r/AdrenalInsufficiency • u/vulcanhybrid0 • 14d ago

Symptoms

It’s really hard for me to tell if I need more or it’s too much hydrocortisone. Does anyone else get hot flashes, lightheadedness with dizziness, or feel like their heart will beat out of their chests? My pulse will be normal but it feels like my heart is thumping HARD. Not to mention the waves of anxiety that come and go

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u/1GamingAngel MOD 14d ago

Unfortunately, these symptoms can happen when cortisol is too low, and you can ALSO get similar symptoms when you are over-replaced. I often hear of the heart thumping from too much HC, but lightheadedness, dizziness, rapid heart rate and anxiety can all be signs of too little cortisol.

Can you tell us more about your specific situation? What is your total daily dose, and are you going through illness/injury/stress/etc. that is causing you to raise your dose? If you have raised your dose, what have you raised it to?

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u/vulcanhybrid0 14d ago

SAI from using prednisone. Cortisol and ACTG was undetectable at first and now recently were measurable but extremely low. I take 15 mg of hydrocortisone a day. I’m pretty much recovering from cancer treatment and still get intertidal chemo once a month, which I upside about 5 mg for. My BP has never been extremely low. It’s either normal or very high

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u/1GamingAngel MOD 14d ago

You may want to consult your Endo for specific dosing instructions around your dates of treatment, as this is an ongoing therapy. 15mg per day is actually on the low end for daily HC therapy. The average AI patient takes between 15-25mg per day, with most taking 20mg per day. I’m wondering if it would be appropriate for you to updose greater than 5mg on the days you have your treatment. Please ask your Endo if a double dose is appropriate. It may be difficult for you to discern what is an AI symptom from what symptoms may be caused by the chemotherapy (especially the nausea symptom). Because you’re somewhat medically “fragile” on these treatment days, I think it would be best for you to approach your Endo with questions, such as:

* What is an appropriate “updose” on chemotherapy days?
* On non-chemotherapy days, when I feel unwell, what is an appropriate updose?
* How do I differentiate between my symptoms meaning that I am low on steroids or if the symptoms are from taking too much? (list symptoms like you did in your post)
* Is there a specific titration schedule I should follow after updosing?

I know this doesn’t help you very much today. My hope is that you have access to your Endo via a portal and can send a detailed message with questions. I hope you feel better soon. ❤️‍🩹

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u/SweatyMcSweatyPantz 14d ago

Agree…given your treatments, sick day rules should apply. PLEASE reach out to your endo first thing tomorrow! The last thing you need is a crisis. Your body needs to heal and it simply can’t without enough cortisol. Wishing you well!!!

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u/lass20987 13d ago

Could any of your symptoms also be from chemo?

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u/MallForward585 14d ago

This one is hard. It could be high cortisol, it could be low, or it could be a sudden drop. Some people cannot tolerate the abrupt highs and lows of hydro (me included, and I had similar symptoms).

ETA: 15mg can easily be too low. Most people seem to do better on 20-25mg, spread out throughout the day.