Endocrine Issues-Need help

[Guest guest]

lies (19), has been experiencing recent onset of endocrine related issues.

Prior to leaving for St. Louis she was evaluated by an endocrinologist who said,

" I'm not sure how to best treat her. What drugs cna be safely uses. Could you

please email some of the lists for adults with mito and get their advice? "

So, this is a first for me. A physician asking me to obtain advice from those of

you with the real life experience!!!

lies' lab work is showing a low free T4, elevated testosterone, elevated C

Peptide (indicitive of intermittent high and/or low blood sugars), increased

cholesterol on a 20 G/day low fat diet. increased LDH. She has marked physical

exam signs of high insulin production, ie insulin resistance and shakes with

droppign blood sugar.

The docs immediate recommendation was Metforman (I said now and Jean S.

supported my feelings with an appropriate literature article). They suggested a

low carb, high fat diet, I said no as this is in direct opposition to the

recommendations from both Dr. Whiteman and Dr. Cohen.

So, what types of treatments have you found to be helpful without causing

further mito related issues. Note: lies' lactate levels are in the 90's

with minimal activity and symptoms. Our hope is to improve her blood sugar

stability, lower her testerone level and improve her thyroid function.

Any ideas/suggestions would be appreciated.

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

Joanne,

I would not recommend Metaformin but your Mito doctor would have

better information on this subject which would be the best source of

information for you. I would suggest that you make contact and ask

the same questions to the Mito doc. Some Mito patients have no

problem with Metaformin. This goes to show how we are all different.

As for me, I found that Avandia was the most successful and compatable

with my medical condition but since it is not generic, my insurance

was not happy to pay for it. We switched to Glyburide and I did well

with it. As a sideline, I changed some dietary habits and started

Herbalife. The day I started it, my BS was normal and has been ever

since. My total cholesterol was 120 at the last testing with the LDL

at 52. The only thing that needs attention is my sluggish thyroid.

We just doubled the dose in the hopes that this will normalize the

thyroid readings.

Alice

[Guest guest]

Joanne,

I would not recommend Metaformin but your Mito doctor would have

better information on this subject which would be the best source of

information for you. I would suggest that you make contact and ask

the same questions to the Mito doc. Some Mito patients have no

problem with Metaformin. This goes to show how we are all different.

As for me, I found that Avandia was the most successful and compatable

with my medical condition but since it is not generic, my insurance

was not happy to pay for it. We switched to Glyburide and I did well

with it. As a sideline, I changed some dietary habits and started

Herbalife. The day I started it, my BS was normal and has been ever

since. My total cholesterol was 120 at the last testing with the LDL

at 52. The only thing that needs attention is my sluggish thyroid.

We just doubled the dose in the hopes that this will normalize the

thyroid readings.

Alice

[Guest guest]

-Joanne,

If lies thyroid is correctly medicaed by her Doctor it may be

that her cholestral levels improve as low thyroid has a potential to

affect that...as for the drug choice, natural or synthetic go with

whichever her Doctor recommends, it is always possible to change

over later...

Gillian

-- In , Joanne Kocourek

wrote:

> lies (19), has been experiencing recent onset of endocrine

related issues. Prior to leaving for St. Louis she was evaluated by

an endocrinologist who said, " I'm not sure how to best treat her.

What drugs cna be safely uses. Could you please email some of the

lists for adults with mito and get their advice? "

>

> So, this is a first for me. A physician asking me to obtain advice

from those of you with the real life experience!!!

>

> lies' lab work is showing a low free T4, elevated

testosterone, elevated C Peptide (indicitive of intermittent high

and/or low blood sugars), increased cholesterol on a 20 G/day low

fat diet. increased LDH. She has marked physical exam signs of high

insulin production, ie insulin resistance and shakes with droppign

blood sugar.

>

> The docs immediate recommendation was Metforman (I said now and

Jean S. supported my feelings with an appropriate literature

article). They suggested a low carb, high fat diet, I said no as

this is in direct opposition to the recommendations from both Dr.

Whiteman and Dr. Cohen.

>

> So, what types of treatments have you found to be helpful without

causing further mito related issues. Note: lies' lactate levels

are in the 90's with minimal activity and symptoms. Our hope is to

improve her blood sugar stability, lower her testerone level and

improve her thyroid function.

>

> Any ideas/suggestions would be appreciated.

>

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

>

>

[Guest guest]

-Joanne,

If lies thyroid is correctly medicaed by her Doctor it may be

that her cholestral levels improve as low thyroid has a potential to

affect that...as for the drug choice, natural or synthetic go with

whichever her Doctor recommends, it is always possible to change

over later...

Gillian

-- In , Joanne Kocourek

wrote:

> lies (19), has been experiencing recent onset of endocrine

related issues. Prior to leaving for St. Louis she was evaluated by

an endocrinologist who said, " I'm not sure how to best treat her.

What drugs cna be safely uses. Could you please email some of the

lists for adults with mito and get their advice? "

>

> So, this is a first for me. A physician asking me to obtain advice

from those of you with the real life experience!!!

