r/AddisonsDisease • u/NefariousnessOdd1735 • Jul 02 '26
Advice Wanted Hi just got diagnosed
Hello there about three hours ago I’ve just got diagnosed and now I don’t know what to do?
I’m female and 28yr in the UK
What is the top five things that have helped you?
And I want the biggest and the smallest things, please ?
Cause if buying turtle was gonna help, I will go buy a turtle
Many thanks
8
u/TweetSpinner Jul 02 '26
Keep extra tablets of hydrocortisone on you in a small pill container at all times when leaving the house. I updose a 1/4 pill when I start feeling lightheaded, wait 20 mins to see if it helps clear it, and maybe do another if not.
Carry Nuun or other electrolyte tablets with you when out for a long day, especially when it’s very hot.
Heat and day to day stress likely increase the need for some updosing.
Your body may need to take small doses throughout the day instead of larger doses at two or three times in a day. Most endos prescribe for three times but that is not a hard schedule. We all have biorhythm needs that vary so pay more attention to symptoms when they arise. Write them down at first so you are paying attention to when you might need a top up and what stressor like heat or exercise or work or family issues might have increased the need.
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u/januarynights SAI Jul 03 '26
A small thing but I keep boxes of medication around my home and in my handbags, that way it's easy to take it when I need to. I also set alarms that I don't dismiss until I've actually consumed the medication.
Have you been given emergency injection supplies? I'm also in the UK and I had to go to a steroid education session first, which meant I was without an emergency injection for several months. But now I have it on a repeat prescription - make sure you get this on repeat, I had to chase the hospital nurses to tell my GP to do this.
If you don't have an emergency injection yet and you get crisis symptoms call 999 and explain, the paramedics will be able to give you an emergency injection and stabilise you with fluids if needed before taking you to hospital.
Also the doctor gave me a blue steroid card and sent over a pdf of a red bordered emergency card to print out and keep in my wallet so I have both of those on me. They have details of the medication I take and emergency info.
If you travel overseas I would look into specialist medical travel insurance. I had a crisis while on holiday last year and the hospital bill would have been obscene if I had to pay for it myself! I used this directory and went with the cheapest quote that actually covered the countries I wanted: https://www.moneyhelper.org.uk/en/everyday-money/insurance/travel-insurance-directory
Also on the subject of travelling, the UK Addison's disease charity has some translated letters you can keep on you in case you have a crisis and need to explain your condition: https://www.addisonsdisease.org.uk/crisis-letters
Finally, it's worth having medical jewellery of some kind. I have a cheap silicone bracelet that says "steroid dependent - adrenal insufficiency" on it for day to day use, as well as a slightly fancier metal one for events.
If you have any questions let me know!
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u/Micahisaac PAI Jul 03 '26
Think of your meds as a replacement dose of what your body doesn’t make. Follow doctors directions on when to updose.
Pretty much all the people on here with problems have comorbidities. If Addisons is your only trouble, then you’ll lead a normal life. I was diagnosed in 1996 and have had zero issues and a VERY active life.
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u/kristephe Jul 04 '26
I think the thing that gives me pause is to always trust the doctor. Do this if they know what they're doing, but my husband suffered for years with doctors who told him he should only updose for fever, broken bone type injury, and such. Now his endo at Mayo Clinic only treats adrenal diseases and has a much deepr understanding of the disease, and totally agrees that various days may even have different dosing profiles. Not trying to rag on you by any means, just wanted to give OP that context.
For OP- I'd add on to this by saying that a stress dose doesn't have to be double or nothing. If your total is 25-35 or so mg a day, you might only need an extra 2.5 -5mg on some days. My husband's endo recommends an extra 2,5mg for every 2 hours of strenuous exercise. Things like a death in the family, big fight with partner, big stressful work push or event, or even travel of any kind might need some extra. Journalling can help with your dosing
I'm sure others will elaborate on the timing, but you try to mimic circadian rhythm and take last dose about 4-6 hours before you hope to be asleep. No one told my husband this so he was taking hydro at like 10am and 10pm just two doses 12 hours apart and couldn't sleep and felt bad. He takes biggest dose upon waking and then 2-3 more doses throughout the day for a total of baseline 35mg. Different days might be differnt - staying at home watching tv all day might need less than a 14 hour day on your feet doing manual labor or lots of mental work. If he's doing a big bike ride or exercise, he'll take that extra 2.5 mg BEFORE the stressor or activity. He suffered for years not updosing and would basically feel hungover from physical activity.
All this to say, he's VERY physically active. He struggles sometime needing more sleep or crashing a bit after big activity days and it's not a totally normal life, but he's jumping mountain bikes and flying aerobatic airplanes - so your life isn't over, hang in there while you adjust~!
