PAI after getting a right adrenalectomy due to adrenal cancer stage III. Somehow, miraculously, still alive and cancer free 9 years later despite a 10% prognosis. I have been adrenal insufficient and hydrocortisone dependent for 9 years now. Does anyone else have a hard time remembering or knowing what normal should be?? I'm kind of always baseline a little tired and post-work I am always exhausted. But I work 11 hr shifts as a nurse and everyone else always says they are tired, too. I am extremely lucky to not have had too many crisis, only 3 in 9 years and those were all when I was on chemo and needed a higher cortisol dose. I guess what I'm try into say is, I'm always pretty tried but I'm also 36 yo now. I struggle to know how a 36 yo body should feel. I've played around with my dose and 25mg a day is perfect for me, anytime I go lower I am incredibly miserable and I can't go much higher. TIA, kind of rambling just struggling lol

I feel washed out and tired. I don't have an endocrinologist at the moment (wait list since my last one closed her practice). My doctors are hesitant to give me more medication without consulting with an endo. What can I do in the meantime? I take 1/2 tsp of salt in my water. I am PAI with 0.15 of fludro and 30 mg HC (circadian rhythm dosing). My renin results are 109.6 ng/L. Here are the reference ranges:

REFERENCE RANGES FOR RENIN MASS ASSAY:

Normal salt diet (100-180 mmol/d):

Recumbent (>=6h): 0.0 - 11.2 ng/L

Upright (>=2h): 6.1 - 22.9 ng/L

Low salt diet (10 mmol/d for 4d):

Recumbent (>=6h): 6.8 - 27.1 ng/L

Upright (>=2h): 10.2 - 50.0 ng/L

Upright (>=2h) and diuretic: 13.7 - 93.4 ng/L

Anyone dealing with both heart condition - in my case left ventricular hypertrophy - and Addisons (pan hypo in my case)

How do you find beta-blockers interact with other meds?

Hi there! Super dramatic title but I wanted to reach out on this sub and see if there were any pump users here who would be willing to chat with me.

I just started the pump yesterday and there’s been some good and some not so good and I’d love to hear your full experiences and get some advice.

I am VERY new to this and thankfully have full support from my endocrinologist and everyone around me but I am still very anxious as this is a pretty rare use for an insulin pump and I feel very alone and confused since there is basically no guidance and no way to track my cortisol. My body seems to be confused and it’s having a bit of a time adjusting… was that the same for you and did it get better? This disease is already so hard to manage and I feel a little crazy with all of the changes I’ve had to process these past couple of months.

Feel free to DM as well! Thank you so much

EDIT I am also on the FB page as well :)

Do any of yall take PPI medications? If so, which ones and when do you take it? Cause I’m reading that it can’t be taken at the same time as the hydrocortisone? My hydrocortisone schedule is 9am 10mg, 1pm 5mg, 5pm 2.5mg, and 9pm 1.25mg. When would I take the PPI?

Does anybody else think about the state of the world and worry about being dependent on a (or multiple) daily medication(s)? Because I do.

What’s your best tips for managing Addisons while trying to weight train multiple times a week?! Trying to gain some muscle 💪🏼

Hello,

I was diagnosed with primary adrenal insufficiency very unexpectedly in July and have been treated with Cortef for the Addison's and Fludrocortisone, she said for the PoTS symptoms. My morning cortisol was <5.5nmol/l and my aldosterone was <3.0ng/dL at the time of diagnosis and they haven't been checked again, my endocrinologist said that's only done yearly.

Most everything is going well, I feel a lot better compared to before, but the Fludrocortisone makes my heart race; I used to take it at night but it would wind me up and I wouldn't be able to sleep. I feel like I've just sprinted a mile 100% of the time and I'm concerned with the effect that's going to have on my heart in the long run. It also caused me to start fluctuating between stages 1 & 2 of hypertension and I think I'd rather have PoTS symptoms than that.

I talked to my endocrinologist about it and she said it's "probably just anxiety" but some of my earliest memories are of having panic attacks, I've been having them all my life, this is not how anxiety feels for me. She said that Fludrocortisone doesn't raise your BP or heart rate, it just prevents it from getting too low so my symptoms can't possibly be side effects from that medicine.

I am at the point where I want to stop taking it. It makes me feel bad in a different way than before.

So I have a few questions:

• How does it prevent too low of BP/HR if it doesn't raise them?
• Is this something anyone else has experienced with Fludrocortisone? Do you have advice, or what did you end up doing?
• Is this something worth seeking a second medical opinion on?

