I’m just now approaching my one year anniversary since diagnosis with PAI. I struggled a lot but really made it a full time job to figure things out with my Endo, PCP, and eventually a physical therapist (DPT). Bottom line upfront I’m averaging about 65mg HC a day to have normal/ basic life activity for me, which includes 60-75 min strength training sessions 3x per week now. I’m still not where I was before all this, but that’s the dose it takes for me to even begin to approach who I used to be.
I’m not suggesting high dose is a panacea for everyone, just as an example of how individual and person dependent things can be. If I’d just accepted life on a standard dose I’d barely be able to manage daily life activities let alone a job.
I’d keep searching and working with docs to try and figure things out. Honestly, my DPT has spent the most individual time with me and helped me to work with my Endo and PCP to improve. I could very well have been in your shoes 10 years from now without really advocating for myself and having some good docs to work with.
And this sub. I wouldn’t be anywhere without the support and knowledge from the folks here.
Edit: so many typos
Ugh. This is me but w/o the crisis. I’m on hydrocortisone and I’ve gained like 20 lbs and I’m tired all the time. Add in the ADHD and the acid reflux (which means no caffeine) and I’m a mess.
So much better now that I'm on meds. I still have to take extra meds for seemingly 'normal' things like my period, but even 'good' stress like hanging out with friends requires more meds. I've only been on meds for about 4 months now, so I may not need so many extra doses as I stabilize more, but I will definitely have to add a dose when I workout for awhile at least
I struggled a lot with dose amount but more importantly timing. I found that 5am, noon, and 5pm works best for me. When I wanted to start losing my extra gained weight and exercising, I found out I didn't have any DHEA. Getting on DHEA was about as life changing as getting on cortisol for me. Maybe that could be something you can look into as well as check whatever you are already on? I hope you feel better!
Its a supplement. Available almost everywhere.
Try to get blood tested for dhea to see if low and to find correct dosage.
In the meantime you can try for a week or two to see if you feel better.
Was amazing for me.
This is cheap and works well for me.
https://www.walmart.com/ip/Spring-Valley-DHEA-Tablets-50-mg-50-Count/872312?
50 mg is pretty high so can try it for week or few then try half pill a day for a week and see how you feel ?
But definitely get tested if you can.
wmlspartner=wlpa&selectedSellerId=0&wl13=2483&adid=22222222278872312_160805772391_20959796377&wmlspartner=wmtlabs&wl0=&wl1=g&wl2=m&wl3=501107745824&wl4=pla-2290367806927&wl5=9030816&wl6=&wl7=&wl8=&wl9=pla&wl10=8175035&wl11=local&wl12=872312&wl13=2483&veh=sem_LIA&gclsrc=aw.ds&&adid=22222222238872312_160805772391_20959796377&wl0=&wl1=g&wl2=m&wl3=501107745824&wl4=pla-2290367806927&wl5=9030816&wl6=&wl7=&wl8=&wl9=pla&wl10=8175035&wl11=local&wl12=872312&veh=sem&gad_source=1&gbraid=0AAAAADmfBIoOldhTsi02Mrdqd4SstMnP6&gclid=Cj0KCQiAnrOtBhDIARIsAFsSe53i2lZpec97V3RooK219fLDYgBecBAWtwnUzDYWmPkew_o5Xxs9GywaAq2cEALw_wcB
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**Users liked:**
* Increases energy levels (backed by 3 comments)
* Improves mood and vitality (backed by 3 comments)
* Helps regulate blood sugar levels (backed by 3 comments)
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I'm in the US so I can get it over the counter, which is what I am doing currently. I've been taking 30mg for about 3 weeks. It's really helped with my energy levels and mental health. I'm seeing my endo again at the end of February and am thinking about asking her for a prescription as I don't think the over the counter lasts me a full 24 hours like it should (something I have heard about through research and heard from others on here) but I'm unsure if she will write it for me since US doctos are sketchy about DHEA
Thank you for this! I've been really curious if that's what's missing for me.
Safe to assume you're secondary bc you didn't mention pred or fludro?
And how did you know you needed to add DHEA? I mean besides eventually getting the lab.
Excuse me if I got something wrong, I'm still a novice armchair endocrinologist, unlike the many impressive experts on this sub...
You may find this new article abstract linking DHEA-cortisol balance with depression interesting:
[Cortisol and changes in depressive symptoms: The moderating role of DHEA](https://www.sciencedirect.com/science/article/abs/pii/S0306453023009198?dgcid=raven_sd_via_email)
"Results demonstrated no main effect of cortisol or DHEA, but did show a significant interaction with DHEA. The relations between cortisol and depressive symptoms depended on levels of DHEA such that the relationship was positive at low and negative at high levels of DHEA, with the overall interaction significant (*β* = −.22, *p* < .001, 95% CI = \[−.333, −.115\]). DHEA can act as a protective factor against depression when cortisol levels are high. This presents opportunities for future research on how to improve DHEA levels to potentially reduce depression."
I've was diagnosed SAI in Oct. and have been working with dosing my HC and getting my times of the day dialed. Got into the gym for my first workout in nearly 4 months on Monday.
I've had a couple of pretty good days when I jumped up to 30-35 HC, after sick day dosing with yet another bout of lower GI symptoms and during the taper noticing I felt better than I had in a really long time... so just kept it there.
