This is the latest medical problem. They have reduced my Lasix to see if that is causing it? Has anyone else managed TWO different kinds of kidney stones at ONCE? There could be calcium kidney stones now, hypercalciuria is too much calcium in the urine.
I just got the uric acid ones under control again. I passed a small stone last night. It gets wearing. The kidney doctor does seem to be good, he dug up some old files and brought up my adrenal problems from 20 years ago when they did an adrenal scan and I was diagnosed with hyperadolsteronism. I was told then, I had seven times the adrenal hormones as a normal person. This was the time there was high cortisols. That doctor put me on the androgen blocker that took me down in weight from 700lbs to 450. I was forced off that drug 6 years ago. This doctor does seem to acknowledge things with me are very complex.
With the weight, I'm scared, I'm eating less but it's only stayed "stable", the same 520. I'm glad I have been stable but it's far too high. My appetite has felt reduced too, where most food seems "gross" to me, and that still didn't take any off. My A1C came down. I think my weight is even confusing the doctors. Advanced kidney urine tests by the way tell them everything you are eating. They know if you are pigging out on hamburgers or like me lowering the protein.
Even vegetarianism hasn't taken things off. I had a salad for dinner and a little soup two days ago, 1 chicken sausage and some rice with celery and green pepper last night. It occurred to me outside of a small Duo protein bar, I haven't eaten anything sweet in two years and still the weight remains insane. I'm living the Steven King book, "Thinner" but title it "Fatter" this time. Oddly the weight thing shocked me too because I have looked thinner in the face and arms but it didn't show in the numbers. Maybe the water weight is part of it.
I know no one should be maintaining this weight based on what I eat. Lipedema stage 4 does very bad things to weight but it seems beyond this. This doctor did refer me to an endocrinologist. Remember I was going to see one again, I needed a referral. Too much is going wrong. I need to know where the testosterone is even and have to shave my face on occasion.
My fatigue has been extreme and there's muscle problems too lately. One autoimmune problem the Dermatomyositis may be moving from skin involvement to muscle involvement. My legs have felt "weak" at times. I may be asking to be put into the hospital if it gets much worse even with the Covid dangers. I really have needed to be in a hospital or rehab for years. I used to beg to be put in to have 100 taken off, but none of them would do it. I know functioning would be far higher at 420 then 520. I was 460 in 2013 but that is too long ago.
Sometimes I go and lay in my bed for an entire day just getting up for necessities, and then that seems to improve the pain where I can walk around better and manage. So that's how I have done it. Some I am sure would say "Go get more exercise". I try. I can still walk through stores the same and do some gardening at least. My life does need some activities. People don't know this about me, but even though I had severe disabilities, I liked living life and doing things as much as I could.
I don't feel "too bad" today, but some days, it's really bad. There were days if not for Covid, I would have checked into the hospital. Every morning I look around at my apartment and feel overwhelmed, this is not good for mental health. It could be worse without my husband doing the laundry, trash, and he cleans up things I'm not up to lately. One troubling CFS problem is I literally could sleep all day if I let myself.
With the endocrinologist, I'm really going to press for genetic tests, there's too much wrong, so many illnesses I can barely keep track. None of this makes sense for one person to have so many things wrong. The ringing in my ears and going deaf has been difficult too. I'm hoping the doctors get some answers. I'm glad the kidney doctor went into my old records.
Something is wrong they have not discovered yet, I am sure of it. The body never worked right and so much is wrong. I believe I have a genetic or other disorder, I even find myself wondering if I have some parathyroid condition or other complex condition. I need to tell the endocrinologist in the 1990s, a doctor mentioned me having polyendocrine autoimmune disorder. Hopefully I can get more answers.
One thing it is known fact in the Lipedema world now that severe autoimmune diseases often go with Lipedema especially in high stages. I did meet others with extreme autoimmune diseases with stage 4 Lipedema. This is being talked about on advanced medical boards for Lipedema.
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