Re: Now What???!!!!Fear/Frustration/Failing Organs.... Sorry its a long one!

[Guest guest]

Oh AnneMarie,

you sound awful..big cuddles to you...I don't know much here but

has Endo. given adrenal support plus the Armour? I tried Armour and

found my body couldn't cope with the high proportion of T3 and had

to go back to thyroxine and cytomel as it could be more easily

controlled that way..Has he checked your FT3 that could be too high

and throwig yor body...It affects the liver etc.

Not diabetic or anything here and know nothing at all about it.....

Gillian

> Hi all,

> Happy Birthday to those having them this month! Those who are

ill,

> struggling and having surgery

> you and your families are in our prayers. I wish I knew more and

could

> help out so many of you who

> have helped me and my family understand this disease so that we

could

> get the proper care and find the

> right docs to help us. Your love, kindness, support and knowledge

is

> truly touching and I wish I could

> repay you all tenfold and yet don't know how!

> I have had such a rough year yet so many of you are struggling

with so

> much more than I am, I feel

> in awe of the strength and knowledge you all seem to have.

> I am again so confused and find myself turning to you all who help

so

> much when I get this way.

> So..... here I go again....

> In the last 6 months everything seems to be failing me and failing

> fast... ok... not everything but a lot has.

> It started with my thyroid about 5-6months ago, then my adrenal

glands,

> my progesterone production.... all at once.

> My labs had been really very normal for most of my life until

these last

> 6 months of medical nightmare.

> So the endo has me on .... armor thyroid( increased 3x already),

> progesterone cream to treat symptomatically.

> Within the last 2 months, my insulin levels all the sudden started

going

> haywire. The endo described it as - I am producing

> enough insulin but my pancreas is not " wasting it " properly so I

have

> " free insulin " in my system

> causing my blood sugars to get too high. So I started the

glucophage

> and have been very ill

> on it (nausea daily and vomiting several times a week) I finally

talked

> the doc into taking me off of it

> and when I stopped the med. they gave me a b/s meter and told me

to

> check it when I feel like I am having

> symptoms (I feel pretty crummy most of the time) , so the first

week i

> checked it very frequently to get an

> idea of when I seem to be having the most problems. But now im

off the

> glucophage, my b/s is really

> normal.... very bizarre to me??!!!!

> On top of all that.... like I really need more to deal with when

this is

> barely sinking in,

> My ammonia levels were too high so my PCP did a liver profile at

my

> request (he's not sure what to do for me

> so I have to tell him what I need once i figure things out)

> Most of the liver profile, I was in the normal range but the ALT

was

> really off range 20-65 and mine is 91

> So I spent the last week and 1/2 trying to get a hold of the PCP

and got

> the big " we will talk to the doc and

> call you back " .... UGH so when they didn't call back i just

kept

> calling and calling. So I do more research

> and find the ALT could mean kidney or liver failure or hepatitis.

> Finally today when I explained what I had found

> out, they said they weren't concerned about my results but to tell

the

> endo about it when I go next week in case

> the endo wanted to follow through. I am so frustrated feeling

like I

> have to be my own doctor when I know so

> little about this disease. I don't know what to do, what tests to

ask

> for now.. I am also so scared because it seems

> like my body systems are all shutting down so rapidly and nothing

seems

> to be helping..... I started the " cocktail "

> (CoQ, Carnitor, Bvits and lypoic acid, vit E and my regular

> multivitamin) this summer in hopes that things would

> improve and I feel so helpless in my battle to fight this

monster. I

> know how fatal this disease is when it gets out of

> control but I am trying to be positive and hopeful. Some days I

just

> want to scream and rant and rave... other days

> I hardly think about it and am happy just living for today, and

some

> days I just want to curl up in bed and cry and never

> get up again. I am so glad to have you all as I know you all go

through

> this too and so much more. My friends and

> family are pulling away (except a few) and I feel so lost and

alone so

> much of the time nowadays. I want to be so much stronger

> and know what tests I need, what meds will help and which ones are

> making me sicker, what will slow the progression

> or stop it. My son Joe is doing so well, I feel bad that I am

jealous

> of his success.... but I wouldn't have it any other

> way for him. UGH!!!!!

> So sorry this is a long one!