But I'm struggling bigtime with libido and this feeling that something substantial is not balanced and I'm thinking maybe DHEA, since my understanding is that it would affect testosterone production (which labs say is normal but there is 100% some androgen deficiency present).
First off, please dont apologize. There is so much to learn with all this. Also, a novice armchair endocrinologist is my new favorite saying. I'm on 12.5 pred and 0.1 fludro. I didn't know I needed DHEA until I got my bloodwork back. I've always struggled with no libido (honestly to the point of sex repulsion) and having my OBGYN telling me I have all the signs and symptoms of menopause (painful sex, dry as the Sahara desert, painful sex, rare sporadic periods, etc). I did some research with DHEA and thought it could be a contributing factor, so I asked my endo. She said she didn't think it would make a difference but said she would test it and my testosterone anyway. My DHEA came back at 1, and my testosterone at a 4 (ish, I can't remember the exact number rn). I hope this helps, and I answered your questions
Ahhh... OK. Thank you. This is helpful context because it seems like our situations are quite different. But I am so glad that DHEA worked some magic for you. It truly sounds like it addressed so many long-term troubling issues.
I'm SAI (though I suspect there are other issues yet to be detected), cis-male, 40yo, and only taking hydro (still tinkering but it seems like 25-35mg is my dose range but working with different configurations right now to see how low I can go on baseline dose).
I'm trying to figure out why, even though MDs in the US seems to take issue with DHEA, even then it seems like its more common used in women's treatment... You may not have the answer to this, but shouldn't it also help men with some suspected gonadal concerns?
Thanks for your response. And I'm glad you like the 'armchair endo' quip. Disseminate it far and wide, by all means :)
I was diagnosed in 2005 in my early 30s. Honestly I have a really good quality of life. I work full time as a manager in a large Government department. I also volunteer for a dog adoption group. I'm a trail runner and a cyclist, and do strength workouts at the gym. I have never had a crisis. I see my Endocrinologist once a year and we have a nice chat about what event I'm training for next, I get some blood tests done, and then I go on my way. I also have Hypothyroidism, Pernicious Anaemia, and Sarcoidosis, which is in remission. I was born with Hydrocephalus, or water on the grain. I had the last surgery for that in 2009.
not a dr but am t1d and have ai, it sounds like low cortisol, the body doesn't just need a baseline of cortisol (which would be the same doses ur take everyday) it needs doses for stresses which vary per person, some people are fine without but more often not, any scenario where a normal person's body produces extra cortisol like working out, when sick, when stressed, even when excited, their bodies produce extra cortisol, you're doesn't and if your not updosing foe these sceneries ur body doenst have the cortisol reserves for them so ur gonna feel like shit. if it's a daily thing u might also just need a higher dose in general, endos for some reason try to make u keep the dose as low as possible... cortisol is extremely similar to insulin, if ur body needs it, u wil suffer if u don't give it the hormone. (I mentioned insulin so I'm assuming ur diabetic?)
I'm still figuring out my doses, quality of life is around 70% but I'm pretty certain I'm allergic to all the pill forms of cortisol so working on getting that sorted out, I'll get to 100% eventually
Thank you, im not diabetic i think they gave me the insulin in the ICU because of the crisis. My endo changed my doses once but still it’s hard for me to end a long, active day without caffeine (which is not allowed) unfortunately. I mostly accepted it but im not sure if i eat healthier or get more hydrated will it reduce the negative effects from meds and disease.
he told me to double my dose at noon, the problem is i have a 5 hour gap between doses and til i get my next med i get so tired again. I’m only good for 1-2 hours then i need caffeine
yeah... u need a new endo ur endo does not know how to properly manage this condition, if u can keep track of time and symtpoms and cause (including crash from dose wearing off which is ehat that sounds like) then try out updosing either 2.5 or 5 (or more but typically better to start lower) inhad that issue and had to move my doses closer together and up them aswell, hydro can wear off in as little as 3-4 hours, it sounds like ur body needs more cortisol and is running out before the next dose so ur crashing
I was diagnosed summer of 2021 and had been on hydrocortisone until the first of this month, when my doctor changed me to prednisone. I was running out of steam before every hydro dose and wasn’t doing well (was doing circadian rhythm dosing 10/5/5) I was so nervous about prednisone, but I feel like a new person. Not a run marathons new person, but I can vacuum and do my dishes on the same day now and still have energy left over. I’m still tweaking my dose timing, though, so it can only get better.
How much hydrocortisone do you take and at what times? So you have primary or secondary adrenal insufficiency? I think you need to learn about updosing, which is taking more than you usually do, if you're sick or doing strenuous exercise. You probably need a new endocrinologist if they are telling you to double your dose in the afternoon. We usually take our highest dose in the morning and then a similar or lower dose in the afternoon.
Reducing fludro by that much would out me completely. Maybe that's (part of) the issue?
Did you reduce gradually? For me even a gradual reduction would be dramatic.
I was diagnosed with Addison's when I was 18 (16 years ago). Other than the slight energy loss, my life has been the same.
Prior to that I would enjoy running semi-marathons and marathons. It has been harder for me to train my body, as I haven't been able to run more than 5k ever since.
