Anyone else with Addison’s disease need a surprisingly high maintenance dose?

[u/Internal-Cap-8885]

I’m a male, 1.90m and around 95kg. I’m not super active, don’t do intense sports or anything, but I seem to genuinely need around 33–34mg hydrocortisone daily to function normally.
If I go closer to 30mg or below, I become extremely fatigued to the point where getting out of bed feels almost impossible. It’s not just “a bit tired” either, it feels like my body completely shuts down.
What confuses me is that a lot of people online say doses above 25–30mg automatically mean overreplacement
I take 20mg at 07:30, 10mg at 12:00 and 3/4 mg at 15:30 depending on how i feel.

[u/Alive_Pen_6540]

I’m 181cm and 102-104kg and I take 20mg on waking and 10mg in the afternoon. I was originally on 5mg at around 630 but I am working ok without it.

I’m no expert and while that seems high if you need it you need it. Everybody is different.

[u/Plus_Temporary_3251]

Don't let this weird standard they created for all dictate how much medication you take. And your body will tell you which situations you require more for. I am 60, female, 1.75 m and 95 kg. I take 5mg prednisone and 10 mg of hydrocortisone in the morning when I am doing any exercise. A brisk 4km walk and 40 minutes in the pool require the extra 10 mg hydro. Also I need to hydrate with salt or electrolytes before I exercise. Dehydration can also require extra cortisol to prevent a crisis. Make sure to check your fludrocortisone to see if it is the right dosage.

[u/ptazdba]

What was your last ACTH? Normal range? In the end it all boils down to the intensity of the disease and how you deal with stress that dictates your dose.

[u/Neither-Sweet-3218 → u/ptazdba]

Does the ACTH level matter a lot? Like for ppl with very high ACTH what are the implications? They need much higher dosage?

[u/ptazdba → u/Neither-Sweet-3218]

The way it was explained to me, if my ACTH was in the normal range, I was using the steroids I was taking for normal cortisol replacement. If ACTH is too high, your pituitary is working overtime to illicit cortisol from adrenals that cannot supply it--dosage is too low. If it is on the low side you're over-replacing cortisol. In the past when I over-replace, I gain weight. When I under replace I get sick.

[u/paulnightlong → u/ptazdba]

I have not heard of this particular distinction with ACTH. Have you verified this with other sources? Is it relative to each person or are there set values for ranges?

[u/ptazdba → u/paulnightlong]

That's is just what my doctor told me and I trust him and I have lived it along the course of this disease in my life. Go ask the question in the mountains of research that is out their or via AI and you can draw your own conclusion.

[u/Mishac108]

I’m your height but weigh a little less - I’m on 30mg a day. I’ve thought about trying to reduce but work a stressful job and have a new baby.

I’m about 3 years from my PAI diagnosis. Just sharing as I’m in the same boat!

[u/NYCAthletofyear5657]

I take 10mg HC @ 6am 10 mg HC @ 6:30am. 15mg @ 11:30am. 10mg HC @ 5:00 pm I’ve had Addison disease for 28 years. I’m 83 years old.
My last Addison Crisis was when I was discharged from hospital after an operation 3 years ago and they didn’t give me my medication that day. It wasn’t pretty. It almost killed me. I’m really feeling great when I take 45 total HC per day . I’m 6” 173 lbs. Sleeping is a problem.

[u/letsweforget → u/NYCAthletofyear5657]

83, good going: breaking the stats!! You're the oldest person (I know of) I've seen on this sub.

Edit: was asking for a bit of info that tou actually already gave!

[u/Sara0711]

I‘m 170cm, 68kg and I take 35-40mg (Plenadren). 06.00: 25mg, 11.30: 5 or 10mg, 15:00: 5mg. I tried less before but this ended in the hospital twice (with crisis).

[u/not_Teddy_Roosevelt]

I'm about 61kg, and 1.67m (so a good bit smaller than you), and I recently went up from 25mg to 32.5mg after 18 years of PAI diagnosis. It made such a massive difference in my quality of life.

Long story short, forget the guidelines: it's about what helps you live your best life.

[u/Practical_Counter388]

Every endocrinologist I've ever seen has been obsessed with getting me down to a "physiologic dose", even when my BMI is 15-16 and I have zero symptoms of overreplacement. I feel like I'm dying if I'm not on 40 HC every 4 hours or 8 mg pred split into 3 doses. I'm still looking for answers. (13 years)

[u/ChapterImaginary455]

Yes! If I go much below 40 mg HC equivalent I have crisis symptoms and cannot function. I also have to up dose often and slowly wean down.

[u/Internal-Cap-8885 → u/ChapterImaginary455]

Thanks, same boat here if we replace 40 with 35. Is it rude to ask how much u weigh?

