Discussion Forums > Thalassemia Major

Ferritin too low?

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Andy Battaglia:
L-glutamine is being studied in thals to see if it can lower the rate of hemolysis, which in the long term leads to pulmonary hypertension (PHT). It may have some value, as we know that L-carnitine, L-arginine and L-citrulline all do in helping to prevent PHT. However, because transfused blood is not native to the recipient's body, it can never last as long as blood produced by one's own body. This is why I think the work of those like Dr Perrine may have a more significant value simply because these Hb inducing drugs mean less transfused blood and more blood produced by one's own body, which will be blood that lasts much longer. Freeing patients from transfusion has to be the ultimate goal, but combined with methods to make blood last longer, we can see great potential.

I just want to make a note. Whenever I read about PHT I see this description of symptoms.
http://www.thalassemia.com/Glutamine.html


--- Quote --- PHT can cause fatigue, dizziness, and shortness of breath because the blood vessels that supply the lungs narrow, forcing the heart to work harder to push blood through. People with PHT tend to have more health problems (shortness of breath, pain crisis in sickle cell disease, pneumonia, and death) than those without PHT.
--- End quote ---

How many hundreds of times have we seen this same description from thal minors? This needs investigation in thal minor because thal minors are subject to a lifetime of hemolysis.

Apollo:
This is what I was thinking, the ferritin could be lower. The fear of the doctors is that it would begin extraction other minerals like zinc because the ferritin was too low. I don't know how to convince them, what should I say? They think that iron loading of the organs won't occur at this low of a ferritin. They want me to get to 500 then start again so there is a better chance of iron being chelated from the liver rather than just the blood. Another thing is they said the HB can drop below 9 because I have already matured and I won't get facial deformities.in regards to PHT is that just thal minor or both? Should I be adding precautionary supplements? You guys are really helpful and I appreciate everything this board does.

Thank you all!

Andy Battaglia:
You can easily take zinc and copper to supplement anything that may be lost through chelation. PHT is a known danger in thal intermedia and major. I suspect from reported symptoms, that mild PHT is also common among older thal minors. As thals have reached higher ages, this has become more apparent as PHT and heart failure are found in thal majors with low iron loads. Precautions to avoid nitric oxide depletion and oxidation should be part of the thal regimen. These include supplements like L-arginine etc, vitamin E and magnesium. Letting Hb drop below 9 is not a good strategy, especially with your iron under control. There is a lot more to it than bone growth, your own quality of life being a main reason to stay above 9.

Treatment for thalassemia has advanced greatly over the past 10-15 years, as doctors begin to understand which strategies work best in maintaining health and quality of life. All doctors involved in treating thalassemia need to keep up on these advances, because too often we see patients know far more about treatment than their own doctors.

Lena:
I will second what Andy has said about Hb levels. To include it all in one phrase, I would say:

Try to maintain your ferritin around 100 and your Hb at 10-11.



Lena

Canadian_Family:
It is a standard practice in Canada to stop Exjade if ferritin reaches below 300. The doctors recommend a break from the exjade at that time since long term effects of exjade are unknown. The exjade normally begins after two to three months of break when the ferritin reaches between 500-800.

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