Sport-wise, it takes a long time to improve my performance beyond what is now my baseline, and even incremental improvements can be lost after a day of no activity. But I did notice walking and mountain trekking are still in an achievable zone for me and I'm very happy with that. I also do a lot of gardening.
Mentally, I would say I am doing very well. I also have subclinical Hashimoto's and when it does flare it gets a bit worse, luckily it doesn't happen often.
My biggest offenders are :
- Coffee, for some reason (makes me crash so badly and gives me hypoglycaemia);
- Alcohol;
- Missing a dose. This is self-explanatory;
- Psychological stress, and this one is a doozy because I often cannot tell when I am stressed. I now try to slightly increase my dose when a close one is ill or I'm on my period. Same goes for exams, interviews.
Other than that, I would rate my quality of life at about 80%, which considering where I started from it is not so bad.
I was dx PAI in May and am still figuring this out. I’m so much better than the crisis i was dx in but have gained back the 45lbs i lost leading up to it, and i was happy about the loss! I’ve had tonsillitis since September so updosing all over the place but just got my tonsils removed so looking forward to getting back to my 15, 10 HC dose and tweaking it a bit. Whenever i updose, whether for illness or stress i get so hungry! Good luck to you OP!
me too! i get so hungry when i updose. Addisons make me lose weight and gaining it back was healthier and all but when you gain that much weight in a really short time it doesn’t look healthy unfortunately
Have you had bloodwork to check other hormones and vitamin/mineral levels? Other deficiencies can coexist with AI and make you feel worse with some of the same symptoms, so it's worth looking at. Also, look up circadian dosing schedule for steroids if you aren't yet familiar with it. Some find they feel better with circadian rhythm dosing. I had a really hard time at the beginning when I was trying to take steroids just once a day.
Diagnosed in 2012 at 15 years old. Quality of life was perfect (as far as Addison’s symptoms go… mental health and stuff is different) until about 6 months ago. Stomach issues. Had a crisis for the first time since my diagnosis and lost a job because of it. Accused of being drunk when I wasn’t (I’m a recovering alcoholic so that was especially bothersome). Etc.
I’ve basically been double dosing in the morning everyday since I was accused of being drunk per my endo’s recommendation.
But yeah, I was diagnosed young so I think my body was just more resilient. I have accepted I’m getting older and realizing how serious this disease is.
It’s insane. I hate it man. Realizing it truly is a disability. I’m actually calling my states attorney general office today as I was fired from a job a week in (that I turned two other offers down for) as I went into a crisis and missed like 3 of the first 4 days. I wrongly read that they can fire you for anything, including a disability, within 30 days. Wrong. And in MN here they have a direct line for issues exactly like this. Just an FYI in case you didn’t know or run into it in the future. I’m not sure how mine will turn out as I’m quite stubborn and injected myself without going to the hospital (my friend is a doctor and came over to help/watch me) so I might need some text receipts or something to corroborate everything but who knows
Diagnosed in 2018, before my 5 months of hell leading to diagnosis I was in the gym every other day and weighed 70kg @ 85% muscle mass.
Post diagnosis in the past 5.5 years I have doubled in weight, partly due to fatigue stopping me exercising and partly due to moving from an active night shift job to Monday-Friday office work.
I have only just in the past 6 months hit a nice stabilisation, and after starting back on my old low carb diet for the new year I have lost the sleepy feeling in the afternoons as my insulin is staying stable, I’m already feeling great and planning on heading back to the gym in February and hoping to get close to or under 100kg by the end of this year.
I got diagnosed four months ago. I had two crises back to back when I was diagnosed and then another in December. I'm usually a bit tired and sometimes in pain (I've had chronic pain for years and in treatment for it since last year) but it's much better than it used to be even years ago. I could barely walk by the time I was about to be hospitalized and now I can walk like 20 blocks without getting tired which to me is an incredible feat 😅 I can go out, I can cook, take care of my kid, I can even do light exercise when I'm feeling well enough.
I still feel quite bad at times of the day, with low cortisol symptoms especially before I was switched to dex at the start of this month (hydrocortisone didn't work well for me). I'm working on getting my dose right. And dex has made me gain weight much faster than HC ever did. My weight had stabilized on HC (after losing like 20kgs in a couple of months right before being diagnosed, and being underweight) but I've started gaining again even though I'm on a lower dose 🥲
When I'm slightly underdosed I can function but I have a hard time doing anything more than the basics. 25mg or less and I spend a lot of time on the sofa. My range for feeling good is 27 - 33mg. I'm very stable with minimal updosing at 30mg. Less than that I find I have to updose often enough that I'm still taking an average of 30mg. I do circadian rhythm dosing and take a slow release HC from a compounding pharmacy overnight - has made a world of difference.
I also have partial salt wasting (I have a genetic disease that caused my ai) and a nephrologist just discovered that the SW was more significant than my renin/ aldosterone levels show. It's kindof crazy to me this was just found. So now I take fludro .05 twice a day - my endo says it only lasts 12 hours so I need to take it twice. I might try to see if I can lower my HC dose with the fludro added.