> And again..... thank you all so much, I wouldn't have made it this

far

> without you all!

> Hugs, prayers to all,

>

> <>AnnMarie L. - Complex IV

> Married to my best friend Rick, <>Mom of (15), (12),

> Cassandra (6) and

> Joe (4 1/2) - complex IV, lactic acidosis, CP, tethered chord

syndrome,

> dysautonomia, and<>

> a smile that never quits ?

>

>

>

[Guest guest]

Ann Marie, I'm sorry you're going through these tough times. I

don't know much about blood sugar issues, but I am hyper-thyroid.

It definately throws your whole body metabolism out of whack. My

liver enzymes get elevated if I'm in a metabolic crisis or if I have

an infection of some kind. They always return back to normal within

a few days and I'm suspecting that's the case with you as well. Is

it possible that you're becoming diabetic ? Sorry, I don't know

more about blood sugar but it's good you're staying on top of each

of these issues. Try not to get too upset and make yourself worse.

Have you tried getting outside every day ? It helps me a lot to

take a walk or even just sit outside for a bit. I'm sending you big

hugs and hope you feel better soon !

bug

[Guest guest]

Ann-Marie

I am sorry you having all these new problems and are scared (which is only

natural). I just have a couple of ideas from my own experience.

I can't remember if you are still able to walk or use a chair or what

-sorry! My blood sugar goes up when I have done too much physically. This is

backwards from " normal " people and hard for doctors to understand. When we

do too much physically or are stressed in other ways, we use up the energy

there and other things don't work as they should. Starting to use adaptive

equipment or using it more, might be helpful.

The ALT can be elevated with certain meds and some meds last a long time in

our bodies since we don't metabolize things the same as others.

It sounds like your endo is on the right track with his explanation of your

blood sugar as to what is happening. This is only a guess on my part.

Stay as positive as you can be. You are a strong, caring person and I'm sure

you will manage just fine with whatever you find coming your way. Remember

that it is natural to grief a loss of function. It seems we have to do this

almost constantly.

We are here for you and feel you can come to us whenever the need is there.

Just think, we can go to the group even in the middle of the night and there

may be someone on line where it is day. There aren't many people who can say

this. I'll keep you in my thoughts and prayers.

laurie

>

> Reply-To:

> Date: Sat, 23 Oct 2004 01:21:38 -0500

> To: Mito Mito >, Mitoldies >

> Subject: Now What???!!!!Fear/Frustration/Failing Organs.... Sorry

> its a long one!

>

> Hi all,

> Happy Birthday to those having them this month! Those who are ill,

> struggling and having surgery

> you and your families are in our prayers. I wish I knew more and could

> help out so many of you who

> have helped me and my family understand this disease so that we could

> get the proper care and find the

> right docs to help us. Your love, kindness, support and knowledge is

> truly touching and I wish I could

> repay you all tenfold and yet don't know how!

> I have had such a rough year yet so many of you are struggling with so

> much more than I am, I feel

> in awe of the strength and knowledge you all seem to have.

> I am again so confused and find myself turning to you all who help so

> much when I get this way.

> So..... here I go again....

> In the last 6 months everything seems to be failing me and failing

> fast... ok... not everything but a lot has.

> It started with my thyroid about 5-6months ago, then my adrenal glands,

> my progesterone production.... all at once.

> My labs had been really very normal for most of my life until these last

> 6 months of medical nightmare.

> So the endo has me on .... armor thyroid( increased 3x already),

> progesterone cream to treat symptomatically.

> Within the last 2 months, my insulin levels all the sudden started going

> haywire. The endo described it as - I am producing

> enough insulin but my pancreas is not " wasting it " properly so I have

> " free insulin " in my system

> causing my blood sugars to get too high. So I started the glucophage

> and have been very ill

> on it (nausea daily and vomiting several times a week) I finally talked

> the doc into taking me off of it

> and when I stopped the med. they gave me a b/s meter and told me to

> check it when I feel like I am having

> symptoms (I feel pretty crummy most of the time) , so the first week i

> checked it very frequently to get an

> idea of when I seem to be having the most problems. But now im off the

> glucophage, my b/s is really

> normal.... very bizarre to me??!!!!

