I agree with all your comments. ALL my doctors know my potassium is low and has been for the last 6 or so blood tests. I was on a potassium IV in hospital and it took 5 days to become normal and that was before the high salt/ Fcort Tx.
I'm still astonished I'm getting told to continue the high salt intake and F/cortisone when I know that sodium pushes potassium out. This was one of the basics I learnt when my little dog who died recently, developed Addisons Disease back in 2003. I asked for a referral for a blood test so I could have my potassium rechecked next week but I was told that it wasn't necessary.
I woke up this morning and I can hardly believe how I look. I already look like someone with Cushings Disease. It's happened so fast. The looks thing doesn't matter I suppose but I feel pretty bad with it. I can't seem to take a deep easy breath like I used to, it's really uncomfortable to breathe. During the night I would wake up puffing and panting just from trying to change positions and at one stage I didn't feel I could breathe properly lying down so I had to sit up for a while.
I don't really know what to do next. You can't stop the tablets because it's dangerous, it's hard to even do a taper because they are so small, how do you anything except halve the dose. (half one day, full the next for a while?) but even this is against doctors advice. I have stopped taking the salt tablet two days ago and have stopped adding salt to my food.
I really don't want to go back to having severe hypotension either because vomiting and fainting isn't a pleasant option, as my hematologist told me, my bones are so brittle that if I fall I could be in trouble.
I'm not normally at a loss for what to do but I am today. I feel something is not right and my doctors aren't listening.
I try not to complain about minor things when I have doctors appointments so I'm very surprised they aren't listening now. In fact, I've been told that I'm considered quite stoic by my hematologist, so why am I being ignored? Does there come a time when they can't do anything to help and I'm being too stupid to recognize that?
Am I now considered so sick that they don't expect me to feel better? is this as good as it's going to get?
If that's what it is, I wish one of the doctors would have the courage to tell
me and I would try to just accept how I feel.
I'm also having difficulty focusing my thoughts and I feel I'm very vague and slow, I have this constant buzzing in my head which doesn't help and because I'm not taking any muscle relaxants, my legs go into spasm at the drop of a hat. All it takes is to lightly touch my body somewhere (if I have an itch and scratch my stomach for instance) my legs spasm and my feet twist and they can stay that way for hours.
Oh Heavens, I sound so pathetic, I'm sorry.
Regards
Chirley