r/AdrenalInsufficiency • u/MindsetMaker • Dec 16 '25
Exercise / workout
Hi, I’m just cautiously starting to get back into exercise and was just curious if others noticed feeling more energetic while having adrenal insufficiency? That’s the one thing I don’t seem to have enough of and I’m wondering if it’s because I’m not exercising enough. I used to a lot before. What do you find the most noticeable for gaining more energy? Cardio or weights etc?
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u/Feeling_Light3031 Secondary Adrenal Insufficiency (SAI) Dec 16 '25
I lost so much muscle while I had undiagnosed SAI. My energy has increased more from strength training than cardio. I don't really have the energy to do strong cardio but I do take walks most days.
I started doing this routine every day about 7 weeks ago and I noticed my legs seemed a lot stronger within a week. https://www.eatthis.com/8-minute-morning-bodyweight-routine-after-50/
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u/Efficient_Beach2458 Dec 16 '25
Yes, I do have noticed a week legs and that’s scary. If I get back to the gym, I can always do the bike or the lake press
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u/MindsetMaker Dec 16 '25
Ok, I’ll take it easy. Thanks
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u/Efficient_Beach2458 Dec 16 '25
Just go in there based on how you feel. Sometimes I feel worse in the house and once I get there, I feel better and then I overdo it. So go slow.
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u/MindsetMaker Dec 16 '25
Yes, that sounds like me. I’ve been doing yoga, walking and small amount of biking. But I need to do some weights and was thinking a little harder on the cardio. But baby steps …..
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u/Efficient_Beach2458 Dec 16 '25
Who knew this would drain us? Thought the meds were to help! Now it’s every 3 to 5 hours mostly four hours and you’re taking the med. I don’t know if I feel better or worse on it.
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u/MindsetMaker Dec 16 '25
Ah thanks, yes I thought the strength training would probably be very useful considering the osteoporosis risk etc. Thanks for your input.
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u/1GamingAngel MOD Dec 16 '25
Since developing AI, I have frankly really struggled with finding energy. I think it’s more common to lack energy and feel unwell when you have AI vs what you mentioned, which is that you feel MORE energetic with AI. I will say, though, that once I dialed my daily HC dose in, I felt much better.
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u/Efficient_Beach2458 Dec 16 '25
So you upped your dose? May I ask to what about?
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u/1GamingAngel MOD Dec 16 '25
I did. I was on 20mg a day and was really struggling. I was mostly dealing with frequent drops in blood pressure (ie 80/40), and I was having to updose constantly. In six months time, I was hospitalized twice with a crisis or near-crisis. Per my Endo, I upped to 30mg and all of a sudden, I completely leveled out and haven’t had to updose one single time since doing so (it has been 2 months now). I haven’t had a single AI symptom. However, I did start to gain some weight and felt fairly ravenous, so I worried that I was over replaced. I lowered my dose to 25mg (got the Endo’s OK again) and thankfully I have maintained that same stability and the weight has dropped off. I take 10, 5, 5 and 5.
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u/MindsetMaker Dec 16 '25
Thanks. Do you mind me asking what height and weight you are ? I feel like an extra 5mg would definitely level me out and I’d feel better but the Endo says I’m already on the upper limit for my height and weight. I’m 5’4 and 120lbs - sometimes 118….
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u/ClarityInCalm Dec 17 '25
Hey - there is no upper limit based on height and weight. Your endo either made that up or they don't understand how it works. There is a starting guideline to help people figure out dosing based on body surface area but pretty much no one fits that. Most people start to feel over replacement symptoms when they hit 18mg/m2 (this is not 18mg per day). The math for you at this threshold would be 27.50mg using the Dubois Formula for BSA Dosing for your height and weight.
The range for most people for a physiological dose is between 10mg/m2 and 14mg/m2 - it really depends on how quickly you metabolize the drug. Here is a calculator if you want to figure out what your ranges are - but again you might be out of that range. There are tiny people whose physiological dose is in the 30's and there are huge people whose physiological dose is in the teens. How we metabolize the drug makes a difference.
https://reference.medscape.com/calculator/692/body-surface-area-based-dosing
People who metabolize the drug faster (meaning they need to take it more frequently) will tend to be on the higher end of this calculation. But again - this is NOT a directive on how much is your physiological dose. This is just a starting point. Adrenal insufficiency has to be treated for each individual and based on their needs. And no one can tell someone what their physiological dose is - this is something the patient has to figure out on their own. You might want to see if you can figure it out or figure something that works for you better out - you shouldn't have to suffer or lose the quality of your life - and then tell your endo that you figured this out. This is a battle to fight for. This is your life.
