I read your post. My surgery recovery took about 3 months. But the hormone part can take a year, and will require periodic changes for the rest of your life. I also have DI. I hate it!!! At the beginning you have to be very careful about using too much DDAVP. I've seen many doctors since my surgery, and they do not understand the extreme thirst that we go through. They also tend to over medicate us. So make sure that you take periods in between doses to get rid of extra fluids. I found that weighing myself every morning to be very helpful. If you notice a weight gain or loss of more than three pounds then it can indicate whether you dosing is good. More weight=more water retained and vice versa.
Is the doctor who is helping with your hormones a neuro endo?
Re the testosterone, taking it now isn't going to hurt anything. If you start to make your own test. It will show up in the lab work and then you adjust. Some men get a shot, some use a gel etc.
Have you had a growth hormone stim test?
I am happy to try and help!
thank you for your reply. I don't know about any neuro endo in south florida. I will love to find one. Any recommendations? I went to two more doctors (another endo and an urologist) and neither will prescribed the testosterone. I am now experiencing great amount of pain in my back and can hardly walk. I postponed going back to work for another two weeks in hopes to feel better. I am going to take your advice regarding the DDAVP I might be getting too much. I dont think I have had the growth hormone stim test. What is it exactly? a blood test? I am desperate. I really think I need more hormones but can't seem to find a doctor that will. For how long have you had the Diabetes?
Thank you for your help!
I am 4 months Post op ( with post op problems of cortisol levels rising again )
I had most of my pituitary gland removed
I am still not back at work
I also have DI but its pretty well controlled now on 200mcg desmopressin in the morning and 400mcg at night. I tried the nasal sprays but they didnt work for me, so my endo has left me on the tablets which work really well. Its not expected that my DI will resolve and ill be on Desmo for life.
The biggest advice i can give you is, Listen to your body and dont push to get back to work.
many try to go back too soon and struggle. So take the extra time if you can and make sure your ready. Everyone is different. We all take different amounts of time. So just listen to what your body is telling you :)