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Real members of CAHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is there anyone else with classic cah not taking meds?

A CAHteam Member asked a question 💭
Logansport, LA

I stopped taking hydrocortisone when I was 17. I told my Drs it was giving me roid rage, only to hear them tell me it was all in my head and if I didn't take it I would die. Well 30 some odd years later here I am. I was just wondering if there was anyone else that isn't on meds. As far as I know I'm the only bearded female I've ever seen.

March 8
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Reactions
A CAHteam Member

Yes it makes me want to snap for no reason.

April 25
A CAHteam Member

Does it make you want to rip someone's head off without a second thought?

April 25
A CAHteam Member

I am taking hydrocortisone as well

April 25
A CAHteam Member

Também acho que vc deveria se tratar,aqui no Brasil ainda não existe tratamento com as nova medicação, eu passo mal quando tomo 5 mg de hidrocortisona, acordava com o coração acelerado quase infartando,o nível do cortisol alto 33,não sei porque, eu parei de tomar fiquei melhor, pedi ajuda por causa do meu cabelo caindo,diz que o hormônio testosterona (119 no último exames)faz cair o cabelo. Também tenho 52 anos, nível do cortisol sem medicação chega a 8,é baixo, fiquei com medo do medicamento por causa da glicada também ficou fora do normal 5.9,parece que tudo começou a piorar, fora a pressão arterial, deu medo. Iniciei com 2,5 mg,que me senti bem,mas minha endocrinologista falou que ainda faltava ,aumentou dose para 5 mg depois de 3 meses ,depois comecei a passar mal no passar dos meses,fiz uso contínuo quase 1 ano. Tô esperando esse novo medicamento vir para o Brasil.
Vc tem sorte de viver no usa.

April 2
CAHteam2

Are there others with classic CAH not taking medication?

Your experience is quite unusual. Most people with classic CAH need lifelong glucocorticoid medication because their bodies don't produce enough cortisol on their own. Classic CAH typically requires daily treatment starting soon after birth and continuing throughout Show Full Answer

Are there others with classic CAH not taking medication?

Your experience is quite unusual. Most people with classic CAH need lifelong glucocorticoid medication because their bodies don't produce enough cortisol on their own. Classic CAH typically requires daily treatment starting soon after birth and continuing throughout life.

That said, every person's CAH is different, and severity can vary. Some people may have milder forms that present differently, though classic CAH generally requires ongoing treatment to manage cortisol deficiency and prevent serious complications.

The facial hair you're experiencing is likely due to elevated androgen levels, which is common when classic CAH isn't treated with glucocorticoids. These medications help reduce excess androgens in addition to replacing cortisol. Important considerations about stopping medication:

People with classic CAH who don't take glucocorticoids are at risk for adrenal crisis - a life-threatening emergency that can occur during illness, injury, or physical stress. Signs include:

* Severe weakness
* Vomiting
* Confusion or sleepiness
* Low blood pressure
* Dehydration

While you've managed for 30 years, it's worth discussing your situation with an endocrinologist experienced in CAH. They can assess your current cortisol production, evaluate your risk factors, and help you understand whether you might benefit from treatment - especially during times of physical stress or illness.

If the "roid rage" was related to dosing, newer treatment approaches and medications might work better for you now than they did decades ago.

March 8

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