> On top of all that.... like I really need more to deal with when this is

> barely sinking in,

> My ammonia levels were too high so my PCP did a liver profile at my

> request (he's not sure what to do for me

> so I have to tell him what I need once i figure things out)

> Most of the liver profile, I was in the normal range but the ALT was

> really off range 20-65 and mine is 91

> So I spent the last week and 1/2 trying to get a hold of the PCP and got

> the big " we will talk to the doc and

> call you back " .... UGH so when they didn't call back i just kept

> calling and calling. So I do more research

> and find the ALT could mean kidney or liver failure or hepatitis.

> Finally today when I explained what I had found

> out, they said they weren't concerned about my results but to tell the

> endo about it when I go next week in case

> the endo wanted to follow through. I am so frustrated feeling like I

> have to be my own doctor when I know so

> little about this disease. I don't know what to do, what tests to ask

> for now.. I am also so scared because it seems

> like my body systems are all shutting down so rapidly and nothing seems

> to be helping..... I started the " cocktail "

> (CoQ, Carnitor, Bvits and lypoic acid, vit E and my regular

> multivitamin) this summer in hopes that things would

> improve and I feel so helpless in my battle to fight this monster. I

> know how fatal this disease is when it gets out of

> control but I am trying to be positive and hopeful. Some days I just

> want to scream and rant and rave... other days

> I hardly think about it and am happy just living for today, and some

> days I just want to curl up in bed and cry and never

> get up again. I am so glad to have you all as I know you all go through

> this too and so much more. My friends and

> family are pulling away (except a few) and I feel so lost and alone so

> much of the time nowadays. I want to be so much stronger

> and know what tests I need, what meds will help and which ones are

> making me sicker, what will slow the progression

> or stop it. My son Joe is doing so well, I feel bad that I am jealous

> of his success.... but I wouldn't have it any other

> way for him. UGH!!!!!

> So sorry this is a long one!

> And again..... thank you all so much, I wouldn't have made it this far

> without you all!

> Hugs, prayers to all,

>

> <>AnnMarie L. - Complex IV

> Married to my best friend Rick, <>Mom of (15), (12),

> Cassandra (6) and

> Joe (4 1/2) - complex IV, lactic acidosis, CP, tethered chord syndrome,

> dysautonomia, and<>

> a smile that never quits ?

>

>

>

[Guest guest]

Hi Ann Marie,

I am so sorry that you have so many issues hitting you all at once. Don't be

sorry for sharing them here because this is probably the best way to deal with

it personally. Friends and family just don't want to talk medical talk

especially when they don't feel that they have any response. We may not have

response either but we know how you feel because we live with this too. Let me

take a few minutes to compare your issues with mine.

