Hi Just wondering if anyone can tell me if during a capillary leak episode your iron saturation levels can become toxic? I watch my blood results closely. I know whenever I am in capillary leak based on my CBC/w Diff, but recently I went from anemia straight to toxic levels of iron in my blood and dangerously high liver enzymes. Whenever my blood results show that I am in capillary leak, my iron and liver enzymes are also dangerously high. When I am not experiencing capillary leak I am anemic and my liver enzymes drop to almost normal levels. My GI recently called me at 7:00 am very concerned. I have found that if your Dr. calls late at night or early in the morning it usually isn't good news. (; My GI ordered a liver scan and a phlebotomy? I have had 9 major surgeries and so many procedures I have lost count and I had zero clue about this phlebotomy. His goal was to take blood A LOT of blood to reduce my level of iron. I honestly felt like I was in a different century and my doctor ordered a blood letting... ha ha ha But seriously can capillary leak cause high levels of iron in the blood? if so can I educate my GI? I have been extremely ill since the blood letting. I honestly feel exactly like I do when my iron is low. Thanks in advance for any help Kimberly

Hi Kimberley Love your sense of humour. Iron level measurement is difficult because it reflects not only the absolute iron level, but also the body's ability to carry iron around the blood stream. There is this protein which carries iron and if it is fully loaded (think of a cart carrying barrels of iron). then the overflow is reflected in the iron levels. A second consideration lies in the fact that the liver cells store iron. If the liver cells are damaged (as reflected in raised enzymes) then they may well release large quantities of iron. A third consideration is that an excess of iron can be liver toxic(and pancreas etc) in a condition called haemosiderosis, and others. I feel sure your gi would have considered all of these. Do you receive IVIG? John

Thank you John! Yes I am on IVIG every two weeks. Yes you are exactly correct about the liver and iron. That was the first thing that my GI said when I saw him in December. He called me at 9:30 pm on a Friday and scheduled me for an appointment on Monday morning. He ran every imaginable test. Celiacs, Genetics, CBC/w Diff, CMP and a bunch of other tests that I have never seen in my chart before. I still haven't figured out what he is trying to find and if my capillary leak causes iron toxicity? I had three blood tests in December all showed capillary leak and iron toxicity with elevated AST ALP and one other liver enzyme. January 16 I had more blood tests and Thursday the GI called at 7:00 am with instructions for tests I was to receive on Friday. Well I am sure that eventually I will find out (: Thanks for your help Kimberly

Hi everyone I am still at a loss... Well my liver scan was unremarkable? My doctors can't seem to figure out why my iron saturation and liver enzymes are unusually high during periods of capillary leak. When the capillary leak is over both of the other conditions seem to resolve. Does anyone else experience elevated iron levels during an episode of capillary leak? I could really use any form of advice or personal experience going forward. Thank you Kimberly

Hi Kimberley This is by no means a definitive answer. Consider however that the capillary leak occurs in diverse organs for no known reason. Many experience peripheral muscle oedema causing swelling, arterial occlusion and progressive muscle death. My leak occurs into my lungs. Others suggest pericardial or brain leaks. Perhaps yours is into the liver. Now the lived is encased in a tight fibrous membrane and any internal swelling will cause arterial compromise to the liver cells, hence raising enzymes. It is important to realise that a raise in enzymes represent damage, but not death, of liver cells. The symptom you would get is liver pain. This may or may not explain what is happening with yourself. John

Update 

Phlebotomy Bad!  Guess GI and Hematologist didn't run the phlebotomy by Dr. Lauter.  Dr. Lauter basically wrote a decree in my file that any Dr. or procedure MUST be approved by Dr. Lauter and Dr. Lauter alone! Phlebotomy during Capillary Leak can be extremely dangerous.  Just thought you might like to know.  My iron saturation is high during my capillary leak and both my liver and pancreas are just fine.

Kimberly