Diabetes insipidus is a rare hormonal condition that causes one to pee a lot and feel thirst to the point of hydration. Diabetes insipidus is not related to diabetes, but one of the symptoms of diabetes is excessive thirst and urination.
When I was sick prior to my AML diagnosis I suffered from extreme thirst. I was drinking constantly and peeing all the time. It was like I couldn’t get enough.
In the ER they were blown away by how much water I was consuming.
After arriving at the James, they did an MRI and found a cyst in my brain which they thought could be causing me to drink so much.
The doctor said sometimes AML can be the cause but it’s rare. He actually wasn’t sure if it was the AML or the cyst.
When they tested my urine they said it wasn’t urine it was water. I was drinking so much it was going right through and not flushing toxins out of my body. He explained, that my brain wasn’t producing the hormone to tell my kidneys to only release some of the fluids for the rest of the body. Instead, it was dumping everything. They worried my salt level would go up which could cause my brain to swell. They started me on Desmopressin right a way to stop the thirst and the peeing. It worked!
The last time they did an MRI the cyst was gone. He wants to wean me off the medicine but I’ve had so many issues with GVHD of the gut he decided to give the doctors time to get that under control before adding any issues.
I see the doctor in a few weeks and at that time I feel he will start that process now that the other issues are in check. Hopefully, we can start removing medications so my body can heal.
Thank you for following along with my journey.