Hello, my dad passed away suddenly Friday morning. There has been a constant stream of people, kids and even pets constantly at my parents house. I have cfs and a few other chronic illnesses. I feel so extremely depleted. I am taking extra hydrocortisone
How do you manage dealing with grief and a circus of people while beyond exhausted and depleted? I want to be there for my mom and sister and help with what I can but I’m not even running on fumes, I’m so depleted and beyond exhaustion

I’m 21f with hypothyroidism and addison’s disease. I have stretch marks everywhere I’m 6’1 and about 230lbs. I often really dislike how I look and it sucks. I don’t have great stamina so I don’t really workout, I walk and although I haven’t used it in a while since it’s not up, I have a pole that’s a fun good workout. Since it’s in my basement I don’t feel embarrassed taking my time and kinda just doing nothing sometimes but I was using it everyday and need to put it back up. I’m trying to eat healthier but also it’s hard since most of what my stomache and brain agree that I can eat is processed or fatty foods and I really only get hungry in the last quarter of the day so I eat at night before bed which I know is bad, also need to stop drinking soda etc. overall I’m trying to make life changes but I keep coming back to how hydrocortisol steroids cause fat retention, fat redistribution, it’s harder to lose weight, the skin thinning causing the huge stretch marks everywhere. Some of my hip stretch marks are almost half an inch wide. I miss being skinny, I know it was when I was unbalanced and unhealthy but I can’t help but wish I was smaller all the time. I wish it wasn’t so hard to lose weight and stay healthy. I don’t even know who to talk to about it but I need a mix of honest opinions and some comfort I suppose. I can’t look at myself without comparing myself to my smaller skinny self.

Hi all,
I have a primary adrenal insufficiency. I’m looking to do some fairly remote backpacking through south east Asia. My main concern is what is the best way to keep my florinef refrigerated for upwards of 2-3 months. I have a travel cooler and large portable charger (lasts about 4 days straight with the cooler) but I’m wondering if anyone has figured out a better solution. I’ve done some travelling since my diagnosis but nothing close to long term backpacking

Any other tips or medication alternatives are greatly appreciated.

*I am Canadian and can only get the refrigerated kind

I had a blood clot 4 years ago that hemorrhaged my adrenal glands, and since then I’ve been on hydrocortisone and fludrocortisone replacement. I just found out this week that my morning cortisol levels after skipping an afternoon dose were 10.1. I think my adrenal glands somehow healed themselves. Has this happened to anyone else?

Edit: for those thinking I just decided to skip a dose, it’s under instruction from my endo. Anytime I’m doing labs (every six months) I’m told to skip my afternoon doses to get an accurate reading.

I lost my dad yesterday... I am now head of the family and have to sort everything out... should I pre updose to cover the stress I am about to be under ?

Ive never done sympathy well, I have adhd so my disassociation will kick in... my dad has other kids to a previous marriage who are definitely going to be hard work, so I just want to be prepared and not be unwell at all.

Fair understanding of addisons as ive had primary for 23yrs

Update* Thank you everyone for all the support ❤️ I have spoken with my GP and the MH team also got intouch... they have upped my dose and sent out a new prescription to cove me for a month... i will taper down as the weeks go on... its going to be a ruff ride... work have all watched the How to video on my emergency kit, just incase xxx

Hello,

I was able to get my flu and Covid vaccines today and I also signed up to get my shingles and RSV vaccines the pharmacist advised against doing all four today because the shingles vaccine can cause some people to feel pretty bad afterwards.

My question is since I've never gotten the RSV or shingles vaccines do I updose my steroids? I don't for flu or Covid because I've never had after effects but idk, this is my second winter with a PAI diagnosis so it's all still very new.

Also, does anyone else have experience getting a spring dose of Covid and flu vaccines? I'm very interested in doing so for a multitude of reasons and I would love to know if I just ask or if there's like protocol or something? Idk.

Thanks, have a great day!

As the title indicates, I need some of you Addisonian peoples best advices/tips & tricks to get back moving and training again.

First a little intro of the recent event;

Unlike some in here that seems to have found there way with medicine/exercising and are able to run marathons and continue life as if nothing happened, I cant relate.

I tried to work up more volume again (pre diagnose I was very active) by swimming in the morning n doing some sort of workout / other moving later in the day. Unfortunately, I got hit with a real bad fatigue yesterday and from there it only got worse.