>

> lies' lab work is showing a low free T4, elevated

testosterone, elevated C Peptide (indicitive of intermittent high

and/or low blood sugars), increased cholesterol on a 20 G/day low

fat diet. increased LDH. She has marked physical exam signs of high

insulin production, ie insulin resistance and shakes with droppign

blood sugar.

>

> The docs immediate recommendation was Metforman (I said now and

Jean S. supported my feelings with an appropriate literature

article). They suggested a low carb, high fat diet, I said no as

this is in direct opposition to the recommendations from both Dr.

Whiteman and Dr. Cohen.

>

> So, what types of treatments have you found to be helpful without

causing further mito related issues. Note: lies' lactate levels

are in the 90's with minimal activity and symptoms. Our hope is to

improve her blood sugar stability, lower her testerone level and

improve her thyroid function.

>

> Any ideas/suggestions would be appreciated.

>

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

>

>

[Guest guest]

I take insulin injections for my sugars followed with glucophage if they are

out of " whack " . I also take zocor for cholesterol (after trying several other

statins) and niacin. these are among other med's of no interest to you.

Vivian

[Guest guest]

Joanne

I take Essential Oils (fish oil, flaxseed oil and borage seed oil)

gelcaps. This has brought down and stabilized my cholesterol and

trycycerlides. It worked better for me than a statin, but of course we

are all different. I take alpha lopoic acid for stabilizing blood

sugars. I'm going to ask my doctor about adding cinnamon to further

stabilize the blood sugars.

laurie

> lies (19), has been experiencing recent onset of endocrine related issues.

Prior to leaving for St. Louis she was evaluated by an endocrinologist who said,

" I'm not sure how to best treat her. What drugs cna be safely uses. Could you

please email some of the lists for adults with mito and get their advice? "

>

> So, this is a first for me. A physician asking me to obtain advice from those

of you with the real life experience!!!

>

> lies' lab work is showing a low free T4, elevated testosterone, elevated C

Peptide (indicitive of intermittent high and/or low blood sugars), increased

cholesterol on a 20 G/day low fat diet. increased LDH. She has marked physical

exam signs of high insulin production, ie insulin resistance and shakes with

droppign blood sugar.

>

> The docs immediate recommendation was Metforman (I said now and Jean S.

supported my feelings with an appropriate literature article). They suggested a

low carb, high fat diet, I said no as this is in direct opposition to the

recommendations from both Dr. Whiteman and Dr. Cohen.

>

> So, what types of treatments have you found to be helpful without causing

further mito related issues. Note: lies' lactate levels are in the 90's

with minimal activity and symptoms. Our hope is to improve her blood sugar

stability, lower her testerone level and improve her thyroid function.

>

> Any ideas/suggestions would be appreciated.

>

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

>

>

[Guest guest]

Laurie,

What amount of cinammon is supposed to help with blood sugar and in what form?

Janet Sample

Re: Endocrine Issues-Need help

Joanne

I take Essential Oils (fish oil, flaxseed oil and borage seed oil)

gelcaps. This has brought down and stabilized my cholesterol and

trycycerlides. It worked better for me than a statin, but of course we

are all different. I take alpha lopoic acid for stabilizing blood

sugars. I'm going to ask my doctor about adding cinnamon to further

stabilize the blood sugars.

laurie

> lies (19), has been experiencing recent onset of endocrine related

issues. Prior to leaving for St. Louis she was evaluated by an endocrinologist

who said, " I'm not sure how to best treat her. What drugs cna be safely uses.

Could you please email some of the lists for adults with mito and get their

advice? "

>

> So, this is a first for me. A physician asking me to obtain advice from

those of you with the real life experience!!!

>

> lies' lab work is showing a low free T4, elevated testosterone, elevated

C Peptide (indicitive of intermittent high and/or low blood sugars), increased

cholesterol on a 20 G/day low fat diet. increased LDH. She has marked physical

exam signs of high insulin production, ie insulin resistance and shakes with

droppign blood sugar.

>

> The docs immediate recommendation was Metforman (I said now and Jean S.

supported my feelings with an appropriate literature article). They suggested a

low carb, high fat diet, I said no as this is in direct opposition to the

recommendations from both Dr. Whiteman and Dr. Cohen.

>

> So, what types of treatments have you found to be helpful without causing

further mito related issues. Note: lies' lactate levels are in the 90's

with minimal activity and symptoms. Our hope is to improve her blood sugar

stability, lower her testerone level and improve her thyroid function.

>

> Any ideas/suggestions would be appreciated.

>

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

>

>

[Guest guest]

Laurie,

What amount of cinammon is supposed to help with blood sugar and in what form?

Janet Sample

Re: Endocrine Issues-Need help

Joanne

I take Essential Oils (fish oil, flaxseed oil and borage seed oil)

gelcaps. This has brought down and stabilized my cholesterol and

trycycerlides. It worked better for me than a statin, but of course we

are all different. I take alpha lopoic acid for stabilizing blood

sugars. I'm going to ask my doctor about adding cinnamon to further

stabilize the blood sugars.

laurie

> lies (19), has been experiencing recent onset of endocrine related

issues. Prior to leaving for St. Louis she was evaluated by an endocrinologist

who said, " I'm not sure how to best treat her. What drugs cna be safely uses.

