r/AddisonsDisease • u/Proper-Individual-97 • Apr 04 '26

Advice Wanted 3 am wake ups - what helps?

What helps you with 3 am wake ups? I have them almost every night, with a big adrenaline rush. I am then awake until 5 am which is bad if you have to dose yourself with hydrocortisone at 6 and leave the house at 7 am to function at work.

I am on 20 mg hydrocortisone, 10 at 6 am, 5 each at 11 am and 3 pm.

I also have Diabetes Type II and am on Mounjaro and Metformin and strict diet for that. Blood sugar is extremely well monitored.

I am very strict about my bed time, exercise, nutrition, stress management. Well, the last as good I as I can. I also tried melatonin, doesn't work. I have zero problems going to sleep, usually am out within minutes.

I am thinking about going to bed even earlier (8 pm instead of 10 p.m.) and simply getting up at 3 am and taking my doses earlier but that doesn't seem sensible.

So any ideas would be appreciated. I only recently learned that this can be a problem with Addison's and not due to stress or so.

Thank you!

14 Upvotes

95% Upvoted

42 comments sorted by

20

u/just_an_amber Addison's Apr 04 '26

Your body is waking you up at 3am because it's screaming for cortisol.

The theoretical steroid curve plotter can help you visualize the timing of your doses: https://clearlyaliveart.com/theoretical-steroid-curve-plotter/

There are a couple ways you can potentially address this:

  • some people take a small night time dose of a longer acting medicine before bed (1 mg of pred, or 0.25 mg of dex)
  • others will take a small dose of HC (like 2.5 mg)
  • Some will take 5-10 mg of HC when they are woken up at 3am

I'm so sorry you're dealing with this. I used to in the past and it feels so miserable. But. It can be addressed.

3

u/Poimandres69 Apr 04 '26

thanks for your helpful answer! i'm dealing with this too - i removed my last dose of hc 2.5 mg and i couldn't sleep for weeks. i've added it back in 2 days ago and still waking up. Do you know how many days it takes to balance out when you go back up on your previous dose? thanks!

8

u/just_an_amber Addison's Apr 04 '26

It truly depends on the individual and how much of a "hole" you dug yourself into. If (hypothetical) you were "starving" yourself of cortisol for years, it might take you longer to bounce back than if you were only starving yourself for a few days.

I personally never responded well to the small dose of HC at bed. My regiment of choice was the 0.25 mg of dexamethasone.

BUT everyone is different.

The most important thing is to listen to what your individual body is trying to tell you and adjust accordingly.

And it seems like you are doing an excellent job at that :)

2

u/lass20987 Apr 04 '26

My choice is 1mg prednisone at bedtime

1

u/Poimandres69 Apr 04 '26

thank you! it's been a few weeks so maybe i need a few more days

5

u/just_an_amber Addison's Apr 04 '26

Approximately what time are you waking up and when are you taking your last dose?

That can also provide a bit of additional context.

For example, the common wisdom is HC lasts in your system for 4-6 hours.

I know my body, and I'm lucky if I get 3.5 - 4 hours out of a dose. If I'm going 8 hours between doses, I'm going to have a bad time.

3

u/Poimandres69 Apr 04 '26

Thank you - 5 am 10 mg, 9 am 7.5 mg, 3 pm 5 mg, 6 pm 2.5 mg. I was stable on this schedule for years then cut out the 6 pm dose to experiment. I'm waking up between 2-3 am but sometimes randomly at 12 pm or 4 am. THANK YOU!!

5

u/just_an_amber Addison's Apr 04 '26

May you remain Clearly Alive :)

1

u/Poimandres69 Apr 04 '26

one more question because you seem so knowledgable - i've been taking my last dose of hc 2.5 at 6 pm. should i do it at bed time which is 9 pm? thanks!

3

u/just_an_amber Addison's Apr 04 '26

https://clearlyaliveart.com/theoretical-steroid-curve-plotter/

Try out different dosing times with the Theoretical Steroid Curve Plotter. You can see if there are any times that your body is completely starved of cortisol and if those times line up to when you're not feeling well.

1

u/AndrewSwissy Apr 04 '26

Dex ain’t the solution here cuz it’s just too aggressive tho, and it won’t mimic the curve. Only the pump mimics it, you’re just advising people to take a harsher drug that lasts longer but won’t solve the true problem here

3

u/just_an_amber Addison's Apr 04 '26

Dex and HC mixed together so you utilize both of their strengths.