I'm not sure how long you've been off the Glucophage but it stays in your system

for about a week after you stop it. It doesn't just clear out right away. It's

a good idea to use that glucometer to watch what happens. If it starts to rise,

it's time to contact the endo. Keep in mind that it needs to do this for

several days and not just one or two but don't let it start sticking in the 200

range. When your blood sugar is off - it makes you feel terrible and very

tired, especially if it's too high. You might be able to take Avandia which had

no adverse affect on me. One thing about Avandia and Glucophage is that both of

these meds will not allow your sugar to go too low. Blood Sugar regulation is

sometimes very tricky and takes time. I am now on Glyburide - 0.3125 MG taken

once daily and boy did I ever have a time getting the proper dose of the proper

med for me. When I first took Glyburide last December, it caused my sugar to

drop dangerously low but the dose was way too high for me and we discontinued it

immediately. At this time, I was only seeing my PCP for my BS issues. I went

on Avandia which was ok but since I have a prescription cap, I was soon paying

full price for it. In an effort to go with a med that was generic, we switched

to Glucophage. I experienced extreme fatigue in about 10 days and generally

felt very ill. The endocrinologist was contacted and she immediately took me off

the Glucophage and said to take my Glyburide and cut it into 1/8 of what I was

originally prescribed. In 1/2 hour, my sugar dipped to 66 and I began to feel

that cold clammy feeling that I knew was due to a rapid sugar drop. The

endocrinologist was contacted and she called in a new prescription for Glyburide

which was 1/2 the dose of the original and I was to cut this pill into quarters

and take one quarter a day. It has worked. Now my sugar readings are quite

good. To give an example - my fasting sugar when I got up today was 99. This

is well within the normal range of 90-120 which is where we are trying to keep

it most of the time. I've seen a couple of spikes to the 160 range after carbs

but they drop back to normal within a fairly short time. Keep in mind that when

you take your readings, it should be 2 hours after your meal and first thing

when you get up. They usually recommend 4 times a day. Very important - I no

longer take any Alpha Lipoic Acid. I made this decision when I started back on

the Glyburide. The reason for this is that taking it with sugar meds causes too

much fluctuation but taking it without the meds does not keep it within a good

range. Diet also plays a roll. Carbs need to be watched but not totally

eliminated. Complex carbs are best for us. Protein is important but it's very

necessary to keep the fats down so proteins need to be managed too. A balanced

diet is the best and going without food is not good either. A person dealing

with sugar issues should really eat 6 small meals a day rather than 3 large

meals as it keeps your metabolism working steadily.

Thyroid too plays heavily on how we feel. This too has been a trial and error

issue for me which we have just recently managed. The endocrinologist cut the

dose of Levothyroid in half and this has made quite a difference. Right now - I

take .025mg daily and I was taking double that which caused Migraines. I have

blood work done every other month to watch this but my last reading was a

considerable drop from the one previously done. Having your Thyroid meds

working properly is a very important element in how you feel and how your body

functions.

I think you are on the right track and just need to make appointments to talk to

the doctor rather than call to get answers. This is a squeaky wheel effect but

if you just advocate and as badly as you feel, keep going back, you might just

notice some improvements. I rarely get my answers from a phone call to the

doctor's office. When you are a paying customer, you get better results.

Be sure your doctor is aware of how much of the supplements you are taking. I

discovered on my own that taking the Alpha Lipoic Acid was causing me to feel

ill as it was adding to the sudden changes in my blood sugar. When I stopped

it, I started to feel better. Even though it's recommended with the Mito

cocktail, it might not be something that will help you. Everything is trial

and error.

Good Luck, Ann Marie. I understand your frustration and hope this message has

made some sense to you. We all want you to feel better so you may see a lot of

answers to your post and you'll need to sort out those answers along with

everything else but most importantly for you I believe is pushing for

appointments as calling doesn't seem to be your answer.

Alice

[Guest guest]

Ann-Marie, Wish I could do more than offer some sympathy. Medically,

all I can say is that my liver enzymes do elevate periodically but

normalize eventually. My SGOT has been over 900. We don't understand

exactly what is causing this, but it does correlate with increased

symptoms.

I do understand a little about how you feel when things suddenly

spiral down. This happened to me Nov 2002 and ever since I have been

in a totally different landscape. Toto, we're not in Kansas anymore.

All kinds of new, puzzling problems popping up. The pattern I had

been used to is gone. I am still trying to figure out where I am,

what the patterns mean and what to do when various things happen.

It's challenging. I DO hope things settle down for you. It sounds

like your doctors are really trying to help and that is good. Keep

us posted.

Take care,

Barbara

> Hi all,

> Happy Birthday to those having them this month! Those who are

ill,

> struggling and having surgery

> you and your families are in our prayers. I wish I knew more and

could

> help out so many of you who

> have helped me and my family understand this disease so that we

could

> get the proper care and find the

> right docs to help us. Your love, kindness, support and knowledge

is

> truly touching and I wish I could

> repay you all tenfold and yet don't know how!

> I have had such a rough year yet so many of you are struggling

with so

> much more than I am, I feel

> in awe of the strength and knowledge you all seem to have.

> I am again so confused and find myself turning to you all who help

so

> much when I get this way.

> So..... here I go again....

> In the last 6 months everything seems to be failing me and failing

> fast... ok... not everything but a lot has.

> It started with my thyroid about 5-6months ago, then my adrenal

glands,

> my progesterone production.... all at once.

> My labs had been really very normal for most of my life until

these last

> 6 months of medical nightmare.

> So the endo has me on .... armor thyroid( increased 3x already),

> progesterone cream to treat symptomatically.

