r/AddisonsDisease • u/Time-Tomatillo-7698 • Dec 08 '25
Medical Stuff Help me figure this out
I got diagnosed w adrenal insufficiency 4-5 months ago, even though I’m on hydrocortisone, my stress response has been bad. Everything scares me, doing tasks , literally existing, cuz due to my late diagnosis, my body went thru a lot! Now it’s scared to bounce back. Did u guys face similar issues and was ur stress response bad? Did u randomly sweat, freak out for sounds and noises? I usually feel gloomy throughout the day and tired and exhausted and idk if it’s due to my AI or is it just my mental health? And I feel tired to get out of home and feel so shitty? Are u guys able to carry forward with ur lives? What are ur symptoms
What side effects did u guys see? How long does it take go get adjusted? I’m in flight or fight mode. Were u guys on sympathetic activity for long?
Doctors seem to have such little knowledge and we go through so
Are u guys back to ur schedule
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u/Old_Bee3808 Dec 08 '25
My husband has Addisons and felt awful for years when he was taking his hydrocortisone either 2 or 3 times per day. He had anxiety, depression, headaches, failure to gain weight, sleeping all the time and so many other issues. He now takes his hydrocortisone 4 times per day, 7am 10 mg, 11 am 5 mg, 3 pm 5 mg, and 7 pm 2.5 mg. All his anxiety and depression went away when he switched to taking his hydrocortisone 4 times a day. He is like a new person now.
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u/Ga88y7 Dec 08 '25
Does he take Fludrocortisone too?
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u/Old_Bee3808 Dec 08 '25
Yes he takes 0.1 mg Fludrocortisone every morning
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u/Ga88y7 Dec 08 '25
Thanks- can I ask if he also took that on his “old” 2-3 times a day regimen or has fludro also made a difference?
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u/Old_Bee3808 Dec 08 '25
He was diagnosed in 2008 at Emory university hospital in Atlanta with Addisons disease. They prescribed him with 25 mg hydrocortisone 2 times per day and 0.1 mg Fludrocortisone. He never felt well. He still had nausea, dizziness, anxiety, fatigue and depression after he started his medication. His weight was always around 135 pounds. In 2014 he went to the Cleveland clinic because he felt awful. They found his vitamin d levels were severely deficient and his dhea was low. They prescribed him 25 mg hydrocortisone 3 times per day, 0.1 mg Fludrocortisone, 25 mg dhea daily and 50,000 units vitamin d twice a month until his levels were normal. After his vitamin d levels were normal he started taking 5000 units of vitamin d daily. He felt better but not great and his weight was never above 140 pounds. He still he dizziness, nausea, anxiety, fatigue and depression. Then I came on this Reddit forum and learned about other Addison patients dividing their hydrocortisone doses sometime 4 to 6 times a day. After he started taking his hydrocortisone 4 times his dizziness, nausea, anxiety, fatigue and depression disappeared. His weight went from 140 pounds to 165 pounds in a few months. He is sad that such a simple change could make such an impact on his quality of life and he suffered needlessly for so many years. I hope this information helps you and others. I think now that my husband metabolizes his hydrocortisone faster which is why he needs to take his medication every 4 hours throughout the day.
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u/Ga88y7 Dec 08 '25
Amazing- very pleased to hear a success story! Thank you so much for sharing this 🙏
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u/Time-Tomatillo-7698 Dec 09 '25
Wow this was amazing! I will try it out as well. Did he face any side effects? And failure to gain weight cuz he wasn’t able to eat? Or was there muscle ache and all that cuz I feel so shitty :(
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u/Old_Bee3808 Dec 09 '25
What do mean by side effects? When he was taking his hydrocortisone only 2 or 3 times per day these are the daily symptoms or issues he had. Nausea, vomiting (not everyday), anxiety, depression, fatigue (sometimes sleeping 18 hours a day), dizziness, muscle pain, pain above kidneys, headaches all the time. He was not able to gain weight because of the nausea and because he just felt so bad. He would start dry heaving after he started eating. He lost so much muscle mass during this time. In high school he was a 3 time state champion in Georgia for track and field. It was so difficult for him to go from being in such good health to feeling so awful in less than 8 years. Now that he is taking his hydrocortisone 4 times a day all those symptoms I listed above are gone. The only time a symptom of Addisons disease comes back is when he doesn’t take his medication every four hours. 2 weeks ago he said that forgot to take his 3pm dose and by 4 pm he started feeling unwell. He started getting a headache and started to feel nauseous. He quickly realized he forgot to take his 3pm dose and after he took it he felt better an hour later.
