Addison Disease Support Group

My son has Addison's, Hashimoto's Hypothyroidism, Idiopathic Peripheral Neuropathy, and high insulin levels. They kept telling me he's dehydrated. I kept telling them there's something else wrong. It's not normal for a child's electolytes to be imbalanced and I want to know WHY. I knew he was not dehydrated from lack of fluids. I refused his surgery and insisted they find out what is wrong. My son nearly died with previous surgeries and I couldn't let them risk his life again. Finally, they recommended an Endrcrinologist, and within 2 weeks we found out. He's doing better now, and we are so happy to find out what's been wrong with him for 4-5 years. Dr.s should be forced to check cortisol levels when electrolytes aren't right...instead of assuming they're dehydrated.

Blossoms, agreed!!

It's a good thing you stood your ground and insisted on finding out what was really wrong.

Oh my goodness..being ill for so long without proper diagnoses is a nightmare, especially when it is your little one. Not to mention the hazards of not being diagnosed when you have Addison's, it can have serious consequences. I saw an Endo in the beginning and was only diagnosed with the Hashimoto's. I never felt any better with treatment and insisted something else had to be going on. I saw doctor after doctor and finally, a Pain Management Doctor tested me for Adrenal Ins. and sure enough, I was diagnosed with Addison's. You shouldn't treat the thyroid without checking for Adrenal issues first. Im still not where I should be and this has been going on since 2008. its a constant battle to manage correct levels. I have to check my glucose levels daily since I now have steroid induced diabetes. My heart goes out to you and your child. One thing I can say, kudos to you for standing your ground and doing your homework. We are ultimately the ones in charge of our own healthcare and unfortunately, we have to be well read when we present to a physician. I am quiet amazed at the lack of knowledge out there in the medical community. It should never take two or three years to reach diagnoses that could adversely affect our lives. There are too many tests out there to rule out medical issues.

Hi, I was reading your post and you wrote about steroid induced diabetes. I had a crisis on the 19th and two days after that I checked my blood glucose levels because I suffer from hypoglycemia because of AI, and I noticed that my blood sugar level was 288. I was shocked by this because my blood sugar is always really low. I went to my Medical doctor and he told me that maybe I ate too many carbs, however I told him that I wasn't really eating much of anything because I vomited over 15 times in a 6 hour period before being rushed in an ambulance. I'm wondering since I have been on Prednisone for a while if this is what's happening to me? If you have any advice I would really appreciate it. Thanks a lot Cicely S.

Cicely, having a high sugar level after vomiting is not necessarily an indication of diabetes. When your sugar gets too low and you vomit, your body releases stored glycogen (not sure if that's the exact term) from your liver. That spikes your sugar up temporarily. If you tested at that moment, that could explain the high sugar.

In non diabetics, it goes back down. In diabetics, it doesn't. Every range in between exists, too.

Thanks for the reply, and sorry it took so long for my response I haven't been feeling well.My endo checked my levels as well, and he stated that I am borderline. He says that my glucose- serum is high, and he also states that the steroids is the cause of my blood sugar levels being high.I went from having low blood sugar all the time now i'm having high and low readings so I guess only time will tell. Keep you updated once again Thanks.

Wow - I am totally amazed by you! As a mother, I can't imagine how terrifying that must have been. It was difficult/ confusing enough to get a diagnosis for myself (I have secondary AI), I can't even fathom going through that for one of my children. Kudos to you mom!