> Within the last 2 months, my insulin levels all the sudden started

going

> haywire. The endo described it as - I am producing

> enough insulin but my pancreas is not " wasting it " properly so I

have

> " free insulin " in my system

> causing my blood sugars to get too high. So I started the

glucophage

> and have been very ill

> on it (nausea daily and vomiting several times a week) I finally

talked

> the doc into taking me off of it

> and when I stopped the med. they gave me a b/s meter and told me

to

> check it when I feel like I am having

> symptoms (I feel pretty crummy most of the time) , so the first

week i

> checked it very frequently to get an

> idea of when I seem to be having the most problems. But now im

off the

> glucophage, my b/s is really

> normal.... very bizarre to me??!!!!

> On top of all that.... like I really need more to deal with when

this is

> barely sinking in,

> My ammonia levels were too high so my PCP did a liver profile at

my

> request (he's not sure what to do for me

> so I have to tell him what I need once i figure things out)

> Most of the liver profile, I was in the normal range but the ALT

was

> really off range 20-65 and mine is 91

> So I spent the last week and 1/2 trying to get a hold of the PCP

and got

> the big " we will talk to the doc and

> call you back " .... UGH so when they didn't call back i just

kept

> calling and calling. So I do more research

> and find the ALT could mean kidney or liver failure or hepatitis.

> Finally today when I explained what I had found

> out, they said they weren't concerned about my results but to tell

the

> endo about it when I go next week in case

> the endo wanted to follow through. I am so frustrated feeling

like I

> have to be my own doctor when I know so

> little about this disease. I don't know what to do, what tests to

ask

> for now.. I am also so scared because it seems

> like my body systems are all shutting down so rapidly and nothing

seems

> to be helping..... I started the " cocktail "

> (CoQ, Carnitor, Bvits and lypoic acid, vit E and my regular

> multivitamin) this summer in hopes that things would

> improve and I feel so helpless in my battle to fight this

monster. I

> know how fatal this disease is when it gets out of

> control but I am trying to be positive and hopeful. Some days I

just

> want to scream and rant and rave... other days

> I hardly think about it and am happy just living for today, and

some

> days I just want to curl up in bed and cry and never

> get up again. I am so glad to have you all as I know you all go

through

> this too and so much more. My friends and

> family are pulling away (except a few) and I feel so lost and

alone so

> much of the time nowadays. I want to be so much stronger

> and know what tests I need, what meds will help and which ones are

> making me sicker, what will slow the progression

> or stop it. My son Joe is doing so well, I feel bad that I am

jealous

> of his success.... but I wouldn't have it any other

> way for him. UGH!!!!!

> So sorry this is a long one!

> And again..... thank you all so much, I wouldn't have made it this

far

> without you all!

> Hugs, prayers to all,

>

> <>AnnMarie L. - Complex IV

> Married to my best friend Rick, <>Mom of (15), (12),

> Cassandra (6) and

> Joe (4 1/2) - complex IV, lactic acidosis, CP, tethered chord

syndrome,

> dysautonomia, and<>

> a smile that never quits ?

>

>

>

[Guest guest]

Ann-Marie,

I don't know what to suggest other than what Alice already mentioned

about stopping the Alpha Lapoic Acid to hopefully help with your blood

sugar levels.

Did you start things on the mito cocktail one at a time slowly and then

increase over a week or two period of time? I find my body handles

things better that way as we metabolize things in an odd way compared to

non-mito folks. Have you changed dose or brand of any of the cocktail

before you started feeling so poorly?

Hugs to you!

AM L wrote:

>Hi all,

>Happy Birthday to those having them this month! Those who are ill,

>struggling and having surgery

>you and your families are in our prayers. I wish I knew more and could

>help out so many of you who

>have helped me and my family understand this disease so that we could

>get the proper care and find the

>right docs to help us. Your love, kindness, support and knowledge is

>truly touching and I wish I could

>repay you all tenfold and yet don't know how!

>I have had such a rough year yet so many of you are struggling with so

>much more than I am, I feel

>in awe of the strength and knowledge you all seem to have.

>I am again so confused and find myself turning to you all who help so

>much when I get this way.

>So..... here I go again....

>In the last 6 months everything seems to be failing me and failing

>fast... ok... not everything but a lot has.

