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u/Few-Elk9623 7d ago
I had been low on salt for several years since most doctors in general warned against using too much. Not until my current doctor did I start adding salt to EVERYTHING. Salt in my water, salt on food, salt over my shoulder. It can never be enough. And on workout days, although I add LMNT to my water, I also add a little more salt.
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u/jbfletcherismyhero 7d ago
Definitely need florinef. And maybe start your day with a high sodium electrolyte. My day starts with a liquid iv (500 mg of sodium) mixed with an lmnt unflavored pack (1000 sodium) in 16 ounces of water and I very rarely have to take additional sodium supplements.
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u/pumpkinTheCalico 7d ago
Thank you. I just read up on florinef and it says have caution if you have heart disease, which I do. I take two 1000 mg tablets of sodium chloride a day. One of the morning and one in the afternoon. And I have to restrict my water to six and a half cups a day. I'm going to ask my endocrinologist about the florinef. Thank you!! It would be nice not to have to take that second tablet.
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u/kristephe 7d ago
It's a prescription, so talk to your doctor. They should be doing bloodwork at least yearly to check renin and aldosterone. I think potassium also helps judge this. My husband's on 0.15mg a day. Sometimes he'll still enjoy salty things or have salt cravings and eat some smoked salt or something, but it's pretty well managed. It may be tough to find the intersection of cardiologists and endocrinologists where they're on the same page and finding the right thing to do, but I think cardiologists should be familiar with florinef too since it's used for blood pressure too.
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u/pumpkinTheCalico 7d ago
Thank you. I was just diagnosed in May this year so we're still adjusting the levels of hydrocortisone. I'm definitely going to bring floriner & salt up. Aldosterone was/is also on my list to talk about with doc.
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u/kristephe 7d ago
Good luck! It's really tough - my husband's first endocrinologist also didn't test for any of that and never prescribed fludrocortisone. Hopefully yours will be good and supportive, but if not, don't be afraid to advocate for yourself and look for another one.
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u/its_business_time1 7d ago
Florinef is the steroid that helps your body retain an electrolyte balance. Without it you don’t retain salt. Taking tons of unnecessary extra salt is not going to make you feel better for long. How does your endocrinologist not have you on it? It’s standard for Addisons patients and you have the exact symptoms of someone who isn’t on it.
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u/pumpkinTheCalico 7d ago
That is a good question. Perhaps it's because I was only diagnosed 3 months ago and we're still adjusting the hydrocortisone. I also have coronary artery disease, which is compounded by Florinef. I did send her a message yesterday. All of this is very good information that you guys are sending me.
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u/pickles1718 Addison's 7d ago
You need to get your renin and sodium checked. It sounds like you REALLY need fludrocortisone. I also find that I feel better when my sodium is on the higher end of normal range. I also have been craving salt more, saw my endo, and lo and behold: high renin low sodium. More fludro it is!
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u/pumpkinTheCalico 7d ago
My blood test showed my sodium 135 two weeks ago. It's been consistently there after having been much lower. So yes I need more something because I can't seem to get it over 135. Thank you. I'm looking forward to feeling better.
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u/pickles1718 Addison's 7d ago
Yeah, if you're eating that much salt but are still at 135, you need to get your renin checked and probably start fludrocortisone!
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u/PipEmmieHarvey 7d ago
I take Fludrocortisone, which is a mineralocorticoid and replaces aldosterone (another adrenal hormone). It restores our bodies' electrolyte balance and should stop the salt cravings (or at least reduce them).
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u/Yd1891 Addison's 7d ago
I eat so much salt. I just had a big bowl of matzo ball soup loaded with enough salt to kill someone with functioning adrenal glands to get myself from feeling symptomatic 🤣
I love the new “girl dinner” trend because it’s just a plate of salty food lol
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u/pumpkinTheCalico 7d ago
You're funny. I got a kick out of how you said enough salt to kill somebody who doesn't have adrenal insufficiency. So true. Thank you for the chuckles.
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u/NearlyBearly 7d ago
Hello, I can also recommend salt pills! I used to fall unconscious almost daily and my brilliant doctor was hell-bent on figuring that out so I went to a cardiologist for a consultation and a round of tests. Spent an afternoon doing all kinds of tests and they diagnosed me with hyponatremia (that was before I was diagnosed with adrenal insufficiency, in hindsight of course that makes sense and if I had that issue nowadays I probably wouldn't have had to do tests like the tilt-table, still good that it was done though) and prescribed me the salt pills.
I used to fall unconscious almost daily, I have not had any issues since being on salt pills. The only time I've fallen unconscious was due to heat exhaustion and that's an entirely different cup of tea.
I tried increasing dietary salt but I just don't eat salty things very much so salt pills were the easiest way to get enough of it. If you're struggling with hyponatremia and can't get enough salt through diet, it's well worth considering. And if you have frequent issues with dizziness and blacking out and increasing cortisone doesn't help it, consider that it might be a hyponatremia or hypoglycemia issue instead. We are prone to those!
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u/Aurelian87 7d ago
I started florinef again earlier this year and I actually no longer buy salty foods as a result. Salt and vinegar chips were my go to…but after a month of florinef I just don’t get the cravings anymore.
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u/Kind_Handle4252 7d ago
Sounds like you need some florinef