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Addison's Disease Message Board

Addison's Disease Board Index

My 15 year old daughter had a large dose of dexamethasone/decadron (10mg a day for 7 days) for croup/breathing difficulties in Jan 2007. Since then she has suffered from dreadful weakness and was unable to walk from April 2007 - Sept 2007. She improved for a while after a holiday in the sunshine with lots of swimming but in January this year started to get a lot weaker and this has unfortunately progressed. She can walk slowly around the house but is very limited. We realised a few months ago that last year she had many symptoms of cushings although these may be lessening a llittle now, apart from the weakness.

In June 2007 she had a blood cortisol levels done:

9am reading 240 nmol/L (200 - 700)
4pm reading 70 nmol/L
Range for this not given on test result just states "Difficult to interpret as sample taken mid afternoon. If adrenal insufficiency suspected suggest refer for Synacthen Test."

Our dr said these were normal. Since Feb this year we have believed that the dose of steroids was given in error and she should have been given a single dose of 10 mg of dexamethasone/decadon. Rumpled was very helpful on a previous posting suggesting Cyclic Cushings. We are also wondering if she may be suffering from a secondary adrenal insufficiency/suppression. She has just had a 24 hour urine test:
76 nmol/d (0 - 260)

We just want to get to the bottom of what is wrong and get her better. Our Doctor says the dose of steroids last year isn't unusually high and they often give higher doses especially to people suffering with epilepsy. She says that they only generally see adrenal suppression after prolonged treatment (daily for at least 3 weeks) and is unlikely to persist this long.

The hospital has now agreed to do a cortisol only Modified Short Synacthen test but we have to wait a further 2 weeks for this. We feel as if the doctors don't want to help us anymore, and are only doing very basic tests so that they can dismiss my daughter, possibly because they don't want to admit their error? I am wondering if anyone has any other ideas about what we can do to establish a diagnosis. We are unsure whether it is adrenal insufficiency or cushings, or something else. I have read about the salivary adrenal stress index test where DHEA is tested and cortisol at 4 different times in the day.

Thanks for your time in reading this. Any ideas would be very appreciated.

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