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

[Guest guest]

I can relate in some ways. I personally think i have mito situations going on and zachs just werent detected by biopsy cause his was frozsen or did improperly since his ga2 seems to be very minor. I have a thyroid board i post on where lots of people use armor. I feel that w/ me something goes wrong each year, they constantly find a new conditon to dx me w/ . I worry too about my organs. I know that what you describe w/ your sugars

is exactly what happens to my son. When his sugars crash he has a power boost of insulin to regulate them. Well it over exceeds it a lot and will shoot up high, yet he is still feeling the affects of the low blood sugar. We're to keep an eye on it so that his pancrease isnt being damaged in the process. As far as livers go, just have them keep retesting it cause i had mine done one time and they were 110 / 90 for alt /slt

then the next test they were fine. Illness can cause fluxuation also medicines. Have you been on a lot of pain meds? It has to be frustrating. I know. That is why i am trying to go to mayo. just keep plugging along at it and don't let the dr.s give up! Also don't you give up. I keeping you in my prayers.

mom to zach 4 ga2, alexis 5AM 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 whohave helped me and my family understand this disease so that we could get the proper care and find theright docs to help us. Your love, kindness, support and knowledge is truly touching and I wish I couldrepay 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 feelin 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 producingenough insulin but my pancreas is not "wasting it" properly so I have "free insulin" in my systemcausing my blood sugars to get too high. So I started the glucophage and have been very illon 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 meso 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 andcall you back" .... UGH so when they didn't call back i just kept calling and calling. So I do more researchand find the ALT could mean kidney or liver failure or hepatitis. Finally today when I explained what I had

foundout, they said they weren't concerned about my results but to tell the endo about it when I go next week in casethe 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 seemslike 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 wouldimprove 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

neverget 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 andfamily 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 strongerand know what tests I need, what meds will help and which ones are making me sicker, what will slow the progressionor 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 otherway 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 IVMarried 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 ☺ Please contact mito-owner with any problems or questions. __________________________________________________