Could you please email some of the lists for adults with mito and get their

advice? "

>

> So, this is a first for me. A physician asking me to obtain advice from

those of you with the real life experience!!!

>

> lies' lab work is showing a low free T4, elevated testosterone, elevated

C Peptide (indicitive of intermittent high and/or low blood sugars), increased

cholesterol on a 20 G/day low fat diet. increased LDH. She has marked physical

exam signs of high insulin production, ie insulin resistance and shakes with

droppign blood sugar.

>

> The docs immediate recommendation was Metforman (I said now and Jean S.

supported my feelings with an appropriate literature article). They suggested a

low carb, high fat diet, I said no as this is in direct opposition to the

recommendations from both Dr. Whiteman and Dr. Cohen.

>

> So, what types of treatments have you found to be helpful without causing

further mito related issues. Note: lies' lactate levels are in the 90's

with minimal activity and symptoms. Our hope is to improve her blood sugar

stability, lower her testerone level and improve her thyroid function.

>

> Any ideas/suggestions would be appreciated.

>

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

>

>

[Guest guest]

Janet

I am going to ask about the cinnamon tablets that Puritan's Pride

makes. I'm not sure of the amount in them, but do know that too much

can be toxic. I plan to do some searching on this once rested up.

laurie

> Laurie,

>

> What amount of cinammon is supposed to help with blood sugar and in what form?

>

> Janet Sample

> Re: Endocrine Issues-Need help

>

>

> Joanne

>

> I take Essential Oils (fish oil, flaxseed oil and borage seed oil)

> gelcaps. This has brought down and stabilized my cholesterol and

> trycycerlides. It worked better for me than a statin, but of course we

> are all different. I take alpha lopoic acid for stabilizing blood

> sugars. I'm going to ask my doctor about adding cinnamon to further

> stabilize the blood sugars.

>

> laurie

>

>

> > lies (19), has been experiencing recent onset of endocrine related

issues. Prior to leaving for St. Louis she was evaluated by an endocrinologist

who said, " I'm not sure how to best treat her. What drugs cna be safely uses.

Could you please email some of the lists for adults with mito and get their

advice? "

> >

> > So, this is a first for me. A physician asking me to obtain advice from

those of you with the real life experience!!!

> >

> > lies' lab work is showing a low free T4, elevated testosterone,

elevated C Peptide (indicitive of intermittent high and/or low blood sugars),

increased cholesterol on a 20 G/day low fat diet. increased LDH. She has

marked physical exam signs of high insulin production, ie insulin resistance and

shakes with droppign blood sugar.

> >

> > The docs immediate recommendation was Metforman (I said now and Jean S.

supported my feelings with an appropriate literature article). They suggested a

low carb, high fat diet, I said no as this is in direct opposition to the

recommendations from both Dr. Whiteman and Dr. Cohen.

> >

> > So, what types of treatments have you found to be helpful without causing

further mito related issues. Note: lies' lactate levels are in the 90's

with minimal activity and symptoms. Our hope is to improve her blood sugar

stability, lower her testerone level and improve her thyroid function.

> >

> > Any ideas/suggestions would be appreciated.

> >

> >

> > Joanne Kocourek (mom to , lies, and )

> > visit us at: http://www.caringbridge.org/il/annakris

> >

> >

[Guest guest]

Janet

I am going to ask about the cinnamon tablets that Puritan's Pride

makes. I'm not sure of the amount in them, but do know that too much

can be toxic. I plan to do some searching on this once rested up.

laurie

> Laurie,

>

> What amount of cinammon is supposed to help with blood sugar and in what form?

>

> Janet Sample

> Re: Endocrine Issues-Need help

>

>

> Joanne

>

> I take Essential Oils (fish oil, flaxseed oil and borage seed oil)

> gelcaps. This has brought down and stabilized my cholesterol and

> trycycerlides. It worked better for me than a statin, but of course we

> are all different. I take alpha lopoic acid for stabilizing blood

> sugars. I'm going to ask my doctor about adding cinnamon to further

> stabilize the blood sugars.

>

> laurie

>

>

> > lies (19), has been experiencing recent onset of endocrine related

issues. Prior to leaving for St. Louis she was evaluated by an endocrinologist

who said, " I'm not sure how to best treat her. What drugs cna be safely uses.

Could you please email some of the lists for adults with mito and get their

advice? "

> >

> > So, this is a first for me. A physician asking me to obtain advice from

those of you with the real life experience!!!

> >

> > lies' lab work is showing a low free T4, elevated testosterone,

elevated C Peptide (indicitive of intermittent high and/or low blood sugars),

increased cholesterol on a 20 G/day low fat diet. increased LDH. She has

marked physical exam signs of high insulin production, ie insulin resistance and

shakes with droppign blood sugar.

