TO Carol - long (July 2001)

Sorry to hear of your brother's continuing problems. At this point, why not just get him DNA tested, so you can resolve the CAH question, once and for all? It seems like a small amount to pay for peace of mind. Here is the link to the Cornell website on testing. You can draw the blood locally and ship it to them for analysis:

Here are the links to 2 studies. (These are only abstracts; full copies would have to be purchased online or gotten at a medical library.) Both studies report that the potency of dex vs. hc is ~80-1, when used for replacement purposes. The doctors in Study #1 use the dex elixir. I don't know about the second study.

1. Dexamethasone treatment of virilizing congenital adrenal hyperplasia: the ability to achieve normal growth. By Rivkees SA, Crawford JD. Pediatrics 2000 Oct;106(4):767-73

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11015521&dopt=Abstract

These two websites discuss the findings of article #1, the one by Dr. Rivkees and Dr. Crawford, which was fairly recently published. Both reviews mention the use of dex elixir and that the relative potency of dex/hc was found to be ~70-80:1.

Here is a pharmaceutical website that gives all the pertinent chemical information about the dex elixir. It is only one of hundreds that can be found if you use a search engine such as google.com and type in the keywords "dexamethasone elixir." It should satisfy any concerns your doctor has about the difference between the elixir and the pill. If he continues to have questions, I would think that a call to one of the several pharmaceutical companies that make the elixir, or to the friendly local druggist, should satisfy him.

I have absolutely zero experience with diabetes, and probably don't know what the h*** I'm talking about (I admit it!), BUT i was just struck by your symptoms of both low and high blood sugar at the same time. You mentioned being hypoglaecemic, which is having low blood sugar; at the same time, you say you feel awful and sleepy after drinking or consuming carbohydrates, which is a symptom of high blood sugar. I remember reading that this is sometimes common when diabetes is present, but untreated and uncontrolled. I believe the term is brittle glucose and refers to wild, spiking highs and lows throughout the course of the day, which makes diagnosis, especially with only spot glucose checks, sometimes difficult.

If you're interested in learning more, the book I was reading last fall is The Johns Hopkins Guide to Diabetes For Today and Tomorrow by Christopher Sauder and Richard Rubin, MDs, and Cynthia Shump, RN. As I said, I really don't know anything about this subject and am not trying to suggest that you should still be worried about it, only that you seem to have some odd symptoms, similar to diabetics, at the same time you have a couple of other risk factors (over 40, history of steroid use.) You know your own body, though, not me, and are in the best position to see if this is an issue worth revisiting.

The endocrinologist in Oregon that I mentioned is Dr. Steven LaFranchi. I don't know how close he is to you or your brother geographically, but he is supposed to be excellent. His # is 503-494-1927. Even if he does not see adults, perhaps he can refer you to someone else in your area, or give you some suggestions.

P. S. I do have your email address...thank you. I'm putting this up on the mb, in this case, in the event that the studies/abstracts are of interest to others.