so sorry for the delayed response. I didn't realize that I didn't have anything set up to email me if someone comments, if that's possible
Husband's potassium and electrolytes always test "normal" even when he feels awful. His current endo doesn't test anything except the basics, which is why we're on a search for a new one. He does like tomato juice (we garden and can it also) but he said it helps him feel better for a while but then he crashes...maybe it messes with his blood sugar, insulin? He does bouillon cubes and I've found that Pedialyte is great. He works outside and Pedialyte has kept him from an ER trip multiple times. He does take Florinef already.
Can anyone tell me exactly what to look for with buying Salt Tablets? I know that sounds stupid but when I mentioned them to my husband he said his original endo recommended them but when he asked at the pharmacy they didn't seem to know anything about it. Can you tell me where you buy them?
I will look into a Neuro-endo. After researching for a while I'm leaning heavily into thinking I may have Secondary Adrenal Insufficiency. I'm thinking maybe Hypopituitary? I'm leaning that way b/c I firmly believe I have "central" hypothyroidism based upon my labs. My Aldosterone, DHEA and iron were all messed up so I'm thinking a pituitary problem may be the source.
My dr failed to order a ACTH lab when I had the Stim test. They only did a cortisol baseline so I'm requesting that labwork done at my appt this Tuesday. I may also request a Insulin Tolerance Test as I've read that that is the "gold standard" test for diagnosing a pituitary problem
I had mentioned in an earlier post that I had started having headaches, especially right behind my eyes and the feeling of "eye strain". That has worsened a lot and I finally figured out the reason for the pain. I realized that my pupils weren't holding onto a contraction. Meaning my eyes were staying dialated all the time. Once I looked in a mirror during one of these headaches I saw that my pupils were constantly pulsing. Trying desperately to stay small b/c of light but unable to hold it for even a few seconds. This caused wicked eye pain/headaches that then caused nausea and vision trouble. I now cannot be out in the sun for more than minutes, even with sunglasses. Even in the house my eyes are struggling.
Has anyone else experienced this?
try halfcup tonic water (with quinine) by Canada dry. Very bitter, but works before bedtime.
I tend to shy away from the Gatorade stuff due to sugar... Also if you spike in potassium they are high and may not be good for you, so you have to know your tests.
Water true can wash away sodium so the pickle juice is a standard for us. I also use tomato juice, v-8, bouillon cubes, and NUUN drinks as they are sort of like Gatorade but not as much sugar but then again, not so salty.
I buy tons of salt tablets. It really helps! Your hubs may need florinef so he holds sodium. I finally found if I took a salt tab at night, I was not throwing up in the morning. Score! I get the one gram size.
Try to find a larger hospital or university and get a Neuro-endo.. One that treats pituitary. They should know more and be able to treat him better.
Thanks for the info! I've been having headaches constantly lately and never really thought about it having to do with the adrenal thing! The headaches seem to sit right behind my eyes...lots of pressure and I've noticed that my vision is a little whacky lately. Kind of feels like eye strain to the extreme. Plus, my husband noticed that my eyes were constantly bloodshot lately. Don't know if any of that is something you've dealt with?
What about neck issues? Feels like my neck muscles are constantly stiff and sore
The nausea is not terrible and is only every so often. I do burp constantly these days which isn't the normal.
Husband hasn't ever thought about the salt tablets. He will just eat salt when necessary. He has to drink Poweraid constantly as water seems to make him extremely hypoglycemic. He cramps a lot at night and ends up eating salt or drinking pickle juice. We've gone thru a ton of endos for him and are still searching. Unfortunately, most don't have much (if any) experience with Addison's. Some will honestly say that and some try to pretend that they do. After all these years we've just had to learn as we go and I research a lot. Drs have been absolutely no help whatsoever! The man cramps constantly and after 15 yrs still hasn't had a doctor be able to give any suggestions as to what to do that would help it.
I'm determined to find us both a good endo. I need one desperately and I feel that he could have a more balanced and enjoyable life if I could get him an experienced doctor, instead of an arrogant one:)
Since you seem to be a fount of knowledge he and I would both appreciate any advice or suggestions you can offer!
The sodium is low end... When you feel nausea, go for salt and salty food.
It will help with the headache. I get a headache (perhaps your husband does?) when low, and symptoms vary... But when I start to burp I know I am starting to get in the danger zone. We vary in some will drop in bp, some spike, some throw up asap, some not...
Salt is your friend... Hope the hubs has salt tablets! I buy them by the 1000's!
I would also get tested for magnesium, vitamin d etc. A lot of us drop vital stuff just being sick.
Hope the endo is good.
Thanks for the suggestions! I do have appts set up with two different endos but the first isn't until end of December and the other in February
most of the labs (with the exception of the cort stim) were done months ago. At that same time I had the following:
Sodium 137 (136-145)
Potassium 4.0 (3.5-5.1)
I would imagine it's all worse now as I'm getting more symptoms or the ones I already had are worse. My husband has Addison's so I'm unfortunately familiar with those symptoms.
I've started having headaches daily with most of the pain behind the eyes, eye strain and soreness, extremely bloodshot. Muscles always feel on the verge of cramping. Always thirsty, dry mouth and more urine output (probably b/c of all the fluids). I've also started having a bit of nausea or disinterest in food
Your stim test is rather borderline but I am a patient, not a doc... You started out low, and while you did double, your levels are still pretty low.
What are your sodium and potassium levels?
If those are low/high or low/low, then the doc should send you on to an endo. You see that one test is really hard to judge, you really need several sets over time to know. I would really push to see an endo.