> >

> > The docs immediate recommendation was Metforman (I said now and Jean S.

supported my feelings with an appropriate literature article). They suggested a

low carb, high fat diet, I said no as this is in direct opposition to the

recommendations from both Dr. Whiteman and Dr. Cohen.

> >

> > So, what types of treatments have you found to be helpful without causing

further mito related issues. Note: lies' lactate levels are in the 90's

with minimal activity and symptoms. Our hope is to improve her blood sugar

stability, lower her testerone level and improve her thyroid function.

> >

> > Any ideas/suggestions would be appreciated.

> >

> >

> > Joanne Kocourek (mom to , lies, and )

> > visit us at: http://www.caringbridge.org/il/annakris

> >

> >

[Guest guest]

Janet and Laurie,

I read a few years back that cinnamon stimulates the production of insulin.

This is great for diabetics, but not for people like me with

hyperinsulinism. I never took cinnamon tablets but had been putting lots and

lots of cinnamon on my oatmeal because I had seen some " generic " comments

that cinnamon was " good for stabilizing glucose. " Then I found out what it

really does and stopped using it. But, as I say, this effect should be good

for diabetics.

Barbara

_____

From: [mailto: ] On Behalf

Of Laurie Fitzgerald

Sent: Monday, June 20, 2005 10:11 PM

To:

Subject: Re: Endocrine Issues-Need help

Janet

I am going to ask about the cinnamon tablets that Puritan's Pride

makes. I'm not sure of the amount in them, but do know that too much

can be toxic. I plan to do some searching on this once rested up.

laurie

> Laurie,

>

> What amount of cinammon is supposed to help with blood sugar and in what

form?

>

> Janet Sample

> Re: Endocrine Issues-Need help

>

>

> Joanne

>

> I take Essential Oils (fish oil, flaxseed oil and borage seed oil)

> gelcaps. This has brought down and stabilized my cholesterol and

> trycycerlides. It worked better for me than a statin, but of course we

> are all different. I take alpha lopoic acid for stabilizing blood

> sugars. I'm going to ask my doctor about adding cinnamon to further

> stabilize the blood sugars.

>

> laurie

>

>

> > lies (19), has been experiencing recent onset of endocrine related

issues. Prior to leaving for St. Louis she was evaluated by an

endocrinologist who said, " I'm not sure how to best treat her. What drugs

cna be safely uses. Could you please email some of the lists for adults

with mito and get their advice? "

> >

> > So, this is a first for me. A physician asking me to obtain advice

from those of you with the real life experience!!!

> >

> > lies' lab work is showing a low free T4, elevated testosterone,

elevated C Peptide (indicitive of intermittent high and/or low blood

sugars), increased cholesterol on a 20 G/day low fat diet. increased LDH.

She has marked physical exam signs of high insulin production, ie insulin

resistance and shakes with droppign blood sugar.

> >

> > The docs immediate recommendation was Metforman (I said now and Jean

S. supported my feelings with an appropriate literature article). They

suggested a low carb, high fat diet, I said no as this is in direct

opposition to the recommendations from both Dr. Whiteman and Dr. Cohen.

> >

> > So, what types of treatments have you found to be helpful without

causing further mito related issues. Note: lies' lactate levels are in

the 90's with minimal activity and symptoms. Our hope is to improve her

blood sugar stability, lower her testerone level and improve her thyroid

function.

> >

> > Any ideas/suggestions would be appreciated.

> >

> >

> > Joanne Kocourek (mom to , lies, and )

> > visit us at: http://www.caringbridge.org/il/annakris

> >

> >

[Guest guest]

Janet and Laurie,

I read a few years back that cinnamon stimulates the production of insulin.

This is great for diabetics, but not for people like me with

hyperinsulinism. I never took cinnamon tablets but had been putting lots and

lots of cinnamon on my oatmeal because I had seen some " generic " comments

that cinnamon was " good for stabilizing glucose. " Then I found out what it

really does and stopped using it. But, as I say, this effect should be good

for diabetics.

Barbara

_____

From: [mailto: ] On Behalf

Of Laurie Fitzgerald

Sent: Monday, June 20, 2005 10:11 PM

To:

Subject: Re: Endocrine Issues-Need help

Janet

I am going to ask about the cinnamon tablets that Puritan's Pride

makes. I'm not sure of the amount in them, but do know that too much

can be toxic. I plan to do some searching on this once rested up.

laurie

> Laurie,

>

> What amount of cinammon is supposed to help with blood sugar and in what

form?

>

> Janet Sample

> Re: Endocrine Issues-Need help

>

>

> Joanne

>

> I take Essential Oils (fish oil, flaxseed oil and borage seed oil)

> gelcaps. This has brought down and stabilized my cholesterol and

> trycycerlides. It worked better for me than a statin, but of course we

> are all different. I take alpha lopoic acid for stabilizing blood

> sugars. I'm going to ask my doctor about adding cinnamon to further

> stabilize the blood sugars.