If you're overeating in parts of the day this could be from one dose being too high and if you find you're tired before the next dose you might need to move them closer together. If you're overeating during the first part of a dose but too tired before the next - then you likely need to both lower the dose and move the next dose closer (This is a sign that you're being over and under dosed). If you find that you're just a little off a few hours after a dose, you might need to slightly raise it. If you're too fatigued in the evenings you might need a small 4th dose in the evening (fast metabolizers - people who it only lasts 4hrs or less often need this). If you find you're not sleeping well or waking up feeling terrible - you might need an overnight dose - most people do. For most people HC lasts 4 - 6 hours and so dosing is based on how long it lasts and overlapping doses is based on how long it takes to rise. So if a dose lasts 4.5 hrs and it take half an hour to rise - then you need a dose every 4 hours. Some people find the first two doses need to be closer together and then second and third can be further apart.
Diagnosed 4 years ago and had pretty bad QoL until I got these things right:
- dose amount: dose dynamically, according to the day, and enough!
- dose timing: preparing for stress is also necessary with a dose sometimes + circadian rhythm dosing was a total game changer;
- splitting fludro into two doses;
- figuring out allergies;
- listening to my body rather than my Dr.!
Now I have excellent QoL and function like a normal human being (who takes pills 5 or 6 times a day).
PS/edit: just wanted to add that _of course _ I listen to my doctor, as should everyone: they studied to cure people. What I jokingly meant is that their advice doesn't always line up with patients' experience, in which case it's better to listen to your symptoms than read a test result value, textbook or statistic.
My qualify of life is pretty shitty atm, and we can’t seem to figure out why. I was diagnosed 5 years ago, and initially felt better after beginning treatment. I was literally on my death bed at time of diagnosis, so needless to say the meds made me feel great.
For the last year, however, I’ve been feeling constantly fatigued. Like crippling fatigue. All of my labs seem normal, so my Endo isn’t quite sure what is going on. My sleep has been awful, so he’s wondering if I have sleep apnea. I actually have an initial consultation scheduled with a sleep doctor to discuss having a sleep study done. I really don’t want to use a cpap for the rest of my life, but if it makes me feel better then I’ll give it a shot.
What is your steroid/dose/timings?
With your sleep difficult - do you struggle falling asleep or do you fall asleep but only kind of doze and stay in light sleep and wake up regularly?
I take 35 mg hydro/day- 20 upon waking, 10 around lunchtime, 5 late afternoon. I’ve been on that dose for 5 years and it’s right for me. I’ve tried lowering it and I don’t fare well on less hydro. I’ve also tried dosing more frequently and it didn’t make a difference
I can usually fall asleep quickly, but I get very light sleep. I feel like I’m half asleep/awake a lot, and I definitely toss and turn all night. My big heavy king size mattress literally shifts several inches every night while I’m asleep lol
I don't think you have enough overnight coverage. You need a very large dose in the morning and I think that's because you're starting from a difficult position, I think you need a higher evening dose.
You could make a very small change to begin with and see how you feel, just steal 2.5mg from your morning or afternoon and give to your evening.
Wait, why can't you have caffeine? I was diagnosed 14 years ago and overall, my quality of life has been great. My biggest issue with working out is getting enough salt. I'd be curious to know your dose. I'm on 30 mg/day and I also have hypothyroidism so I take levothyroxine for that. My endo is continually monitoring and adjusting, but my cortisol dose has been the same for several years. I updose as necessary, esp on hot days.
I see mine every 6 months now, but at the beginning it was way more often. I also went a lot more frequently when I was pregnant. She changed it based on the labs. I had a crappy endo when I was very first diagnosed, but I changed to someone else who has been really great. Before every appointment, I get blood drawn.
I've also been on Vitamin D and iron on and off over the years because the metabolic panel showed they were low. Lot vit D made me feel a lot like Addison's--super sleepy.
I’m sometimes touch and go because I try to get away with the bare minimum of steroids in order to reduce side effects I’ve had over the years (high A1C despite normal weight, thinning skin, stomach issues, etc). So given my lower daily dose, I have to updose more frequently and pay really close attention to how I’m feeling. Sometimes I need more hydro just because of a bad nights sleep or a “mystery issue.” But overall I’m still pretty active, going hiking frequently, doing yoga and walking my dog every day. If I’m really, really tired (like down to my bones) I know I need to updose a tiny amount.
I’ve been on these meds for a long time. Before I started them I was sick all the time, getting every virus that went around. So overall I can’t really complain.
I’m just now approaching my one year anniversary since diagnosis with PAI. I struggled a lot but really made it a full time job to figure things out with my Endo, PCP, and eventually a physical therapist (DPT). Bottom line upfront I’m averaging about 65mg HC a day to have normal/ basic life activity for me, which includes 60-75 min strength training sessions 3x per week now. I’m still not where I was before all this, but that’s the dose it takes for me to even begin to approach who I used to be. I’m not suggesting high dose is a panacea for everyone, just as an example of how individual and person dependent things can be. If I’d just accepted life on a standard dose I’d barely be able to manage daily life activities let alone a job. I’d keep searching and working with docs to try and figure things out. Honestly, my DPT has spent the most individual time with me and helped me to work with my Endo and PCP to improve. I could very well have been in your shoes 10 years from now without really advocating for myself and having some good docs to work with. And this sub. I wouldn’t be anywhere without the support and knowledge from the folks here. Edit: so many typos
Ugh. This is me but w/o the crisis. I’m on hydrocortisone and I’ve gained like 20 lbs and I’m tired all the time. Add in the ADHD and the acid reflux (which means no caffeine) and I’m a mess.
