I am hoping to God someone can help reassure me I am not alone and that there are other causes for this besides diabetes, because all other tests indicate no.
I have dysautonomia (features of hypovolemic, neuropathic, AND hyperadrenergic pots- lucky me. I have had poor circulation LONG before any other health issues). I have a history of an eating disorder and weight cycling, so I have been CONVINCED my symptoms of more urine than usual for me (not technically polyuria, but a noticeable increase in my normal) are from diabetes. I have had some slightly iffy fasting and post prandial values when I tested myself on a home meter so was convinced this was the issue.
However, every single test has come back normal when performed properly in the lab. Fasting sugars? Normal. A1c? Normal. I have had more urinalysis than I can even begin to count at this point and never once positive for glucose. I have zero family history of the disorder as well, and am only 29.
I swear, it is always worse the morning after a large meal or even a few hours after a meal during the day. It's also sometimes bad with normal meals too, but ALWAYS bad with large meals. This was why I was certain it was diabetes, but this past week alone I have dropped everything and rushed in to get my urine tested FOUR TIMES in the middle of these peeing episodes, and despite me being convinced my urine smelled sweet as well, there is NEVER sugar. I've gone to my PCP, urgent care, and the ER so it's at different locations and not the same machine over and over. The tests have been performed both with dipsticks and state of the art lab technology, and the results are consistent- never any sugar. Not even trace. The Glucose tolerance test was suggested as confirmation, however as a person with an eating disorder who doesn't always eat regularly or enough carbs or too much, etc, I was informed by endocrinologists that the results won't accurately reflect anything until my eating is normalized, and also the fact the urine has no sugar rules out that the excess urination is due to the diabetic disease process of excreting excess sugar.
The urine varies in color. Sometimes lighter, sometimes darker, sometimes sweet, sometimes salty, sometimes bitter. It's like it changes so rapidly hour to hour in composition. It's almost like my body freaks out when food goes in, especially carbs, and the fluid shifting process goes wonky. This happens regardless of how much water I drink, a lot or a little. Some days I'm quite thirsty but I wouldn't call it polydipsia, and other days I'm barely thirsty at all- fairly typical for me. I do not have any other issues with excessive hunger after eating, frequent infections, or other signs of diabetes. Salt doesn't seem to immediately abort these attacks, and all my other labs were all normal when checked in February except borderline elevated LDL (genetic unfortunately) and low Vitamin D for which I now take a supplement, but it's made no difference.
I also have OCD and my whole entire life has been taken over by this obsession with having diabetes, even though I am now basically notorious at doctor's office and the hospital around here for being the crazy person who keeps coming in searching for sugar in her pee. On top of the extra urine I already have interstitial cystitis so I pee freequently in general, but this has become unbearable.
I am desperate to hear I'm not alone with this experience, that anyone else with dysautonomia can relate and that I can put the diabetes fear to bed. SO many professionals, endocrinologists and their NP's, registered dietician, ER doctors, etc are adamant it's not diabetes and when I mentioned my POTS they all said they don't know a lot about it, but that autonomic dysfunction can do funny things. Even if nobody has answers, to hear I'm not alone and any reassurance this is related to dysautonomia and I can put the diabetes fear to rest would be SO appreciated.
Thanks in advance!
