Ferritin too low?

Hello everyone, I was hoping for some advice on my latest situation. My ferritin is currently at the lowest it has ever been, 390, and I have been advised to stop all ExJade until I go back over 500. The reasoning behind this is that the Exjade will do nothing for me, in terms of extracting iron from the liver, if my ferritin is so low. However, I asked if a maintenance dose of 1 pill a day would be good. So what do you all think? I worry that without taking Exjade the some iron may accumulate in the liver. My doctor assures that this won't be the case.

Thanks!

Thoughts?

Hi,

It basically depends upon your doctor's opinion,one of our members Lena keeps her ferritin around 100 but she never stops chelating,on the other hand she is not using Exjade as far as i remember,she is on desferal and L1,so may be your doctor is saying so because of exjade.one thing you can do is keep a check on your ferritin level and as soon as it goes above 500,start taking exjade.

Hi Apollo,

I have just read your post.

Zaini is right. I keep my ferritin around 100 and though I am on Ferriprox and Desferal combination therapy, there are other thals in my Unit who are on Ferriprox/Exjade combination therapy or just Exjade. Our doctors do not advise us to stop chelate, not even when our ferritin drops under 100. I know a guy whose ferritin is around 30 and he keeps on chelating with Ferriprox and desferal. The idea is that one should not stop altogether because this can cause a deterioration and an iron accumulation. So in this case, the only thing you can do is slow down in your chelation therapy although I can tell we are not advised to do that either.

Lena

Lena I read the normal range of ferriten level is 10 to 291 . Optimal levels are 70 for adult females. You're at 300 
Could I please ask about how you're managing the Ineffective ErythropoIesis and hemolysis?
Is everything great as well?

Sorry your ferritin is 100

Apollo,

As long as liver and kidney monitoring is regular, there is no reason to not carry a lower ferritin level. The old levels of 1000 and 500 have been discarded by doctors who now realize that any iron loading is too much and the ferritin goal is normal when possible.

Note to Love and Prayers. the best way to control Ineffective ErythropoIesis is by maintaining a hemoglobin level that is always above 9-9.5.

That's what I thought too Andy but somehow when ever people talk about transfusion and chelation being handled correctly they mention I.e and hemolysis as added problems  that need to be dealt with. So what about hemolysis now that the I.e is out of the way as well?

Hemolysis will occur with any transfused blood, so the goal is to slow it as much as possible. Again, keeping Hb up above 9 is a key. Proper blood matching is also essential in avoiding the antibody reactions that cause sudden hemolysis. Use of antioxidants is also important.

What about L-glutamine?

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

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.

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.

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!

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.

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

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.