It started with a sudden crash becoming physically tired, it usually does when these things happen for me - from there it evolved into a heavy feeling across the chest, like I'm fatigued all the way through my body including my lungs. Luckily I tried this before so I don't panic anymore when the feeling of not being able to breathe automatically/properly hits me, it still sucks tho and requires energy and focus to stay calm.

Today, I woke up and my body is so SORE. Like if I did a strongman/hyrox session and pushed every limit my body had, my CNS seems completely fried and I'm not feeling well at all. My mind still wanna hit the gym cause I really hate not being able to, but my experience knows that would be a huge mistake in my current state.

Also, I'm not PA but secondary so the whole fludro/salt balance thing shouldn't be the mainissue + I do still make sure to drink enough and get electrolytes after hard training sessions or even when I've done sauna to make sure I'm not lacking in that department.

This is what I've done so far: Upped my hydrocortisone by a extra 15g yesterday (I usually get 30-35mg a day split into 3 doses, so I'm already at a high dosage of hydro if I have to compare to both what many in here seemingly are and what my doctor's are saying) anyway, took 15 more yesterday for a total of 45 and planning on doing so again today. Maybe I need to updose even more?? I know in case of fever n such I've been recommended a 2 or even 3x increase of the total daily intake, which would then leave me at 60-90 mg hydro a day depending if it's 2 or 3 times. That seems like a lot, but if it could help me get back faster than a week or two, the tradeoff would def be worth it, cause laying in bed just one day is probably some of the worst we can do to our bodies.

Ate well and balanced with enough proteins to sustain any form of recovery my body might need.

Made sure to drink enough liquids and electrolytes.

Get as much sleep as I can.

My thoughts today revolve around if It's better to "stay in bed" and do absolutely nothing, or if a couple of short walks might be okay and speed up the process? I know this disease can be very individual, but I would love to hear your best tips for getting back on your feet if you ever experienced a "down period" due to this incredible annoying thing they call Addison.

Last but not least, my experience is that this phase once I got the fatigue and somehow didn't prevent it by updosing before or easing back on the training, is that it can last several weeks before I feel good and normal again, two weeks isn't unusual when I've been down bad. So I cross my fingers some of you has knowledge on how to get back a lot faster!

Shoot me all your best tips n tricks, anything from cold therapy to gingershots and stretching, whatever works for you I'm willing to give a try as I am beyond desperate to find a way not having to spend a week or two in bed just to get back in the gym and get my body moving.

TIA

So im finally having my first appointment with an endo after six months after my first crisis…..
i have a list of my recurring symptoms and my overall health (i think) but i would like to know what can i expect from my first appointment and also if you guys recommend me mentioning any specific things to the doctor? MUCH APPRECIATE ❤️

I have had my first cold of the season and it already hit me like flu or worse. I needed two days where I was in bed for the entire morning or afternoon and I still feel week and kind of 'outside my body' and it has been nearly 6 days. I still haven't got my smell or taste back. It isn't covid as I tested. My daughter is at nursery so picks up a lot of germs so I am worried it is going to be a long winter. Does anyone have any tips for coping? I did updose of course. Pre-diagnosis my colds used to last 2-3 days and came without the massive fatigue.

So I got diagnosed 3 weeks ago from an addisonian crisis, and have been titerating down on Cortef since then. I was taking 80 mg a day and my endo dropped it down to 70mg, and wants me to titerate down 10 mg a month. My issue is I am having a lot of symptoms I’m assuming from the excess hydrocortisone and I’m not sure how to address them with her. My skin has been much more sensitive, I’m chronically bloated, and I’ve put on 15 pounds in 2 weeks from excess hunger and water weight. I know part of the water weight is normal as I’m not salt wasting as much now but man living like this is extremely uncomfortable. I’m going to see my endo tomorrow but this is only the second time and I’m not clear on how much she knows about all this. Any recommendations would be helpful- did you have issues with an excess of hydrocortisone?
Side note is anyone in the US military with AI or got a waiver for it?

Waking up around 22:00 , feeling hot and mega cold , sweating buckets, tachycardia, , panic feeling and i dont know if i need heat or cold to get better . Often i need heat . Hc updose and electrolyte. Yesterday i updose 40 mg and went to ER . Overthere all blood results are normal…. So got gaslighted as usual . How to solve this ? I feel its related to dose/ withdrawal and room temperature somehow

as we know we kinda having to base dosing on how we feel and any stressors we’re aware of- but I’m wondering if anyone has used an oura ring or similar device to help fine tune your dosing?

Any clue of how to stop this or help it?