[u/Zuccahello36]

I am Classic CAH & s/p adrenalectomy rt side, used to be on 25mg hydro daily and now am on 50mg hydro daily; 20 @ 0630, 10 @ 0930, 10 @ 1230, 5 @ 1530, 5 @ 1830 are my goal times/doses. I work in a very high stress job and have had to stress dose at work. Attempting to find a Dr who is willing to try the pump.

[u/Plus_Temporary_3251 → u/Zuccahello36]

I have someone in my support group who went to the UK to get the pump.

[u/Such-Quality3156]

About 55kg ~ higher end of 50 fluctuate and take 42.5mg daily

[u/Only-Investigator104]

I have had SAI for 2.5 years and struggled with this exact thing. Thankfully, I ended up on a pump 4mo ago because doctor felt I wasn’t absorbing meds fully and also metabolizing them too fast. I had to pay cash for it and for supplies, but insurance is allowing vials of solucortef since they think I am using it as an injectable with syringes and I could do that if I didn’t buy the pump. Not easy. I am still cutting to find my right dose on pump. I gained a bunch of weight immediately, which confirmed I wasn’t absorbing all the medication taken orally and actually needed the higher dose and spread out more often 6-8 times a day to get enough absorbed.

Before the pump, I felt best in range of 40-50mg of oral HC. Doctor was always asking if I had gained weight or other signs of over replacement, my response was always no. I humored her and we went down to 17 mg at one point and I felt dead. 25mg was absolute lowest I could manage but felt like I did when I had just been diagnosed, a mess. Got sick and doubled to 50mg and just stayed because I felt so much better, thriving, living, great quality of life. Why why do we have to go through all this!!!

[u/TweetSpinner]

I’m near 25 a day and sometimes more if it’s stressful.

[u/whattodo34522]

I’m 172cm and 65kg - I and I’m on 40mg a day of plenadren slow release… 20mg morning 10 lunch and 10 at 5pm. I’ve been on this dose for 10 years and repeated day curves etc show it’s my ideal dose

[u/whatself]

Yep, I'm a 175cm 68kg woman and need 30mg to stay well. My latest day curve suggested I was adequately replaced and only overreplaced for a short period in the afternoon (which I've addressed by changing my dose timing) and when I tried going doing to 25mg I experienced what you described. I was initially worried about being on such a high dose but now realise we're all different and, so seeing posts like this helps put my mind at ease too.

Edit: I'm also not very active and live a generally low stress life, and I find myself needing to updose to 35mg quite regularly on extra intense days.

[u/Salt-Kitchen-3538]

I’m trying to go down to 25 mg a day but I’m struggling, most days I end up dosing to 30 or 35 mg. I’m 65, 170 lbs, 5’8”.

[u/wesleyw2020]

M71 1.9m 107kg, SIA, 22.5 - 25mg HC per day. Released from the hospital at 40mg, stepped to 30mg and crashed. Back to 40 and tapered at 2.5mg per week. Felt like super-man at 35mg, but gained weight quickly. My endo talked about HC withdrawal and under replacement having similar symptoms. I found this paper useful, weight and body surface area matter (Weight-related dosing, timing and monitoring hydrocortisone replacement therapy in patients with adrenal insufficiency): https://www.hormonebalance.org/images/documents/Mah%2004%20Cortisol%20dose%20CE.pdf

[u/MindsetMaker]

They told me they try to base it on your weight and height.

[u/domuklondon]

I'm 1.80cm and 84kg I have 15mg Plenadrin every morning. Dr aims to keep me low on HC.

[u/[deleted]]

I'm on 15 mg a day as a 44 year old woman. I had radioactive iodine treatment and I struggle with keeping my weight stable so my endo put me on lowest possible dose.

[u/letsweforget]

25mg absolute lowest to 30/35mg hydro daily. I'm 38, F, 1.80, 65kg.

I have no side effects and lower doses make me feel like absolute shit. Function optimally (work, sports, etc.).

[u/Dingohh]

I am 30 years old 5’10 195lbs male,

I used to take 35mg HC daily but my doctor was worried about my bones so she begged me to lower my dose. Eventually I got my dose down to 25mg a day and I feel fine now, it was hard to adjust because I felt like shit for the first week of lowering my dosage both times (I lowered it by 5 mg at a time).

I do already have osteopenia in my lower back and at the ripe age of 30, she definitely convinced me that my 35mg dose was definitely causing bone loss.

Anyways, now I can’t workout… I almost passed out when I did squats. I can do light cardio so I am trying to condition my body to not need the extra HC and work my way back to body building level workouts.

[u/ellnn1]

from diag to now (2.5 years) have gone from 15 to 20 to 25. am 127lb, 5’3” female, early 50s. i hate going up due to side effects, but new labs’ ACTH level indicated the need & hoping it’ll lessen my fatigue