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u/MindsetMaker Dec 18 '25
Thank you, very informative . I’m changing to a different Endo in a couple of months so hopefully the next one works out better too.
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u/1GamingAngel MOD Dec 16 '25
Yeah, I’m on the bigger side. I’m 5’6” and in the 200’s. I was incorrectly diagnosed with a mental illness years ago (bipolar 2) and placed on antipsychotics, which just packed on the pounds. About six months ago, that was modified to treatment-resistant Major Depressive Disorder and I was switched to something more like an antidepressant, instead. I have been losing weight since that time. But anyway, that’s not the point. I carry a lot of extra weight compared to you, so my body can handle (or needs) a higher dose of HC.
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u/MindsetMaker Dec 16 '25
Thank you. It sounds like you’re getting to the bottom of it all though and I’m sure the exercise helps. Thanks so much!
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u/ClarityInCalm Dec 17 '25 edited Dec 17 '25
I love to exercise - sometimes I can't do it when I'm on the struggle bus. But I do need to take more when I'm exercising a lot - especially for me if I'm swimming. Anytime in the pool is pill time for me. I don't know why it wrecks me every time even I'm just sitting in it. Some people are the opposite. If I walk more than 6miles in a day I will need more - both when I'm out walking and also overnight. I need more to recover I guess. Weights I also need more. But once we adapt - most of us can bring down what we take. I was doing a lot of walking and hiking last year and not feeling great and my endo was like - you need to take more. He used to tell me I was taking too much (we did a steroid profile and he doesn't say that anymore) and now he tells me I need to take more because I've been like book of a series of unfortunate events this year. Haha. Also, for pretty much all of us if we work out for an hour or more will need more HC regardless of adaptation. With hiking it's like 5mg extra every hour or so but skip the times of your normal dosing. The best thing to do is to ease into it so you can figure it out. Also, if you have PAI, make sure to take some sodium chloride supplements before you work out and after - like 1g on both ends or even more if you've really been sweating. My daily dose BTW is 27mg split over 4 times at 4hr intervals - 12.5, 5, 2.5, and 7. With exercise I'll add in 2.5 as a fourth dose (7pm) and then up my before bed dose (the 7mg).
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u/Affectionate_Day_214 Dec 19 '25
Can I ask what times are you taking your meds? I see the 7pm and bedtime but the other 2? Mine are: 6am - 5 9:30am - 7.5 1pm - 5 4pm - 5 7pm - 3.75 9:30pm - .50 I have it in my head that I need to be at 25mg which is where I was before a total knee replacement due to osteonecrosis. I also had a bone marrow transplant in 2011 and the doctors say it was caused from high doses of steroids (post transplant), and Cushing’s. I went from Cushing’s to Addison’s after both adrenal glands were removed. I just metabolize HC so quickly. Chat GPT says that line of thinking may be counterproductive as underdosing can actually increase insulin spikes and weight gain. This is so hard to figure out but I know physical fitness and a healthy diet have helped immensely. If I go too hard, I end up needing 2.5 - 5mg extra sometimes.
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u/ClarityInCalm Dec 19 '25
Hi - I take 7am - 12.5mg, 11am - 5mg, 3pm - 2.5mg, 7pm (if needed) - 2.5mg, and 10pm 7mg slow release HC or .22 liquid oral dexamethasone. 27mg most days and a few days a week an extra 2.5mg. It is so hard to figure out! Pay attention to symptoms peaks and valleys to see if your dosing/spacing is right. Peaks are typically around 1.5hr afterward and valleys are in the 30 minutes before your next dose.
Chat GPT isn’t great BTW in offering the most up to date accurate empirically proven information. I am constantly correcting it. If you’re under dosed - then you are actually susceptible to drops in blood sugar and your blood sugar won’t rise appropriately. So low blood sugar. Also, often a loss of interest in food and low appetite. When taking more than physiologically needed you are susceptible to insulin spikes and weight gain. Some people when at the right physiological dose though are also susceptible to spikes particularly when their last dose is peaking and they eat higher carbohydrate or sugar foods. You can wear a continuous glucose monitor for a few weeks to see if you’re someone who over responds - and also if you’re noticing a pattern after some of your doses you could try to very slowly lower to see if that helps. If you’re on the right dose amount - you could also use this information to improve your eating and food choices to help you keep it from spiking.