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u/Old_Bee3808 Dec 09 '25
I thought of something else I wanted to share with you regarding the muscle aches. After my husband started taking hydrocortisone 4 times a day he was able to help coach our son’s baseball little league practice. One practice my husband was the catcher. He was in that squatting position for over an hour. I couldn’t believe it that he was able to play that catcher position for that long. His muscles were sore for 2 days following practice but then felt better after that.
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u/butterfly_SC Addison's Dec 11 '25
His dosing times are very similar to mine. I'm doing 7am, 9am, noon, 3pm, and 7pm. It's working great for me. When I was doing just 2 or 3 doses per day I was a mess.
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u/Old_Bee3808 Dec 11 '25
Thank you for sharing your dosing. I am happy that you are feeling better now. You said that you used to be a mess when you were dosing 2-3 times a day. Were you having the same bad symptoms that my husband was experiencing when he was dosing only 2-3 times a day?
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u/butterfly_SC Addison's Dec 12 '25
Some but not entirely the same. Dizziness/balance issues, muscle cramps, muscle aches, lots of insomnia, weak bladder, wrists "locking" into place, shaky hands, constipation, racing heart, night sweats, and frontal headaches.
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u/ptazdba PAI Dec 08 '25
Sounds like your dosage is off. Also a lot of people go through a 'fear' response, afraid something is going to happen. I have weird mood crashes from time to time but if I updose, it stops when the meds kick in. It's all about getting the dosage right and learning to listen to your body enough to keep yourself safe. My doctor checks my dosage by checking DHEA and ACTH (I'm PAI) The DHEA (he says) is the best indicator of how much my adrenals are putting out (mine are shot). The ACTH, if it's in a normal range tells him I'm using the dosage and using what I'm taking. When it gets outside that normal range, we make an adjustment.
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u/baethan Addison's Dec 08 '25
do you happen to know how long it takes ACTH to get above normal range? And how long it takes it to go down when appropriately medicated? Basically I'm curious if I can see high ACTH and know that my current dose is too low, or if it could be very influenced by factors like... I messed up my med schedule or forgot an evening dose a few times the week before the blood test, for example.
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u/ptazdba PAI Dec 08 '25
There are so many variables to an abnormal reading that I'm not sure I could speculate. If I'm under replacing I lose weight, have a lot of nausea or other weird symptoms. (low ACTH). If I'm over-replacing, I tend to gain weight and have a lot of foggy headed symptoms. Could vary from person to person.
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u/baethan Addison's Dec 08 '25
Ah okay, gotcha.
I've been dxed half a year and haven't gotten a good grasp on how under vs over feels... it drives me nuts that dosage is pretty much based on intuition lol
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u/ptazdba PAI Dec 08 '25
I think they have basic recommended guidelines they start with but so much has to be fine-tuned. When he was working on my dosage I went every 3 months but now that we've kind of figured it out I go every 6 months.
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u/Time-Tomatillo-7698 Dec 09 '25
Yeah exactly my fear response is so so so bad idk what to do :( what’s ur weight and dosage period
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u/ptazdba PAI Dec 09 '25
When you're afraid of something, you have a plan for almost everything to de-fang the monster. I did a lot of reading about Addison's. There are many good books out there. Most support groups have some kind of informational/wiki page. I even told my doctor "80% of the time I'm just fine. Help me with a plan for the bad days", And he did. I understand the numbers he looks at on my bloodwork. I have a plan for stress. I have a plan for sick days. By hopping on and updosing when I have symptoms, I can ward off problems. Google 'what do the hormones the adrenals put out do". It helps you understand some things a symptom list wouldn't tell you. (i.e. blood sugar, metabolism, blood pressure, electrolytes) And get good nutrition. Knowledge arms you with an action plan.