>

> laurie

>

>

> > lies (19), has been experiencing recent onset of endocrine related

issues. Prior to leaving for St. Louis she was evaluated by an

endocrinologist who said, " I'm not sure how to best treat her. What drugs

cna be safely uses. Could you please email some of the lists for adults

with mito and get their advice? "

> >

> > So, this is a first for me. A physician asking me to obtain advice

from those of you with the real life experience!!!

> >

> > lies' lab work is showing a low free T4, elevated testosterone,

elevated C Peptide (indicitive of intermittent high and/or low blood

sugars), increased cholesterol on a 20 G/day low fat diet. increased LDH.

She has marked physical exam signs of high insulin production, ie insulin

resistance and shakes with droppign blood sugar.

> >

> > The docs immediate recommendation was Metforman (I said now and Jean

S. supported my feelings with an appropriate literature article). They

suggested a low carb, high fat diet, I said no as this is in direct

opposition to the recommendations from both Dr. Whiteman and Dr. Cohen.

> >

> > So, what types of treatments have you found to be helpful without

causing further mito related issues. Note: lies' lactate levels are in

the 90's with minimal activity and symptoms. Our hope is to improve her

blood sugar stability, lower her testerone level and improve her thyroid

function.

> >

> > Any ideas/suggestions would be appreciated.

> >

> >

> > Joanne Kocourek (mom to , lies, and )

> > visit us at: http://www.caringbridge.org/il/annakris

> >

> >

[Guest guest]

Some of us have done well on high protein, high fat, low carb diets

(including myself), but it is REALLY difficult to predict if it will

help or hurt. My MDA neuro (who is a decent mito doc) told me not to

go on a high fat diet, but I had already noticed a lot of weakness

and fatigue when eating high carb meals, so I tried it. I have both

glucose intolerance ( " almost " diabetes) and hypoglycemic episodes - I

feel the diet helps me a lot (and it's pretty bad for me when I go

off it).

Could you go to an endocrinologist at a larger medical center, who

sees patients with other chronic illnesses in addition to

endocrinology issues?

I hope you find answers to your questions...

Take care,

RH

> lies (19), has been experiencing recent onset of endocrine

related issues. Prior to leaving for St. Louis she was evaluated by

an endocrinologist who said, " I'm not sure how to best treat her.

What drugs cna be safely uses. Could you please email some of the

lists for adults with mito and get their advice? "

>

> So, this is a first for me. A physician asking me to obtain advice

from those of you with the real life experience!!!

>

> lies' lab work is showing a low free T4, elevated testosterone,

elevated C Peptide (indicitive of intermittent high and/or low blood

sugars), increased cholesterol on a 20 G/day low fat diet. increased

LDH. She has marked physical exam signs of high insulin production,

ie insulin resistance and shakes with droppign blood sugar.

>

> The docs immediate recommendation was Metforman (I said now and

Jean S. supported my feelings with an appropriate literature

article). They suggested a low carb, high fat diet, I said no as

this is in direct opposition to the recommendations from both Dr.

Whiteman and Dr. Cohen.

>

> So, what types of treatments have you found to be helpful without

causing further mito related issues. Note: lies' lactate levels

are in the 90's with minimal activity and symptoms. Our hope is to

improve her blood sugar stability, lower her testerone level and

improve her thyroid function.

>

> Any ideas/suggestions would be appreciated.

>

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

>

>

[Guest guest]

Some of us have done well on high protein, high fat, low carb diets

(including myself), but it is REALLY difficult to predict if it will

help or hurt. My MDA neuro (who is a decent mito doc) told me not to

go on a high fat diet, but I had already noticed a lot of weakness

and fatigue when eating high carb meals, so I tried it. I have both

glucose intolerance ( " almost " diabetes) and hypoglycemic episodes - I

feel the diet helps me a lot (and it's pretty bad for me when I go

off it).

Could you go to an endocrinologist at a larger medical center, who

sees patients with other chronic illnesses in addition to

endocrinology issues?

I hope you find answers to your questions...

Take care,

RH

> lies (19), has been experiencing recent onset of endocrine

related issues. Prior to leaving for St. Louis she was evaluated by

an endocrinologist who said, " I'm not sure how to best treat her.

What drugs cna be safely uses. Could you please email some of the

lists for adults with mito and get their advice? "

>

> So, this is a first for me. A physician asking me to obtain advice

from those of you with the real life experience!!!

>

> lies' lab work is showing a low free T4, elevated testosterone,

elevated C Peptide (indicitive of intermittent high and/or low blood

sugars), increased cholesterol on a 20 G/day low fat diet. increased

LDH. She has marked physical exam signs of high insulin production,

ie insulin resistance and shakes with droppign blood sugar.

>

> The docs immediate recommendation was Metforman (I said now and

Jean S. supported my feelings with an appropriate literature

article). They suggested a low carb, high fat diet, I said no as

this is in direct opposition to the recommendations from both Dr.

Whiteman and Dr. Cohen.

