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Addison's Disease Message Board

Addison's Disease Board Index

Hello all, I hope you are all doing well. I'd like to share my story and hopefully get some answers, I don't know how much longer I can deal with all of this.:confused:
I'm a 34 yr old mother of 4 girls and was diagnosed with Fibromyalgia about 12 yrs ago due to fatigue, muscle/joint pain, and chronic headaches. This diagnosis came very quickly from a Physicians assistant after very little blood work to rule out thyroid and Lupus. Looking back in my records I had been complaining of a rash off and on and had an elevated sed rate at least one time, Fibro doesn't cause elevated SED rate but autoimmune diseases do.
Fast forward many yrs to now and I am post hysterectomy 2 yrs and I still have my right ovary, since my hysterectomy everything has excelerated very quickly. In 2005 I was sent to an endo due to what my GP said was the worst blood sugar he had ever seen. I did an oral glucose tolerance test and my one hour level was only 55! I went to the endo and he noticed that my skin is dark and he checked my cortisol level which was low.(didn't get the numbers but wish I would have now) I went back for the ACTH stimulation test and I was told it was okay.. again, didn't get the numbers. The endo never made an appointment or told me to follow up so I had pretty much put this out of my mind until now.
A couple of weeks ago my 5 yr old daughter was not acting herself and we took her to the GP. Her TSH was elavated and they said she is hypothyroid. She is now being seen at a children's hospital by a pediatric endo. They gave us a blood sugar monitor for her and that's what reminded me of my very low blood sugar and them thinking that I had Addison's Disease.
Over the last couple of years my health has declined drastically, I've been to just about every specialist you can name and many of them find things that are not right but no one seems to know what's wrong. Lab wise the only abnormalities that have been found were the low blood sugar and low cortisol. I have a current cortisol level pending at my GP and hopefully I'll hear that result today. Here are my signs and symptoms..

high grade "fevers of unknown origin" with right side flank pain (rib cage)
lots of infections, had bladder, tooth and eye all at once
constipation w/the fevers and rib pain
osteopenia in my right ankle (noted by foot doc who did bunionectomy)
Mitro regurgitation (leaking valves in my heart)
ventricular tachycardia (very rapid heart beat with arrythmia (sp?) )
moderate hydronephrosis on right kidney, was also noted to be slightly enlarged later on
reflux in kidneys
low blood sugar
low blood pressure
unexplained weight loss
chronic tendonitis
"early athritis" (hip x ray)

these are all of my "signs" that are documented in my medical records.. here are my other symptoms...
severe shortness of breath even while at rest
thinning hair
thin splitting nails
very bad memory problems
cold all of the time
night sweats that come and go
occassional nausea and vomitting
headaches, sometimes daily.. they can come and go on a dime
loss of libido
violent mood swings/difficulty controlling anger
blurred and double vision
very easy bruising (get a hickey from a kiss on the neck!)
numbness/tingling of hands and feet
swelling under the eyes and in fingers
lots of stabbing pains in rib cage front and back

whew... I'm sure there is more but I think you all get the picture. I would like to know how accurate the ACTH test is and since I had that and was told it was okay does that rule out Addison's even with the low cortisol level? I have to admit that at this point I'm ready to give up, I don't know how much more of this I can take. It is to the point now that I barely have the energy to shower or change my clothes. I feel some of this is due to the blood sugar not being addressed... I'm having trouble staying awake especially an hour or two after meals. I fall asleep anywhere lately and at any time of the day. I feel like I'm practically in a coma and no one is paying any attention. I had my blood sugar checked the other day and it was 92, what I couldn't get through their heads is that it is okay because I haven't tried to eat yet.. when I eat is when it plumets and I can no longer function. I'm going to go and buy myself a blood sugar monitor today to see how low it actually gets. Can anyone give me advice on how to deal with these symptoms on get back on my feet so I can get a diagnosis and treatment? Is it just in my head or is Addison's pretty much the only thing that my lab results point to? Thank you all for taking the time to read and or respond. :)

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