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Addison's Disease Message Board

Addison's Disease Board Index

Dear "Craftlady",

Hello! It's been a LONG time! Sorry to see you NEEDING to come on here again, but I WAS wondering how things were going. Did Carmen just start to feel icky AFTER she tried getting off the meds, or was it already getting apparent they were not doing all they should BEFORE she tried not taking them? One friend of mine explained to me that Florinef has Cortisol properties in it. So I would think that if she wanted to try to get off the Florinef at all, and could do so successfully, it would have to be done VERY gradually, rather than "cold turkey" as her body may have cut down on its own production of cortisol because it was being supplied with the steroid properties the Florinef carries. I feel like I'm writing such LONG sentences. I hope they make sense. It surely sounds as if she has many of the symptoms of adrenal crash when she tries to get off the meds.! Let's see, can't remember what all tests Carmen's had in the past. Seems to me you were having some trouble getting them to do all the important tests?

Below are a few to suggest while waiting for an endo appointment, OR you might try seeing an osteopath who has treated others with Addison's. Even if Carmen's HAD some of these tests before, it may pay to retest. Don't know if she should be off her meds to get accurate results or not, though. Maybe with an osteopath (since not a specialist) the wait would not be as long, and their mind might actually be more open to anything short of overt adrenal failure. You know there must be something ON THE WAY to failure, just as a Diabetic doesn't get the disease overnight. The symptoms only show up, in fact, when the pancreas is somewhere near 90% damaged (for lack of a better word right now).

[U]Try these[/U]:

MORNING (0800 hr.), fasting Cortisol reading (while ON or OFF the Florinef)

Postural Hypotension test (lie down for 20 min., then take BP; stand up and retake; stand for 5 min. and retake again) Is there a huge drop in BP when standing, and a rise in pulse?

Blood and urine tests for sodium, potassium, renin, aldosterone, ACTH plasma, TSH (thyroid) and complete thyroid panel with T3, T4, complete T3, complete T4 and thyroid antibodies (if possible), AND ADRENAL ANTIBODIES (about 70% of those with adrenal insufficiency have adrenal antibodies). Blood sugar levels to check for Diabetes. Magnesium levels, Iron, & Vitamin B in blood.
If not checked for EB virus and Mono and Citomegelia, have these checked. Possibly may want to check for Lyme Disease -- preferably by means of the Western Blot test and the Elisa.

Hope this will help, Carmen. I would survey different doctors you're eligible to see to ask if they would be willing to do these tests and any others you think of yourself!

Give Carmen my love, and tell her to hang in there. There is a 16 year old boy who just joined a message group I'm a member of, and he was just diagnosed with Addison's. Travis (my son) is still awaiting a proper diagnosis, but if we can get insurance approval, he'll be going to the Mayo Clinic in February. Our answer may not be far away. Perhaps we can lend a hand in finding YOUR answer. Has Carmen got any of the Addison's tan on her toes or elbows or knuckles? If not, she may need her pituitary hormones checked to see if IT is the problem (FSH, LH, Testosterone, Estrogen, TSH, ACTH).

Yours and Carmen's search for treatment will reach an end some day, and this will all be in the past. Things will start to look up! ~ :wave: Tracy

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