Congenital Adrenal Hyperplasia

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re: re: re: different treatments - to Kerry Main Archives Page2003
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re: re: re: different treatments - to Kerry
Aug. 12th, 2003   2:17pm

Kerry - Many of us who have really studied our bodies over time have found through trial and error that carbohydrates and sugars are very hard on most with any form of CAH. Personally I noticed that I was always tired after eating carbs (bread, potatoes, carrots, corn, rice....and a long list of other things) and also when I ate cookies or anything sweet Iíd feel dizzy and not be able to focus well. Besides Iíd be really crabby too.

For me - because of the adrenal problems I tend to be hypoglycemic - My endo sent me to diabetic counseling and I have found that I really have to watch what I eat if I want to feel well. Also Kerry - Iím not sure if you are familiar or not - but women with adrenal problems tend to have a higher chance of having thyroid problems later on - Iíve seen numerous women on the other boards talk about being on thyroid medication.

There is a lot to be learned - and really what Iíve learned and continue to learn hasnít come from my various endos. What Iíve learned is listening to other people that have had adrenal problems for a while (the Addisons Support Board is a really good one too) will teach you a lot. All the things that my endoís have told me and I questioned (like steroids donít make you gain weight, adrenal problems donít cause mood swings, anxiety is not part of CAH, ad infinitum......) have been talked about on the CAH boards. There is so much thatís not known - but when a lot of people with various  forms of CAH start talking and comparing their symptoms and they are all similar - then that tells me something. I have a wonderful endo (a little cocky though) and itís gotten to the point where he will tell me to just try different things (like time of dosing, how much, etc) - he knows that I know my body well and that each patient with CAH reacts a little differently with medication and what type, etc. We are the ones that live with this - it hasnít been studied that long - so we need to determine what works and what doesnít.

So - yes - there are a lot of things that factor in with CAH - frankly it sucks some of the time - but itís a lot better than it would have been being born with this in say the 20ís or 30ís. We wouldnít be around to talk about it..........

Susan A.

Susan A.

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