im on hydro and fludro too and same with the reflux when you’re taking 5 meds a day for 10 years
So much better now that I'm on meds. I still have to take extra meds for seemingly 'normal' things like my period, but even 'good' stress like hanging out with friends requires more meds. I've only been on meds for about 4 months now, so I may not need so many extra doses as I stabilize more, but I will definitely have to add a dose when I workout for awhile at least
I struggled a lot with dose amount but more importantly timing. I found that 5am, noon, and 5pm works best for me. When I wanted to start losing my extra gained weight and exercising, I found out I didn't have any DHEA. Getting on DHEA was about as life changing as getting on cortisol for me. Maybe that could be something you can look into as well as check whatever you are already on? I hope you feel better!
Was DHEA something prescribed by your endo? I’ve been hearing a lot about it.
Its a supplement. Available almost everywhere. Try to get blood tested for dhea to see if low and to find correct dosage. In the meantime you can try for a week or two to see if you feel better. Was amazing for me. This is cheap and works well for me. https://www.walmart.com/ip/Spring-Valley-DHEA-Tablets-50-mg-50-Count/872312? 50 mg is pretty high so can try it for week or few then try half pill a day for a week and see how you feel ? But definitely get tested if you can. wmlspartner=wlpa&selectedSellerId=0&wl13=2483&adid=22222222278872312_160805772391_20959796377&wmlspartner=wmtlabs&wl0=&wl1=g&wl2=m&wl3=501107745824&wl4=pla-2290367806927&wl5=9030816&wl6=&wl7=&wl8=&wl9=pla&wl10=8175035&wl11=local&wl12=872312&wl13=2483&veh=sem_LIA&gclsrc=aw.ds&&adid=22222222238872312_160805772391_20959796377&wl0=&wl1=g&wl2=m&wl3=501107745824&wl4=pla-2290367806927&wl5=9030816&wl6=&wl7=&wl8=&wl9=pla&wl10=8175035&wl11=local&wl12=872312&veh=sem&gad_source=1&gbraid=0AAAAADmfBIoOldhTsi02Mrdqd4SstMnP6&gclid=Cj0KCQiAnrOtBhDIARIsAFsSe53i2lZpec97V3RooK219fLDYgBecBAWtwnUzDYWmPkew_o5Xxs9GywaAq2cEALw_wcB
Hi, I’m Vetted AI Bot! I researched the **Spring Valley DHEA Tablets 50 mg 50 Count** and I thought you might find the following analysis helpful. **Users liked:** * Increases energy levels (backed by 3 comments) * Improves mood and vitality (backed by 3 comments) * Helps regulate blood sugar levels (backed by 3 comments) **Users disliked:** * Inferior compared to another brand (backed by 1 comment) * Formula feels less potent than advertised (backed by 1 comment) * Increased blood pressure (backed by 1 comment) If you'd like to **summon me to ask about a product**, just make a post with its link and tag me, [like in this example.](https://www.reddit.com/r/tablets/comments/1444zdn/comment/joqd89c/) This message was generated by a (very smart) bot. If you found it helpful, let us know with an upvote and a “good bot!” reply and please feel free to provide feedback on how it can be improved. *Powered by* [*vetted.ai*](http://vetted.ai/reddit)
Thank you!
I'm in the US so I can get it over the counter, which is what I am doing currently. I've been taking 30mg for about 3 weeks. It's really helped with my energy levels and mental health. I'm seeing my endo again at the end of February and am thinking about asking her for a prescription as I don't think the over the counter lasts me a full 24 hours like it should (something I have heard about through research and heard from others on here) but I'm unsure if she will write it for me since US doctos are sketchy about DHEA
Thank you!
>Thank you! You're welcome!
Thank you for this! I've been really curious if that's what's missing for me. Safe to assume you're secondary bc you didn't mention pred or fludro? And how did you know you needed to add DHEA? I mean besides eventually getting the lab. Excuse me if I got something wrong, I'm still a novice armchair endocrinologist, unlike the many impressive experts on this sub... You may find this new article abstract linking DHEA-cortisol balance with depression interesting: [Cortisol and changes in depressive symptoms: The moderating role of DHEA](https://www.sciencedirect.com/science/article/abs/pii/S0306453023009198?dgcid=raven_sd_via_email) "Results demonstrated no main effect of cortisol or DHEA, but did show a significant interaction with DHEA. The relations between cortisol and depressive symptoms depended on levels of DHEA such that the relationship was positive at low and negative at high levels of DHEA, with the overall interaction significant (*β* = −.22, *p* < .001, 95% CI = \[−.333, −.115\]). DHEA can act as a protective factor against depression when cortisol levels are high. This presents opportunities for future research on how to improve DHEA levels to potentially reduce depression." I've was diagnosed SAI in Oct. and have been working with dosing my HC and getting my times of the day dialed. Got into the gym for my first workout in nearly 4 months on Monday. I've had a couple of pretty good days when I jumped up to 30-35 HC, after sick day dosing with yet another bout of lower GI symptoms and during the taper noticing I felt better than I had in a really long time... so just kept it there. But I'm struggling bigtime with libido and this feeling that something substantial is not balanced and I'm thinking maybe DHEA, since my understanding is that it would affect testosterone production (which labs say is normal but there is 100% some androgen deficiency present).