>

> So, what types of treatments have you found to be helpful without

causing further mito related issues. Note: lies' lactate levels

are in the 90's with minimal activity and symptoms. Our hope is to

improve her blood sugar stability, lower her testerone level and

improve her thyroid function.

>

> Any ideas/suggestions would be appreciated.

>

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

>

>

[Guest guest]

Barbara,

you over produce insulin like my son, I remember we talked about it one

time...then he goes into high sugar levels then crashes out..

I know it is not diabetes but what are they calling your sugar problems??

just curious.

karen

[Guest guest]

Yes, , I remember an exchange we had about this. Crash is the word, for

sure. In my case Dr. Haas called it hyperinsulinemia with reactive

hypoglycemia. Yes, I do have high sugars with sugar load and spill glucose

in urine and my local endo said the insulin numbers are high enough to

indicate significant insulin resistance. Recently, I have gotten brave

enough to reduce complex carbohydrates and go more with high protein, low

fat, and I am definitely more stable. Big relief! Diet was always such a

puzzle for me because the CPT needed high carbs and the hyperinsulinemia

needed low carbs. Different docs gave me opposite advice. It was very

confusing.

Hope you and your family are doing okay.

Barbara

_____

From: [mailto: ] On Behalf

Of MitomomX3@...

Sent: Tuesday, June 21, 2005 1:37 PM

To:

Subject: Re: Endocrine Issues-Need help

Barbara,

you over produce insulin like my son, I remember we talked about it one

time...then he goes into high sugar levels then crashes out..

I know it is not diabetes but what are they calling your sugar problems??

just curious.

karen

[Guest guest]

I am glad you have " gotten brave " and had good results with the high

protein diet, it has been a big improvement for my condition. I do

high fat though, and haven't noticed a difference between high and

low fat in my case, although I have a suspected FOD (not severe

though if there).

I have " glucose intolerance " (not quite as bad as diabetes)

and " reactive hypoglycemia " (too much insulin after big meals, esp.

carbs).

Take care,

RH

> Yes, , I remember an exchange we had about this. Crash is the

word, for

> sure. In my case Dr. Haas called it hyperinsulinemia with reactive

> hypoglycemia. Yes, I do have high sugars with sugar load and spill

glucose

> in urine and my local endo said the insulin numbers are high enough

to

> indicate significant insulin resistance. Recently, I have gotten

brave

> enough to reduce complex carbohydrates and go more with high

protein, low

> fat, and I am definitely more stable. Big relief! Diet was always

such a

> puzzle for me because the CPT needed high carbs and the

hyperinsulinemia

> needed low carbs. Different docs gave me opposite advice. It was

very

> confusing.

>

>

>

> Hope you and your family are doing okay.

>

> Barbara

>

>

>

> _____

>

> From: [mailto: ]

On Behalf

> Of MitomomX3@a...

> Sent: Tuesday, June 21, 2005 1:37 PM

> To:

> Subject: Re: Endocrine Issues-Need help

>

>

>

> Barbara,

> you over produce insulin like my son, I remember we talked about

it one

> time...then he goes into high sugar levels then crashes out..

> I know it is not diabetes but what are they calling your sugar

problems??

> just curious.

> karen

>

>

>

[Guest guest]

Yeah, brave is not an exaggeration in this case! Reducing carb intake is a

known trigger for rhabdomyolysis in CPT def. Have they ever checked your

insulin during GTT? My insulin response is significantly moderated by

riboflavin. Off ribo it hits 650+, on ribo its around 250-300, still too

high, but better. Glucose curve improves on the upper end, but still bottoms

out at 30 something. I think this may be one reason why I'm so riboflavin

responsive, the improvement in insulin. Similar glucose response to

riboflavin has been reported in patients with Glutaric Aciduria.

B

_____

From: [mailto: ] On Behalf

Of ohgminion

Sent: Tuesday, June 21, 2005 4:23 PM

To:

Subject: Re: Endocrine Issues-Need help

I am glad you have " gotten brave " and had good results with the high

protein diet, it has been a big improvement for my condition. I do

high fat though, and haven't noticed a difference between high and

low fat in my case, although I have a suspected FOD (not severe

though if there).

I have " glucose intolerance " (not quite as bad as diabetes)

and " reactive hypoglycemia " (too much insulin after big meals, esp.

carbs).

Take care,

RH

> Yes, , I remember an exchange we had about this. Crash is the

word, for

> sure. In my case Dr. Haas called it hyperinsulinemia with reactive

> hypoglycemia. Yes, I do have high sugars with sugar load and spill

glucose

> in urine and my local endo said the insulin numbers are high enough

to

> indicate significant insulin resistance. Recently, I have gotten

brave

> enough to reduce complex carbohydrates and go more with high

protein, low

> fat, and I am definitely more stable. Big relief! Diet was always

such a

> puzzle for me because the CPT needed high carbs and the

hyperinsulinemia

> needed low carbs. Different docs gave me opposite advice. It was

very

> confusing.

>

>

>

> Hope you and your family are doing okay.

>

> Barbara

>

>

>

> _____

>

> From: [mailto: ]

On Behalf

> Of MitomomX3@a...

