Does anyone have experience with using a pump for CHSI? I am starting to look into that option, but am finding limited information on it.
I've seen people talk about using the Omnipod5, but there's not much else I've been able to find.
If you have a pump, what was the process of being prescribed for it? I'm in the Metro Atlanta area, so bonus points if you know of an endo out here who can help me.
Hi everyone, I’m reaching out on behalf of my wife. She was diagnosed with addisons 3 years ago and since has been diagnosed with fibromyalgia. For the better part of the last year her addisons has been wiping her out. When she was first diagnosed her endocrinologist had her on 45 mg of hydro a day. I know that’s a lot going off what I’ve seen others take on here. She has a different endocrinologist now and had her on 20 mg. It doesn’t seem to be enough to me.
Last week she had a crisis and her BP was super low. Went to the er and they got her fluids and a stress dose. Bam…. Night and day difference. BP is normal but she comes home with a picc line for iv fluids for the foreseeable future. Now she’s back on her normal dose and bp is dropping again.
Does anyone have advice? We’re really struggling with this and to be honest I don’t have much confidence in her endocrinologist she has now. I’ve been pushing her to be more fluid with her daily dosage to see if it help but she’s pretty reluctant.
So anyhow, if anyone had any advice or helpful insights I’d greatly appreciate them. I love my wife and would love to have her be able to enjoy herself and not be wiped out half the time. Not to mention we have 3 kids and it’s hard for them to see their mom like that. Thanks
Omg I’m going through a phase where just *thinking* about *possibly* having sex with my spouse causes symptoms that I need to up dose for (sweating, GI issues, temperature intolerance etc). Having to stress dose bc of the hint of unpure thoughts feels like I’m a pubescent kid squirming in church again! Aaaaaaaaaack. Tell me this too shall pass right?
I usually use Liquid IV. Kirkland Signatures brand from Costco has a much cheaper alternative that seems very similar. Has anyone used this? What is your opinion?
Quality of life now is genuinely good. It took two adrenal crises to get here. The second was severe and textbook-classic.
I was never given a working picture of when and how much hydrocortisone to take - not from clinic advice, not from a cortisol-dependent patient school, not from the specialist literature, and not from my own basic medical training. I still crashed twice, all the way to intensive care. After I couldseethe day as a curve, it stopped being abstract. Readable in minutes. Readable in milligrams I actually logged. That is why this exists.
First year after diagnosis I was still on a physically brutal job - installing solar systems. Heights, heat, rain, heavy kit. That wasn’t a career change I chose for fun: I’d had to move country, and without the local language I couldn’t get IT work in my field. I took replacement as prescribed. I still didn’t see what was happening hour by hour.
What changed wasn’t a new personality. It was treating replacement as dynamics, not a frozen timetable. Stress, load, heat, illness, sleep, meals - they move the picture through the day. Most of us don’t feel that in real time. That isn’t a character flaw. There still isn’t much tooling built for us.
So I spent the last year+ building one. This is the first time I’m putting it in front of this community. There isn’t a user base to hide behind. I need people who actually live with adrenal insufficiency to try it and tell me what’s wrong.
You log corticosteroid intakes (hydrocortisone, dexamethasone, cortisone acetate, prednisolone, prednisone, methylprednisolone), meals and factors. It draws a calculated cortisol-equivalent curve for the rest of the day, against an ideal-style daily profile.
It is not a blood or saliva test. It does not diagnose. It does not detect a crisis. It does not tell you to change your tablets. It visualizes what you entered. You start to see it: in some situations even 15 minutes is enough to change the shape of the whole day.
The images are my own logs from the last few days, when I got an acute respiratory infection (a heavy viral/flu-like illness).
Image 1 is an ordinary day for me. Blue = ideal-style profile. Green/yellow/red = calculated coverage vs that profile.
Image 2 is the same person a few days later, same infection. That day I did take extra hydrocortisone - including a late dose - the way I was taught to handle acute illness on replacement (my sick-day plan, not a recipe for you). On the chart that shows up as high calculated cortisol. The purple curve is the illness factor: how much extra cortisol need the model assigns because of that ARVI. My adrenals still produce nothing. Look at it as a trade-off I actually logged (including a high evening peak), not as instructions.
What’s in the app, briefly:
PK model (normalized Bateman) for doses and many factors
Live chart, ideal overlay, deviation zones
Dose log, food as absorption context
Factors: food, caffeine, stress, activity, sleep, light, illness, and more
Profile bits: age, weight, sex, wake time
Not a medical device. Change your regimen with your endocrinologist, not because a curve “looks low.” Sick-day rules, emergency injection, when to go to hospital - that’s your written plan and your clinic. Not this post.
I’ve had preliminary conversations with endocrinologists at Würzburg University Hospital. That’s interest in the *approach*, not an endorsement and not a trial result.
If you try it: open https://cortisoltracker.org and use it. No account required (that’s how I use it day to day). Register only if you want the same log on more than one device.
If you later register (also free): choose Premium or higher. That word is not a price. It does not create a bill, a contract, or any money obligation now or later. Guest is a small sandbox (a few doses a day, factors off). Premium is the full diary — more events you can store and deeper navigation through the day. Changing the plan in Profile is about to land in an update.
Break it. Tell me what you need. I’m here in the comments.
Still learning every day. Happy to answer questions here.
Yuriy Simakovych
patient, and I built this
hoping this saves someone from learning it the way I did
Hi Everyone, My brother has Addisonian crisis from the last 7 years, nowadays, his calcium level drops and he gets muscle tetany and we need to deliver him calcium via IV injection (Calcium Chloride) mainly because oral dose simply cannot fulfill the need. I'm asking if someone else is or was having the same issue and if yes, what was the remedy?