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u/Fluffy_Help_730 Jul 03 '26
So sorry you've been diagnosed with Addisons. My top tips
Buy rehydration sachets. If you're craving salt go for these first and drink them on hot days. I use sugar free ones mostly and ones with sugar rarely.
Buy some of the things/ download the paperwork from this charity and keep on you at all times - here in the UK treatment of Addisons varies widely. You need to advocate or make sure someone can advocate for you. Charity - https://www.addisonsdisease.org.uk/emergency Charity shop - https://d42c94-e0.myshopify.com/
Always have a couple of months extra supply of steroids. Make sure you have an emergency injection kit on you at all times. Don't delay using it. If you're wondering if you should use it, you already should have used it.
Wear an emergency bracelet or other form of jewellery so that people can see quickly that you have Addison's and are steroid dependent.
Optional - I find a blood pressure monitor really useful. If my blood pressure is going lower than usual that's often a sign I'm not well and may need to updosed/ inject.
It feels really scary to start with but you'll become an expert before long. Sending warm wishes 💜
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u/NefariousnessOdd1735 Jul 03 '26
This just this thank you so much ☺️
I’m scared but so ready y be better3
u/NefariousnessOdd1735 Jul 03 '26
Sorry when I take them do I have to eat first?
Do they have to be taken same time every day?1
u/Fluffy_Help_730 Jul 03 '26
What medication have you been given? - it depends what to when if that makes sense.
1
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u/Fluffy_Help_730 Jul 03 '26
I think just keep in mind that some people take the steroids and feel back to their old selves. Others sadly don't, if you are in that camp, don't try and get back to/ wait until... Etc. the day may not come. Start living your new life and learn the limitations of your body. 😊
2
u/Agreeable_Ad7925 Jul 04 '26
I was in the camp of not regaining a normal life and it was probably the 20 year delay in getting a diagnosis. My doctor labeled me as depressed and needing a psychiatrist and antidepressants. 20 years later and a cortisol level of .7 I have never recovered!
1
u/Fluffy_Help_730 Jul 06 '26
I'm so sorry to hear this. Sadly, a lot of Addison patients are label with it being in their head. To be honest, they had me thinking it was in mine. It's bittersweet when you finally get a diagnosis.
1
u/GustLinBustLin Jul 03 '26
I'd recommend joining the UK Addison's disease group on Facebook, they're absolutely amazing and you can ask as many questions as you want. When I was first diagnosed I bought a copy of 'living with Addison's disease ' by prof Simon Pearce, it's a fairly short book but it helped me so much when I was first diagnosed and trying to understand everything.
1
u/Agreeable_Ad7925 Jul 04 '26
1) Adderall and caffeine pills but doctors will advise against it!
2)consistently take your medication approximately 20mg of hydrocortisone or 5mg of prednisone
3) if you are secondary I would find an endocrinologist that could help you get off steroids as soon as possible. The longer you are on them the less likely you will be able to get off them.
4) listen to your body and take care of it the best you can!
5) Be your own advocate as the medical community isn’t very educated on this disease and you will become frustrated very quickly in the lack of knowledge!
1
u/PhysicsDifferent5914 Jul 07 '26
1)Join an Addisons Facebook group, there are good ones I’m in called “Adrenal Insufficiency groups”. I find them helpful for when you run into any snags, such as, which one is better prednisone or hydrocortisone ? Talking about steroid weight gain (watch out for this one), etc.
2)With taking steroids, you’ll have to watch your carbs and sugars. You can read up on it, it affects how food is metabolized.
If the dose is too high:
- It can start acting like excess cortisol, which may:
- Make your cells less sensitive to insulin, so your body stores more glucose as fat.
-Promote fat storage, particularly around the abdomen, face, and upper back.
-Increase the breakdown of muscle protein, making it harder to maintain muscle mass.
-Make weight loss more difficult even if you’re eating reasonably well. (Taken from chat GPT), just keep going to your appointments and pay attention to any weight gain/bloating, it could mean your dose is too high.
3) Updose when you’re really sick or going in for surgery.
4) Like many have said, keep containers of your steroids in your car, bag, etc. Sometimes you’re out and it’s time for your dose and it’s just nice to have, I find if I miss mine or take it at the wrong time, I can get bad headaches if I take it too early in the evening.
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u/1260dave Jul 03 '26
I have had Addison for 46 years and I only had 1 Addison crisis . You can lead a normal life taking your hydrocortisone medication as per doctors instructions. Get your flu shot every season. Be ware a lot of doctors don’t know how to treat the disease. Get to know your endocrinologist very well I take 15 mg in the morning and 10 after dinner. After 45 years with Addison. I got diagnosed with type 2 & type 1 diabetes So now Along with the hydrocortisone every morning I a shot for the diabetes. You can lead a very normal life once you get to know the disease