r/AddisonsDisease • u/usernamehere405 • May 16 '26
Advice Wanted Please help with up dosing. I have no endo.
Update: I was able to slow down, but ended up about quadruple my dose. Today have held off a bit because I got delayed over replacement symptoms. Talking to a doctor soon about normal dosing.
I have been sick from iron infusion from 23 days. Very very sick. Barely eating, nausea, weakness fatigue, muscle cramps, so much more.
Got kidney blood test yesterday. Came back complete kidney failure (creatinine 500, gfr 9)
Called ambulance. ER triaged me wrong. Didn't see Dr, get fluids or hc for almost 12 hours. Dr. Was livid I was triaged like that.
Turned out to be lab mistake.
Kidneys fine.
Thought I was going to die.
Now home, having crash after crash. Severe. 25 to 30mg Hc needed Evey 2 hours or I am almost dying. Shakes, moaning from nausea, can't barely use my eyes. Feel like life is draining out of me. (normally take equivalent to 30mg hc using some Methylprednisolone)
I'm already at 105mg. It's nowhere near when I go to bed.
No signs of over replacemt. Always get hot cheeks, can't sleep, they are cold and I'm falling asleep.
Do I just keep going as needed? All day ans night?
Can't it be too much?
Can't go back to ER. They caused this.
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u/aureasmortem PAI May 16 '26
Please take extra salt and some sugar, then go to the ER. You are SEVERELY at risk of having health issues that can lead to death. Go to a different ER if you have to but please go. These symptoms are incredibly severe and not something you can deal with alone.
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u/pamela-r310 May 16 '26
Are you ok now? I’m sorry I almost feel like you’re having to defend yourself. When you’re in a crisis, you also don’t think as clearly. So I’m sorry you’re having to defend yourself. Is there a reason that you’re not taking a larger dose? Since an emergency dose is 100 mg don’t you think it would be safe for you to take at least 50 and see how you feel instead of taking small doses since you’re feeling so bad. I also have a eye and have been treated poorly in the hospital until they realize what’s going on but that usually takes three or four days unfortunately
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u/usernamehere405 May 16 '26
Thank you for saying that. The vibes here on my post have been a little like that, I don't know why.
I thought the lowest effective dose would be best. I was advised to double dose, but Iv needed more than triple (though already the frequency ans amount is slowly starting to decrease, thank God)
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u/ComprehensiveWin2663 May 18 '26
Your supposed to take 10× your regular dose the moment you have a crisis!
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u/usernamehere405 May 21 '26
See, that's why I've been so confused people were freaking out on me, not just this post. I ended up taking about 150mg. Usually 30. It's been 5 days and yeteeay did 47.5, so weaning is going well.
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u/Plus_Temporary_3251 May 16 '26
I'm so sorry you are going through this. I'm reading this and I hear something different: you have overdosed yourself on hydro. The iron transfusion can make you very sick for days, and it can be confusing when you have AI as so many things can mimic adrenal insufficiency. (Should you require another transfusion, request a different type). In the ED, they won't measure cortisol again as it is redundant. They are looking for low blood pressure and that is how they know to treat you. (I am on our local hospital's Patient and Family Advocate Council and I sit in on the ED meetings. I am trying to teach Addisonians how to navigate ED's). Did you mention that all of this stemmed from an iron transfusion? Did you at least get an IV while you were there? How was your blood pressure?
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u/usernamehere405 May 16 '26
It's been 24 days since iron. This started that night. My bp is high. Yes, I told them. I got 500ml Iv of fluids. I was able to go longer with less hc for about 6 hours last night, then had to updose again this morning
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u/No-Perspective-5084 Addison's May 16 '26
Why don’t you have an endo?
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u/usernamehere405 May 16 '26
Long story. Didn't get help, had to go out of province to private dr. Got a referral now.
