise again.

> > I was given coq10 to try... during the 6 months I was on it my

> > thyroid went berserk, caused AF etc etc...once they discontinued

it

> > with me my thyroid has settled down beautifully..it had a

definite

> > interaction and we won't be going down that road again..I have

never

> > felt so hyper in my life !!

> > I agree we are all so very different thank goodness or

the

> > world would be an awfully boring place.

> >

> > Gillian

> >

> >

> >

> > -- In , Laureta Fitzgerald

> > wrote:

> >> Gillian

> >>

> >> I believe you have Muscular Dystrophy Clinics over there. I also

> > think they

> >> help some with wheelchairs or scooters. I have relatives in

> > England and my

> >> son and daughter in law went to Ireland for their honeymoon, so

I

> > get pieces

> >> of info now and then.

> >>

> >> I have to take a much larger dose of thyroid med than is

normal. I

> > also take

> >> a different amount every other day which is strange. I also

react

> > to not

> >> having it within a day or two and it isn't suppose to be like

that.

> >>

> >> I guess we are all " special " . Oh, to not be so special.

> >>

> >> laurie

> >>

> >>> From: " gillianstumps "

> >>> Reply-To:

> >>> Date: Mon, 20 Sep 2004 14:07:35 -0000

> >>> To:

> >>> Subject: Re: First post here,

> >>>

> >>> Power chairs..scooters LOL I am in the Uk !!!! I have a

> > lightweight

> >>> sports chair we had to buy ourselves !!!!... I keep reading and

> >>> seeing on our TV about how easy it is in the states to access

> >>> transport, buildings etc..wow are you the lucky people..I

> > suppose we

> >>> may catch up eventually...my problem is not muscles

> >>> walkingwise..it's damage to the tibial nerves..apparently very

> >>> amusing when I do move my body to my family...laughter the best

> >>> medicine.You will have to excuse my British sense of humour at

> > times.

> >>>

> >>> My thyroid swings about so much..and as there has been issues

> > with

> >>> the stability of synthetics my GP thought as most people say

the

> >>> mitochondria don't like things and find them hard to process it

> > may

> >>> prefer the natural drugs..more akin to what our bodies should

> >>> make !!!less work to do .

> >>> I know that over here there is a big research project into

> >>> mitochondria in health and disease taking place over 3 years,

our

> >>> govt. have done some of the funding for it. That is why I see

> > Docs

> >>> who are not neuro's but interested in the metabolics side of

> >>> it..They told us that they think most mito's will be nuclear

> >>> encoded...that was after they took a fresh muscle biopsy..then

> >>> checked a frozen piece and found MITO. The neuro's were

rather

> >>> shocked..it was not expected !!!

> >>> I always did like being different.......

> >>> Gillian

> >>>

> >>>

> >>>

> >>>>>> 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.

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>

[Guest guest]

-Hi Laurie,

This is where the difference of systems with our NHS kicks in...mine

is Hashi's as well..but I automatically was tested for

all other autoimmune antibodies as well..thats when other problems

showed up which were then followed through..its great that you are

having success with the way you take your meds...which really does

prove the point that meds must be indivualised.

Hashis has a nasty habit of being part /parcel of autoimmune

syndromes which have a classification of their own.Thats why I was

tested.

Gillian

-- In , Laureta Fitzgerald

wrote:

> Gillian

>

> My thyroid disorder is Hashimotos which is autoimmune, so there

has never

> been any other endo workup other than for hyperparathyroidism. I

have always

> had to take a larger than normal dose which is probably due to the

> inadequate metabolism. I take about twice what is normal for

someone my age.

> My needs have not fallen as I have aged, which is normal. I have

been on

> this alternating dose for the past 10 years with success. I do

get my

> values tested at least every 6 months to monitor it, along with my

> electrolytes, ect.

>

> laurie

>

> > From: " gillianstumps "

> > Reply-To:

> > Date: Tue, 21 Sep 2004 09:39:06 -0000

> > To:

> > Subject: Re: First post here, for Laurie

> >

> >

> > Many people even without mito. react to missing thyroid meds

within

> > a day or two...what do you call a higher dose than normal ?

Thyroid

> > meds are usually individualised per patient...query as you take a

> > different amount every day have they done a full adrenal

assessment

> > as they work in tandem with the thyroid...when mine goes haywire

I

> > have to take hydrocortisone till I stabalise again.

> > I was given coq10 to try... during the 6 months I was on it my

> > thyroid went berserk, caused AF etc etc...once they discontinued

it

> > with me my thyroid has settled down beautifully..it had a

definite

> > interaction and we won't be going down that road again..I have

never

> > felt so hyper in my life !!

> > I agree we are all so very different thank goodness or

the

> > world would be an awfully boring place.

> >

> > Gillian

> >

> >

> >

> > -- In , Laureta Fitzgerald

> > wrote:

> >> Gillian

> >>

> >> I believe you have Muscular Dystrophy Clinics over there. I also

> > think they

> >> help some with wheelchairs or scooters. I have relatives in

> > England and my

> >> son and daughter in law went to Ireland for their honeymoon, so

I

> > get pieces

> >> of info now and then.

> >>

> >> I have to take a much larger dose of thyroid med than is

normal. I

> > also take

> >> a different amount every other day which is strange. I also

react

> > to not

> >> having it within a day or two and it isn't suppose to be like

that.

> >>

> >> I guess we are all " special " . Oh, to not be so special.

> >>

> >> laurie

> >>

> >>> From: " gillianstumps "

> >>> Reply-To:

> >>> Date: Mon, 20 Sep 2004 14:07:35 -0000

> >>> To:

> >>> Subject: Re: First post here,

> >>>

> >>> Power chairs..scooters LOL I am in the Uk !!!! I have a

> > lightweight

> >>> sports chair we had to buy ourselves !!!!... I keep reading and

> >>> seeing on our TV about how easy it is in the states to access

> >>> transport, buildings etc..wow are you the lucky people..I

> > suppose we

> >>> may catch up eventually...my problem is not muscles

> >>> walkingwise..it's damage to the tibial nerves..apparently very

> >>> amusing when I do move my body to my family...laughter the best

> >>> medicine.You will have to excuse my British sense of humour at

> > times.

> >>>

> >>> My thyroid swings about so much..and as there has been issues

> > with

> >>> the stability of synthetics my GP thought as most people say

the

> >>> mitochondria don't like things and find them hard to process it

> > may

> >>> prefer the natural drugs..more akin to what our bodies should

> >>> make !!!less work to do .

> >>> I know that over here there is a big research project into

> >>> mitochondria in health and disease taking place over 3 years,

our

> >>> govt. have done some of the funding for it. That is why I see

> > Docs

> >>> who are not neuro's but interested in the metabolics side of

> >>> it..They told us that they think most mito's will be nuclear

> >>> encoded...that was after they took a fresh muscle biopsy..then

> >>> checked a frozen piece and found MITO. The neuro's were

rather

> >>> shocked..it was not expected !!!

> >>> I always did like being different.......

> >>> Gillian

> >>>

> >>>

> >>>

> >>>>>> 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.

> >>>>>>>

> >>>>>>>

> >>>>>>>

> >>>>>>>