I have been told that I have a rare form of Gitelman’s. Where mine differs from most, the only vitamin my kidneys flush is magnesium. Oral magnesium does nothing to raise the magnesium in my blood and instead just upsets my unitary tract. Therefore I have to go to the hospital every Monday, Wednesday and Friday of every week for a 6 hour magnesium infusion. My body looses most of my magnesium very quickly. This keeps my body in a constant state of agony. My question is...does anyone else have this same issue and know of any better way to control the magnesium level? One doctor said it would me best for me to be able to get it done for two hours every night. However they won’t allow me to do this by myself at home due to needing a sterile area to access my port. I have asked if there was something like an insulin pump that could administer magnesium but no one has ever heard of it. I’m desperate for something to take my life back. I’ve been doing this for almost 7 years. It has dropped as low as 0.5 where I had to be hospitalized for weeks at a time.
I'm so sorry to hear about this, it sounds incredibly rough. Where are you located? I am in the States and one of my friend's cousins has a port (they have hemophilia) and they have a setup/permission to sterilize/access their port at home. If you are in the UK maybe the rules are different there? But I'm wondering if you could get a second opinion on that aspect. I know it is hard to advocate for yourself when you are dealing with so much physically though. If I come across any info that seems like it might be useful I will be sure to pass it along.
Hi 👋 I have a port which can deal with magnesium loss and thus have mg IV’s often to try to hold on to a little bit of magnesium. The magnesium tablets are awful in high doses and often cause diarrhoea and this is a big issue for us Gitelman people.