Hi Susan,

I'm sorry to hear of all your problems---it sounds like you've been given the runaround---and I can understand your frustration.  Sorry, I really have no answers for you....just a few more thoughts, and some questions.

First, I agree it is ridiculous that your endo refuses to consider the dex elixir.  I can understand being a bit reluctant if you are talking about changing medication completely (say, from dex to HC), but to be close-minded about a different form of the same drug seems to me completely unreasonable.  To insist that you continue to break a pill into miniscule pieces, in order to try to get to the right dose, is ludicrous, not to mention that doing it that way must be very inaccurate, anyway.  Have you shown him the articles I mentioned---the ones from Schwarz Pharma and the U. of Michigan?  Also, I gave the reference for where to find the dex article by Drs. Rivkees and Crawford.  These are two very well-respected professionals in their field, not some fly-by-night dilettantes, and he should be willing to read and educate himself a bit, and even make a few phone calls, on your behalf, if he has any concerns.  If you're interested, email me and I will let you know how to get in touch with Dr. Rivkees.  He is wonderful  (and, luckily, just happens to be my son's endo) and I am sure he would be able to answer any questions your doctor might have about the liquid dex. 

In terms of your dose:  If you've tried it different ways (morning and night); don't feel good physically; and are continuing to lose weight, then perhaps your current dose is too small.  Are you showing any symptoms of hyperandrogenism (increased acne, hair, etc.) at this low dose?  From what you've written, I am unclear how you (or your doctor) are making the judgment about when to make dose changes.  Were you showing signs of oversuppression at 0.625 and 0.5?  What prompted the decision to take you all the way down to 0.375? 

It also seems to me like each of your dose reductions have been pretty steep ones---could that have contributed to your tiredness and fatigue?  I've always heard that it was very important to wean off steroids sloooowwly.  A reduction from 0.625 to 0.5 mg. represents a 20% decrease; and a reduction from 0.5 to 0.375 mg. represents a 25% decrease.  We have actually lowered my son's dex dose, cumulatively, by about 27% in the last 6 months, but this has been spread out over 4 different reductions. I do not know what the guidelines are, but each time, we have never reduced by more than 10%.  Though it requires a little more patience, this careful, controlled approach has worked very well for us.  My son has never suffered any ill effects after his dose reductions, at the same time that his labs have remained very steady. 

Have you discussed with your doctor how your thyroid problems figure into the whole picture?  Since the thyroid gland affects metabolism, I would assume that any adjustments you make to your dose have to take that into account, as well.  Also, I'm remembering, now, your extreme sensitivity to sugar and changes in diet.  Not that I'm trying to give you one more thing to worry about, but have you looked into being tested for diabetes?  I know next to nothing about diabetes, but read about it a teeny bit last fall, when I was trying to understand more about blood sugar levels.  I do remember reading that regular users of steroid medicines are at greater risk of developing diabetes in their 40's, especially if there is a family history.  Are there any diabetics in your family?  I guess it just seems to me that CAH, in and of itself, should not produce the extreme reactions to food and drink that you have described in previous posts.

And, finally, I agree that---especially with a history of CAH in your family, i.e. you!---it is ridiculous that your brother's doctors would refuse to test him.  Even without symptoms, it is often recommended that family members be tested, to determine their carrier status, for family planning purposes.  Is your brother married, planning to have children, etc?  I am pretty certain that insurance will pay for genetic testing, in this situation, if he is.  They may pay for a portion of the costs, anyway.  After my son was diagnosed,  everyone in our family was tested, including my then 10 yo. daughter (who is not yet ready to have children). Insurance picked up 80% of the cost for each of us (about $600 pp), so our out-of-pocket was only about $120 each.  Considering what your brother has been through the last many years, this might be money well-spent, even if he has to shoulder the entire cost of the testing.

I'm also not sure that your brother's doctors are correct in stating that excess testosterone or other androgens are not harmful to men.  According to another article, Update on Congenital Adrenal Hyperplasia, co-authored by Dr. New, ".....complications of small testes and aspermia have been reported in some patients with inadequately controlled disease."  This article goes on to say that, "Another frequently reported complication in post pubertal boys with inadequate control of CAH is hyperplastic nodular testes."  In other words, your brother could be at increased risk for infertility and testicular tumors if he has CAH and is not being treated.  This article by Dr. New has been reprinted a zillion times in a number of different publications, and should not be at all difficult for your brother's doctors to find.  They might be ignorant, as a result of being inexperienced with this CAH, but there is no excuse for them to be illiterate, as well.

I remember now that you live in the Seattle area.  Which direction, 2-3 hours away from you, is your brother located?  I was recently given the name of a doctor in Oregon who is supposed to be great and comes highly recommended by our own doctor, someone whose opinion I value and respect highly.  This doctor is a pediatric endocrinologist so, of course, his specialty is children.  But from what I've heard, because of the nature of CAH, it sounds like many ped. endos see adults, as well.  I don't know that he does, but if you're interested, I'd be happy to pass along his name and number, as well.  It sounds like you've been through the wringer, Susan....I hope things start to look up soon!