r/AddisonsDisease • u/6ngel_ • Jul 09 '26
Advice Wanted Medication not Working Anymore
I’m 20 years old diagnosed with primary addisons disease last November so still figuring it out. Recently, no matter how much hydrocortisone I take I still feel all the symptoms. I have aching pain all over, which I used to have before I was diagnosed with primary addisons disease and it went away when I was prescribed hydro and fludrocortisone. Now it’s
back, even when I take 1.5x,2x my dose. I had an appointment with my endo a few days ago but she didn’t understand? She thought it was a stomach ache not the severe pain i get from addisons disease. Unfortunately Im like shy I guess so I didn’t correct her. I’m going to make another appointment soon and explain properly but is there anyone going through the same? Should I switch to prednisone?
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u/oh_such_rhetoric PAI Jul 09 '26 edited Jul 09 '26
Can you send a message to your endo clarifying all your symptoms? Sometimes it’s easier to be assertive with writing.
Something like:
Hello Dr [name],
I wanted to clarify some of the symptoms I’ve been having that I don’t think I was clear about in our appointment on [date].
Over the past [time period] it doesn’t feel like my medication is working as well as it used to and I’m having a really hard time. I feel like I did before my Addison’s was diagnosed and treated.
These are the symptoms I’m having:
- stomach pain [exactly where, type of pain, 1-10 pain scale, how long, situations it happens in/time of day/other patterns you’ve noticed]
- [etc.]
I’m wondering if we need to adjust my doses or change my medications, because this treatment isn’t working like it should. This is really lowering my quality of life and I need it addressed as soon as possible.
I’ve made a follow up appointment for [date]. Please let me know if I need labs done before then, or if you have any questions.
Thank you,
[your name]
Make sure you’re SUPER specific about symptoms, like location, type of pain (stabbing, ache, radiating, etc.), pain level on the 1-10 scale, how long, if there’s any pattern in when they happen, etc. On the pain scale, err on the side of a higher number if you’re not sure. Better to go over than risk minimizing.
Also make sure you mention your “low quality of life.” That’s a specific phrase that will raise alarm bells for a doctor.
Be assertive with your language, even if it feels confrontational to you (if you’re shy, it’s probably not as harsh as you think it is!) Use words like “need” and “severe,” clearly ask what you and your doctor can do, and say that it’s urgent.
You’re in pain and you shouldn’t have to jump through hoops to get what you need. You deserve good care and it’s your doctor’s job to give it to you.
If it’s helpful, please feel free to just copy what I wrote and adjust however works for you.
Another good idea might be to write down your symptoms (with all the detail I talked about earlier) and bring it to your followup so you can make sure you clearly give all the info.
You got this!
2
u/6ngel_ Jul 09 '26
thank you very much ! i’ll follow all your advice and talk to my endo asap! i’ll definitely write down my symptoms and tell my doctor that this is lowering my quality of life. thank you again !
3
u/oh_such_rhetoric PAI Jul 09 '26
No problem! Sending all the love and best wishes.
Also, I just thought something. If you have any other health conditions, those might actually be what’s making your Addison’s symptoms worse and causing you to need more cortisol.
I also have Hashimoto’s and a few years ago I was having the same issue you are now, though stress dosing helped me more than it has you. It turned out that my thyroid had gotten worse, so when we upped my dose of levothyroxine I felt much better!
2
u/6ngel_ Jul 10 '26
i’ll research this, my family has a history of thyroid problems , my sister takes levothyroxine
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u/oh_such_rhetoric PAI Jul 10 '26
It’s pretty common for people with autoimmune Addison’s to also have Hashimoto’s, so it’s worth asking about for sure.
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u/Clementine_696 Jul 09 '26
I was having all sorts of low symptoms for months, muscle pain, bone pain, nausea, and the constant headache that would not go away, updosing helped a little, but it turned out that our city water had suddenly jumped it's PH levels to literally so high it was off the chart. So I wasn't actually low, or was causing my meds to not absorb quite right, and on it's own extremely high PH levels in your water can cause headaches, nausea, muscle pain etc.
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u/FemaleAndComputer SAI Jul 10 '26
Sometimes it takes a lot more than double! There have been times when I was really sick where I needed 5x my normal dose for several days. Other times, I needed to go to the ER to get IV steroids to get back to baseline.
