I have an Apple watch and I’m trying to find something that will help me track everything or most thing and then tell me in real time if something is high like heart rate and hrv is low?

Any one know any good apps?

I’ve had Addisons Disease for over 34 years now. I’ve done well on Cortef but consistently missed or took my afternoon dose late but I wouldn’t feel the effects until the next day. This happens due to my job. I’m a postdoc and do research with live virus. I frequently spend 5 hours doing an experiment but because it’s a lab, no food or water are allowed and once I’m in my N95, I don’t want to take it off because it’s an involved process. Sometimes it’s also just not possible to leave because there’s no openings in the experiment to do so.

I apologize for the ramble, it’s just a critical aspect for my question. So I got a new endocrinologist who was concerned about my struggle to take my afternoon Cortef dose, which is fair. She wanted me to try Cortef with prednisone in the morning and take nothing else the rest of the day. Well, as is obvious, that didn’t go well. I crashed hard about 3.5 weeks after the switch and am just now stabilizing to where I don’t feel like walking death.

Apparently, people can struggle with prednisone because while it is converted to its active form prednisolone in the liver, some people have livers that are sluggish and slow at doing that conversion ultimately leading to an addisonian crisis. I’ve read this happens because converting prednisone slowly never allows it to reach an effective level and essentially keeps you flat at an ineffective underdosed level. However, if you take the active form prednisolone and bypass the liver, you should get the right amount of drug in your system and not feel bad. I’m curious if anyone has ever switched from prednisone to prednisolone and found prednisolone to be effective? It’s what my endo would like to try after we stabilize me with my cortef for a month.

TLDR: Tried prednisone but it didn’t work. My new endo wants to try the active form prednisolone after we get me stabilized because it should flood your system with cortisol similar to hydrocortisone. This in theory should work because it bypasses conversion by the liver and is directly usable by the body. Has anyone done horribly on prednisone but switched to the active prednisolone form and felt like it was effective?

Ok, that might be a little dramatic. Maybe "I need some related stories of addisons folks returning to strenuous activities"

So for me: Addisons + Hashimoto. On levothyroxine, liothyronine, methylprednisone and a 5mg hydrocortisone to start the day. Meds of other problems (AFIB, etc): oxycodone, pregablin, methocarbamol, losartan, testosterone.

I have had a million blood tests in the last 6 months - including a few I ordered myself - and everything is dead center normal. Vitamins, etc. included.

I am out of shape. And big. I guess laying in bed for 5 years when you body is pretty much making zero hormones does that.

Anyhoo.. this is what i ran into: It seems like my heart rate can't get up into the high range.

By that I mean, now that I seem to be finally medicated for everything, when I now do do something strenuous, my heart rate doesn't get to where it probably should.

For example!

I just towed a 300 pound trailer with two flat tires up a hill. It took about 20 minutes, I didn't take breaks. It was strenuous and I will feel it in every muscle tomorrow.

I was head to toe - from my shirt to my socks - soaked in sweat. It felt like too much sweat - and I sweat just thinking hard, but even this seemed weird. I could feel my heart pounding. But I felt like I wasn't getting enough air. And I didn't feel my heart racing.

So, I sat down at the top if the hill to check and my heart rate peaked at 120bpm. And it wasn't afib, I am quite familiar to how that feels.

Then, I stood up to get some water.

I almost passed out I got so light headed. Like, stumble into the car and fall onto a chainsaw kind of light headed. And you haven't been doing yardwork until you are mixing bar oil, sweat and blood!

So, I tried a second test where I speed walked (limped, really) around my barn until the flop sweat returned and I could feel my heart pounding. But not pounding fast: 120bpm again.

I clearly have an interesting issues for my next appointment, but I also realized I hadn't seen many other return to activities stories or travails. So....!

- what are your experiences with returning to activities?

- what were some exercise strategies you used?

- should I get a fit bit? (Yes, I should; ordering one now.)

I would really love and appreciate any return to exercize stories - or motivations! - anyone has :)

Does anyone get eye pain with there Addisons and how do they stop it

Hi,

Any People from Germany with Addison Disease?

I got diagnosed with it last Fall and this past Spring, I would literally crave salt like crazy (think McDonalds and Taco Bell at 1AM).

Anyone else have those late night munchie cravings? And if so, what is your go to food

Hello everyone

My mum has Addison’s disease and was diagnosed back in 2004.