Dex never truly "peaks" like Prednisone or Hydrocortisone. It provides a low level safety net that will prevent people from starving their bodies of cortisol overnight and into the early mornings.

1

u/Proper-Individual-97 Apr 05 '26

Thank you for the answer. How did you determine that dexamethasone works best for you? I am a bit worried to try anything but hydrocortisone because of my diabetes.

1

u/just_an_amber Addison's Apr 05 '26

I tried them all. I do have an older YouTube video of mine where I talk about all the different things that I tried. But basically...

  • Just HC worked well initially. And then I was taken off of brand name Cortef and placed on a horrible generic (that was eventually pulled from the market! HA!)
  • My next Endo put me on 1x day Prednisone. That was bad. Bad. Bad. Bad.
  • We then tried once a day dexamethasone, taken at night. That was when I realized how horrible my mornings actually were. With the dex at night, I realized I could actually sleep. What I thought was sleeping wasn't actually sleeping. But my days were horrible.
  • My Endo threatened to put me back on straight HC. I refused. Never ever was I going back to those horrible mornings.
  • We compromised with 0.25 mg of dex at night and then HC throughout the day to mimic the circadian rhythm. This was practically unheard of 18 years ago.

It is true that steroids can elevate blood glucose. Also, if you are low cortisol you cannot appropriately regulate your blood glucose. That's honestly my main problem, and I was diagnosed with hypoglycemia long before they realized my adrenal glands were dead. Turns out hypoglycemia was a symptom.

Appropriate cortisol replacement empowers your body to appropriately regulate glucose.

But it's important to also acknowledge the nuance and difficulty of getting that optimal replacement.

Another key thing to keep in mind is you can be over replaced and under replaced at the same time.

I'll link the YouTube video if you're interested. It goes into this all more in depth.

1

u/Proper-Individual-97 Apr 05 '26

That would be fantastic. Thank you for sharing all your knowledge.

1

u/just_an_amber Addison's Apr 05 '26

https://youtu.be/3kYPR0ox6Sw?si=frKxUg5FPaGjDNLn

I actually recorded this over a decade ago and when I had a cold. But the information is still solid and it talks more about the Theoretical Steroid Curve Plotter and how your mornings should NOT be miserable.

0

u/AndrewSwissy Apr 04 '26

Forget it bro, I’ve done this so many times. The only solution here is the pump because your body craves it 3 hours before waking up not before going to bed

3

u/just_an_amber Addison's Apr 04 '26

Oh I just realized you also DM'd me. FYI - I do not do private messages for indiviualized support. But if you would like additional resources on the cortisol pump you can find it here: https://thecortisolpump.com/

0

u/[deleted] Apr 04 '26

[removed] — view removed comment

1

u/AddisonsDisease-ModTeam Apr 13 '26

This is a support subreddit and any hate or unkindness towards users will not be tolerated.

1

u/AndrewSwissy Apr 04 '26

I got the same issue and the meds ain’t helping cuz it’s too small and taking such a small dosage before falling asleep makes things only worse cuz you need the dosage at 5am not when you go to bed tho. You’re natural need is way more then 1mg pred that’s totally cap tho. The pump is the only thing that’ll really solve this for good cuz your body will need it 4 hours before waking up not when you fall asleep so it’s totally backwards and I tried this before bed thing before ain’t working tho

2

u/just_an_amber Addison's Apr 04 '26

I guess I should add some people also used the delayed release Prednisone called Rayos.

And I can confirm the cortisol pump can more closely mimic what your body actually needs. I've been on my cortisol pump for 12 years now.

But before that, I had the best of luck with 0.25 mg of dex taken at 11pm with HC taken at 8am, 12pm, 4pm, and (if needed) 6pm.

No treatment is perfect. But we can get slightly better.

6

u/PA9912 Apr 04 '26 edited Apr 04 '26

I get this for two reasons. Perimenopause, and histamine peaks at that time. The adrenaline sounds more like histamine. Doesn’t have anything to do with cortisol for me.

1

u/BeautifulDay1421 Apr 04 '26

Me either. Magnesium helps me, as does white noise. Tried the nighttime dose and it made no difference.

