Q&A: Safe Ferritin levels?

Your questions answered.

Your Questions:
What is in your opinion a safe Ferritin level for a patient with beta Thalassaemia major?

My Answer:
Ferritin levels are the most commonly measured body iron storage measurements. While it may not be the most ideal measure of iron level in the body, it has continued to be a very useful tool because of the relative ease of measuring it.
It has been a regular practice to use changing patterns of Ferritin levels as a measure of the body iron status. It is important to note that one single measurement of Ferritin level, in itelf, is less useful than trends or changes in Ferritin level over a period of time. I think that target Ferritin level for patients with beta thalassaemia major should be based on the benefit that level would bring. That is the positive effect on the prognosis in terms of reduction in risk of complications and improvement in survival.

• Ferritin levels above 2000 micrograms/Litre for long periods of time are known to increase the risk of multi-organ damage as a complication of iron overloading. Although used in some places, target Ferritin levels of around 2500 micrograms/Litre are not ideal because of this reason.
• Ferritin levels between a 1000 and 2000 micrograms/Litre are a bit better. However, there still is an increased risk of organ damage if Ferritin levels remain above a 1000 micrograms/Litre for a long period of time.
• Ferritin levels below a 1000 are, based on current data, better targets because the risk of organ damage are so significantly reduced that it is very close to no additional risk.
• The high end of "normal" Ferritin level for the general population is around 150-300 micrograms/Litre dependent on age and gender. It is quite possible to achieve this level. There are several people who have been able to safely reduce their Ferritin levels to this level and maintain it over long periods of time. However, currently there is a bit of concern whether achieving such low Ferritin levels is of significant extra benefit than having a level of less than a 1000 micrograms/Litre. There have been reports of increasing incidence of Desferal side effects in individual who have very low Ferritin levels. This could perhaps be reduced by using lower doses.

My current practice is to encourage patients with beta thalassaemia major to first try to get their Ferritin levels to below 2000 micrograms/Litre. Those who can achieve this will be encouraged to lower it furthur to less than a 1000 micrograms/Litre. And once that is possible have it reduced and maintained around 500 micrograms/Litre.

I think it is very important to communicate this entire plan to the patient at the very beginning, so that they can themselves monitor their progress and know that each of the set targets are steps in achieving the 500 mark.

Having said that, from a prognosis point of view maintaining Ferritin levels anywhere below a 1000 micrograms/Litre is considered a good target. And the 500 micrograms/Litre is no universally accepted as the best Ferritin level.

A note to readers:
Reductions in Ferritin levels can take time. It requires a lot of effort from the patient as well as their families. It can be achieved with Desferal safely. I would like to remind readers that it is absolutely vital that you discuss with your treating doctor regarding setting targets and planning for lowering your Ferritin levels, especially with respect to your Desferal dosage. No change to treatment should be brought about without consulting your doctor.

Role of wheat grass juice in beta Thalassaemia major

Your Questions answered.

Your Question:
What are your thoughts on wheat grass juice and its role in reducing the transfusion need?

My answer:
Wheat grass juice has been used as an energy boosting drink for many years. There have been many “beneficial effects” attributed to it based on anecdotal evidence. The juice is made by blending (or extracting juice from) the green leaves and shoot of the wheat grass. This is the wheatgrass product that has been studied.

I am aware of other preparations (including: wheat grass extracts which have apparently had chlorophyll removed from it, nasal and oral sprays and powder forms) being “trialed” in different parts of the world.

The essence of the discussion is based on a 2004 Indian study[1], which reported that a subgroup of patients with transfusion dependent beta Thalassaemia major who took wheat grass juice had had a significant reduction in their transfusion requirement. I must emphasize here that this was only seen in a subgroup of patients and not in all of them.

There hasn’t been a lot written about wheat grass juice in medical literature. However, with the findings of the Indian study there has been an increased interest in obtaining more information on this “new find”.

The current thought is that there is an as yet unidentified ingredient in the wheat grass juice that is able to increase the production of fetal haemoglobin. Although significant, the increase in fetal haemoglobin, and the subsequent reduction in the need for transfusion was not enough to altogether stop transfusion for any length of time.

This is all very interesting and exciting from a research point of view and it could be the impetus for new research into newer forms of treatment in the future.

However, I must warn readers that at this stage all this is experimental. Nothing is conclusively proven. I believe that there is a benefit, but this has to be established through more research.

My current view is that wheat grass juice be treated as an experimental agent with potential benefits in the future. I do not recommend it as part of general routine treatment of transfusion dependent beta Thalassaemia major.

Those people interested in using wheat grass juice, or its other forms, should only do so under guidance and supervision of their treating doctor so that any benefit may be documented properly. The evidence to date is that the “beneficial effects” are seen slowly over a period of several months. Therefore it is not a quick fix.

The side effect profile of wheatgrass juice (or its extracts) is not well documented at this stage. It is claimed that the side effects are minimal and that the most significant of them is a skin rash (possibly allergic). Please be aware that natural products can and do have side effects contrary to what some people would like us to believe.

It should also be noted that chlorophyll, the green pigment in plants, is a source of iron. Therefore individuals with an already high Ferritin level should be extra vigilant with their Desferal injections should they chose to try wheat grass juice. They may in fact not be good candidates to try wheat grass juice. This needs to be discussed with the treating doctor in detail before any trial is started.

1. Marawaha RK. Bansal D. Kaur S. Trehan A. Wheat grass juice reduces transfusion requirement in patients with thalassemia major: a pilot study. [Clinical Trial. Journal Article. Randomized Controlled Trial] Indian Pediatrics. 41(7):716-20, 2004 Jul.

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Vitamin C in Beta Thalassaemia

Your Questions answered.

Your Question:
"Why are we given vitamin C?" a patient with Beta Thalassaemia major.

My answer:
The iron accumulated in the body as a result of long term transfusions and increased absorption from the gut is “stored” in the body in many different forms. Not all these forms are available for Desferrioxamine (the active ingredient in Desferal injection) to combine with. The iron that is in the forms that can combine with Desferrioxamine is called “chelatable iron”.

What Vitamin C does is to mobilize the iron in the different storage forms to become “chelatable iron” thus enabling Desferrioxamine to combine with it and remove it from the body.

This action of vitamin C is very short lived and therefore it is important to time its use with the Desferal injection. It is recommended that the vitamin C tablet be chewed and swallowed at the time of inserting the needle for Desferal injection (pump).

Please note that use of too much vitamin C can be very harmful in patients with iron overloading.

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Exjade gets FDA approval

The new once-daily oral tablet Exjade (Deferasirox, also known as ICL670) has been approved by FDA in the US.

Exjade is currently the only once daily iron chelator on the market. Its availability and approval for use in patients with chronic iron overload (from as young as 2 years of age) would revolutionise the management of illnesses like Beta Thalasaemia major.

Read the Novartis press release