>It started with my thyroid about 5-6months ago, then my adrenal glands,

>my progesterone production.... all at once.

>My labs had been really very normal for most of my life until these last

>6 months of medical nightmare.

>So the endo has me on .... armor thyroid( increased 3x already),

>progesterone cream to treat symptomatically.

>Within the last 2 months, my insulin levels all the sudden started going

>haywire. The endo described it as - I am producing

>enough insulin but my pancreas is not " wasting it " properly so I have

> " free insulin " in my system

>causing my blood sugars to get too high. So I started the glucophage

>and have been very ill

>on it (nausea daily and vomiting several times a week) I finally talked

>the doc into taking me off of it

>and when I stopped the med. they gave me a b/s meter and told me to

>check it when I feel like I am having

>symptoms (I feel pretty crummy most of the time) , so the first week i

>checked it very frequently to get an

>idea of when I seem to be having the most problems. But now im off the

>glucophage, my b/s is really

>normal.... very bizarre to me??!!!!

>On top of all that.... like I really need more to deal with when this is

>barely sinking in,

>My ammonia levels were too high so my PCP did a liver profile at my

>request (he's not sure what to do for me

>so I have to tell him what I need once i figure things out)

>Most of the liver profile, I was in the normal range but the ALT was

>really off range 20-65 and mine is 91

>So I spent the last week and 1/2 trying to get a hold of the PCP and got

>the big " we will talk to the doc and

>call you back " .... UGH so when they didn't call back i just kept

>calling and calling. So I do more research

>and find the ALT could mean kidney or liver failure or hepatitis.

>Finally today when I explained what I had found

>out, they said they weren't concerned about my results but to tell the

>endo about it when I go next week in case

>the endo wanted to follow through. I am so frustrated feeling like I

>have to be my own doctor when I know so

>little about this disease. I don't know what to do, what tests to ask

>for now.. I am also so scared because it seems

>like my body systems are all shutting down so rapidly and nothing seems

>to be helping..... I started the " cocktail "

>(CoQ, Carnitor, Bvits and lypoic acid, vit E and my regular

>multivitamin) this summer in hopes that things would

>improve and I feel so helpless in my battle to fight this monster. I

>know how fatal this disease is when it gets out of

>control but I am trying to be positive and hopeful. Some days I just

>want to scream and rant and rave... other days

>I hardly think about it and am happy just living for today, and some

>days I just want to curl up in bed and cry and never

>get up again. I am so glad to have you all as I know you all go through

>this too and so much more. My friends and

>family are pulling away (except a few) and I feel so lost and alone so

>much of the time nowadays. I want to be so much stronger

>and know what tests I need, what meds will help and which ones are

>making me sicker, what will slow the progression

>or stop it. My son Joe is doing so well, I feel bad that I am jealous

>of his success.... but I wouldn't have it any other

>way for him. UGH!!!!!

>So sorry this is a long one!

>And again..... thank you all so much, I wouldn't have made it this far

>without you all!

>Hugs, prayers to all,

>

><>AnnMarie L. - Complex IV

>Married to my best friend Rick, <>Mom of (15), (12),

>Cassandra (6) and

>Joe (4 1/2) - complex IV, lactic acidosis, CP, tethered chord syndrome,

>dysautonomia, and<>

>a smile that never quits ?

>

>

>

[Guest guest]

---Ann Marie, My heart goes out to you. Tears well up in my eyes for

I can feel your emotional pain. I am sorry to hear of all of these

medical things going on at once..that must be hard and scarey. It

must be so hard to care for 4 children when you are feeling so

lousey and are sleeping so much.

I am sorry that you feel so lonely right now and somewhat abandonned

by people in your life. This is such a hard road to travel. I will

say a prayer for you as soon as I am done writing this. If I wait I

will forget!!! I will prayer that you are feeling better soon and

medicals issues become more controlled. Most of all I will pray that

the whole in your heart will become filled with joy and love once

again. God Bless You Ann Marie!!!

Dawn A

In , AM L wrote:

> Hi all,

> Happy Birthday to those having them this month! Those who are

ill,

> struggling and having surgery

> you and your families are in our prayers. I wish I knew more and

could

> help out so many of you who

> have helped me and my family understand this disease so that we

could

> get the proper care and find the

> right docs to help us. Your love, kindness, support and knowledge

is

> truly touching and I wish I could

> repay you all tenfold and yet don't know how!

