I got a call from the Endocrinologist today. My cortisol and ACTH are normal. I don't have Addison's disease. So I asked him what do I have? What are the next steps towards a final answer? He couldn't tell me. He seemed to think it was OK to just say I have virtually no aldosterone, treat it with Florinef and leave it at that. And when I mentioned the heart thing, he advised me to eat more fresh fruit and vegetables "because Florinef can lower potassium". Yes. I had noticed...
But I still want to know why I have no aldosterone? Is there an underlying disease process? And if so, it is hereditary? And who else deals with this condition and how they handle it? Because I have to tell you: I am having difficulty managing this condition right now. The tolerances between underdosing and overdosing seem to be very tight. And there is a lot of margin for other stuff to go wrong. The Potassium thing I know about (but I don't know the early warning signs), but what else is there?
I have searched the Internet trying to find others like me, to no avail. I found some Addison's support groups. But most of those guys are not taking Florinef or are doing so in very low doses. Most of them are dealing with the effects of low cortisol, and the aldosterone seems to be almost an incidental problem; indeed, incidentally treated with Cortef.
It's not that I am doing nothing about this. I found an endocrinologist nearer to home, one who specializes in Adrenal disorders (my current endo is very good, but is diabetes specialist and quite far away). So I will get a second opinion on the aldosterone thing.
And my rheumtologist called yesterday morning. She had gotten the report from the cardiologist (that was fast) and she was checking up to make sure I was going to schedule the follow-up test (I am). I mentioned the aldo. thing to her, and she was very pleased that we are getting close to answers at last. She has been one of my staunchest supporters through all of this. She never suggested that my issues might be psychological. Although she couldn't always directly help, she did what she could and made suggestions. And she submitted all paperwork for disability and other claims promptly.
So although I feel a little lonely, I know I am alone -and more importantly- not without support. That means a lot.