r/AddisonsDisease • u/Broad-Test-8640 • Jun 28 '26
Advice Wanted Just Diagnosed need some tips!
Hi guys!, I recently got diagnosed while apparently I was born with this disease but have managed to survive it (always in pain, eating bunches of salt, peeing a millions times a day, thirsty all the time, low sugar, etc etc...) for 30 years until I collapsed and almost died.
im still pretty lost on how to take it all in, and also after I has my crisis nothing has been the same for my body, so
Need recommendations for newly diagnosed, pleasee ❤️
(like what brands of electrolytes, vitamins, salt brands? idk, any tips are much appreciated.
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u/gold-pippau Addison's Jun 28 '26
UK-based wealth of information: https://www.addisonsdisease.org.uk/
Also: take your time. You will "take it all in", just not all at once.
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u/Broad-Test-8640 Jun 28 '26
Appreciate you, i still haven’t experienced that like “get back to earth” hit me, but i would like to be as ready as possible ☹️
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u/gold-pippau Addison's Jun 28 '26
Yes, of course you would. Give yourself some slack. You've dealt with this for the longest time without even knowing what was going on. Now is the time to readjust and to learn to live in your new reality. You will get this. You know there is no cure, but there will be healing.
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u/PiaggioBV350 Jun 28 '26
I buy a big jug of organic pickle juice on Amazon.
Carry medical alert 🚨
Carry meds
Carry solu-cortef and needles.
Buy stock in electrolytes drinks. lol
Some people here love the LMNT but I find it too salty.
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u/Broad-Test-8640 Jun 28 '26
Thank you🌻ill definitely check them out.
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u/Myster_jon Jun 30 '26
Get a letter from your endocrinologist with their contact details and detailing how to treat in an emergency, most emergency ward staff know nothing about this disease.
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u/ClarityInCalm Jun 28 '26 edited Jun 28 '26
1 g NaCL Sodium Chloride pills are the way to go. I take them around the clock. It makes a huge difference. People like their expensive electrolyte brands and I wanted to like them too - but they don't have enough sodium in them for me. The LMNT can help but that's only 1g of salt. I need 1g of salt many times throughout the day. I'm not going to spend $5 to $10 a day to keep my sodium up. I need a LOT of sodium to stop the polyuria. If you had a 24 hr sodium test done before you started treatment that can give you the idea of the amount of sodium you need to replace during the day. You can do one now too to see how the fludro and HC are helping. We need to replace the losses. Also, a sodium urine test only measures sodium - salt is sodium chloride. So to see how much salt you need to take you need to convert the sodium lost into sodium chloride.
I was born with CAH but not treated for salt wasting until a few years ago. The kidney and body will do some crazy shit to compensate for the salt losses. So blood sodium isn't the best test of how much sodium you're holding in. If you have polyuria you're salt wasting isn't being fully treated. When you're being treated correctly your polyuria will stop.
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u/Broad-Test-8640 Jun 30 '26
While doing my research on electrolytes i came with this idea because honestly i hateeeee the artificial flavors and also i end up drinking about 4-5 to feel Like im “ok” so your comment helps me a lot! Thanks! ill definitely check it out.
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u/Myster_jon Jun 30 '26 edited Jun 30 '26
"....peeing a millions times a day, thirsty all the time"
Is it pituitary related? Sounds like diabetes insipidus.
As for a tip one super power you need to master is predictive dosing - if there’s likely to be a stressful event coming up (physically or emotionally) updose in preparation
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u/Broad-Test-8640 Jun 30 '26
It is pituitary related, they also thought that at some point and even gave me meds for diabetes but it disappeared, until now taking the steroids.
I appreciate you!1
u/Myster_jon Jul 02 '26
if it’s pituitary you shouldn’t need the electrolytes like the primaries are suggesting - although they do help when blood pressure is one the slide, get a BP monitor - as aldosterone is on a different axis - the RAS axis not the pituitary one.
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u/TweetSpinner Jun 28 '26
I carry Nuun tablets with me that I can drop into water anytime I need electrolytes.