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Cortisol Deficiency

missvolvomissvolvo member
in Special Needs
One of my boys (John) has been diagnosed with a cortisol deficiency. This was discovered when he was 8 days old as he would rarely open his eyes. Our pediatrician sent us to the ER and his blood sugar was found to be 29. After being in the hospital for a week, they tentatively diagnosed him with cortisol deficiency. His body produces cortisol, but at the very low end of normal and it does raise and lower with stress, but not significantly so. He is on oral hydrocortisone three times a day. We are starting to wean him from this and the drs think this is something he might grow out of. Does anyone have any experience with this?
Me: 33, DH: 33
Married since 2007

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Re: Cortisol Deficiency

  • OhSewCraftyOhSewCrafty member
    Poor little guy. My daughter was diagnosed with Congenital Adrenal Hyperplasia (she creates no cortisol) when she was 7 months old. I'm glad you caught it quickly! It can be quite dangerous when it goes undetected. 

    Is he seeing a GP or a pediatric endocrinologist? I believe some people do grow out of the deficiency, but it's really helpful to have a genetic work up to see what is causing it. My daughter has 21 Hydroxylase Deficiency, the chemical that combines to create cortisol. For her, it was a combination of two recessive genes for the disorder, one from myself and one from my husband, so it was clear once we did the genetic panel.

    Anyway, I'm sorry you're dealing with this. It's rare and not a lot of people know what it is or why it can be scary. If you have any questions, please let me know and hopefully I can help. My daughter has been on oral hydro for over a year now and she's doing great.

    Good luck Momma. They're beautiful. <3
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  • adamspsadamsps member
    Hi! My daughter has cortisol deficiency (also known as adrenal insufficiency). In her case, it's caused by her pituitary gland not being formed correctly (this is visible on an MRI). The pituitary stimulates the adrenal glands to release cortisol. Her adrenals still create some but not enough cortisol, and not enough in response to stress. She also had low blood sugar at birth. She takes oral hydrocortisone 3 x a day and we do stress doses of the medicine when she is ill (fever, vomiting, etc). She is now 3 and doing great, is a totally typical kid with boundless energy, etc, and has only had a few issues where she became ill overnight before we caught it and her blood sugar dropped low again. We do carry an emergency solu-cortef shot on us in case of extreme illness or trauma, which may be something to ask your endocrinologist about (assuming you are seeing one - i would strongly recommend that!). I hope you're able to wean off the meds and he doesn't have to deal with this long term. Best of luck.
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  • missvolvomissvolvo member
    @adamsps hi! That sounds very similar to John! We just saw his endo today. John is currently on 1mL total per day which is a replacement dose. He is going to be weaned down to about half that over the next couple of weeks and we are going to get labs drawn to see where his levels are. He has had an mri and structurally his pituitary looked great. So glad to read your daughter is doing so well!!
    Me: 33, DH: 33
    Married since 2007

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