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Post by Katie535 on Dec 19, 2017 19:42:42 GMT -5
I am 40 yrs old, diagnosed with HFI a couple of years ago. I went to the metabolic clinic at Oregon Health & Science University shortly after I had the confirmed diagnosis, and they did some routine labs. My kidney function tests were elevated, my liver function was okay. Are there routine labs that anyone does every year to be sure that your kidneys/liver are functioning okay? Does anyone recommend a liver ultrasound if the blood work looks okay? Any other annual labs? I don’t really want to go back to the metabolic clinic every year because of the cost, but I am the only patient with HFI that my general practitioner has. How do you all monitor the current state of your organs and vitamins? Many thanks :-)
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Post by rysmom14 on Jan 3, 2018 7:53:50 GMT -5
Hi Katie!
My son has been diagnosed for around 3 years. we see the geneticist every 6 months ( the metabolic dietician and genetic counselor) and the GI/ metabolic liver Dr. once a year. he gets a liver ultrasound once a year. as far as blood work, her gets the liver panel, CBC most regular. depending on what comes up from there sometimes they add on different vitamin levels or something. but the Liver panel and CBC are the 2 main lab draws. He gets those done every 3-6 months.
currently he has been having some elevated liver numbers so they have been watching a little closer, but when everything is regular the goal is:
GI/ Liver Dr- visit every 1- 2 years
Genetics- visit once a year
Liver panel and CBC- once a year
he does take a daily vitamin.
Hope this helps.
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Post by Katie535 on Jan 7, 2018 22:22:16 GMT -5
So I had my liver enzymes, CBC, and uric acid checked. My BUN/Creatinine ratio (kidney function) were high, but thankfully the liver enzymes were normal. I have been getting a lot stricter with the diet, and am recognizing my symptoms when I cheat. Very thankful for all of the wisdom on this discussion board.
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