> Sent: Tuesday, June 21, 2005 1:37 PM

> To:

> Subject: Re: Endocrine Issues-Need help

>

>

>

> Barbara,

> you over produce insulin like my son, I remember we talked about

it one

> time...then he goes into high sugar levels then crashes out..

> I know it is not diabetes but what are they calling your sugar

problems??

> just curious.

> karen

>

>

>

[Guest guest]

I had a GTT, one value was high (almost 200, not as high as you, but

high), but the others were good. My fasting goes below 60, and I'm

sometimes near that after eating.

I went on a B-100 complex, but felt it didn't help, and made me edgy

(?). Haven't been to an endocrinologist in a while, not on my

priority list of doctors - just try to avoid simple carbs, limit

complex carbs, and take blood sugar when feeling low.

Take care,

RH

> > Yes, , I remember an exchange we had about this. Crash is

the

> word, for

> > sure. In my case Dr. Haas called it hyperinsulinemia with reactive

> > hypoglycemia. Yes, I do have high sugars with sugar load and

spill

> glucose

> > in urine and my local endo said the insulin numbers are high

enough

> to

> > indicate significant insulin resistance. Recently, I have gotten

> brave

> > enough to reduce complex carbohydrates and go more with high

> protein, low

> > fat, and I am definitely more stable. Big relief! Diet was always

> such a

> > puzzle for me because the CPT needed high carbs and the

> hyperinsulinemia

> > needed low carbs. Different docs gave me opposite advice. It was

> very

> > confusing.

> >

> >

> >

> > Hope you and your family are doing okay.

> >

> > Barbara

> >

> >

> >

> > _____

> >

> > From:

[mailto: ]

> On Behalf

> > Of MitomomX3@a...

> > Sent: Tuesday, June 21, 2005 1:37 PM

> > To:

> > Subject: Re: Endocrine Issues-Need help

> >

> >

> >

> > Barbara,

> > you over produce insulin like my son, I remember we talked about

> it one

> > time...then he goes into high sugar levels then crashes out..

> > I know it is not diabetes but what are they calling your sugar

> problems??

> > just curious.

> > karen

> >

> >

> >

[Guest guest]

I had a GTT, one value was high (almost 200, not as high as you, but

high), but the others were good. My fasting goes below 60, and I'm

sometimes near that after eating.

I went on a B-100 complex, but felt it didn't help, and made me edgy

(?). Haven't been to an endocrinologist in a while, not on my

priority list of doctors - just try to avoid simple carbs, limit

complex carbs, and take blood sugar when feeling low.

Take care,

RH

> > Yes, , I remember an exchange we had about this. Crash is

the

> word, for

> > sure. In my case Dr. Haas called it hyperinsulinemia with reactive

> > hypoglycemia. Yes, I do have high sugars with sugar load and

spill

> glucose

> > in urine and my local endo said the insulin numbers are high

enough

> to

> > indicate significant insulin resistance. Recently, I have gotten

> brave

> > enough to reduce complex carbohydrates and go more with high

> protein, low

> > fat, and I am definitely more stable. Big relief! Diet was always

> such a

> > puzzle for me because the CPT needed high carbs and the

> hyperinsulinemia

> > needed low carbs. Different docs gave me opposite advice. It was

> very

> > confusing.

> >

> >

> >

> > Hope you and your family are doing okay.

> >

> > Barbara

> >

> >

> >

> > _____

> >

> > From:

[mailto: ]

> On Behalf

> > Of MitomomX3@a...

> > Sent: Tuesday, June 21, 2005 1:37 PM

> > To:

> > Subject: Re: Endocrine Issues-Need help

> >

> >

> >

> > Barbara,

> > you over produce insulin like my son, I remember we talked about

> it one

> > time...then he goes into high sugar levels then crashes out..

> > I know it is not diabetes but what are they calling your sugar

> problems??

> > just curious.

> > karen

> >

> >

> >

[Guest guest]

Laurie,

No hurry, rest up. I know I need much rest after any type of travel. It will

be interesting to see what is a " safe " dose of cinammon.

Janet Sample

Re: Endocrine Issues-Need help

>

>

> Joanne

>

> I take Essential Oils (fish oil, flaxseed oil and borage seed oil)

> gelcaps. This has brought down and stabilized my cholesterol and

> trycycerlides. It worked better for me than a statin, but of course we

> are all different. I take alpha lopoic acid for stabilizing blood

> sugars. I'm going to ask my doctor about adding cinnamon to further

> stabilize the blood sugars.

>

> laurie

>

>

> > lies (19), has been experiencing recent onset of endocrine related

issues. Prior to leaving for St. Louis she was evaluated by an endocrinologist

who said, " I'm not sure how to best treat her. What drugs cna be safely uses.

Could you please email some of the lists for adults with mito and get their

advice? "

> >

> > So, this is a first for me. A physician asking me to obtain advice from

those of you with the real life experience!!!