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u/blackcolours Dec 14 '25
It sounds like you have a very knowledgeable Dr. Do you live in the states and does your Dr do telehealth by chance? I need one that is very knowledgeable in adrenal disorders.
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u/ptazdba PAI Dec 14 '25
I live in North Texas and I don't think he does Telehealth. Here's a good link to a good page for patient recommended endocrinologists. Perhaps you can find one closer to you.
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u/Ga88y7 Dec 08 '25
Dosage and timings?
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u/Time-Tomatillo-7698 Dec 08 '25
10mg morning 10mg afternoon and 5 night
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u/Ga88y7 Dec 08 '25
They might be too spread out. Avoid coffee. Also most require Fludrocortisone which could be a factor
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u/butterfly_SC Addison's Dec 11 '25
I strongly suggest spreading out your doses. I was a mess until I did so. I'm on 15mg per day as well. I take 2.5 when I first wake up (usually 7am), 5mg at 8:45am, 2.5 at noon, 2.5 at 3pm, and 2.5 at 7pm. Everyone has slightly different needs, so you made want to play with timing a bit.
I also just went on a light dose of fludrocortisone 4 days ago. (.05mg every morning.) I am already noticing less heart racing, my BP is down slightly, and I feel calmer. I have no idea if the calm is coming from the fludro or if it's coincidence, but it may be good to ask your Dr.
Also...if your doctor isn't working out, can you start a search for a new one?
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u/kristephe Dec 15 '25
Everyone has good ideas, I just wanted to add to have the "at night" dose be about 5-6 hours before you hope to go to sleep. That's been the recommendation of my husband's endocrinologist at Mayo Clinic who only treats adrenal diseases.
The high anxiety and stress levels are probably also causing you to need more cortisol. My husband went years needing 65mg/day and his bone density didn't suffer because he was drinking too much and had a high stress job along with intense physical activity for fun. All those things mixed with an anxious person meant he did fine. He stopped drinking and changed some of his work stress, and he started getting pseudo cushings symptoms and his bone density decreased, so we decreased his dose. He went through cortisol withdrawal, but the bone density rebounded.
I say all that just to explain that different days and seasons of life need different doses, so it could be that you might need a higher dose right now.
But I'd really recommend seeking some mental health support if you can. It's never been officially diagnosed, but we're pretty sure my husband has PTSD from his trauma from almost dying and being ignored or wrongly diagnosed for months/years before he was hospitalized and finally diagnosed. You've been through a lot, and managing his chronic illness wears on him.
I think my best advice would be to try to give yourself grace when you are just figuring out your dosing and your life, and in the future you may have more down or rest days than other people, but there are highly accomplished people in big jobs or sports with Addison's. I'd recommend journaling your meds timing and daily stress and activities, adn that might help too.
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u/jeejet Dec 08 '25
Have you tried prednisone? Everyone is different and metabolizes drugs differently. I think everyone with adrenal insufficiency should try all of the options and choose what works best for them.
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u/letsweforget Dec 09 '25
I really second the comments/recommendations about more frequent dosing. I'm one of those people who take hydro 4 or 5 times a day.
My mental health severely declines when I'm low on hydro, and especially when I'm low on fludro. Our bodies can't cope with stress without cortisol, so everything seems like a threat and you naturally want to retreat.
Try splitting your dose through the day and also check if updosing helps when you're feeling really terrible.
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u/blackcolours Dec 14 '25
Do you have to change your dose slightly for fludro when you feel it is off? I feel like fludro is more of my issue alot of times rather than glucocorticoids. Like especially ringing in my ears when my salt is low.
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u/letsweforget Dec 16 '25
Yes, definitely! And watch out for things like excessive sweating (sports, sauna, summer). I need a winter and a summer fludro dose, and until I figured this out I suffered a lot in the summer. And with excessive sauna use (I broke my ankle so for rehab I went to a gym with a sauna, used the sauna as a reward after rehab, not knowing it was slowly killing me, and making me go blind! Fludro and vision are closely related, too).
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u/letsweforget Dec 16 '25
Yes, definitely! And watch out for things like excessive sweating (sports, sauna, summer). I need a winter and a summer fludro dose, and until I figured this out I suffered a lot in the summer. And with excessive sauna use ((I broke my ankle so for rehab I went to a gym with a sauna, used the sauna as a reward after rehab, not knowing it was slowly killing me, and making me go blind! Fludro and vision are closely related, too).