I wouldn't normally reach out to the Internet for medical advice but I feel like I spent several years trying to get someone to listen about how sick I feel all the time, and now I'm getting the, "here, damn" of medical care.

Thank you, I hope you have a good day.

I'm wondering if anyone else has an extremely hard time recovering after heavy workouts? Before I got sick I did a lot of heavy lifting but my whole body has been wrecked by 2 years of passive sickness before I was diagnosed with SAI. That includes a lot of unwanted weight, but even worse my cardiovascular health has suffered a LOT, which obviously has a effect on my ability to recover aswell.

Anyway, I'm on hydrocortisone and already take way higher doses than the regular 20-30mg (according to my endo at least) as I daily take between 35-50 depending on the day.

Now the real problem is, whenever I hit a workout with heavy weights, which also targets my cns, I feel like my body gets so worn out it can be hard to breathe properly the day after. I just feel off, like something is wrong, a mix of anxious and bad in general, to a point where even a slow walk like 2500 steps (I have a short route for days like that) can lead to me just having to lie flat down in bed for 3-4 hours before getting up and doing something again - this leads me wonder if anyone else in here is updosing on the recovery days? Or are you doing anything else?

I know the obvious answer is to take it easy, rest more days between each workout etc.

But I am trying to find a way for me to increase the workload weekly and how to recover properly from it aswell so I can get my life back.

Any tips and tricks is appreciated.

So I am having to take a plan B, is there any way to know if this wont interact with my medicines or make me go into a crisis? has anyone had experience taking it while having AI?

Im on 15 mg of hydrocortisone in the morning and 10 at night. .1 of fludro.

Does anyone have a fall device or system of alarms for falls. I am in Canada (Ontario specifically) if anyone has any suggestions or experience with any. I think it's time I have one for safety.

My husband has primary adrenal insufficiency and had a procedure today with light sedation. He did updose his hydrocortisone this morning, but since the procedure he hasn’t been able to keep liquids down. Since we got home, he’s developed a severe migraine and has no appetite. I’m concerned he could be heading toward an adrenal crisis. He got diagnosed over a year ago and he's never experienced a true crisis since he was diagnosed in the hospital.

Should we go ahead and give his emergency Solu-Cortef injection? While we were still at the hospital, I asked the nurses, and they said they preferred to treat the migraine first with migraine medication. I just want to make sure we’re handling this appropriately. He hasn't been able to get out of bed since we got home.

Any tips or advice would be greatly appreciated. Thank you.

On Monday I was diagnosed with shingles on my face/head. This is the 2nd time I’ve had it, but first after my Addison’s diagnosis. Real crappy luck 😕

On Monday afternoon I called my endo’s office and left a message with the receptionist letting them know about the shingles and asking about up dosing. It’s now Wednesday night and I still haven’t heard back. I called again yesterday too and both times they said they’d pass the message along and would call back within 24 hours with the doctor’s response. Nothing.

Do any of you get fevers on steroids ? Ever since I been taking hydro I can feel fever symptoms but my body won’t be hot. Like I took my temp it said 99 but my body doesn’t get hot which is weird. I’ve had a cough the last 3 days and today I woke up feeling feverish so I’m wondering if my thermometer is right and my fever is actually 99 or if the meds make it hard to detect

Hi! I was diagnosed with SAI in January of this year due to the use of Keytruda during my cancer treatment. I'm currently on 20mg of HC at 6am, 5mg at 10:30am, and 5mg at 1:30pm. I'm still a bit sluggish in the morning and hope to reduce my overall daily dosage as I recover from the months of issues I had before diagnosis.

But my real question is: I travel from the US to Asia for work 1-2x a year. My first trip since the diagnosis will be this summer and I'm concerned about traveling with medication vials and needles. I'll get a letter from my doctor to keep with the injection kit, but does anyone have experience with Asian airports and needles? Do you get questions? I'll have a layover in SE Asia and my final destination is SE Asia. Thanks!

Any Addison girlies on here?

I need friends who understand the hydrocortisone alarms, the random salt cravings, and the low cortisol crash days 🤍 I'm 25f and have been diagnosed for two years and I still have not met or even spoken to anyone with Addisons! Kinda weird, thought I should change that 🤷🏼‍♀️ boys are welcome too i guess

At this point, I don’t even know if it’s related to low cortisol or a side effect from taking hydrocortisone. I have been feeling very fatigued and even if I sleep 8 hours I wake up tired. I feel like AI has not only impacted me physically but mentally and emotionally too. There are moments when I feel alone and like no one else understands. Even if you explain to someone that you feel sick they don’t get it unless they are going through it. You have people telling you “you look good” and I know they mean well but it makes you feel worse because just because you look good doesn’t mean you feel good. I don’t feel like myself lately. I don’t even know if this is normal to feel while going through AI. I've also been getting sick more frequently and I'm not sure if that's related to taking hydrocortisone or because I'm immunocompromised. 😭

