I'm going to add a really long email here from an e-pal of mine in the States. She has APS and Sjogrens. Can anyone shed any light on what is going on with her?
"The problems with hydration came back at the end of last week. I once again had the sudden wave of frequent urination (literally dumping huge amounts of urine every 15-20 minutes). I drink and drink (water) but it doesn't seem to be absorbed or used properly as I get very dehydrated. I also have other strange symptoms that occur, like double vision, sudden extreme dry mouth, feeling faint, drops in BP when standing, nausea, etc...and they happen all at the same time (from the start), not after I become dehydrated (like you would think dry mouth and drops in BP would normally present after-the-fact).
I have struggled with this mess for many months and after a couple ER trips last month, they gave me an injection of hydrocortisone, which seemed to stop the urination problems in its track. Unfortunately, after about 30 days, things started back up last Thursday night (after what was a great day physically) when I went to bed. Problems with breathing, urinating over & over, chest pain, feeling like I will pass out, double vision, etc. Profound event and I should have gone to the ER right then, but I was probably beyond capable of making appropriate decisions. It finally resolved after a couple hours but I still had significant dehydration problems the following day. Since then I have the same problems every couple days. I could tell I was getting worse each day but kept thinking I would bounce back.
I got so bad that I had to contact Dr B and he ordered a couple labs over the weekend thinking my electrolytes might be off. Well, not only off, but my potassium was dangerously low at 2.8. The doctor at the urgent care clinic wrote a prescription for oral potassium but between my gastroparesis and bacterial overgrowth I couldn't tolerate it. I focused on eating everything with high potassium (bananas, Ensure, tomato juice, beans, etc). Dr. B thought the lab was an error it was so low and had me recheck it Tuesday morning on an emergency request with stat results. Well, even with eating items with lots of potassium my level fell to 2.6. Dr. B called and said this is critical and life threatening. Told me to call an ambulance right then and get to the ER immediately. I tried to gather up my things to have my husband drive me (not wanting the ordeal of the ambulance), but the chest pain became unbearable and I had to call anyway. Of course they admitted me and here I sit. I do feel loads better now that I have had 5 liter bags of IV fluid and 6 bags of IV potassium. However, once i go home, this will all happen again as soon as I have the next wave of urinating every 15 minutes. So I'm a bit concerned about going anywhere until they determine the cause of this. They are doing another endocrinology consult, which should have been here today but the doctor stood me up and didn't show. So basically I sat in this hospital bed all day getting IV fluids but getting no answers. I'm a bit peeved as you can imagine.
Well, that's the just of the current situation. I still think there could be some adrenal issues. If not, then it must either be kidney or extreme autonomic dysfunction."