Addison's Disease

[jillp0323]

Looking for information and/or support for Addison's Disease.  On steroids and struggling w/insomnia, weight gain, controlling stress.  Are there other meds than hydrocortisone and flurinef?  Any info on min/max dosing?  Thanks for any help or info anyone can provide!!!!

[Oliviasmommy]

Hello,
I am looking for any help I can get. My daughter who will be three next month, was just diagnosed with Addison's disease. I haven't been able to find anything regarding a child of her age with this disease. She also had a high TSH level and further blood work showed thyroid antibodies.

Here is a little back ground. At 7 months, April 2006, she was hospitalized for strep pneumo and possible bacterial meningitis. She was pink and a little chubby. By 9 months, she was all over tan. Sep 2006 she had here first seizure. She was seen by a neurologist and was placed on Trileptal. Jan 2007, she had a throat infection and wasn't eating very good. The next morning my husband found her in her crib unresponcive. She was rushed to the local ER. She was having a seizure. After an hour of failed attempts to get an IV in ( she was too dehydrated), they placed an IO in her lower leg. Once able to get blood drawn, they came back in and said her blood sugar was 14!!! We were seen by a endo in the hospital and she said Olivia seemed to have ketotic hypoglycemia. She had ketones in her urine. We followed up and a metabolic geneticist as well as the endo. The endo then felt that we didn't need to see her any longer b/c it wasn't a growth hormone issue, or a insulin problem. May 2007, I discovered she had blue/black patches on her tongue. None of her doctors could pinpoint a cause. Olivia continued to have problems with blood sugar. Usually in the morning, and usually while sick. After seeing a geneticist at Shands in Gainesville, and him asking if any adrenal blood work had been done, we started to do some research at home. We came across Addison's Disease. We were convinced that was what it was after reading about the hyperpigmentation. I took her to her pediatrician and she referred us to another pediatric endocrinologist. The very next day after seeing the pediatrician, Olivia woke up with a blood sugar of 34. She was hospitalized for three days and after me requesting an ACTH test, she was diagnosed. In fact it had been Addison's!

Now I don't know where to go. I would like her to see a doctor with experience with a child of her age and Addison's disease with Autoimmune.

[kitonthemoon]

I too have Addison....and now Hypothyroid.  I thought the sure tell sign of hypothyroidism is weight loss.  Cushing on the other hand is just the opposite.  So I thought, I could be wrong.

I get very sleepy when I'm on the verge of having a crisis.....and afterwards.  

I do believe hydrocortisone side effect is insomia.....that's why some doctors don't suggest us take it after 2 pm.

If you are like I who also have ME/CFS, then, you should start every meds at the lowest level and adjust to your condition.
Here's a very good link to loads of info............http://www.nlm.nih.gov

keep well.

Kit

[melojoe]

I have Addison's Disease as well and have the same problems.  I also have hypothryroid and when my levels are off, my insomnia and weight gain is worse.  Have you been checked for thyroid disease as well ( I understand it is common is Addison's Patients).
In the hospital when I had an Addisonian Crisis (16 days ago) they had me on a huge dose (100mg 3 times a day).  They tapered me off to what is now my maintance dose: 10 mg at 8a.m.; 5mg at 12:00p.m; and 5mg at 4:00p.m.
Hoping this will help a little.

[txmsmichelle]

I am looking for the same info...have you had any luck with responses yet?