I had a benign tumor wrapped around left optic nerve discovered when I was 8. I am now 36. After monitoring it for a year, doctors realized it was growing and needed to be removed. Had surgery, ended up having to remove left optic nerve along with tumor. Days after surgery was feeling incredibly thirsty and peeing all the time. Was diagnosed with Central diabetes insipidus. First used Desmopressin nasal spray for a years. Didn't always work consistently. Switched to Desmopressin pill .2 mg twice a day. Worked well for years no issues.
When I was 22 started having a lot of GI issues and acid reflux. All of a sudden medicine wasn't lasting as long. Doctor switched me to Desmopressin .2 mg 3 times per day. That worked well again for years, but still was having a lot of acid reflux issues. Then about 5 years ago when I was 31 Desmopressin started to work on and off inconsistently and seemed to conflict with electrolytes and PPI drugs. Weened myself off PPI and tried to focus on natural treatments, which worked inconsistently. Had one lab from doctor come back with sodium a little low at this time and doctor just said to drink less fluid.
When I was 35 I became pregnant and the whole time during my pregnancy I had a healthy pregnancy. I didn't have too many issues with my fluid levels and was able to balance my electrolytes and stay properly hydrated. Towards the end of my pregnancy I was anemic so I took some iron supplements for it. Had a heathy baby when I turned 36. The whole time during birth they were pumping me full of fluids and my blood pressure would fluctuate from fine to low. When I was in the hospital recovering kept feeling really drowsy and lightheaded. I would tell the nurses and they would check my blood pressure, which I guess was fine and tell me it was pregnancy hormones and my body would take some time to feel normal.
Got checked out of the hospital, while still feeling incredibly drowsy and at home just felt like I wasn't functioning right. A few days after being home I had a fever so I went into urgent care and they out me on antibiotics and ibuprofen. Then a week later I was put on more antibiotics for my skin issues that I had developed at the end of my pregnancy. After the antibiotic rounds I thought for a few days I was finally feeling normal again. However, a few days later I started to feel a tingling prickling sensation in my legs and face, as well as finger tips and toes. I was nauseous and didn't want to eat anything, was having difficulty focusing my eyes and balance issues. I went into Urgent care and they ran labs. I found out my sodium was really low at 117 and I was sent to the emergency room. I was in the ER for 4 days as doctor's tried to figure out why my sodium was low and slowly get it up. One of my tests came back showing my cortisol was low, so they put me on Hydrocortisone 10 mg in AM, 5 mg in PM. They tried to get me on less desmopressin but my body didn't like it, started peeing a lot and drinking a lot of fluid again. So Desmopressin dose remained the same . 2 mg 3 x per day. Sodium had stabilized and labs all looked good.
I was released from the hospital, but I still was feeling drowsy, and lightheaded and having balance issues. Since being out of the hospital, some days I will feel great some days for periods of time and normal and some days I feel awful. Almost every days I have periods of time where I feel like I am really dizzy, am having balance issues pressure around ears, and trouble focusing eyes. I have shortness of breath that comes and goes and a tingly pricky sensation that comes and goes. Maybe related to low blood pressure? I am working with an endocrinologist to figure out what's going on, but so far no luck. Labs have been coming back showing levels normal- sodium in normal ranges. Cortisol was checked again when I hadn't taken my Hydrocortisone dose in the morning and my Cortisol was normal. My ACTH levels have been normal in two tests done, one in the hospital and one after. Doctor is thinking maybe I don't have low cortisol and we are going to try and ween me off of Hydrocortisone and see how I do. I am just not sure what that's going to do to my sodium levels though and how to explain my symptoms. If anyone has an insight that would be much appreciated. I am having trouble functioning normally right now with these symptoms and to be able to take care of my baby.
When I was 22 started having a lot of GI issues and acid reflux. All of a sudden medicine wasn't lasting as long. Doctor switched me to Desmopressin .2 mg 3 times per day. That worked well again for years, but still was having a lot of acid reflux issues. Then about 5 years ago when I was 31 Desmopressin started to work on and off inconsistently and seemed to conflict with electrolytes and PPI drugs. Weened myself off PPI and tried to focus on natural treatments, which worked inconsistently. Had one lab from doctor come back with sodium a little low at this time and doctor just said to drink less fluid.
When I was 35 I became pregnant and the whole time during my pregnancy I had a healthy pregnancy. I didn't have too many issues with my fluid levels and was able to balance my electrolytes and stay properly hydrated. Towards the end of my pregnancy I was anemic so I took some iron supplements for it. Had a heathy baby when I turned 36. The whole time during birth they were pumping me full of fluids and my blood pressure would fluctuate from fine to low. When I was in the hospital recovering kept feeling really drowsy and lightheaded. I would tell the nurses and they would check my blood pressure, which I guess was fine and tell me it was pregnancy hormones and my body would take some time to feel normal.
Got checked out of the hospital, while still feeling incredibly drowsy and at home just felt like I wasn't functioning right. A few days after being home I had a fever so I went into urgent care and they out me on antibiotics and ibuprofen. Then a week later I was put on more antibiotics for my skin issues that I had developed at the end of my pregnancy. After the antibiotic rounds I thought for a few days I was finally feeling normal again. However, a few days later I started to feel a tingling prickling sensation in my legs and face, as well as finger tips and toes. I was nauseous and didn't want to eat anything, was having difficulty focusing my eyes and balance issues. I went into Urgent care and they ran labs. I found out my sodium was really low at 117 and I was sent to the emergency room. I was in the ER for 4 days as doctor's tried to figure out why my sodium was low and slowly get it up. One of my tests came back showing my cortisol was low, so they put me on Hydrocortisone 10 mg in AM, 5 mg in PM. They tried to get me on less desmopressin but my body didn't like it, started peeing a lot and drinking a lot of fluid again. So Desmopressin dose remained the same . 2 mg 3 x per day. Sodium had stabilized and labs all looked good.
I was released from the hospital, but I still was feeling drowsy, and lightheaded and having balance issues. Since being out of the hospital, some days I will feel great some days for periods of time and normal and some days I feel awful. Almost every days I have periods of time where I feel like I am really dizzy, am having balance issues pressure around ears, and trouble focusing eyes. I have shortness of breath that comes and goes and a tingly pricky sensation that comes and goes. Maybe related to low blood pressure? I am working with an endocrinologist to figure out what's going on, but so far no luck. Labs have been coming back showing levels normal- sodium in normal ranges. Cortisol was checked again when I hadn't taken my Hydrocortisone dose in the morning and my Cortisol was normal. My ACTH levels have been normal in two tests done, one in the hospital and one after. Doctor is thinking maybe I don't have low cortisol and we are going to try and ween me off of Hydrocortisone and see how I do. I am just not sure what that's going to do to my sodium levels though and how to explain my symptoms. If anyone has an insight that would be much appreciated. I am having trouble functioning normally right now with these symptoms and to be able to take care of my baby.