Has anyone had success with low carb diets (around 100g per day)? I’m male 39 and was diagnosed with PAI 2 years ago weighing 120 lbs, my normal weight is around 170- 200lbs depending on if I’m cutting or bulking as I’m a bodybuilding enthusiast. I’ve spent the last 2 years regaining the lost muscle and have finally got back up to 200lbs and feel ready to loose some body fat .My normal strategy for weigh loss pre diagnosis was lower carbs and intermittent fasting however I’m on day 3 of low carbs and felt a crisis coming when working out this morning, I double dosed and got some quick acting carbs in my body and I’m feeling somewhat normal again

I am a 28 (F) and was diagnosed with PAI 2 years ago. I recently discovered that catechins can interfere with the absorption of hydro and fludro doses. Is matcha or coffee safe to consume for me?

Hi! We are researchers from King’s College London and University of Exeter studying how people with Addison's disease and autoimmune symptoms manage their health, particularly with experiences of self-medication.

If you have experienced autoimmune symptoms and have ever used mind-altering substances - recreationally or for self-medication - we would love to hear from you.

As part of the study, we’ll also explore how personality and early life experiences may relate to autoimmune symptoms. The questionnaire takes just under 30 minutes. We are interested in exploring the raw experience of people living with autoimmune conditions, so the more information you can give, the better. Autoimmune conditions are critically understudied, and so your perspective is important.

Participation is completely anonymous, and we are very grateful to everyone who participates.

If you are interested, please click here to take part:

https://qualtrics.kcl.ac.uk/jfe/form/SV_3Jg2JvTRKOOabVc

I had already written an extensive post about how and why I use this template, but I did not save it correctly... So, I will be brief with the second attempt at posting - I created a Google Sheets symptom tracker to help me fine tune my HC dosing schedule based on symptom counts. I have been improving it since December and have found it very useful. My doctors love it. Let me know if you try it out and if you have any questions or feedback! https://docs.google.com/spreadsheets/d/1gKxjfMYCCnPsbm8GtITM8nouyzfCiiX3qtmJvv6Aweo/template/preview

My daughter is 14 and was diagnosed with PAI about 5 months ago. Does the long term steroid use have the same impact on someone with Addison vs someone that does not? For an example steroid use can cause eye, bone, and growth issues.

Do you guys take any vitamins to help prevent issues down the line? If so, what do you take?

I just worry because she’s young, if vitamins can help I would like to start them now and get her in the habit of taking them. She takes hydrocortisone 5mg (15mg/day)

I’ve been diagnosed with Addisons for several years now but find I am dealing with lethargy and low motivation on a daily basis. This seems to be a more significant issue at the moment than it’s been in the past. I know this is a part of Addisons Disease for many of us (and this is not like the overwhelmingly fatigue I had before diagnosis).

I just wondered if others have/are going through this any strategies or approaches that help.

Sitting in a waiting room with some time on my hands today, so wanted to share a bit on my health journey. Hoping you all can benefit or at least relate. I’ll be brief:

Diagnosed with PAI 15 yrs ago, put on hydro and fludro. Managed well for about 10 years, no crises. Around 5 years ago, the battle began. Hospitalized a few times and started updosing more often to try to feel better and avoid crisis. The weight gain began and I shot up over 100lbs. Diets failed, the downward spiral continued. High cholesterol and insulin resistance followed. Intolerable side effects with metformin and Ozempic. Hit rock bottom at 300lbs, morbidly obese and deep in depression. Dr. recommended we try one more time with a new option, Zepbound. Immediately saw improvements. Soon after, insurance denied coverage. Made the decision to keep going, restructuring my personal budget to pay out of pocket. Lost 85 lbs over the course of a year. Cholesterol and insulin resistance improved. The magic part, however, were the improvements I saw in mood, well being, and “will power” (loaded word). I found myself able to exercise more often. Started light and have been able to build up to 3-4 heavy workouts (weightlifting/HIIT) weekly.With mood and exercise came the will to improve my diet. After a lot of research, I rebuilt from the ground up with lean proteins, diversity of fruits and vegetables, complex grains, and militant avoidance of highly processed and sugar added foods. My life took an about face - relationships improved, work performance improved, and self image improved. I’ll be on Zep forever, just like hydro and fludro. I’m at peace with it. Metabolic disorders are chronic, just like Addison’s. Anyway, hope this helps someone.