> I have had such a rough year yet so many of you are struggling

with so

> much more than I am, I feel

> in awe of the strength and knowledge you all seem to have.

> I am again so confused and find myself turning to you all who help

so

> much when I get this way.

> So..... here I go again....

> In the last 6 months everything seems to be failing me and failing

> fast... ok... not everything but a lot has.

> It started with my thyroid about 5-6months ago, then my adrenal

glands,

> my progesterone production.... all at once.

> My labs had been really very normal for most of my life until

these last

> 6 months of medical nightmare.

> So the endo has me on .... armor thyroid( increased 3x already),

> progesterone cream to treat symptomatically.

> Within the last 2 months, my insulin levels all the sudden started

going

> haywire. The endo described it as - I am producing

> enough insulin but my pancreas is not " wasting it " properly so I

have

> " free insulin " in my system

> causing my blood sugars to get too high. So I started the

glucophage

> and have been very ill

> on it (nausea daily and vomiting several times a week) I finally

talked

> the doc into taking me off of it

> and when I stopped the med. they gave me a b/s meter and told me

to

> check it when I feel like I am having

> symptoms (I feel pretty crummy most of the time) , so the first

week i

> checked it very frequently to get an

> idea of when I seem to be having the most problems. But now im

off the

> glucophage, my b/s is really

> normal.... very bizarre to me??!!!!

> On top of all that.... like I really need more to deal with when

this is

> barely sinking in,

> My ammonia levels were too high so my PCP did a liver profile at

my

> request (he's not sure what to do for me

> so I have to tell him what I need once i figure things out)

> Most of the liver profile, I was in the normal range but the ALT

was

> really off range 20-65 and mine is 91

> So I spent the last week and 1/2 trying to get a hold of the PCP

and got

> the big " we will talk to the doc and

> call you back " .... UGH so when they didn't call back i just

kept

> calling and calling. So I do more research

> and find the ALT could mean kidney or liver failure or hepatitis.

> Finally today when I explained what I had found

> out, they said they weren't concerned about my results but to tell

the

> endo about it when I go next week in case

> the endo wanted to follow through. I am so frustrated feeling

like I

> have to be my own doctor when I know so

> little about this disease. I don't know what to do, what tests to

ask

> for now.. I am also so scared because it seems

> like my body systems are all shutting down so rapidly and nothing

seems

> to be helping..... I started the " cocktail "

> (CoQ, Carnitor, Bvits and lypoic acid, vit E and my regular

> multivitamin) this summer in hopes that things would

> improve and I feel so helpless in my battle to fight this

monster. I

> know how fatal this disease is when it gets out of

> control but I am trying to be positive and hopeful. Some days I

just

> want to scream and rant and rave... other days

> I hardly think about it and am happy just living for today, and

some

> days I just want to curl up in bed and cry and never

> get up again. I am so glad to have you all as I know you all go

through

> this too and so much more. My friends and

> family are pulling away (except a few) and I feel so lost and

alone so

> much of the time nowadays. I want to be so much stronger

> and know what tests I need, what meds will help and which ones are

> making me sicker, what will slow the progression

> or stop it. My son Joe is doing so well, I feel bad that I am

jealous

> of his success.... but I wouldn't have it any other

> way for him. UGH!!!!!

> So sorry this is a long one!

> And again..... thank you all so much, I wouldn't have made it this

far

> without you all!

> Hugs, prayers to all,

>

> <>AnnMarie L. - Complex IV

> Married to my best friend Rick, <>Mom of (15), (12),

> Cassandra (6) and

> Joe (4 1/2) - complex IV, lactic acidosis, CP, tethered chord

syndrome,

> dysautonomia, and<>

> a smile that never quits ?

>

>

>

[Guest guest]

Are you on lactulose for the ammonia levels? I am on it (Kristalose

actually, a powder, much better than the syrup) and an antibiotic for

high ammonia.

Ask me on list or email me privately if you want to discuss the

ammonia issue further. I didn't know how bad a fog I was in until I

came out of it due to the new meds (although I'm waiting for new

ammonia blood test results, we'll see).

