Discussions By Condition: I cannot get a diagnosis.

Whats wrong with my liver? Hemochromitosis?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: john424
  • February 24, 2010
  • 05:24 AM

After a routine bloodtest I had high liver enzymes:

ALT : 175
AST: 110

Further test revealed similar levels, negative for hep A,B,C, mono, and cmv but showed

Ferritin : 357
Iron: 175
% sat: 49%
UIBC 185
Single mutation (C28Y) identified ....Carrier

The scary one

AFP : 27
MRI: unremarkable other that 5mm simple liver cyst
Ultrasound: unremarkable

Ceruloplasmin 15.8 (have not done a urine test yet, should I?)


Im a very healthy 25 year old white male who exercises regularly with no signs or symptoms. I originally had the bloodwork done after noticing what was later diagnosed as geographic tongue (seems accurate as it moved around cleared up and continues to come back every once in a while but I dont think they its related) I was drinking moderately over the past year (2 -3 drinks a night) more on occassion but completely quit about 2 month ago. Used tobacco products for three years and quit that as well, have had my mouth evaluated by a doctor and a dentist with no signs of anything there. Based on these results, I think there is a chance of Hemochromitosis, maybe Wilsons ( told the doc I wanted a urine test but he doesnt think its necessary), and hopefully not the C word. Do these results jump out at any of you docs out there? Just looking for possibilities as the stress of not knowing is really bothering me. Also I work for a company that frequently travels to Mexico, and in the last 2 years I have been to Honduras, Guatemala, and Costa Rica....parasites?

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3 Replies:

  • After a routine bloodtest I had high liver enzymes: ALT : 175 AST: 110 Further test revealed similar levels, negative for hep A,B,C, mono, and cmv but showed Ferritin : 357 Iron: 175 % sat: 49% UIBC 185 Single mutation (C28Y) identified ....Carrier The scary one AFP : 27 MRI: unremarkable other that 5mm simple liver cyst Ultrasound: unremarkable Ceruloplasmin 15.8 (have not done a urine test yet, should I?) Im a very healthy 25 year old white male who exercises regularly with no signs or symptoms. I originally had the bloodwork done after noticing what was later diagnosed as geographic tongue (seems accurate as it moved around cleared up and continues to come back every once in a while but I dont think they its related) I was drinking moderately over the past year (2 -3 drinks a night) more on occassion but completely quit about 2 month ago. Used tobacco products for three years and quit that as well, have had my mouth evaluated by a doctor and a dentist with no signs of anything there. Based on these results, I think there is a chance of Hemochromitosis, maybe Wilsons ( told the doc I wanted a urine test but he doesnt think its necessary), and hopefully not the C word. Do these results jump out at any of you docs out there? Just looking for possibilities as the stress of not knowing is really bothering me. Also I work for a company that frequently travels to Mexico, and in the last 2 years I have been to Honduras, Guatemala, and Costa Rica....parasites?No expert but I have had high liver function tests in the past, ans saw a liver doctor, who explained that the liver must be inflamed to give high results. Like you I had scans and all that showed was fatty liver, my results are now normal. The only way to be sure is to have a liver biopsy, this is not just to rule out cancer but will show why the liver is inflamed. Is your liver a normal size?Do you have any liver pain?
    Anonymous 42,789 Replies
    • February 24, 2010
    • 00:02 PM
    • 0
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  • liver is normal size, new test results showed % saturation 57% and iron serum over 200, dr. diagnosed hemochromatosis even though I am only a carrier and I will start phebotomies next week. I think this all makes sense but I am concerned with the afp. In the last 2 months it has gone from 24 to 30. Doc says probably just liver trying to regenerate damaged cells but I dont like the rising trend. Anyone else have results like that before starting treatment? Im I only 25 and not overweight. Isn't it a little to eearly to start seeing liver damage from this condition (all the websites indicate 30s at the earliest).Thanks
    john424 1 Replies Flag this Response
  • Hi John, Glad you got a diagnosis... Hemochromatosis is a manageable disease and I'm sure you'll do fine once they tap some of that blood/iron out of your system. I don't have hemochromatosis, but I am a blood donor... In the gallon club now. Phlebotomies aren't fun, but if you've got to have something, hemochromatosis is not the worst thing to have to deal with. Regarding your liver worries... I managed to hurt my liver through mixing chemical exposures at work and a few brewskies I would drink in the evening. I did a lot of research and tried a lot of supplements, and wanted to tell you about PPC (polyenylphosphatidylcholine)... A polyunsaturated form of Lecithin (brand names "PhosChol" and "HepatoPro"). This supplement has shown a lot of promising qualities regarding both protection from oxidative stress, which is your issue, and preventing progression of liver disease. I've been taking it for a couple years now, and it has really helped me. No side effects, very good for you, and all liver symptoms are gone, all liver function tests are now normal. PPC is only available on line, and it is a bit pricy, but I thought you might want to at least look into this. If you don't want to try this, simple Lecithin may also do you a world of good. PPC has a much higher ratio of "DLPC" or Dilinoleoylphosphatidylcholine which is the component in Lecithin that does the most good for your liver. Good Luck and GodSpeed. Hope you feel better soon.
    synesthesia 87 Replies Flag this Response
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