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Addison's Disease Message Board


Addison's Disease Board Index


HI,

I would agree with Wanda about this. Metapyrone testing is essentially outdated because of much safer and easier alternative testing that likely offer just as or more accurate results. Metapyrone testing can put you at risk of adrenal crisis-so you definitely need to be supervised by medical professionals during the test. It doesn't sound like they have planned that for you. It is my guess that your doctor is suspicious of secondary adrenal insufficiency (failure of your pituitary gland to make enough ACTH, which is what stimulates cortisol release from your adrenals). It can be a difficult diagnosis without the right stimulation tests and often 250mcg ACTH stimulation tests (the standard test run for primary adrenal failure) is normal, even when you have a problem.

You have two issues to contend with. First of all, the use of this test is quite unusual and red flags are going up that maybe your doctor doesn't deal with secondary Addison's very often-it is quite rare so that's to be expected. The other issue is that now that you are on prednisone, skipping a single dose isn't going to give you information about what your own natural adrenal and pituitary function is. Prednisone has a much longer half life than hydrocortisone and will cross react in the cortisol measures-making your cortisol levels look higher than they are. It will also cause suppression of natural cortisol function, lower your ACTH levels and reduce your hypothalamic CRH levels-all part of the normal cycle of cortisol release. Low doses (<5mg) MAY not have much effect, but without going off of it, who is to know what is drug side effect and what was already a problem prior to your going on the prednisone.

You are in the ultimate pickle that Addisonian patients get stuck in when they end up on prednisone without proper testing first. I am very frustrated for you about it.

Could you possibly ask your doctor if he could first slowly and carefully switch you to hydrocortisone (cortef) therapy for several weeks (at least) prior to running any further tests? Then, if you stop the medication for 12-24 hours, it wont interfere with test results-it has a short half life. The other less appealing option would be dexamethasone, which is a strong steroid and can suppress the adrenals quite easily on low doses, but doesn't cross react with the cortisol assays. It sounds like you get quite sick without some sort of steroid on board, so it doesn't seem wise to just pull you off of it altogether.

The next thing I would consider asking your doctor is whether he would be willing to run a different test of your pituitary function, such as a low dose ACTH stimulation test. This uses only 1mcg of synthetic ACTH and carries almost no testing risk. It is also easy and can be finished in less than an hour. I have included the testing protocol (which is easy) for you to give to your doctor to show him you are motivated to do a safer test than the metapyrone test. This protocol is from Vanderbilt's pituitary center:

1mcg Cosyntropin Stimulation Test
Indication: Diagnosis of central adrenal insufficiency

Procedure:

1. Insert saline lock (catheter) into peripheral vein

2. Obtain blood samples for baseline serum Cortisol (red top tube)

3. Inject 250mcg Cortrosyn to 250ml 0.9% NaCL and mix well

4. Inject 1.0ml of the mixture IV (not IM) through saline lock

5. Inject 3cc 0.9% NaCL into saline lock to prevent blood from clotting

6. Waste 5cc blood at 30 minutes

7. Obtain a repeat serum Cortisol level at 30 minutes (red top tube)

Interpretation: A rise in serum Cortisol to greater than 18ug/dl within 30 minutes suggests a normal result. A serum Cortisol of less than 18ug/dl suggests the presence of central adrenal insufficiency.

If this doctor is worrying you....trust yourself. Just because you can't go to someone in your own town doesn't mean that you can't consider traveling to find someone who deals with pituitary patients. My husband had to travel out of state for his diagnosis of pituitary failure with secondary addison's disease. Your life and health are worth the trouble and in many cases insurance will cover out of state providers, even if it might take a little letter writing. The squeaky wheel gets the oil.

Happy squeaking. And keep listening to that little voice that is telling you something isn't quite right about this situation...it's probably not.
Sadie





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