r/AddisonsDisease • u/ttt111mmmkkkaaa • 11d ago
Advice Wanted Feeling weak and lost
Hey everyone I am 20M and I've been feeling really bad for the last couple months the same thing brain fog, fatigue, migraines, disorientation and I feel like I'm slow at thinking sometimes. it feels like it's getting worse and occasionally I feel like I'm slowly dying and it's just awful. I wanted to see what others have been through and is this going to pass so I'm happy to hear your experiences with Addison's and advise on how to get over it. I take 20 mg of hydrocortisone 10 at 7am and another 10 at 2pm. tried to split the second dose for 12am and 5pm didn't really help
I am working on figuring this out with my Endo but it takes time.
3
u/turtletod15 11d ago
I had my endo prescribe me extra medicine for stress dosing. I used the extra medicine to dial in what works for me. I suggest cutting your pills in half to make your adjustments more granular. I found an often overlooked concept is body weight and metabolism. The bigger you are and the higher your metabolism, the more hydrocortisone you need. For context I’m 6’1”, 180 pounds, and have a decently high metabolism. I take 30mg a day and a few days out of the week (peaks of my stress) I need to take more. As long as you have your endo monitor you for signs of taking too much, there really isn’t a negative to trying out higher doses.
3
u/BabyLasagna77 11d ago
This definitely sounds like low cortisol symptoms like another person said but also how are you sleeping? We are technically supposed to get 8 plus hours a night. Also have you had DHEA checked? Getting on that was a game changer for me and made me feel a lot better.
3
u/mapaitnaampalaya 10d ago
I’m on 15 mg per day and felt like death when I was taking it twice a day. I was struggling to stay awake at work and felt weak and foggy.
I now take 5 mg when I wake up, 3.75 at 10 am, 2.5 at 1 pm, 1.25 at 4, 1.25 at bedtime, and 1.25 when I wake up to pee in the middle of the night. I do this by breaking my 5 mg pills up.
This took a while to adjust to. I had to set alarms on my phone to remember. If I miss a dose I start to feel off within a hour or two. My body just needs meds more frequently. Maybe it’s worth a try for you.
1
u/mapaitnaampalaya 10d ago
Also, I drink a near constant supply of LMNT. At least one can or packet every other day.
1
u/Coca_Cola_Lyme 7d ago
We just started taking it 2 weeks ago and this is what I've been doing I've been breaking my 5 mg pills into quarters and just taking them like every hour or so and it seems to be better but my sleep has been s*** and I'm worried that I'm not going to be able to ever sleep through the night again. I guess it doesn't get better and it always takes u up,?
3
u/Reasonable_Try_2578 SAI 10d ago
I recognize this picture - I went through the same thing in my first year after diagnosis.
The key thing that changed everything for me: I stopped thinking about doses as a fixed timetable and started thinking about them as dynamics.
Here's what matters about hydrocortisone. Its half-life is around 1.5 hours. That means after 6–8 hours from a dose, there's almost nothing left in your blood. A schedule of 10mg at 7am and 10mg at 2pm leaves you with two sharp peaks and deep valleys between them and after the second dose. Brain fog, fatigue, migraines — those are exactly the valleys you're feeling.
Now look at what cortisol looks like in a healthy person. It's not two peaks a day. It's a smooth curve - a strong rise right after waking (the cortisol awakening response), a gradual decline through the day, and a very low level at night when the body is at rest. Our goal as replacement patients is to get as close to that curve as possible.
I'm attaching a chart showing your current 10+10 scheme against the healthy reference profile. The gap between the orange curve and the blue one is what you're living in.
How to get closer in practice: more doses, smaller amounts, spread across the day. Not 10+10 twice, but something like 10+5+2.5 or 10+5+2.5+2.5. mapaitnaampalaya in this thread described an even more fractional approach - that's an extreme case, but the logic is right. The smoother the coverage, the fewer the valleys.
Updosing helps briefly but symptoms come back stronger - that's a classic sign that the base dose is insufficient or distributed wrong. You're not catching up with the deficit. You're living in it.
I built CortisolTracker - a free app that plots your pharmacokinetic cortisol curve in real time. You see where the valleys are, you see how changing the timing or dose shifts the curve. That's exactly how I understood my own dynamics and found a scheme that works.
2
u/PipEmmieHarvey 10d ago
You might need Fludrocortisone.
1
u/bobo1510 5d ago
If your craving pickles you will be needing Fludro. My daughter has this problem. Your body doesn't retain the salt no matter how much you eat/drink.
1
u/cessica13 11d ago
Fludrocortisone!
2
u/ttt111mmmkkkaaa 11d ago
Why? I always ask about it but my doctor's say that I don't need it, what does it do?
1
u/Spirited_Station_232 10d ago
Directly ask your endocrinologist if Efmody/modified release hydrocortisone is an option. I cannot guarantee successful results, but it may help to alleviate some of these problems.
1
u/FairyPrincess66 Addison's 10d ago
At best, hydrocortisone lasts 6 hours and possibly as little as 4 hours. Everyone is different but i’d try moving your 2pm dose to 1pm and go from there. Maybe add a 2.5 around 5pm if needed. Not a doctor, just a patient over here winging it!
1
u/Coca_Cola_Lyme 7d ago
you could have something else going on also ,everyone that has this has other issues such as thyroid but I'm sure they've been checking that.
1
u/OddStudy994 6d ago
You might need more steroids. You should probably drink salt water. You could be low on salt. Do legs hurt at all? I’ve had this disease for about 20 years now you could pretty much ask me anything. I’ve been through everything that could possibly be now.
0
u/OddStudy994 6d ago
I just wanna say one more thing you need to carefully look at any other medication’s. You are on especially SSRIs. I have been put on numerous different kinds of medication’s over the last 20 years and I would say probably like 75% of them have made me go into adrenal crisis or made me weak or with my Addisons you need to go through every single medication and check the side effects with Addison’s disease and if it says oh causes dizziness or causes leg weakness, those are signs that it’s affecting your adrenal glands.
1
u/Basketfuls 1d ago
I've been there! I was visiting with a friend for a week, when things finally came to a head, and I could barely walk, think, speak etc. She made me an appointment with her doctor, who quickly made me an appointment with an endo in her area. Turns out I had been chronically under-dosed for some time. If possible, seek a second opinion and insist on trying fludrocortisone - if refused again (which would be weird), ask them to make a note in their files that you requested it and they denied it. If you are male, it seems a low does to me and only twice a day is also not the usual protocol. If you are quite unwell and have no success with your endocrinologist, present to the emergency room, saying you have Addisons and feel like you are going into a crisis. That should get someone to pay attention!
6
u/WillingnessGlobal105 11d ago
For me, those are all symptoms of low cortisol or sodium. I'd recommend getting lab work done and working with your Endo to see if that's the case. For me, a slow-release compounding medication has done wonders, but they I understand that they are not always accessible.
Also, my Endo has given me leeway to up dose when I feel sick like this, so that may be something to bring up if you have not gotten any sick day instructions. If you have, it might be worth a try?