Thalassemia and Hemochromatosis

I'm a beta thal carrier with hemochromatosis.  The latter is a very common genetic disorder (affects 1-1.5% of people of Northern European decent) that causes one to bind abnormal amounts of iron in the soft tissues (esp. the liver and pancreas).  It's potentially lethal if undetected (which is common, because it reamins asymptomatic until it's too late to treat) but is easily treated by weekly phlebotomies which leach the iron out of the soft organs.

Here's the catch-- people with thalassemia (even thal minor) tend to bind iron more than normal anyway.  This tends to make hemochromatosis more dangerous in those with thalassemia.  Also, it's hard for thal minor carriers to tolerate the weekly phlebotomies because we tend to have very low hemoglobin levels to begin with.  So the earlier you can detect and treat the hemochromatosis, the better.  (Any of you Greek-German, Irish-Italian types out there with thalassemia might want to get tested for hemochromatosis.  Any hemotologist can prescribe the appropriate blood test to tell you whether you have it).

It occurs to me that if one were to have thal MAJOR and hemochromotosis the combination would be especially bad if not found and treated early because the transfusions necessary to treat thal major are COMPLETELY contraindicated for hemochromatosis. 

The bottom line is, if any of you fit the profile and are having an especiallly difficult time keeping your ferritin levels at bay, you may want to get checked for hemochromatosis.

I hope this is of some help!

Chris

Hi Chris!

I guess this is what Chelation is for. You know Desferal and Exjade (and a couple of others).

Take care, Peace!

Hi Chris,
     Welcome to the site. Your story is very interesting. I wonder if I am in the same boat. I have thal intermedia, but they are not sure yet why my hemoglobin is so low, because I only have one beta gene affected (they're not sure about my alpha genes yet). I am 55 and started monthly transfusions 4 years ago. My ferritin level stays at a 2500 to 3000 level despite using desferal, and now exjade.
      I am half Greek, and half German/Irish. I have an uncle who possibly had hemochromatosis, because I remember my mother telling me he had something wrong with his blood, and he had to have blood taken out. I don't know if I anywhere along the way during my many medical evaluations, I would have ever been routinely checked for this. I remember bringing it up a few times, about my uncle, but no one thought it was very important.   
     I will bring the subject up again. How old were you when it was discovered? What is your hemoglobin level usually at? do you have anemia symptoms?
    Thanks for the info.  I hope you and your family are doing well. Jean
     

Jean--

I found out about hemachromatosis about a year and a half ago (when I was 41).  I had high liver enzymes on blood test for life insurance.

There's a simple blood test that can be done to confirm whether or not you have it.  They just check the particular gene on which the disease is carried-- if you ask your doctor he should know about it.

My hemoglobin is chronically low due to having thal minor (around 12.5-13.5).  But the weekly phlebotomies for hemochromatosis treatment have made it drop to around 10 (my doctor put me on Procrit to keep it at 10 or higher).  My only symptom from anemia is that I'm pretty pale and I'm a lousy mountain climber. 

If it turns out that you have both thal intermedia AND hemochromatosis, you'll probably need to really be aggressive with chelation.  But I'm not a doctor, so I'm just guessing.  Good luck!  If there's anything else I can tell you, let me know.

Chris   

Chris,
     Thanks for the info. I will check it out with my doctor. Good luck to you and your family. Jean

What exactly is hemochromatosis?

Hemochromatosis is a hereditary disorder in which too much iron is absorbed from food. Iron builds in the body to the point of overload. The typical treatment is bloodletting. It has been a poorly understood and often unrecognized problem that is only now being recognized as a much more common disorder than previously thought. It can co-exist with thalassemia and can add to the iron absorption problems.

Hi Andy,

Is IP6 a good idea for thal minors too?  It seems to have so many benefits, and being a thal minor I may be prone to iron accumulation too.  The product has worked so well for my son, I wonder if it would be good for us thal minors as well.

Sharmin

Since IP6 has anti-oxidant properties and inhibits many cancers by preventing the formation of radicals, it may be useful for many people. It is also being investigated as an anti diabetes agent. It is also suspected that the benefits of bran lie in the IP6 contained in bran. I do think it's worth trying by thals and non-thals and I'm surprised we haven't heard more about thals trying it.

Does IP6 come in a liquid form??? Is aluryn old enuff to take it???

Hi Christine,

I haven't seen IP6 available as a liquid but the capsules can be opened and the IP6 dissolved in water or juice. There's a little chalkiness but it doesn't seem to have any taste.

Hi Christine,

This one from Jarrow's is already in powder form and is in pretty strong dose 1000mg so you could use a very small quantity of it for Lauryn.

check it out: http://www.wholesalesupplementstore.com/jr-251.html

Take care, Peace!

huum not feeling good today, Jay is not responding to the fullest to Deferasirox full dosage, doc said to start infusion from next week. He is carrier for Hemocrometosis