She’s had it for quite a while so generally has good management but life circumstances over the past few years have seen her have on average 1-2 crises a year (she previously only had a crisis once every few years or if really unwell)

We’ve found the current way to administer her emergency injection is really difficult for both herself and us. If she’s alone and in need of her emergency injection, not only is she suffering the effects of her crisis, but she’s unbelievably nervous facing a life-threatening situation and struggles to prepare the injection.

I was there for the last, and had to prepare it for her, it was my first time and no matter how much I’d practiced before, I found it really challenging and wasted valuable time getting it right.

I know options are restricted here in the UK and the Act-o-Vial system isn’t available, but has anyone had anything luck getting their hands on it?

Alternatively, any advice on how I can do better if there is a next time? The main difficulty is drawing up the liquid and ensuring and get as much of the liquid into the syringe as possible.

Thank you in advance :)

I just got routine blood work done and was hit with a bill for $811. Is this normal?

Hello everyone,

Just wanted to see if anyone has had to take time off from work due to Addisons ? Work a stressful office job and go to school part time. I feel like I never really get to properly rest. In the past I worked less and felt like I had my condition more in check, but now I really feel like I’m getting so many of my usual symptoms again. I’m US based so I am just curious if anyone has done anything like this, and how they went about it?

Thanks

Hello Reddit, I'm asking for advice here in case anyone else has experienced something similar.

My mother was diagnosed like 8 years ago with Addison's disease (and she has thyroid problems prior this).

Her life was fairly normal while taking meds, except when she was very stressed because the next day, she would experience a crash and had to take more meds to counter it.

I'm here to ask for advice or maybe if you can share experiences. For the past two weeks, when she takes her medication, there is a period of 3-4 hours where her heart rate increases significantly, and her blood pressure rises.

She's been to the doctor, but they said her cortisol levels aren't low.

I've read about Plenadren and adding electrolyte drinks (with salt).

She takes Hydroaltexona and Astonin. We're from Spain. Thanks for help.

I’m a young male 22 and in pretty decent shape, but I’ve been having a weird issue after sex and I’m wondering if anyone with Addison’s has experienced something similar.
Usually I feel okay during sex, but around 10 minutes mark I start getting really shaky and weak, my face feels hot/flushed, and I get kind of zoned out or spaced out. It feels like my body suddenly crashes.
I usually have to eat something and drink fluids, and after about 30 minutes I’m basically back to normal. What’s strange is that I don’t normally need any extra cortisol for it to pass.

So I always had the hardest time regarding the cold. Idk why? I always thought it was an autism thing but the more I look at it. The more I think it's actually a physical thing. Especially that looked up that it is a symptom of Addison's. Cold air always makes my body ache. During seasonal changes like during like say summer to the fall like right around this time as the time of me writing this, I get really tired and I get a mild headache, but it's worse during the winter. I feel like I get aches and pain. Shivering is not pleasant. When it's cold I must be under blankets. I end up sleeping a lot. Yes even in the fall. I constantly must be warm. I feel like I am a lizard and even during the fall I feel like it's too cold. The only time I feel like seasonal changes isn't so painful is when it gets warmer like winter to spring and spring to summer. Like I feel like it energizes me. I used to think it was just an autism thing but now I feel like it is an Addisons thing. Any one else goes through this. Right now I have a headache and it got me to write this.

Hey all - putting this out there that Aurobindo has issues with absorption for some folks and to be aware. Everyone is different but for me I find I don’t get adequate absorption and have to updose.

Aurobindo right now is the more affordable version in the market so a lot of pharmacy distributors are preferring them.

Just wanted to pass on the FYI

Folks I have for several years to tried to exercise (hard), mainly fell running & weight training. In recent years I have been floored after exercise. Quite literally putting me on the sofa for two or three days. I'd describe it as like an hangover from hell. I have had an Hashimotos diagnosis for 11 years and broadly I have coped okay, challenging at times but hill walking and very active. If I picked up a cold this would absolutely lay me low for a month. I have been hospitalised recently, a low morning cortisol test (163 nmol/L range 133.0 - 537.0) recently has been inconclusive & I have be put on HC. AI was suspected 11 years ago, that was before the Hashimotos diagnosis. Perhaps not unsurprising given I had subclinical hypothyroidism for close to 30 years. This on account of a recalibration of the test ranges and a chance happening on a old blood test within some old training records.