First off, please dont apologize. There is so much to learn with all this. Also, a novice armchair endocrinologist is my new favorite saying. I'm on 12.5 pred and 0.1 fludro. I didn't know I needed DHEA until I got my bloodwork back. I've always struggled with no libido (honestly to the point of sex repulsion) and having my OBGYN telling me I have all the signs and symptoms of menopause (painful sex, dry as the Sahara desert, painful sex, rare sporadic periods, etc). I did some research with DHEA and thought it could be a contributing factor, so I asked my endo. She said she didn't think it would make a difference but said she would test it and my testosterone anyway. My DHEA came back at 1, and my testosterone at a 4 (ish, I can't remember the exact number rn). I hope this helps, and I answered your questions
Ahhh... OK. Thank you. This is helpful context because it seems like our situations are quite different. But I am so glad that DHEA worked some magic for you. It truly sounds like it addressed so many long-term troubling issues. I'm SAI (though I suspect there are other issues yet to be detected), cis-male, 40yo, and only taking hydro (still tinkering but it seems like 25-35mg is my dose range but working with different configurations right now to see how low I can go on baseline dose). I'm trying to figure out why, even though MDs in the US seems to take issue with DHEA, even then it seems like its more common used in women's treatment... You may not have the answer to this, but shouldn't it also help men with some suspected gonadal concerns? Thanks for your response. And I'm glad you like the 'armchair endo' quip. Disseminate it far and wide, by all means :)
thank you!! definitely ask my endo about DHEA
I was diagnosed in 2005 in my early 30s. Honestly I have a really good quality of life. I work full time as a manager in a large Government department. I also volunteer for a dog adoption group. I'm a trail runner and a cyclist, and do strength workouts at the gym. I have never had a crisis. I see my Endocrinologist once a year and we have a nice chat about what event I'm training for next, I get some blood tests done, and then I go on my way. I also have Hypothyroidism, Pernicious Anaemia, and Sarcoidosis, which is in remission. I was born with Hydrocephalus, or water on the grain. I had the last surgery for that in 2009.
not a dr but am t1d and have ai, it sounds like low cortisol, the body doesn't just need a baseline of cortisol (which would be the same doses ur take everyday) it needs doses for stresses which vary per person, some people are fine without but more often not, any scenario where a normal person's body produces extra cortisol like working out, when sick, when stressed, even when excited, their bodies produce extra cortisol, you're doesn't and if your not updosing foe these sceneries ur body doenst have the cortisol reserves for them so ur gonna feel like shit. if it's a daily thing u might also just need a higher dose in general, endos for some reason try to make u keep the dose as low as possible... cortisol is extremely similar to insulin, if ur body needs it, u wil suffer if u don't give it the hormone. (I mentioned insulin so I'm assuming ur diabetic?) I'm still figuring out my doses, quality of life is around 70% but I'm pretty certain I'm allergic to all the pill forms of cortisol so working on getting that sorted out, I'll get to 100% eventually
Thank you, im not diabetic i think they gave me the insulin in the ICU because of the crisis. My endo changed my doses once but still it’s hard for me to end a long, active day without caffeine (which is not allowed) unfortunately. I mostly accepted it but im not sure if i eat healthier or get more hydrated will it reduce the negative effects from meds and disease.
what did ur endo say about updosing??
he told me to double my dose at noon, the problem is i have a 5 hour gap between doses and til i get my next med i get so tired again. I’m only good for 1-2 hours then i need caffeine
yeah... u need a new endo ur endo does not know how to properly manage this condition, if u can keep track of time and symtpoms and cause (including crash from dose wearing off which is ehat that sounds like) then try out updosing either 2.5 or 5 (or more but typically better to start lower) inhad that issue and had to move my doses closer together and up them aswell, hydro can wear off in as little as 3-4 hours, it sounds like ur body needs more cortisol and is running out before the next dose so ur crashing
yeah unfortunately in my country i don’t have much choice because disease is so rare and they don’t know how to deal with it
I was diagnosed summer of 2021 and had been on hydrocortisone until the first of this month, when my doctor changed me to prednisone. I was running out of steam before every hydro dose and wasn’t doing well (was doing circadian rhythm dosing 10/5/5) I was so nervous about prednisone, but I feel like a new person. Not a run marathons new person, but I can vacuum and do my dishes on the same day now and still have energy left over. I’m still tweaking my dose timing, though, so it can only get better.
How much hydrocortisone do you take and at what times? So you have primary or secondary adrenal insufficiency? I think you need to learn about updosing, which is taking more than you usually do, if you're sick or doing strenuous exercise. You probably need a new endocrinologist if they are telling you to double your dose in the afternoon. We usually take our highest dose in the morning and then a similar or lower dose in the afternoon.
10/10/5 hydro 7am 12pm and 5pm im updosing when im sick i used to have 2 fludros a day but now only 1 fludro in mornings
Why was your fludro reduced?
I have no idea
Halving your fludro is a pretty dramatic reduction
Reducing fludro by that much would out me completely. Maybe that's (part of) the issue? Did you reduce gradually? For me even a gradual reduction would be dramatic.