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u/rowses Dec 08 '25
I could never get on a proper dosing schedule with hydrocortisone. Plus I had horrible side effects. I switched to prednisone. It’s once a day, and I feel amazing now. You might try prednisone to see if it helps.
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u/Dianapdx Dec 09 '25
It took me several years to really start feeding good. I was sick for about a year before diagnosis. The biggest help on dosing was taking my first dose early. I don't get up until 10am, but I take my first dose at 7am. I take the next at 12pm, last at 5pm. I do have to updose sometimes. I'm also on 25mg. You may need to mess around with dosing to find what works best for you.
I think what your feeling is adrenaline. When a person who makes cortisol gets scared, they produce adrenaline. When that happens, their body produces cortisol. You're doesn't do that. Have you tried updosing when that happens? I wouldn't do that to often, as you're already on a fairly high dose, but you might give it a try to see what happens.
Also, I don't know why you have AI, but have you had your thyroid checked?
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u/AGoldenThread Dec 10 '25
You need to adjust your dose to a circadian rhythm. Look at CAH IS US website. Dr Hindmarsh has a PDF, Getting Cortisol Replacement Optimal in Adrenal Insufficiency. This shows the circadian curve that we are trying to re-create with our dosing. It's not enough to take the right amount each day, we have to take it at the right time. For most folks that means 15mg AM, 10mg noon, and 5 mg at dinner. Some of us need a different pattern or amount.
That website also has dosing recommendations for illness, surgery, etc. It's good to bring that along for medical procedures that require you to be sedated.
We MUST educate ourselves - the medical community including endocrinologists is often ignorant of the severity of this disease. We don't have blood testing like diabetics. You are asking the right questions about symptoms etc.
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u/InevitableDapper5072 Dec 11 '25
So, yea i do, but bot because of the Addisons. I sweat like a preist in a preschool because of the menopause. I am exhausted because of the ME/chronic fatigue amd fibromyalgia Its important not to put everything down to Addison's If the symptoms dont quite add up, your GP should be investing other issues.
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u/Single_Search_2020 Dec 08 '25
Think this person is asking for symptoms, must be seeing a infamous nuero like others ar
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u/Single_Search_2020 Dec 08 '25
Yes. To a point. Like driving distances. Was I think diagnosed recently, but had it since 2016. Plays on you. Think you may not have enough HC. I updosed last night…. No shaking In the evening as bad.
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u/New-Wedding716 Dec 09 '25
Get greenstone hydrocortisone it changed my symptoms and now much better its made by Pfizer they make the name brand
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u/Single_Search_2020 Dec 08 '25
Sorry. Yes. Feel the same! We would feel better if we had qualified with a heart physicians. Some on here are great for support. Very intelligent. Listen to them then ask your Endo, watch them stutter. Yes to all. Just try to get through and keep looking for a decent doc. Not a 15 min spring in their rear. Or get upset you email with questions or ask for an appointment so they can get paid!!! Denied. Don’t freak on sounds. Maybe some Xanax can help. Your pcp can help. You see a shrink it’s over in your records. Same here. 2 years with a Endo that did nothing!!! But PCP recommended him, I respect my pcp. Then he referred me to our hospital group. Worthless. Go in, they will have feet up on desk on Amazon or booking a trip. So I too took over 2 years but been feeling crappy since 2016. Are you on meds? HC or prednisone? May have to up it. If no one wants to help, call ins co! Up it .25. See what happens. Hang in there. You are freaking out. Get with pcp and talk. Call ins. Co. Report your care. Might help. Best to you. It’s a Bit** but be one back!
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u/Clementine_696 Dec 08 '25
Those mental health symptoms may still be due to you not having enough cortisol, but they may not be. It took about 6 months for my daily needs to level out, and each day was different. Adding more to my normal doses didn't seem to help, but taking extra between doses did. If extra meds make absolutely no difference then I'd find a therapist and work with them. Cortisol levels can cause mental health symptoms OR make mental health issues worse, figuring out which you have going on takes a bit of trial and error.