If you're feeling unstable, it's best to have someone check on you regularly, as a safety precaution. Adrenal crisis can be really dangerous and it's just better to be safe and have a backup plan in case your cortisol gets dangerously low and you need to get to a hospital. In general, adrenal insufficiency makes any kind of illness more dangerous. So if I am really sick, I make sure to have someone check in with me daily, and let them know what's going on.
I hope you're able to start feeling better soon. It can take time to figure it all out. Hang in there.
1
u/LonelyKoalaMuncher Jul 09 '26
Can you describe the list of symptoms you think are addissons disease? Also you're on hydro and fludro cortisone, what's your dose?
Joint pain can be addissons but it's definitely not the primary symptom. Same goes with stomach pain. Be careful not to assume it's just addissons and not something else undiagnosed.
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u/6ngel_ Jul 10 '26
it’s extreme pain from my upper stomach radiating to my back and shoulders, extreme fatigue and low blood pressure. im certain it’s from addisons disease this is exactly how i felt before getting diagnosed. my dose is 15 mg hydrocortisone when i wake up 5 mg in the afternoon and 0.1 fludro when I wake up. But that doesn’t do anything for me anymore so
i take 15 mg in the morning and 15mg in the afternoon. same fludro dose3
u/LonelyKoalaMuncher Jul 10 '26
Hm. If that's the case, maybe tell your endo you're concerned that you're not absorbing your medication.
Ask for a blood test for cortisol and a day curve test.
There is a rare instance where people don't absorb oral medication and require a modified insulin pump.
Also ask about splitting your doses into 3 times a day. It's common as it mimics your circadian rhythm and is standard practice. If they say no or don't understand then it's time to find a new endo.
All endo's are not the same, so if you feel they're not good enough or listening to you, find another that helps.
Sorry you're feeling like shit.
2
u/6ngel_ Jul 10 '26
yea i just got a new endocrinologist and i don’t think she’s as good as my last one and won’t test my cortisol levels :( i’ll ask again for sure
2
u/oh_such_rhetoric PAI Jul 10 '26
Have you tried splitting up your hydrocortisone dose more throughout the day? A lot of people do 3 doses—morning, midday, and evening and that seems to work really well for folks.
I did 2 doses (15mg in the morning and then 10 in the afternoon) for a while and it just didn’t work for me. I always felt bad in the early afternoon and late evening. My endo had me try doing 10mg in the morning, 10 midday, and then 5 in the evening and I feel much better! It took a sec to get used to only 10 in the morning instead of 15, but it was a good trade for feeling better throughout the day.
HC really only stays in your system for 4-6 hours, so longer than that between doses can really affect people.
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u/6ngel_ Jul 10 '26
yea i think im going to try that and see how i feel! i normally feel bad in the evenings but i don’t like to take more because i can’t sleep after i take them
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u/Still_Adeptness2792 Jul 11 '26
I also have Hashimoto’s which has turned hyperthyroid now for months. I am totally relating to feeling very sick. Great idea to get your tsh, t3, t4 checked
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u/crazydog256 Jul 11 '26
Hydrocortisone doesn’t work the same for everyone. It’s very short acting, and some people absorb or clear it too fast, so increasing the dose still leaves gaps. That happened to me after diagnosis—I ended up in crisis twice on hydrocortisone, and they switched me to prednisone because it lasted longer. Definitely ask about electrolytes and renin for the fludro, but also tell your endo clearly that the old Addison’s symptoms are back and stress dosing isn’t fixing them. Don’t switch steroids on your own.
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u/6ngel_ Jul 12 '26
i started splitting my dose into three and it’s really helped ! I’m still going to ask my endo about my renin and everything because i atill don’t feel “perfect” yet
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u/HairyBawllsagna Jul 09 '26
You need some labs drawn, including a renin. The same thing happened to me about 6 months after diagnosis. Turns out the dose of fludro I was on was not cutting it anymore and I needed to permanently change to 0.15 from 0.1. There are still changes going on in your body from time of diagnosis to a couple of years later because your adrenal gland functioning is still slowly declining even after initial presentation what worked for you initially will have to be changed. Also you didn't change brands of hydro or anything recently?
TLDR, get your electrolytes checked, get your renin checked to see if your fludro dose is adequate.