Late Onset Congenital Adrenal Hyperplasia

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Hi everyone, I have been on this site for a little while now, but despite my diet and exercise attempts, I was still gaining weight. I was sent to a dietician, who tailored a food and exercise plan for me, and it still wasn't working, so she sent me to an endocrinologist. The endocrinologist finds that I have late onset congenital adrenal hyperplasia, meaning my adrenal glands aren't doing what they are supposed to,and sometimes it masks itself as Pcos, which I was told I had back when I was 18. I go Wednesday for my ACTH test, and they are going to inject me with synthetic hormones and draw my blood every 30 minutes for two hours to see my cortisol level so I can be on my way to lose weight and feel like myself again. Anyone else have problems like this? I was literally on a 1200 calorie diet with low carbs and high protein and still gaining weight. Right now I am still very frustrated, but getting by. Does anyone have any suggestions on how to bring some type of encouragement to this? I try so hard to stay on the positive run but it seems like nothing is going my way.

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  • ydyms
    ydyms Posts: 266 Member
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    Will your endo put you on steroids? That may help. Also seeing a nutritionist to learn how to eat low carb will help too, as CAH symptoms mimic pcos.
    Hugs!
  • lorrpb
    lorrpb Posts: 11,464 Member
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    It sounds like you've had a very frustrating journey. The encouragement is that the problem has been identified and a treatment plan is underway. I commend you for sticking with your goals thru all of this. Once your system gets straightened out, with commitment like yours you should be ablevyobstart seeing results.
  • fiddletime
    fiddletime Posts: 1,862 Member
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    ydyms wrote: »
    Will your endo put you on steroids? That may help. Also seeing a nutritionist to learn how to eat low carb will help too, as CAH symptoms mimic pcos.
    Hugs!

    No. Not if you have adrenal hyperplasia, which is an over production of cortisone (as opposed to adrenal hypoplasia- an under production).

    Just listen to your doctor and be glad that you pursued a medical explanation for your lack of weight loss. Now they can get you started on treatment, once they get all the testing done.

  • ydyms
    ydyms Posts: 266 Member
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    fiddletime wrote: »
    ydyms wrote: »
    Will your endo put you on steroids? That may help. Also seeing a nutritionist to learn how to eat low carb will help too, as CAH symptoms mimic pcos.
    Hugs!

    No. Not if you have adrenal hyperplasia, which is an over production of cortisone (as opposed to adrenal hypoplasia- an under production).

    Just listen to your doctor and be glad that you pursued a medical explanation for your lack of weight loss. Now they can get you started on treatment, once they get all the testing done.

    CAH IS adrenal hyperplasia . And steroids help suppress the overproduction. You're mixing it up with 17 hydroxylase defficiency.
  • airuhka2006
    airuhka2006 Posts: 26 Member
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    Thank you all for your responses