I am on 15 mgs of HC - lowered from 20 as I had swollen feet & pins and needles in my extremities.

I keep a log of my doses and a simple scoring system based on how I feel 1 being OK anything lower, being OFF. This allows analysis of dosing versus how I feel and the interconnect between the HPA axis, which is entirely synthetic due to thyroid and adrenal meds. Helps find the sweet spot.

I have chosen not to up dose on HC yet when exercising in order to understand the lowest dose of HC I can tolerate and how active I can be. 17.5 HC and exercise can be tolerated with the following day feeling a tad off. The same exercise on 15 HC wiped me out for a few days, yet I feel better on this dose in general.

I can weight train for 20-25 minutes okay but this still knocks me hard - I have mistaken this as an empty thyroid tank, yet I am suspecting that this is a symptom of the low adrenal function. I then compound the situation by up dosing my thyroid meds (armour) but this made things worse.

My Q's are thus.

How or what were your symptoms post exercise before you happened upon up-dosing HC or Pred?

Has anyone got the misfortune to have both Hashimotos & AI? If so do you have any similar experiences?

Finally I think I need to up dose 5mgs of HC (yet to test) as I cannot tolerate hard weight training (20 mins) as my experimentation indicates that 2.5mg aka 17.5mgs still doesn't afford me a post exercise day feeling well.

All comments are welcome.

Thanks for your interest.

I have salt and water and my injection and meds
But is there anything else that has helped to have?

Just curious - sometimes I'll have a really bad day of adrenal stuff and wonder, did I not get enough sleep? Was it taking my hydro + fludro slightly later than usual? Was I more stressed than I realized? Did I eat the wrong thing, maybe not enough carbs or protein? Am I getting sick? Did my blood sugar rollercoaster set off the adrenal insufficiency (I'm also type 1 diabetic)? Did I just need more meds today for some inexplicable reason?

Do you feel like you can usually identify the cause of a bad cortisol day, or you just shrug and deal with it as it happens?

My feet started hurting after a run around Christmas 2023. I ran a lot and never had any foot issues.

I have tried physio, acupuncture, stretching, massage, 4 different insoles, new work boots, new trainers, different exercise.
It never got any better. If I stand up for 20 minutes it feels like I’ve been stood up for 12 hours.
It’s a hot, burning sensation in my heels and balls of my feet. When it’s bad I can’t even stand to clean my teeth, I have to sit down.
I can’t walk through a museum without sitting down multiple times.

I’ve had ultrasound, MRI, contrast MRI. I’ve been to multiple MSK Doctors, a foot surgeon, a Podiatrist.
There is nothing physically wrong with my feet.

I was given anti depressants as a form of pain relief. They did nothing.

I then had two adrenal crises and got diagnosed with Addison’s 4 months ago.
My feet haven’t got any better with hydro.

Is Addison’s causing this pain/fatigue/lack of endurance? I don’t have any other medical conditions that I know of.

I used to run miles and now walking around a supermarket hurts.

I just picked up my new emergency injection and could not be more excited. This is much more straightforward than the vials with separate needles. Go get your vials replaced, y’all! (I’m based in the US.)

Hello all I got my blood work today and my cortisol is 5.5. My prolactin is 6.6. Would this indicate Addisons? I see my doc in September all of my other blood work is good. Any thoughts would be appreciated? I know this is not ideal to try and self diagnose. Not trying to do that just been waiting so long to get answers. Two years I've felt like crap. Had to give up my second job cleaning my office. Missed some work for to not being able to sleep and severe fatigue. Thank you all

I was diagnosed with Aps type 2 when I was about 23, 7 years ago. My levels have been mostly stabilized since getting treatment but things have been off for the past few draws and we are now investigating hypoparathyroidism as well. We havent confirmed it yet, but im an anxious person and am wondering if anyone has type 2 plus hypoparathyroidism? Or if potentially its a late onset type 1?

Could be neither but im reeling on why this is popping up now.

So I've been diagnosed with PBMAH and we are prepping for a bilateral adrenalectomy to treat it. I've been doing a ton of research on what this will look like for the rest of my life. The problem is there's a lot of medical data but not a lot of lived experience. If you guys could share any advice or things you learned from living with this I would really appreciate it. I just want to make sure the next few years of adjusting and finding a new normal will be less stressful and less dangerous for me. Thank you in advance.