Undiagnosed Illness

[JT24usn]

I have been having low readings in my labs for red blood cell count. They, the va, say that I'm anemic. Problem is, I also have a lot of iron in my liver. How can I be anemic and have high iron count? Doctors say I have low iron in my blood circulating, but the red blood cells that go through the liver are breaking down and storing the iron...AKA they don't seem to know? They thought my liver was NAFLD, but live biopsy came back normal, just loaded with iron. Then they did a genetic test for hemachromatosis, negative. So in the mean time, they are doing phlebotomies while the Drs try and figure my liver out. Now the problem is I keep passing out or get shaky seety and nauseous after the draw. So, my question is they don't know sounds like possible undiagnosed. Circulatory is one of the new issues. I was in Bahrain and je bel Ali for four and half mos. Talked to other guys who were over there and they too have high iron inliver. Just some thoughts. Also my ALT readings are twice my AST ( liver readings). Both are high

[cooter]

T8r, Let me get back to you in about 45 minutes, I have Hemochromatosis and there some things you should know before your Dr completely ignores it! You still may have it!

Coot

[JT24usn]

They pulled some more vials a month ago and I meet with the hematologist in October for the final say so. Right now ( gotta love it) iron overload not otherwise specified other than hemachromatosis.

All plays nice with my digestive issues, hypoglycemia, and anemia. Any input would be greatly appreciated.

[cooter]

Sorry it took so long, I was dx with hemochromatosis in 91, and even then I had the hardest time finding a Dr that knew anything about, not to mention treating it. Even in 91 it was considered a rare disease. Well anyway, Thats a long story, so I'll skip it for now.

So you took the generic test and came back negative so then they took a biopsy and that came back normal, right? If you would, could you explain what you meant when you stated " but live biopsy came back normal, just loaded with iron." Are you saying the biopsy showed it was loaded with iron, or are you getting this from a blood test?

Coot

[cooter]

Believe it or not, you can be anemic and Hemochromatosis at the same time. What hch (short for hemochromatosis) is, it's excess iron that the body can't excrete and then it stores mostly in the stomach until there's so much, it begins to store in your organs, particularly in the liver. Are you having any stomach pains at all? Mine got so bad at times, I would fall to my knees. Do you feel tired and weak all the time? That also is another symptom of hch.

Now, this is really important! Just because the biopsy doesn't show excess iron levels, that does not mean you don't have hch. It could very well mean your iron levels hasn't reached the point to start spreading out throughout your body yet! That is exactly what the medical experts involved with hch wants to do is stop it BEFORE it reaches the liver first and then on to the rest of the organs. There has been to many cases where the liver breaks down with cirrhosis because, either the doctors misdiagnosed the hch, or the patient waited to long to be dx.

Iron overload is a flat out killer!!!

A good friend of mine who was also a coworker, died of a massive heart attack due to hch. So you can imagine how I felt when I was dx with it. Luckily for me, it was dx before it was to late. My liver already had some irreversible damage, and my lungs were partially collapsed, and a few other things, but lets get back to you.

If your Dr prescribed an iron blood panel test on you, did the results show the "serum transferrin saturation levels"?

If there is results for this, is it above 65%..? I hope it's not.

In your statement "they are doing phlebotomies while the Drs try and figure my liver out." how many cc's are they drawing?

Are they doing it weekly or monthly?...Are they going to keep drawing till the iron levels are down to below normal?

A little heads up, if you do have hch, you have to continue having the phelebotomies for the rest of your life. Depressing isn't it.

Coot

[JT24usn]

Liver biopsyt was done for NAFLD. Turns out there was hardly and fatty deposits. No cirrhosis. No granulomas ( whatever that us). But the biopsy screen showed a high amount of iron being stored in the liver sample from the biopsy. Ferritin levels were over the normal limit. So my gastro doctor ( treating me for my sc conditions). Handed me over to a hematologist. After blood tests the first time at the hematologist he said hemachromitosis market was negative. Then I got the generic diagnosis mentioned below. He has been doing phlebotomies while we wait for other teats to come back. I go back on the 18 th of October. I have some other buddies that were in the gulf

With high liver counts. My other problem as intentioned was i am anemic too. Evertyome they take blood I either pass out or almost pass out. Good news is the phlebotomies ate working. My count is going down. Just have to do it the rest of my life. Be nice to know what it is. Hence the undiagnosed illness or unknown cause of

Anemia and iron overlIOad. Thanks for listening.

Did your gene marker test come back negative coot?

Edited September 29, 2011 by T8r

[cooter]

Granulomas>Hepatic granulomas are abnormal small clumps of cells that form when certain disorders are present.

T8r, here is a link that I would suggest you read. It might help you understand anemia with iron overload.

anemia pt1

Yes I was dx with the mutated gene.

Also here is a link to an assn. that I used to be a member of years ago. It was and still is the best web site going concerning anything and everything about hch. There is a yearly fee to be a member.

home

Coot