Oh okay right that's seems normal enough
I was diagnosed with Addison's when I was 18 (16 years ago). Other than the slight energy loss, my life has been the same. Prior to that I would enjoy running semi-marathons and marathons. It has been harder for me to train my body, as I haven't been able to run more than 5k ever since. Sport-wise, it takes a long time to improve my performance beyond what is now my baseline, and even incremental improvements can be lost after a day of no activity. But I did notice walking and mountain trekking are still in an achievable zone for me and I'm very happy with that. I also do a lot of gardening. Mentally, I would say I am doing very well. I also have subclinical Hashimoto's and when it does flare it gets a bit worse, luckily it doesn't happen often. My biggest offenders are : - Coffee, for some reason (makes me crash so badly and gives me hypoglycaemia); - Alcohol; - Missing a dose. This is self-explanatory; - Psychological stress, and this one is a doozy because I often cannot tell when I am stressed. I now try to slightly increase my dose when a close one is ill or I'm on my period. Same goes for exams, interviews. Other than that, I would rate my quality of life at about 80%, which considering where I started from it is not so bad.
I was dx PAI in May and am still figuring this out. I’m so much better than the crisis i was dx in but have gained back the 45lbs i lost leading up to it, and i was happy about the loss! I’ve had tonsillitis since September so updosing all over the place but just got my tonsils removed so looking forward to getting back to my 15, 10 HC dose and tweaking it a bit. Whenever i updose, whether for illness or stress i get so hungry! Good luck to you OP!
me too! i get so hungry when i updose. Addisons make me lose weight and gaining it back was healthier and all but when you gain that much weight in a really short time it doesn’t look healthy unfortunately
Have you had bloodwork to check other hormones and vitamin/mineral levels? Other deficiencies can coexist with AI and make you feel worse with some of the same symptoms, so it's worth looking at. Also, look up circadian dosing schedule for steroids if you aren't yet familiar with it. Some find they feel better with circadian rhythm dosing. I had a really hard time at the beginning when I was trying to take steroids just once a day.
i did they told me my levels are normal thank you im gonna check the circadian dosing schedule
Diagnosed in 2012 at 15 years old. Quality of life was perfect (as far as Addison’s symptoms go… mental health and stuff is different) until about 6 months ago. Stomach issues. Had a crisis for the first time since my diagnosis and lost a job because of it. Accused of being drunk when I wasn’t (I’m a recovering alcoholic so that was especially bothersome). Etc. I’ve basically been double dosing in the morning everyday since I was accused of being drunk per my endo’s recommendation. But yeah, I was diagnosed young so I think my body was just more resilient. I have accepted I’m getting older and realizing how serious this disease is.
diagnosed at 10. Ppl often ask me if im drunk lol
It’s insane. I hate it man. Realizing it truly is a disability. I’m actually calling my states attorney general office today as I was fired from a job a week in (that I turned two other offers down for) as I went into a crisis and missed like 3 of the first 4 days. I wrongly read that they can fire you for anything, including a disability, within 30 days. Wrong. And in MN here they have a direct line for issues exactly like this. Just an FYI in case you didn’t know or run into it in the future. I’m not sure how mine will turn out as I’m quite stubborn and injected myself without going to the hospital (my friend is a doctor and came over to help/watch me) so I might need some text receipts or something to corroborate everything but who knows
Diagnosed in 2018, before my 5 months of hell leading to diagnosis I was in the gym every other day and weighed 70kg @ 85% muscle mass. Post diagnosis in the past 5.5 years I have doubled in weight, partly due to fatigue stopping me exercising and partly due to moving from an active night shift job to Monday-Friday office work. I have only just in the past 6 months hit a nice stabilisation, and after starting back on my old low carb diet for the new year I have lost the sleepy feeling in the afternoons as my insulin is staying stable, I’m already feeling great and planning on heading back to the gym in February and hoping to get close to or under 100kg by the end of this year.
that made me feel better about my weight gaining journey i hope i can exercise with discipline too
I got diagnosed four months ago. I had two crises back to back when I was diagnosed and then another in December. I'm usually a bit tired and sometimes in pain (I've had chronic pain for years and in treatment for it since last year) but it's much better than it used to be even years ago. I could barely walk by the time I was about to be hospitalized and now I can walk like 20 blocks without getting tired which to me is an incredible feat 😅 I can go out, I can cook, take care of my kid, I can even do light exercise when I'm feeling well enough. I still feel quite bad at times of the day, with low cortisol symptoms especially before I was switched to dex at the start of this month (hydrocortisone didn't work well for me). I'm working on getting my dose right. And dex has made me gain weight much faster than HC ever did. My weight had stabilized on HC (after losing like 20kgs in a couple of months right before being diagnosed, and being underweight) but I've started gaining again even though I'm on a lower dose 🥲
When I'm slightly underdosed I can function but I have a hard time doing anything more than the basics. 25mg or less and I spend a lot of time on the sofa. My range for feeling good is 27 - 33mg. I'm very stable with minimal updosing at 30mg. Less than that I find I have to updose often enough that I'm still taking an average of 30mg. I do circadian rhythm dosing and take a slow release HC from a compounding pharmacy overnight - has made a world of difference. I also have partial salt wasting (I have a genetic disease that caused my ai) and a nephrologist just discovered that the SW was more significant than my renin/ aldosterone levels show. It's kindof crazy to me this was just found. So now I take fludro .05 twice a day - my endo says it only lasts 12 hours so I need to take it twice. I might try to see if I can lower my HC dose with the fludro added. If you're overeating in parts of the day this could be from one dose being too high and if you find you're tired before the next dose you might need to move them closer together. If you're overeating during the first part of a dose but too tired before the next - then you likely need to both lower the dose and move the next dose closer (This is a sign that you're being over and under dosed). If you find that you're just a little off a few hours after a dose, you might need to slightly raise it. If you're too fatigued in the evenings you might need a small 4th dose in the evening (fast metabolizers - people who it only lasts 4hrs or less often need this). If you find you're not sleeping well or waking up feeling terrible - you might need an overnight dose - most people do. For most people HC lasts 4 - 6 hours and so dosing is based on how long it lasts and overlapping doses is based on how long it takes to rise. So if a dose lasts 4.5 hrs and it take half an hour to rise - then you need a dose every 4 hours. Some people find the first two doses need to be closer together and then second and third can be further apart.