My almost 4 year old is the only one of my three kids showing signs

of mito, his middle name is ph...

Take care,

RH

> Hi all,

> Happy Birthday to those having them this month! Those who are ill,

> struggling and having surgery

> you and your families are in our prayers. I wish I knew more and

could

> help out so many of you who

> have helped me and my family understand this disease so that we

could

> get the proper care and find the

> right docs to help us. Your love, kindness, support and knowledge

is

> truly touching and I wish I could

> repay you all tenfold and yet don't know how!

> I have had such a rough year yet so many of you are struggling with

so

> much more than I am, I feel

> in awe of the strength and knowledge you all seem to have.

> I am again so confused and find myself turning to you all who help

so

> much when I get this way.

> So..... here I go again....

> In the last 6 months everything seems to be failing me and failing

> fast... ok... not everything but a lot has.

> It started with my thyroid about 5-6months ago, then my adrenal

glands,

> my progesterone production.... all at once.

> My labs had been really very normal for most of my life until these

last

> 6 months of medical nightmare.

> So the endo has me on .... armor thyroid( increased 3x already),

> progesterone cream to treat symptomatically.

> Within the last 2 months, my insulin levels all the sudden started

going

> haywire. The endo described it as - I am producing

> enough insulin but my pancreas is not " wasting it " properly so I

have

> " free insulin " in my system

> causing my blood sugars to get too high. So I started the

glucophage

> and have been very ill

> on it (nausea daily and vomiting several times a week) I finally

talked

> the doc into taking me off of it

> and when I stopped the med. they gave me a b/s meter and told me to

> check it when I feel like I am having

> symptoms (I feel pretty crummy most of the time) , so the first

week i

> checked it very frequently to get an

> idea of when I seem to be having the most problems. But now im off

the

> glucophage, my b/s is really

> normal.... very bizarre to me??!!!!

> On top of all that.... like I really need more to deal with when

this is

> barely sinking in,

> My ammonia levels were too high so my PCP did a liver profile at my

> request (he's not sure what to do for me

> so I have to tell him what I need once i figure things out)

> Most of the liver profile, I was in the normal range but the ALT

was

> really off range 20-65 and mine is 91

> So I spent the last week and 1/2 trying to get a hold of the PCP

and got

> the big " we will talk to the doc and

> call you back " .... UGH so when they didn't call back i just

kept

> calling and calling. So I do more research

> and find the ALT could mean kidney or liver failure or hepatitis.

> Finally today when I explained what I had found

> out, they said they weren't concerned about my results but to tell

the

> endo about it when I go next week in case

> the endo wanted to follow through. I am so frustrated feeling

like I

> have to be my own doctor when I know so

> little about this disease. I don't know what to do, what tests to

ask

> for now.. I am also so scared because it seems

> like my body systems are all shutting down so rapidly and nothing

seems

> to be helping..... I started the " cocktail "

> (CoQ, Carnitor, Bvits and lypoic acid, vit E and my regular

> multivitamin) this summer in hopes that things would

> improve and I feel so helpless in my battle to fight this monster.

I

> know how fatal this disease is when it gets out of

> control but I am trying to be positive and hopeful. Some days I

just

> want to scream and rant and rave... other days

> I hardly think about it and am happy just living for today, and

some

> days I just want to curl up in bed and cry and never

> get up again. I am so glad to have you all as I know you all go

through

> this too and so much more. My friends and

> family are pulling away (except a few) and I feel so lost and alone

so

> much of the time nowadays. I want to be so much stronger

> and know what tests I need, what meds will help and which ones are

> making me sicker, what will slow the progression

> or stop it. My son Joe is doing so well, I feel bad that I am

jealous

> of his success.... but I wouldn't have it any other

> way for him. UGH!!!!!

> So sorry this is a long one!

> And again..... thank you all so much, I wouldn't have made it this

far

> without you all!

> Hugs, prayers to all,

>

> <>AnnMarie L. - Complex IV

> Married to my best friend Rick, <>Mom of (15), (12),

> Cassandra (6) and

> Joe (4 1/2) - complex IV, lactic acidosis, CP, tethered chord

syndrome,

> dysautonomia, and<>

> a smile that never quits ?

>

>

>