Afraid I might have Hemochromatosis. Please Help

[medhelp7171]

Hi, My Dr just did a full Iron panel on me and here's what came up in the lab report.

Iron and TIBC

Test Description  Result      Range     Units  
Iron Bind.Cap.(TIBC)001347   309      250-450   ug/dL  
UIBC001348                         247      150-375   ug/dL  
Iron Saturation011362             20      15-55   %  

Test Description           Result              Range   Units  
Ferritin, Serum004598    809                22-322   ng/mL  

My ALT was high because of my fatty liver
                               Result      Range
ALT (SGPT)001545    77          0-55   IU/L

My CBC came back as follows.
                    Result   Range
GGT               34      0-65   IU/L  
WBC              8.9      4.0-10.5   x10E3/uL  
RBC               5.63      4.10-5.60   x10E6/uL  
Hemoglobin    16.7      12.5-17.0   g/dL  
Hematocrit      48.4      36.0-50.0   %

I'm so nervous that I might have Hemochromatosis. I spoke to my PCP and he told me they checked me back in 07 and it came bac negative and he won't check again. He made an appointment with a Hematologist but it's not till end of September. Based on my bloodwork about does it look like I have Hemochromtosis? I really don't have any symptoms except for upper right abdomen discomfort every so often. Please help. Thanks

[widner103]

Hi There,

I was dx'd with hemachromatosis by my gastro doctor who was treating me for Hep C.  I come up positive for the genetic test after my doctor examined the the tissue sample from my liver biopsy.  I have read that biopsy is a very important tool in dx'ing hemachromatosis.

Your liver cells (like all the organs), have a certain capacity of storage for iron in the form of Ferritin.  Once that capacity is reached, the iron changes from Ferritin into another compound, which I forget the name of at the moment.  But I do remember that the compound it changes into is toxic.  It kills cells in the affected organs.  The dead cells leak the Ferritin that was stored, and that Ferritin then becomes toxic, increasing the toxicity in the tissue.

While your labs appear to indicate a definite iron overload, I don't know if it's caused by hemachromatosis, but I do know that you need to do something about it.  My strong advice would be to see a hematologist.

When I was dx'd with hemachromatosis, my gastro put off my hep c treatment, because too much iron in the liver will prevent interferon from working.  I went to the hematologist, and she had me get phlebotomy once a week for 5 weeks.  Then once a month after that until my lab results showed improvement.  This worked for me.  After the phlebotomies, I went on peg and riba, and cleared the virus in 24 weeks.

From what I've read and heard from the professionals, iron overload can be more damaging to your liver than the hep c virus, but it's much easier to correct.  Once you start to get drained, your hematologist will probably give you meds to stimulate your bone marrow, like nuepogen.  The side effects are an annoying body ache that the doctor will say can be helped with ibuprofen.  In OTC doses it won't harm your liver, but you'll probably only be taking it for the placebo effect.  Your RBC and WBC counts will drop.  My WBC hovered around 1.5 - 2 while I was doing phlebotomy, which I thought was dangerously low, but my doctor didn't seem too concerned, so I didn't either.  I don't remember what my ferritin was when I started, but it dropped significantly after the 1st phlebotomy.  I stopped after it reached close to 40.

End of Sep seems like a long wait to see your hematologist.  If you're not locked into an HMO, you might be able to schedule directly without depending on a referral from your PCP.  Personally, I would not worry about whether my iron overload is caused by hemachromatosis or something else.  If it is hemachromatosis then you will probably need phlebotomy once a year for the rest of your life after your labs return to normal.  If it's not hemachromatosis, then you may not need the annual treatment.  I also don't think the degree of tissue damage (if any), will get worse between now and Sep 30, but I'm not a doctor.  I just know what I read, and what I remember (vaguely), from my own experience.

The only other advice I would offer is to relax and take a deep breath.  Then reduce the iron intake in your diet, drink a little more water each day.  Increase your exercise a little, and your internal organs will thank you for it, and you don't even have to make a co-pay.  I hope I was able to answer your question.  Good luck and God Bless!

[alagirl]

ask your doctor for a copy of the test results.  I'd be interested to know if you have partial heredity.  It was thought that people who were heterozygous were only "carriers" but they apparently do have more likelihood of having higher iron levels.  There is also a relationship between iron overload and those who have, or have had, hcv.  Regardless of WHY you have iron overload, the important thing is to treat it.  If this doctor won't get with the program and won't refer you to a specialist, get another doctor.