Post by mary888777 on Nov 27, 2015 15:30:44 GMT -5
Diagnosed at 55, 5 years after finding out kidney stones & uric acid had damaged a kidney to 15% of use. They wanted to remove it and I decided no. It's still hanging in there 10 years later.
I've recently had another Litholink study done and it was very interesting. The uric acid level in my urine has doubled in the last 5 years. The levels in my blood are still normal. The urologist I went to, the best in the area told me that could not be right because my uric acid was caused by my diet. So I asked him has he ever heard of HFI and as always he's thinking Fructose Intolerance, you can tell after while by the look on their face. I respect a doctor that says no rather than one that just tries to wing it.
The Litholink study stated that my diet was not high in purines and that tests should be done to see if the cause was from a rare genetic defect. Hello Dr, that's HFI! So far, the only health professionals I've worked with that had knowledge of HFI was my dentist because he did a paper on it in medical school. He said at that time there were only 35 diagnosed cases in the US at that time, due to his age I'm guessing that was in the late 70's. My pharmacist only because I had it, he never heard of it and decided to study it. And finally my gastroenterologist. When I told him my symptoms and asked about being tested he said, "If it walks like a duck, quacks like a duck, it's a duck. No need to spend a lot of time and money for me to tell you it's a duck."
Needless to say I went to a nephrologist who specializes in kidney stones. He said I had to take Potassium citrate and allopurinol. The reason being the potassium citrate blocks new uric acid from forming and the allopurinol dissolves the old acid. I told him the potassium citrate gives me uncontrollable diarrhea and the allopurinol turns my urine brown and makes it stink. He said I have no choice if I want to keep my kidneys working. That I had to take the potassium citrate, I had to learn to live with the tummy issues and those were signs the allopurinol was working.
So I went to the gastroenterologist, he told me eat small amounts of rice during the day, drink rice milk and take imodium every morning and more as needed. He couldn't give me anything else due to interactions and side effects. After this I was extremely depressed. I work in a very small office and the bathrooms are in a very public place. There is nothing discreet about having a severe case of diarrhea. I spend my work day worrying about what is going to happen that day. It was bad enough when I just had HFI issues.
I'm going to see my primary care physician next week to see what I need to do to go out on disability. I'm so miserable all the time, I don't eat during the day anymore which causes me to get the shakes from low blood sugar.
Anyone else take potassium citrate with the same side effect?
I've recently had another Litholink study done and it was very interesting. The uric acid level in my urine has doubled in the last 5 years. The levels in my blood are still normal. The urologist I went to, the best in the area told me that could not be right because my uric acid was caused by my diet. So I asked him has he ever heard of HFI and as always he's thinking Fructose Intolerance, you can tell after while by the look on their face. I respect a doctor that says no rather than one that just tries to wing it.
The Litholink study stated that my diet was not high in purines and that tests should be done to see if the cause was from a rare genetic defect. Hello Dr, that's HFI! So far, the only health professionals I've worked with that had knowledge of HFI was my dentist because he did a paper on it in medical school. He said at that time there were only 35 diagnosed cases in the US at that time, due to his age I'm guessing that was in the late 70's. My pharmacist only because I had it, he never heard of it and decided to study it. And finally my gastroenterologist. When I told him my symptoms and asked about being tested he said, "If it walks like a duck, quacks like a duck, it's a duck. No need to spend a lot of time and money for me to tell you it's a duck."
Needless to say I went to a nephrologist who specializes in kidney stones. He said I had to take Potassium citrate and allopurinol. The reason being the potassium citrate blocks new uric acid from forming and the allopurinol dissolves the old acid. I told him the potassium citrate gives me uncontrollable diarrhea and the allopurinol turns my urine brown and makes it stink. He said I have no choice if I want to keep my kidneys working. That I had to take the potassium citrate, I had to learn to live with the tummy issues and those were signs the allopurinol was working.
So I went to the gastroenterologist, he told me eat small amounts of rice during the day, drink rice milk and take imodium every morning and more as needed. He couldn't give me anything else due to interactions and side effects. After this I was extremely depressed. I work in a very small office and the bathrooms are in a very public place. There is nothing discreet about having a severe case of diarrhea. I spend my work day worrying about what is going to happen that day. It was bad enough when I just had HFI issues.
I'm going to see my primary care physician next week to see what I need to do to go out on disability. I'm so miserable all the time, I don't eat during the day anymore which causes me to get the shakes from low blood sugar.
Anyone else take potassium citrate with the same side effect?
