What can I do about my high iron levels?

It's me again!!! I am new to this site and it makes me feel very good to know im not alone (unfortunately). I went to the doc yesterday and he told me my iron level was 2600 and that the normal is 154. I became very afraid when i heard this. I have been taking exjade since april and my iron has since increased. I figured it must be due to my eating habits. I love cheeseburgers!!:) I want to know if there is a certain diet I can follow to help lower my iron? I have a beautiful 18 month old girl and she's doing great. She has thalassemia minor and no complications what so ever (thank God). I have too much too live for so if you know of a good diet plan I can follow please inform me. Thanks!!

hi,
do you have thal major? if you do 2600 is not a really high ferritin level.I was always told its good to be about 1000 or below if your can but 2600 isnt the worst! i too am on exjade & my iron levels did go up at first and now have started to come down (which alot of peple have had this problem whilst on exjade) in regards to you eating cheeseburgers all i can think of is red meat may be high in iron otherwise burgers isnt a problem.some other members may be able to shed more light,hope this helps you abit.

thanks sydneygirl!! And yes i am thal major. I've been taking exjade for about 2 months now. How long will it take before my level will begin to decrease?

We have had some previous discussions about a low iron diet. One of these can be found at

http://www.thalassemiapatientsandfriends.com/index.php?topic=113.msg554#msg554

Drinking tea with meals can help inhibit iron absorption from the foods you eat. Citrus should not be taken with meals and instead should be used as a snack between meals, as vitamin C aids iron absorption. There are two types of iron. Heme iron which is found in meats and non-heme iron which is found in vegetable source foods, such as beans and grains. Heme iron is much more readily absorbed than is non-heme iron.

This is especially important in your case. Because of the low hemoglobin level you maintain, iron absorption from foods will be greatly increased as your body tries to produce red blood cells. The lower your Hb level, the higher the absorption of iron in the gut. A low iron diet and tea with meals can be of some benefit in keeping your iron from rising. Continued chelation will also be necessary. A ferritin level under 1000 should be the long term goal.

Hi Miltswifey,

What dose of exjade are you taking? Is this the first time you have used an iron chelator? Your iron is high from a combination of iron from transfusions and iron from your diet. Most patients seem to show a drop in ferritin within 3-6 months, but the permanent dosage is often arrived at slowly so it may take longer to see the results.

hi andy! Um i take 1000mg a day and that is the only chelation therapy i am having right now. My doc orders desferol when i am being transfused but i only transfuse every 3 or 4 months because of my iron.

should i stay away from vitamin c as well?

Thals should not take high doses of vitamin C. 100-250 mg daily is the most recommended. In addition to helping bind iron from food, C can release too much iron into the blood where it can travel to the heart and cause clumping which reduces heart function.

well i was taking vitamin c when i was younger but my doc told me it was unecessary after i went into remission a few years ago. I have not taken it since. (in the pill form that is) do you think taking vitamin c under 250mg a day will b helpful?

The recommended initial daily dose of EXJADE is 20 mg/kg body weight. Doses of EXJADE should not exceed 30 mg/kg per day since there is limited experience with doses above this level. (We have a member of our group that was put on a dosage of 2500 mg per day. It reacted very badly and made her very ill. I don't think high doses are safe). The dosage for a 100-110 pound person would be anywhere from 1000-1500 mg per day, depending on tolerance.

Your ability to maintain a hemoglobin level over 6 with infrequent transfusions would normally classify you as an intermedia, but it is a fuzzy classification and if you started transfusions at a young age you might be called major.

A small dose of vitamin c daily is fine to take. Ironically, thals can often be deficient in C but can't always take enough to correct that.

well i weigh 125 and i was diagnosed with thal mjor at the age of about 1. I had been having transfusions monthly until 11 when i had my slpenectomy. Thanks you very much for your advice you've made my life a little easier.

Posted on: June 28, 2007, 10:05:56 pmPosted by: miltswifey 
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thanks sydneygirl!! And yes i am thal major. I've been taking exjade for about 2 months now. How long will it take before my level will begin to decrease?

Hi Again Miltswifey,
In regards to your question on exjade,im on it also and at first my iron levels went up,i have now been on exjade for 6 months and they have come down my levels now.persist with exjade & good luck!

DIDO!!!

Can I ask a question?

How are you transfused every 3-4 months being a thal major??

This has to be strange unless you are a intermedia needing a transfusion every 3-4 months..

 

well before i had my spleen removed i was receiving tranfusions like evey 4 weeks. Afterwards i went into remission meaning i didnt have to be transfused or take any medz for 5 years then my hgb got low again and i started back. I've been a mjor all my life it's just that now i dont get transfused that often. I have high iron levels, cranial deformity, jaundice(yellow eyes), dark urine, etc...