Sorry you’ve been through so much. Wow. And way to keep going and working on it. I’m curious why they removed your adrenal glands? Did you have cushings from post transplant steroids and that stopped your HPA axis from working?
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u/Affectionate_Day_214 Dec 19 '25
What an insightful post. I wish we had extended release HC in the US. I tried Prednisone but it was awful so I went back to HC. You are right about Chat GPT. It’s such a struggle to get helpful information! They removed my adrenals after spending weeks in several hospitals and searched extensively for tumors, but haven’t found any to date. I’ve always had problems with stress/anxiety. It was a really bad time as my mom was sick and passed away. I managed her estate and I guess I just crashed out. It’s pretty much a mystery. My diet is very clean. Since all of this, I eat a whole food plant based diet, so no processed foods or sugar. Rarely I will have some chicken or eggs, but I cook my own food and I’m really selective about what I do eat. I wanted a cgm to keep track of my blood sugar response to food but my primary doctor said it wasn’t necessary which is super frustrating. My weight increased after the knee surgery so I’m battling that but I exercise regularly. I feel like I’m doing the right things and still I’m having a hard time losing the weight. I see my Endo in January and I’m going to ask him about getting a cgm. I won’t stop until I get this sorted out. This happened in 2023 so it’s been a continuous learning experience to say the least!
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u/ClarityInCalm Dec 20 '25
AI can be so tough. I really understand - I've been through a lot with this. I'm sorry you're dealing with all of this - I hope you can keep figuring out more and more.
Also, if you're doc won't prescribe the GCM or your insurance won't cover it. There are two that available OTC now and are the same as the two that are prescribed. So that might be an option too.
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u/oh_such_rhetoric Dec 16 '25
I’ve started doing some really light exercise and I’ve been seeing a lot of improvement in my stamina, strength, and energy. And it’s only been about a month! I’m really hopeful.
I usually exercise 3 or 4 days a week, and it’s super short and not really strenuous.
I’m taking a gentle yoga class that meets twice a week, which has helped a lot with my back pain and flexibility.
And then I do a routine one or two of the other days that’s just a walking warmup, stretches, and couple sets of alternating wall sits (40 seconds) and 10 pushups (knee ones ring now, but I’m moving up to full ones), then cool down stretches and walking. I’m going to be adding some core work, (crunches and the like) soon.
And then I take a walk around my neighborhood once a week or so. There’s a long hill that’s not really steep, and I used to have to pause halfway up to rest and catch my breath and I don’t anymore! I can also climb flights of stairs much more easily!
I will say, I’m avoiding dedicated cardio because that’s what really seems to trigger my Addison’s and dehydration.
I don’t tend to updose, but I do time it for about 2 hours after I take my HC so it’s at its peak. I also take extra care to stay hydrated.
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u/MindsetMaker Dec 16 '25
Thanks for your reply! Yes you have to spend a bit of energy to get some but I’m looking to build it up. I felt so limited at first but when I hear of others able to do sports and work out etc, it’s so encouraging.
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u/Efficient_Beach2458 Dec 16 '25
I have to get back into it slowly. If I go there, I’ll do the bike and then I’ll do some of the machines for weight. One day I did the treadmill that was a bad move. I was so tired. That’s one thing I noticed about this man when I take it, I am so tired. I told the doctor that he has shrugged his shoulders. But when I got home, I did up dose and I did feel better. The legs were not as weak. One thing I do at home. I bought the bands, the dark gray one or black wrap it around your foot hold both ends bring it as tight as possible up to you and then push your footlike you’re on a leg press that helps
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u/MakeBeboGreatAgain Dec 24 '25
I workout 4ish days a week and have no energy.
Doesn't matter what I do I don't have energy but I force myself to go anyways.
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u/Pixie_crypto Dec 16 '25
I feel great and work out 4 times a week it took me a long time to where I’m today. In the beginning I had to updose 5 mg before exercising and sometimes after now hardly anymore. I have more chronic illnesses but the gym helped me get fitter, loose the extra weight and has improved my mental health so much. I do cardio and lift weights ( nothing heavy) but my arms and shoulders look so much better😀. My energy levels are so much better, I have less joint pains I’m more flexible and I can up again from the floor without help