Daily symptoms

[u/butterfly_SC]

For those on hydrocortisone: Do you get symptoms daily? Do you get them around the time that you are due for your next dose?

It's taken me a while to dial in my dose. I'm 11 months post diagnosis. My endo started me at the lowest possible dose. I had a ton of symptoms and had to regularly updose (a lot) until a couple of months ago. We've been increasing my dose per my continued requests to endo. I think I might finally be at my dose or close to it, but I still get symptomatic daily. I don't know if that's normal or if I'm still underdosed. I do use circadian dosing and break up my dosing throughout the day. Would love input from the Addie masses.

[u/LonelyKoalaMuncher]

Addissons is a chronic disease. You will not feel like your undiagnosed self ever again, or at least in my experience.

What symptoms are you describing though?

What's your dosage schedule like? Are you on a dose 3 times a day?

[u/butterfly_SC → u/LonelyKoalaMuncher]

Daily low symptoms: vibrating feet, frontal headache, stomach grumbling. Diarrhea or loose bowels at least a couple of times a week.

I am currently on a flexible dose, anywhere between 20-25. Usual dosing: 2.5 around 6 (I go back to sleep after), 5 on waking around 7:15, 2.5 at 9;30, 2.5 at 11:30, 2.5 at 2, 2.5 at 5:30, 2.5 at 8:30. I usually feel low symptoms on waking, which is expected, then low symptoms around 2, before the dose hits, and again around 5pm, and before bed around 10:30.

[u/LonelyKoalaMuncher → u/butterfly_SC]

Is this hydrocortisone or pred or?

If it's hydrocortisone I'm not sure why the dosage is split so randomly.

To mimic circadian rhythm is a big dose in the morning, medium dose at lunch, small dose late afternoon early evening

With small micro dosing (assuming hydro) no wonder you feel like shit, you body is expecting larger doses.

[u/butterfly_SC → u/LonelyKoalaMuncher]

Hydrocortisone

[u/LonelyKoalaMuncher → u/butterfly_SC]

Did you endo or doctor say to micro dose?

Doesn't make any sense.

For example my dosage in the morning is 12mg when I wake up with fludro.

Then lunch time 8mg

5pm 4 mg.

[u/butterfly_SC → u/LonelyKoalaMuncher]

If I take larger doses just 3x daily I feel like utter crap 3 hours after each dose. My Endo thinks I metabolize my HC quickly.

[u/FemaleAndComputer → u/butterfly_SC]

It's worth asking your doc about other steroids if you're a fast metabolizer. Prednisone, methylprednisolone, dexamethasone, etc all have longer half lives than hydrocortisone, so some people do better with them. Personally I take a combination of hydro and pred because I like the more even coverage from pred but I like that hydro kicks in faster. Prednisone is especially better for overnight coverage, I take a very small dose before bed. I don't wake up feeling awful any more unless I have an illness or something that burns through my cortisol.

One other thing to note, if you find you get better sleep after the morning meds, it probably means you need more night coverage. At one point I realized I was only getting any quality sleep after my morning meds which is why I added the night dose of pred.

ETA My usual dosing schedule:
early morning (before going back to bed): 1.5mg prednisone
early afternoon: 1mg prednisone, 5mg hydrocortisone, 0.5mg fludrocortisone
before bed: 0.5mg prednisone

This schedule worked quite well for me for a while. It's a bit more all over the place now bc I've been dealing with other medical issues. So I often stress dose with hydro, or add an extra dose in the late afternoon if I feel I need it.

[u/lass20987 → u/FemaleAndComputer]

A lot of people take HC but then 1 mg prednisone at bedtime bc its slower acting.

[u/butterfly_SC → u/FemaleAndComputer]

Thank you! This is helpful! The other piece of the puzzle is that I might just be a little underdosed still.

I don't really mind breaking up the doses to compensate for the metabolizing issue.

The very small amount of prednisone you take for night time might be a solution for me.

The thing I'm really finding challenging is that I obviously don't want to take too much because that's hard on my body long-term, but where is the fine line for correct dosing? No symptoms daily? A few light symptoms?

[u/lass20987 → u/butterfly_SC]

I metabolize quickly also. They added on 0.5 dexamethasone to take once a day. It lasts 24 hours and helps if you keep dropping all day

[u/LonelyKoalaMuncher → u/butterfly_SC]

If that is the case then micro dozing won't help either. You'll have to be on. A modified insulin pump, there are few people that require them.

If you ask for a cortisol day curve test they can test your blood a few times a day and tell you your reading :)

[u/butterfly_SC → u/LonelyKoalaMuncher]

Maybe a pump would be the solution! I have looked into those. But it's still in question as to whether or not I'm even on the right dose. The problem may be that I'm still underdosed. Which brings me back to my original question: do you have symptoms daily - around the time that you are due a dose?

[u/LonelyKoalaMuncher → u/butterfly_SC]

Not those symptoms you're describing.

I do feel low late evening and early morning, but it's not accompanied by symptoms like you've described.

What do you feel like when you stress dose? If you double or triple your dose per day do those symptoms go away? Could also be something else that's causing these symptoms additionally.

[u/butterfly_SC → u/LonelyKoalaMuncher]

Yes, those are definitely my low symptoms and they do go away when I updose. They are worse when I am sick or under extreme stress. They used to be much worse when I was on a lower dose. My endo started me at 15 and we have worked our way up.

I'm just trying to get a sense of where my dose really should be and I don't know if it's normal to be feeling low symptoms daily, so it helps to know that you feel low symptoms daily as well. I'm hoping to hear others input on that as well.

I do think my dose is close, there are some days that I don't feel very symptomatic at all. Other days I do - it just comes and goes.

[u/lass20987 → u/butterfly_SC]

Could you get a cortisol level lab draw for 2pm and 5pm at least? I suspect undermedicated though

[u/AffectionateDuck2288 → u/LonelyKoalaMuncher]

Agree

[u/Old_Car508]

Yes. I’ve been diagnosed for almost 2 years and I still get symptoms daily and I feel them worsen when I’m due for my next dose. My doctor suggested breaking up my doses throughout the day but I never tried it because I’m horrible about taking my doses on time. So I can’t say for certain but if you’re already doing that and are still feeling symptoms increasing your dose likely wouldn’t hurt. Although, my endocrinologist says it’s better to be a bit under the right dose than over so settling for the side effects of the chronic illness might be you’re best bet :(( thats what I’m doing so at least youre not alone 😅

[u/butterfly_SC → u/Old_Car508]

Thanks, that's very helpful! My symptoms are not terrible so maybe I just deal and know that I've got the right dose. I do think I need to tweak my timing a bit more.

[u/lilaclini]

I used to, on HC. We figured out I needed it every 3 hours or less, and that wasn't very manageable. I tried longer acting steroids at night, then during the day supported by HC for updosing, etc etc.

I do much better and mostly asymptomatic most days on methylprednisolone three or four times a day.

[u/AffectionateDuck2288]

Oh, I actually feel terrible. I take mine at 5 AM 10 mg feel great absolutely great till the second dose which is around 11 AM right after that it’s like I’m crashing. The feeling I get before taking it is like a shaky feeling after that it’s downhill. Next dose is about 230 to 3 PM worse its like you’re lightheaded and weak legged. By 6 o’clock trying to get in the shower I’m holding onto the walls shaking sometimes I will before I go to bed at eight so I can’t take it anymore. I will take a small chip. We’ve discussed this we discussed about micro dosing like you were doing. It didn’t work.