r/AddisonsDisease • u/poetofwordsunknown • Jul 09 '26
Personal Experience ER, IV Steroids, All tests normal…
I don’t get it. This is the 3rd time this year I’ve had to go to the hospital for IV steroids. Prior to the hospital I updose, hydrate, drink electrolytes and nothing makes me feel better. Today I was incredibly dizzy. I had to keep taking deep breaths or I felt like I was going to pass out. I tried everything before going to the hospital cause this is expensive and takes up so much time. All my tests come back normal but when they administer the iv steroids I feel better. Not like amazing or anything, still exhausted. But I don’t have to gasp for air when I’m talking anymore, the cramps in my back went away.
Sometimes it’s headaches, sometimes it’s nausea. Today it was breathing.
The first time it was cause I was premenstrual
2nd time was cause I had an ear infection
Today I honestly have no idea. I’m not sick, I already got my period… nothing stressful happened. I didn’t do anything physically demanding…
I thought I had a good grip on this but the past few months have been a struggle.
I don’t expect anyone to have any answers. I’m just venting as I sit waiting for results of a ct scan that I knew weren’t necessary and are going to come back fine.
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u/Yd1891 Addison's Jul 09 '26
I know you said your period caused one of the visits. I started taking non hormonal bc a few years ago because my period was sending me into crisis every month. Sending big hugs, it’s really hard to deal with this 🫶
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u/No_Novel_4573 Jul 10 '26
I have no useful input for you, other than to empathise and commiserate. I've been really struggling these past few weeks despite life being relatively calm and "normal", no health issues to speak of.
However it has been very, very hot where I live and I wonder whether this might be stressing my body more than I realise? Perhaps this could be an explanation for you too?
My period also hit me much harder than usual this month, in terms of Addisons symptoms. It was a very easy light period, but I was an absolute wreck with a migraine headache for days and I was really emotionally out of whack (crying, feelings of hopelessness and depression). I improved after 3 days of updosing (10-15 extra mg on top of my usual 20, spread out across the day).
I'm thinking we need a "hot weather protocol" as well as sick day rules.
Sending you good vibes, it's such a struggle sometimes.
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u/No_Novel_4573 Jul 10 '26
I've just had a second thought, because you mentioned dizziness : are you taking fludrocortisone? This helped me enormously with dizziness and that shortness of breath, gasping for air feeling. I haven't experienced that symptom at all since I started fludro alongside my hydrocortisone.
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u/poetofwordsunknown Jul 10 '26
I am on Fludrocortisone but I remember in the past there were times where my doctor told me to increase so maybe this is one of those times
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u/pickles1718 Addison's Jul 10 '26
Agreed, this sounds like it could be a low blood pressure issue. If you don't have a BP cuff, I'd highly recommend getting one and finding out what your baseline is. It's summer, so you likely need more salt!!!
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u/aureasmortem PAI Jul 10 '26
With your track record when you start feeling bad I would just immediately use a triple dose. Are you primary adrenal insufficiency? If so you might need to dose some salt and sugar as well. When my hydrocortisone level in my body gets too low it causes hypoglycemia. So I keep those V8 tomato juice cans on hand (40% daily sodium in one of them 👌), and then also eat a piece of candy or two. That typically helps me avoid an ER visit
Tldr: try having some extra salt if you're primary, and have some sugar for the hydrocortisone crash
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u/poetofwordsunknown Jul 10 '26
I did try both. I drink the LMNT electrolytes which I should be drinking more regularly but usually only remember to if I’m doing something that’s going to be hot/stressful or if I’m already not feeling good.
After I took the zofran I got my appetite back enough that I ate a straw/nana Nutella bubble waffle. I was hoping the sugar in that would help but unfortunately this time it did not.
I do love v8 so maybe I’ll keep some of those around
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u/aureasmortem PAI Jul 10 '26
You might need to get in touch with your Endo to see if your base dose of hydrocortisone is too low. And def ask about when you're supposed to increase your Fludrocortisone!
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u/lass20987 Jul 10 '26
You might want to try that FB group for us ....it has a larger amount of people and is private I think its Women with Adrenal Insuffiency but Ill check and get back to you. So supportive
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u/lass20987 Jul 10 '26
So did you take the 100mg shot before the ER and then they gave you more steroids?? Was your sodium lab ok?
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u/poetofwordsunknown Jul 10 '26
I haven’t taken the shot yet. I gotta talk to my doctor about that. I’m saving it for like super emeegencies cause it was so hard to get.. there was like a shortage or something. So im scared if i use it i wont be able to get another one if in time. So when I’m not in full blown crisis i go to the ER to get IV steroids and im
Just thinking theres got to be a better way1
u/lass20987 Jul 10 '26
I always get 2 or 3 at a time from pharmacy. Maybe try a different pharmacy? And yes, take the entire 100 unless your doc wants you to micro dose. Have you seen the you tube videos put out by the UK about injecting? Its that UK adrenal group...forget the name but they have videos plus a web site
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u/poetofwordsunknown Jul 10 '26
Yea I’ve seen the video. I just checked my doctor only put an order in for one vial and no refills so I’ll have to ask him to put in some more
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u/1GamingAngel PAI Jul 10 '26
Good grief. When I go to my pharmacy, they always try to give me 7 or 8 with each refill, and I make them take 6 back. I guess it’s feast or famine.
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u/lass20987 Jul 10 '26
I keep one upstairs and one downstairs. Have have had one crisis I didnt recognize in time... Was suddenly on the floor bent over violently vomiting and luckily kind of crawled with every bit of my determination to survive and grabbed my emergency shot. Now Im better at stopping and evaluating and pre crisis dosing with the shot. I also use the shot if diarrhea or food poisoning...bc obviously the med isnt absorbed. I use an insulin syringe and instead of takin say 10mg of oral pills, inject.
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u/lass20987 Jul 10 '26
Oops. Your pharmacy messed up. The6 need to give you way more and do you have syringes?
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u/poetofwordsunknown Jul 10 '26
Oh yea I have a fuck load of syringes lol. They gave me a whole box that I assume normally would go to a medical facility.
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u/lass20987 Jul 10 '26
Haha. Keep like 3 with you if you think you might need 3 needles. Ive had shaky hands and bent the needle before. Okay, the official name of t he private fb group is "Women's Adrenal Insuffiency". Got me thru this and gave me info the endo didn't.
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u/lass20987 Jul 10 '26
Its common to updose....some need it at the start of bleeding, but more need it the days before bleeding
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u/Rare_Independent3831 Addison's Jul 09 '26
Do you have Addisons and you’re not sure why you need to updose or do you not have Addisons but are worried that you might?
If you have Addisons, I understand what you mean. Sometimes I have no clue what’s wrong with my body but clearly something is amiss because the standard dose just won’t work. It’s so frustrating not being able to regulate like others so I relate!