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

[Guest guest]

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 ☺