> >

> > lies' lab work is showing a low free T4, elevated testosterone,

elevated C Peptide (indicitive of intermittent high and/or low blood sugars),

increased cholesterol on a 20 G/day low fat diet. increased LDH. She has

marked physical exam signs of high insulin production, ie insulin resistance and

shakes with droppign blood sugar.

> >

> > The docs immediate recommendation was Metforman (I said now and Jean S.

supported my feelings with an appropriate literature article). They suggested a

low carb, high fat diet, I said no as this is in direct opposition to the

recommendations from both Dr. Whiteman and Dr. Cohen.

> >

> > So, what types of treatments have you found to be helpful without

causing further mito related issues. Note: lies' lactate levels are in the

90's with minimal activity and symptoms. Our hope is to improve her blood sugar

stability, lower her testerone level and improve her thyroid function.

> >

> > Any ideas/suggestions would be appreciated.

> >

> >

> > Joanne Kocourek (mom to , lies, and )

> > visit us at: http://www.caringbridge.org/il/annakris

> >

> >

[Guest guest]

Thanks Barbara,

Maybe I should go back to putting lots of cinnamon on my applesauce and bananas

I eat.

Janet Sample

Re: Endocrine Issues-Need help

>

>

> Joanne

>

> I take Essential Oils (fish oil, flaxseed oil and borage seed oil)

> gelcaps. This has brought down and stabilized my cholesterol and

> trycycerlides. It worked better for me than a statin, but of course we

> are all different. I take alpha lopoic acid for stabilizing blood

> sugars. I'm going to ask my doctor about adding cinnamon to further

> stabilize the blood sugars.

>

> laurie

>

>

> > lies (19), has been experiencing recent onset of endocrine related

issues. Prior to leaving for St. Louis she was evaluated by an

endocrinologist who said, " I'm not sure how to best treat her. What drugs

cna be safely uses. Could you please email some of the lists for adults

with mito and get their advice? "

> >

> > So, this is a first for me. A physician asking me to obtain advice

from those of you with the real life experience!!!

> >

> > lies' lab work is showing a low free T4, elevated testosterone,

elevated C Peptide (indicitive of intermittent high and/or low blood

sugars), increased cholesterol on a 20 G/day low fat diet. increased LDH.

She has marked physical exam signs of high insulin production, ie insulin

resistance and shakes with droppign blood sugar.

> >

> > The docs immediate recommendation was Metforman (I said now and Jean

S. supported my feelings with an appropriate literature article). They

suggested a low carb, high fat diet, I said no as this is in direct

opposition to the recommendations from both Dr. Whiteman and Dr. Cohen.

> >

> > So, what types of treatments have you found to be helpful without

causing further mito related issues. Note: lies' lactate levels are in

the 90's with minimal activity and symptoms. Our hope is to improve her

blood sugar stability, lower her testerone level and improve her thyroid

function.

> >

> > Any ideas/suggestions would be appreciated.

> >

> >

> > Joanne Kocourek (mom to , lies, and )

> > visit us at: http://www.caringbridge.org/il/annakris

> >

> >

[Guest guest]

Thanks Barbara,

Maybe I should go back to putting lots of cinnamon on my applesauce and bananas

I eat.

Janet Sample

Re: Endocrine Issues-Need help

>

>

> Joanne

>

> I take Essential Oils (fish oil, flaxseed oil and borage seed oil)

> gelcaps. This has brought down and stabilized my cholesterol and

> trycycerlides. It worked better for me than a statin, but of course we

> are all different. I take alpha lopoic acid for stabilizing blood

> sugars. I'm going to ask my doctor about adding cinnamon to further

> stabilize the blood sugars.

>

> laurie

>

>

> > lies (19), has been experiencing recent onset of endocrine related

issues. Prior to leaving for St. Louis she was evaluated by an

endocrinologist who said, " I'm not sure how to best treat her. What drugs

cna be safely uses. Could you please email some of the lists for adults

with mito and get their advice? "

> >

> > So, this is a first for me. A physician asking me to obtain advice

from those of you with the real life experience!!!

> >

> > lies' lab work is showing a low free T4, elevated testosterone,

elevated C Peptide (indicitive of intermittent high and/or low blood

sugars), increased cholesterol on a 20 G/day low fat diet. increased LDH.

She has marked physical exam signs of high insulin production, ie insulin

resistance and shakes with droppign blood sugar.

> >

> > The docs immediate recommendation was Metforman (I said now and Jean

S. supported my feelings with an appropriate literature article). They

suggested a low carb, high fat diet, I said no as this is in direct

opposition to the recommendations from both Dr. Whiteman and Dr. Cohen.

> >

> > So, what types of treatments have you found to be helpful without

causing further mito related issues. Note: lies' lactate levels are in

the 90's with minimal activity and symptoms. Our hope is to improve her

blood sugar stability, lower her testerone level and improve her thyroid

function.

> >

> > Any ideas/suggestions would be appreciated.

> >

> >

> > Joanne Kocourek (mom to , lies, and )

> > visit us at: http://www.caringbridge.org/il/annakris

> >

> >