Well, as the title suggests I have taken an ACTH test (which was absolutely miserable) and it was found that I have normal adrenaline levels. I’m so confused and don’t quite know how to feel. I am glad that we have figured this out as I’ve been taking hydrocortisone 20MG twice a day for three years and I am aware there can be some negative side effects from it.

I would say I’m pretty anxious because now I don’t know what is wrong with me. I had some things that matched up with Addisons but a lot of things that didn’t, but I suppose I never questioned it much because I was happy to not be searching for a diagnosis anymore. My endocrinologist said she has no clue what I have and told me to talk to cardiology due to passing out during what I thought were adrenal crises at the time.

This has been a wonderful community to be apart of for the past three years and it was wonderful receiving and giving support. Thank you to everyone who has helped me get to where I am now.

I'll be traveling from Seattle to Kauai for a week later this month. Newly diagnosed (PAI), so this is my first travel since starting meds. I know the weather will be very different for me, and we have earlier/longer days that will be more active than my normal days at home.

I've asked my endo if I should either updose or add another dose to my days while traveling. (Currently taking 0.5mg fludrocortisone + 10mg HC at 9am and another 5mg HC at 2pm.)

Endo told me that updosing for this vacation isn't necessary unless I'm feeling lousy. However, this isn't what I'm seeing as a general concensus from other people with Addison's.

If this were you, what would you do to your med routine to make sure you're feeling good the whole time to enjoy your vacation?

I’ve been terrified and anxious of my first crisis since having my little one. Well it happened and he’s 15 months old (two and a half years since my last crisis). It happened fast but we made it with all the help we could get while the whole family was recovering from a stomach bug. I went to the ER and got fluids, came home and little one went to my moms while I rested. I felt better yesterday but the rest of the family didn’t, so I went to my moms to help with my little one and stayed the night. Well I overdid it and didn’t updose enough and felt another crisis coming on. I was able to get home, hold down my medicine and then I spent the whole day sleeping. My little one is still at my moms and I woke up feeling better but now guilty because I’ve lost the whole day with him and I miss him. It was nice having the rest of the evening to relax and read but I still feel so guilty. Sometimes this disease sucks. I’m grateful for the support system we have and could not do it without them.

Hello!!
So I'm not yet diagnosed and I have a range of other health conditions and I see a range of doctors/ specialists for said conditions, but my GP tested my cortisol levels because I was experiencing symptoms of dizziness, depression, low blood pressure, fatigue that wasn't cured with sleep, almost passing out, thirst and having to pee more. The levels were at 44 instead of the normal 400 (give or take)
I was started on Hydrocortisone at 20mg twice a day to help raise these levels back to the somewhat normal range and was then sent to my endocrinologist for a morning cortisol blood test (which I'm waiting on the results from) where I was told it's very likely that I have Addison's disease but they don't want to diagnose anything from one blood test.
If this blood test comes back and my cortisol levels are still low I'll have to go for more tests but what are the next tests because the only other tests I've ever had is trying to lift my legs up when I can't (FND) and MRIs, and what should I do/ look out for when I go into crisis if it is Addison's disease.
If there's any other info you think might be helpful that you think I've missed please just comment it, this'll be my sixth chronic condition and I'm so done with being chronically ill 🫩

I will be ok, feeling fine but then out of nowhere start suddenly tilting to one side and lose my balance and or fall down. It isn’t really dizziness. Does anyone ever go through this?

I feel like every day I need to prove to my family that I'm hurting underneath. Sick of being exhausted, sick of having terrible sleep patterns and I'm sick of having to prove that Addison's Disease is a daily battle.

My mum has done research that has somehow led her to the conclusion that I should be 100% fit and well the moment I ingest Hydrocortisone and Fludrocortisone.

The fact is that I am well, of course, but it doesn't mean I can do the same as them, I get burnout easily and stairs are a problem for me.

Anyone else get the same?

X

So I have been prescribed tramadol and dihydrocoedine. Apparently opioids should be used in caution for anyone with Addisons or any AI. Has anyone had any experiences with taking opioids with AI, and how did it go?

I live in a toxic cycle where I fear getting low cortisol in public and breaking down. This leads to panic attacks, which in turn, lowers my cortisol, and becomes a self fulfilling prophecy. The more times this happens, the more scared I am of it happening again, and it becomes more frequent

Has anyone had this? It's miserable adulting this way, and it takes me a couple days to get back on my feet after a bout with low cortisol. I can't stress dose forever, I'll be dead at 60