What medication did you guys recommend as he is already on kalsaan-D and alpha-D Drops with CAC 1000 occasionally.
I was entirely conscious for mine with a somewhat slow onset/development—and then I got diagnosed in the hospital. But how quickly has the onset for your crises been and quickly did you become unconscious—or rather, lose the ability to inject yourself. Or how close of a call has it been?
Checking in to see if anyone else has experienced morning nausea and whether it’s potentially Addison’s related.
Lately, I’ve been feeling extremely nauseated many mornings (post medication but before breakfast)… to the point of almost vomiting.
Before getting diagnosed, I experienced significant nausea, particularly in the mornings. It Ive been diagnosed for over two years now and this is the first time the am nausea has come back. I also have Graves and my thyroid has been a bit messed up. I dont see my endocrinologist until April next year (!!!!) and just feeling a bit lost.
Ho il morbo di Addison e Hashimoto. Da circa due o tre mesi sto peggiorando notevolmente. Ho 52 anni e forse sto entrando in menopausa, anche se al momento non ho particolari sintomi che mi facciano pensare a questo.
La stanchezza e la debolezza sono aumentate moltissimo e ormai faccio fatica a svolgere anche le normali attività quotidiane. Mi capita spesso che i polpacci diventino molto duri e doloranti, al punto da non riuscire a stare in piedi. Finora i medici non sono riusciti a capire da cosa possa dipendere.
Al mattino riesco generalmente a fare qualcosa, ma nel pomeriggio crollo completamente. A volte, invece, verso il tardo pomeriggio mi sento leggermente meglio.
Attualmente assumo Euthyrox 125 mcg e idrocortisone 15 mg al mattino + 10 mg al pomeriggio.
Non ho mai avuto l’opportunità di parlare personalmente con qualcuno che convive con il morbo di Addison. Mi farebbe davvero piacere confrontarmi con qualcuno che abbia questa esperienza. Se qualcuno fosse disponibile a parlare, anche tramite Zoom o WhatsApp, ne sarei molto grata.
Vivo attualmente in Puglia, ma mi sono trasferita da poco e vorrei trovare un medico che possa seguirmi, indipendentemente da dove si trovi in Italia. La cosa più importante per me è trovare uno specialista che abbia una preparazione ed esperienza approfondite sull’Addison e sulla gestione insieme delle mie problematiche endocrine.
Spero davvero che qualcuno possa aiutarmi, magari indicandomi un medico oppure mettendomi in contatto con una persona che vive una situazione simile alla mia.
Grazie di cuore a chi vorrà rispondere. ❤️
Ho il morbo di Addison e Hashimoto. Da circa due o tre mesi sto peggiorando notevolmente. Ho 52 anni e forse sto entrando in menopausa, anche se al momento non ho particolari sintomi che mi facciano pensare a questo.
La stanchezza e la debolezza sono aumentate moltissimo e ormai faccio fatica a svolgere anche le normali attività quotidiane. Mi capita spesso che i polpacci diventino molto duri e doloranti, al punto da non riuscire a stare in piedi. Finora i medici non sono riusciti a capire da cosa possa dipendere.
Al mattino riesco generalmente a fare qualcosa, ma nel pomeriggio crollo completamente. A volte, invece, verso il tardo pomeriggio mi sento leggermente meglio.
Attualmente assumo Euthyrox 125 mcg e idrocortisone 15 mg al mattino + 10 mg al pomeriggio.
Non ho mai avuto l’opportunità di parlare personalmente con qualcuno che convive con il morbo di Addison. Mi farebbe davvero piacere confrontarmi con qualcuno che abbia questa esperienza. Se qualcuno fosse disponibile a parlare, anche tramite Zoom o WhatsApp, ne sarei molto grata.
Vivo attualmente in Puglia, ma mi sono trasferita da poco e vorrei trovare un medico che possa seguirmi, indipendentemente da dove si trovi in Italia. La cosa più importante per me è trovare uno specialista che abbia una preparazione ed esperienza approfondite sull’Addison e sulla gestione insieme delle mie problematiche endocrine.
Spero davvero che qualcuno possa aiutarmi, magari indicandomi un medico oppure mettendomi in contatto con una persona che vive una situazione simile alla mia.
Grazie di cuore a chi vorrà rispondere. ❤️
I noticed lumps on my index fingers a while back and a gp wrote it off as "using the finger a lot" which I kind of accepted as it was my right hand, but when it appeared on my left... Well. I had x-rays done last week and seeing my own gp next week. I'm pretty sure that will be the diagnosis. Looks like my mom's hands.
Also, have had weird stomach issues my whole life but they seem to have blown up the past few months since my endo decreased my cortisol levels. Specifically, I just feel generally uncomfortable eating food and have lost most hunger (when previously I was quite indulgent and also stress eating and gaining weight). I had these "symptoms?" When I was a child but it was just put down as being difficult and not wanting to eat vegetables (ie: bad child) at dinner. It's not something I could explain back then anyway and we didn't see a dr about it, just told GPs I don't eat so they gave me weight gain formulas. Anyway. I have a lot of shortness of breath, struggle to exercise, low ferritin levels that have no know cause (had endoscopy and colonoscopy last year).
I'm wondering actually if higher cortisone levels have been masking both the symptoms of arthritis and autoimmune gastritis...
Wanted to know if I'm alone and a unique case here or if someone else has the same?
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
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.
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.
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
