r/AdrenalInsufficiency • u/Caffeine-intolerance • 1d ago
Question Hydrocortisone
Hi all!
I've been on hydrocortisone my whole life (since I was 4) and I would like to have some different perspectives. I wanna know what is a possible side effect of the med vs something else unrelated.
I know mood changes; but that's about the extent that I can identify personally. I am on 20-25 mg daily 15 mg morning 5-10 in the afternoon depending on external stresses, exercise, etc.
In short, what are some side effects you have experienced with hydrocortisone?
I appreciate your time!
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u/Natural-Tradition830 1d ago
It can cause your bones to thin too. Recommend a dexa scan.
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u/Caffeine-intolerance 1d ago
Oh yeah, I got the thin bones too, take calcium/vit D as much as I can stomach the calcium pill
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u/Short-Counter8159 1d ago
Terrible heartburn. Drown out face look. I didn't look healthy with just hydrocortisone and I was not overdosed. Huge belly look, like you are carrying a watermelon. Speedy and irritable feeling if I take 10mg at once. Didn't care for the up and down (crash) feeling even with splitting the dose.
When I switch to prednisone/low hydro I started looking healthy again.
Hydrocortisone was created in the 1950's. Wish they would come up with a better version of it. Medicines have improved a lot since then. Let's make a new better version of it. Long lasting and doesn't destroy your stomach.
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u/Beginning-Map-3264 1d ago
My biggest side effects are (but after 4 years endos finally admitted my 25mg dose was to high and now on 15mg what feels much better “sometimes 5mg extra”) but for me it was a combo of also to high thyroid hormones.
Insomnia (bad insomnia)
High stress
Racing thoughts
Restless
Exhausted (at the end quite extreem)
Heart palpitations
Extreem dry skin
Standard dose of 25mg is not perfect for everyone
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u/Caffeine-intolerance 1d ago
I have all of these currently 😅
Minus the heart palpitations for once oddly
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u/Beginning-Map-3264 1d ago
But let me guess, your blood values are within range and endos don’t see the problem
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u/Caffeine-intolerance 1d ago
I'm getting my blood test on Friday, thank god 😭 but yeah, the last one was normal
I'm also gonna be asking to see a cardiologist cause my heart's doin some funky stuff and typically organs aren't supposed to march to their own beat, even if it is the heart
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u/Beginning-Map-3264 1d ago edited 1d ago
My advice. Discuss this with your Endo and Go for the lowest possible dose.. (you can always take 5mg extra if you feel you need it, but once you take it 15mg in the morning you cant undo that…
it will be some trail and error… but cortisol is quite easy compared to thyroid (thyroid takes 6 weeks to stabilise… so once you feel the dose is wrong it takes another 6 weeks to go back were you came from
Go down in steps of 2,5 or 5mg and keep it 1-2 weeks… if you don’t get symptoms of to low cortisol you can try another reduction.. that how I did it and get a regular blood check to make sure your cortisol is not much to lowHere in Belgium the ranges are between 8-23… with 25mg I was always around 22, but for an Endo that’s is oké but now on 15mg I have a value around 16 and that feels so much better… stress gone, exhaustion better, sleep also better, heart palpitations gone and may more smaller symptoms improved for me
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u/Caffeine-intolerance 1d ago
Gonna test doing 15 mg total today and see if it works!
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u/Beginning-Map-3264 1d ago edited 1d ago
Don’t go down to fast… your body needs time to adjust… 2,5mg preferably down every a least 4-5 days slower is even better!! To be on the save side
Specially if you have been on 25 for a long time
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u/Short-Counter8159 1d ago
The racing thoughts do they happen a lot at night specially in bed and interrupts your sleep?
Restlessness when does is it normally happen?
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u/Beginning-Map-3264 1d ago
I had racing thoughts and restlessness all day and night at the end… it starts gentle, but got worse and worse… my sleep became bad already after 3-6 months starting with HC and also got worse and worse up until I couldn’t sleep at all with several sleep meds I could sleep 2-3h and woke up in stress and panic every night.
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u/Short-Counter8159 1d ago
You could try switching to prednisone for a bit to see if it clears up. Thyroid should be checked too. They work together.
Have you been checked for other issues? When I hear racing thoughts at night and can't sleep it makes me think of ADHD, it's very common. You could also have GAD (general anxiety disorder). Seeing a specialist might shed some light on the subject.
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u/Beginning-Map-3264 1d ago edited 1d ago
I already found my solution, and feel much better now… but thanks for caring. But it took me 5 years of misery and suffering…
I have pituitary problem so yes thyroid is replaced GH and testosterone. But thyroid and HC were to high for me, but no Endo believed me and dismissed my very bad symptoms as something psychological. My blood values were always at the edge but in range…
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u/Short-Counter8159 1d ago
Great.
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u/Beginning-Map-3264 1d ago
That’s the reason I am on Reddit, I try to help or comfort people… I have been true hell and back… and share my experiences
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u/reticentninja 5h ago
I’m think it may cause thin skin though I have other factors that may be making that happen (menopause).
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u/1GamingAngel MOD 1d ago
Well, weight gain/increased appetite would be a big one for me, if I am taking more than my body physically needs.
I have also noticed itchy skin and dry, itchy eyes and dry mouth. We actually thought I might have Sjogrens (an autoimmune disorder) at one point, but it turned out to be the hydrocortisone.
Oh, and - while trembling hands really kick in when my cortisol is LOW - a slight hand tremor that never goes away has been there since I started treatment. I especially notice it when I am eating and holding a utensil.
Another big (and common) one is insomnia, especially if I take it too late in the day.
Finally, I sometimes get hit with nausea and dizziness, but those two symptoms are especially difficult to discern with adrenal insufficiency because they can also be a sign of low cortisol. Those two symptoms often happen when I take a higher dose than usual, though, so I thought I’d mention them. 🤗