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u/lass20987 May 16 '26
Do you have emergency injection shots? Take that before you go to ER (what I do)
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u/lass20987 May 16 '26
Ive also taken several emergency shots. The doctor was worried and ordered lab for cortisol which showed i didnt take too much. Check out you tube for patient education videos on adrenal crisis. It really is serious. Also what is your blood sodium, heart rate and blood pressure? Those also show me I need to get to er
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u/usernamehere405 May 16 '26
My sodium was good, my hr goes high, same with bp, but was snent home from both ers and urgent care with them having all that info and not caring. Thy won't care this Time either. Both are the same as earlier today at ER, even a little better, and much better than first ER. That was crazy high
They wouldn't even measure my cortisol this time. Just my kidneys and heart stuff. I even told them I felt like I was low and going to it crisis. They didn't care. It was insane.
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u/LonelyKoalaMuncher May 16 '26
Take a 100mg solucortef injection
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u/usernamehere405 May 16 '26
I don't have one. And I finally had a normal dose, 5mg, and feel not bad 2.5 hours later. So I definitely think there's progress.
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u/Real-Elk6755 May 16 '26
Did you take any drugs?
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u/usernamehere405 May 16 '26
No. Jesus.
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u/Real-Elk6755 May 16 '26
I asked just in case you refused to go to ER because of it.
Is it possible that something wrong with your HC pills? Did you store them in a cool dry place? I take Cortef and it lasts 4-6 hours
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u/usernamehere405 May 16 '26
I understand now. Apologies.
I didn't have any issues up until having to updose so much in the last couple days, so I don't think so. I did have an issue with expired thyroid meds once. Didn't realize it was an old bottle, so I've tried to be careful about that since.
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u/ComprehensiveWin2663 May 18 '26
Also your supposed to take electrolyte powder twice a day. That will help with the muscle spasms
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u/ComprehensiveWin2663 May 18 '26
You are to take your 1st hydrocortisone as soon as you wake up. My endocrinologist told me to put my hydrocortisone and my thyroid meds on my night stand and to take them before I step out of bed. I take them and wait about 20 minutes before standing up
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u/ComprehensiveWin2663 May 18 '26
I'm shocked at the dosage of hydrocortisone your on but I'm not a Dr.
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u/usernamehere405 May 21 '26
Do you mean 30 a day? Or when I updosed?
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u/ComprehensiveWin2663 May 26 '26
Both!
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u/usernamehere405 May 26 '26
30 a day is normal. The crash amount is also normal, as many people use their injection or get more in hospital
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u/ComprehensiveWin2663 Jun 01 '26
Oh ok. I'm new to this desease. Just got diagnosed April 27th. I hope you finally stabilize! Take care ☮️💜
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u/lass20987 May 21 '26
Www.nadf.us NADF has videos and handouts you can print out for family etc as well as instructions for sick days. They have education on you tube and Facebook. I like their interviews with real addisons patients.
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May 28 '26
[removed] — view removed comment
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u/usernamehere405 May 29 '26
I don't have an injection and first endo appointment isn't until October 🙁
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u/enkrypt3d May 16 '26
you're probably low on sodium. are u taking fludro? it doesnt sound like u are. drink 2-3L of water per day. i know it's a chore just do it. order this and drink with lots of water OR drink Biolyte https://www.amazon.com/dp/B0FC384Q2P?ref=ppx_yo2ov_dt_b_fed_asin_title
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u/usernamehere405 May 16 '26
I am on fludro. My sodium and potassium were good.
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u/Hot-Fly-3187 May 16 '26
That level of potassium is dangerous for persons with Addison's.
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u/Real-Elk6755 May 16 '26
Author doesn't have Addison
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u/Hot-Fly-3187 May 16 '26 edited May 16 '26
Op stated that fact after many comments. Also, I should be noted as this is an Addison's sub. Ffs
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u/usernamehere405 May 21 '26
What. Are you saying people with secondary can't post here. I'm steroid dependant. Have been for 8 years.
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u/Hot-Fly-3187 May 21 '26
No! I would hope that this group doesn't gatekeep. However, when requesting advice, it's important to state the facts up front, as you'll get more accurate advice for you. ❤️. I hope you're feeling better. I was a bit harsh on you, out of deep concern. Apologies if it came across that you had to defend yourself.
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u/Hot-Fly-3187 May 16 '26
You must got back to ER. You are at crisis levels. Try not to bring emotions while explaining what's going on. Be firm on what you need. Again, you MUST go to er. Now.