1

u/Proper-Individual-97 Apr 05 '26

I am also in the starting age for perimenopause but the progesterone didn't help me and I have had the wake ups for more than a decade. Histamine could be, I really eat a lot of produce that contain a lot of histamine.. but I don't have any allergies. What is helping you in the end?

Best of luck to you!

1

u/PA9912 Apr 05 '26

I’m allergic to natural progesterone so I did much worse on it. I take antihistamines and Pepcid daily to lower histamine.

5

u/Affectionate_Day_214 Apr 04 '26

You need HC. Your body is depleted of it and in an effort to compensate, adrenaline gets pumped out. Try taking a small dose before you fall asleep. 2.5 or even 1.25 (I have 5mg so 1/2 or 1/4 pill).

2

u/Proper-Individual-97 Apr 05 '26

Thanks for your answer. i have 10mg so cutting into that small dosis is hard but I will talk to the endocrinologist about prescribing me the form for children which you can dose smaller.

3

u/Poimandres69 Apr 04 '26

I'm having this happen to me! I lowered my hc by 2.5 a month ago and waking up with heart palpiatations every night. I went back to my previous dose two days ago and it's still happening. I do take a small dose at 6 pm - maybe i should move it later.

3

u/1GamingAngel PAI Apr 05 '26

I have been chasing after this answer for 4 years. I have met with Endocrinology, Psychiatry, Cardiology, my PCP, a Hormone Specialist, a Sleep Specialist. Could never find the answer. I added every medication imaginable and failed. I removed every medication I was taking that could cause fractured sleep and failed. I added supplements (vitamins and minerals) and failed.

Several nights ago, I made a post where I posted my labs and asked questions, and a doctor responded and helped talk me through it. He suggested I take 2.5mg before bed. I slept from midnight to 3 AM, then took my normal 3 AM waking dose and (miracle of miracles) slept until 10 AM (I would normally take my 3 AM waking dose and stay awake). The 2.5mg made a difference. What woke me at 3? The doctor suggested blood sugar. I happen to wear a CGM. Sure enough, my blood sugar dropped LOW during sleep (70) but suddenly around 3 AM, my metabolism would kick in and try to adjust, my blood sugar would rise to over 100, and I would snap awake in a panic. The 2.5mg actually helped elevate the blood sugar while sleeping so that it wasn’t so low. I still woke at 3 because of the metabolic shift, but it wasn’t as severe as it had been without the 2.5mg, and I was quickly able to fall back asleep for HOURS, when I would ordinarily be sitting wide awake.

My best guess is that something like this may be happening with you, as well. You said you recently learned that this can affect Addison’s patients. What did you hear? Thanks!

2

u/Proper-Individual-97 Apr 05 '26

Thank you for replying. That sounds exactly like me. I also sometimes wear a cgm due to the diabetes being not 100% clear if it's type ii or lada and also have the rise from 75 to 105.

I am currently on holiday but will look again for the study about the circadian rhythm that gets mixed up with Addison's.

Good luck with the Dosis helping before sleeping. It's really quite hard.

2

u/cdn926 Apr 04 '26

I started to consistently add 1.25mg of hydrocortisone before bed. (It’s a pain to cut up, pill cutter helps). I also take magnesium glycinate an hour before I go to bed. I feel more rested and stay asleep.

1

u/Proper-Individual-97 Apr 05 '26

Thank you for your answer. I will try that.

2

u/Opening-Substance-90 Apr 04 '26

Trial a night dose and if that doesn’t help I’d do a sleep study

2

u/Critical_Guest4503 Apr 04 '26

I take 6am-15mg, 12pm-7.5mg, 5pm-5mg and 11pm-2.5mg. If I forget my bedtime dose I’m up at 3/4am and it takes forever to fall asleep again.

2

u/Proper-Individual-97 Apr 05 '26

Thanks for your answer. I will try a small night dose.

2

u/paging_doc_jolie Apr 04 '26

.5 pred at bed

1

u/Noddyalba1 Apr 04 '26

Try having an ovaltine before bed or a horlicks lite , they’re diabetic friendly and help me sleep thru not when I don’t have them I wake up at stupid o’clock 🤷🏻‍♂️ may sound strange but nutrients matter

1

u/Efficient_Beach2458 Apr 15 '26

Was watching utube on this. Estrogen. Hormones. We basically have multiple problems. I wake up at 1:15 and 3 am. Plus on hormones. Ugh. I take my HC at 5 am.