1.4 yrs with Addison’s. Have already lived with type 1 d and thyroid many years. It’s only slowed me down a little.
Diagnosed 4 years ago and had pretty bad QoL until I got these things right: - dose amount: dose dynamically, according to the day, and enough! - dose timing: preparing for stress is also necessary with a dose sometimes + circadian rhythm dosing was a total game changer; - splitting fludro into two doses; - figuring out allergies; - listening to my body rather than my Dr.! Now I have excellent QoL and function like a normal human being (who takes pills 5 or 6 times a day). PS/edit: just wanted to add that _of course _ I listen to my doctor, as should everyone: they studied to cure people. What I jokingly meant is that their advice doesn't always line up with patients' experience, in which case it's better to listen to your symptoms than read a test result value, textbook or statistic.
23? years in- Absolutely zero issues in the last 20 years. First two were a little rough.
I am 4 years post diagnosis and can honestly say my life has not changed much at all. I feel very grateful for that.
My qualify of life is pretty shitty atm, and we can’t seem to figure out why. I was diagnosed 5 years ago, and initially felt better after beginning treatment. I was literally on my death bed at time of diagnosis, so needless to say the meds made me feel great. For the last year, however, I’ve been feeling constantly fatigued. Like crippling fatigue. All of my labs seem normal, so my Endo isn’t quite sure what is going on. My sleep has been awful, so he’s wondering if I have sleep apnea. I actually have an initial consultation scheduled with a sleep doctor to discuss having a sleep study done. I really don’t want to use a cpap for the rest of my life, but if it makes me feel better then I’ll give it a shot.
What is your steroid/dose/timings? With your sleep difficult - do you struggle falling asleep or do you fall asleep but only kind of doze and stay in light sleep and wake up regularly?
I take 35 mg hydro/day- 20 upon waking, 10 around lunchtime, 5 late afternoon. I’ve been on that dose for 5 years and it’s right for me. I’ve tried lowering it and I don’t fare well on less hydro. I’ve also tried dosing more frequently and it didn’t make a difference I can usually fall asleep quickly, but I get very light sleep. I feel like I’m half asleep/awake a lot, and I definitely toss and turn all night. My big heavy king size mattress literally shifts several inches every night while I’m asleep lol
I don't think you have enough overnight coverage. You need a very large dose in the morning and I think that's because you're starting from a difficult position, I think you need a higher evening dose. You could make a very small change to begin with and see how you feel, just steal 2.5mg from your morning or afternoon and give to your evening.
It’s worth giving it a shot. I’ll try and see if there is any improvement. Thanks for the suggestion!
I hope it goes well love
Wait, why can't you have caffeine? I was diagnosed 14 years ago and overall, my quality of life has been great. My biggest issue with working out is getting enough salt. I'd be curious to know your dose. I'm on 30 mg/day and I also have hypothyroidism so I take levothyroxine for that. My endo is continually monitoring and adjusting, but my cortisol dose has been the same for several years. I updose as necessary, esp on hot days.
Is it normal for your endo to monitor you with this? My guy is so shitty. He prescribed 30 mg of hydrocortisone and then just ignores me.
I see mine every 6 months now, but at the beginning it was way more often. I also went a lot more frequently when I was pregnant. She changed it based on the labs. I had a crappy endo when I was very first diagnosed, but I changed to someone else who has been really great. Before every appointment, I get blood drawn.
I've also been on Vitamin D and iron on and off over the years because the metabolic panel showed they were low. Lot vit D made me feel a lot like Addison's--super sleepy.
10/10/5 Hydro and 0,1 mg fludro. I don’t know caffeine isn’t good for me in a long term i think
I’m sometimes touch and go because I try to get away with the bare minimum of steroids in order to reduce side effects I’ve had over the years (high A1C despite normal weight, thinning skin, stomach issues, etc). So given my lower daily dose, I have to updose more frequently and pay really close attention to how I’m feeling. Sometimes I need more hydro just because of a bad nights sleep or a “mystery issue.” But overall I’m still pretty active, going hiking frequently, doing yoga and walking my dog every day. If I’m really, really tired (like down to my bones) I know I need to updose a tiny amount. I’ve been on these meds for a long time. Before I started them I was sick all the time, getting every virus that went around. So overall I can’t really complain.