Interesting question: Iron tablets.

Readers' question:
I am a Beta Thalassaemia carrier. I saw a doctor who said that I need to take iron tablets. I have been told by a friend that Thalassaemia carriers can’t take iron because it can cause iron overloading. Could you help me sort this out?

My answer:
Let me start by noting down some facts:

• Iron does not cure Beta Thalassaemia! It does not reverse the changes in the appearance of the blood cells caused by Thalassaemia carrier states.
  
• Anyone who is shown to be iron deficient should be given iron! This has to be shown by blood tests that actually measure iron levels and not through indirect tests.
  *Indirect tests (like demonstrations of smaller sized blood cells and pale looking blood cells) are not specific to iron deficiency. What is important for us is that these same changes can be seen with iron deficiency, Thalassaemia carrier states or both occurring together.
  *The direct tests measuring iron level are available in the Maldives.
  
• Patients with Beta Thalassaemia major have excessive iron in their bodies. This happens in 2 ways.
  Through blood transfusions and by excessive iron absorption from food.
  
• It can be dangerous for someone with iron overloading to take more iron (as with iron tablets).
  
• Beta Thalassaemia carriers, unless there is some other problem, generally do not have increased iron in their body. If they do become iron deficient, and they can if their diet is iron depleted or because of other problems, they would indeed need to be given iron.

I would suggest that you confirm from your doctor whether you have been shown to be iron deficient by blood test that directly measure iron level. If this has been established then you will need to take iron. Don’t hesitate to ask questions from your doctor. Doctors are legally and ethically obliged to answer any questions that you have related to your health.

I think it is important to known a person’s iron status before starting iron therapy. This is especially important in a country like the Maldives where the incidence of Thalassaemia is so high.
There are documented cases (not from the Maldives) where people with some forms of Thalassaemia (mostly alpha Thalassaemia- the genetic mutations for which have now been shown to exist in Maldives) have had their condition worsened because of secondary iron overloading resulting from use of iron.

Permision obtained from the reader for posting question.

My Project: Study of Desferal use.

My study enters data collections stage.

I have begun collecting data for my study on Desferal (Desferrioxamine) use among patients with Beta-Thalassaemia major in Melbourne. I will be looking at different aspects of use of the medication especially the adherence to prescribed regime and difficulties patients have adhering to the regime.

I hope to collect a similar set of data from the Maldives at a later stage for comparison.

I was asked to read this:

This URL from the Green Imperative, community outreach program by Banyan Tree Maldives was sent to me by a reader. http://www.banyantree.com/greenimperative/outreach.htm

I would like to thank Banyan Tree, Maldives for their efforts in helping Maldivian patients with Beta Thalassaemia major.

There are a few things that I MUST correct/ammend (or add comments to) on this webpage:

1. In the end of the first paragraph it reads "there is also a dire lack of iron...". This information is incorrect. In fact there is an excess of iron in patients with Beta Thalassaemia major. This is the reason why they need to use Desferal, the iron removing injection.

2. While it is true that many Maldivian patients with Beta Thalassaemia major die due to complications of the disease by around 20-30 years of life, this is not the case in most centers around the world. Patients indeed do live "generally well" into their late 50s provided that they receive adequate transfusion AND iron chelation therapy. Our patients need to be aware that they can live a relatively healthy life well over 20-30 years by being more compliant with their treatment.

I have sent an email to the web editor of the site regarding these errors on the page a few weeks earlier.