Question for Andy...

Hello Andy, Emby, Hanumant Aashrit,

Andy,
I totally agree with the official recommendation that the food iron is inconsiderable and much less than the iron we take with our transfusions. Never have I taken into account the intaken food iron. If you chelate well, there is no matter at all about the iron rich food you take.
My diet has not affected my ferritin level either high or low. Ferritin is always connected to chelation.

Hanumant Aashrit,
thanks for your kind words. By bt you mean blood transfusion? If yes, I get one blood unit every 2 weeks.

Emby,
I am very touched by your trust in God. This is something I have noticed about the Muslims and I respect it. In Western world we have lost this touch. I am sure H wil be o.k since he has stopped exjade and his body comes back to normal. Be patient.
In my Thal Unit we take a lot of supplements, but I think you already know about them as Andy has mentioned them again and again.
No matter how high or low my HB is, I always feel the same. Since I was a kid, I have been feeling the same. That goes with ferritin, too.
As for H's ferritin, the lower the better, always within normal ranges of course. And  the MRI is to be done every year. Some doctors say every 2 years if the results are good. I do not agree, because if you do it each year and the results get worse, you can correct it by making stronger efforts  while in two years, you would have lost a year and then it is harder to correct it. (My personal opinion, anyway.)

Thank you Lena... ...we are told that there is a big reward in practicing on patience and especially so at that very moment when something happens, from the Quran that Allah is with the patient ones and Allah loves the patient ones. But we should not ask Allah for patience because that way we are asking to be inflicted with something cos you can only practice on patience when you ARE inflicted with something instead ask for Aafiyah, safety security and ease, in everything cos that way Allah will bring you out of that thing with safety security and ease..inshaAllah.
May Allah grant you Aafiyah always, ameen.
My boys too feel mostly the same with their Hb up/down though sometimes a little tired but it does not affect their day to day things...I feel more tired than them. And it is right that even at low ferritin
it would be even more important to take supplements but we are not advised that here. Just stay within the normal ranges and that's it. I agree with what you say about the check ups also.....this is all a learning process..take a lesson from it..understand...then move on..xx   

Thanks Lena. The normal ferritin level thalassemic is a new phenomenon. You are at a ferritin level where it would be easy to measure if dietary iron was a factor on ferritin level. It would appear that avoiding iron rich foods is of no value to thals whose Hb levels are maintained at a good level.

You are right, Andy about the normal ferritin thal. It may be new phenomenon but it is increased little by little. That is why doctors should study this new entry in thal and take into account that there are cases where chelators, when given in same dosage, may be toxic. Desferal has started to give out cases of macula, if I use the right medical term. This is an eye problem which leads to blindness. This is a problem that emerges after long usage of desferal. I mean there are problems that come out when ferritin is low and these have not yet been studied. We have stepped however to a new thalassemia era and this is to be considered.

Hi Lena,

Thanks for the reply..

Lena....with H's ferritin at about 300 now, and given what has happened with the Exjade, what do you think would be best for him in terms of chelation? He is in recovery and may take a while so might not take any chelators for a couple of weeks.

Emby,

we had a seminar in our Thal Unit yesterday and doctors from other Units, too, were invited. Normal ferritin level was said by all to be below 200 and LIC<3 (although our doctor says 1,5), T2* heart and liver to be >20. If you have not reached this level, you are not to slow down at all. Hepatologists said that whether you have Hepatitis C or not, if your liver iron is above normal you are at risk to get liver cancer in a number of years. This is a possibility to be considered. These are the most important statements I heard yesterday.
So, as you realise one is not to relax. My guess for H is to proceed with a combination therapy, ferriprox and desferal together. Has he done an MRI? could you care to write the T2* score for heart and liver as well as the LIC score?

Sorry..what is LIC?

Liver iron concentration.

Thank you Andy

2012:  T2* Heart  58ms  
          T2* Liver    2.4ms  (2010 was 2.1ms)

InshaALLAH will find out LIC score

Dr has said that H will not given chelation for a couple of months...

His scores are quite good at present. Hopefully the break in chelation won't be difficult to overcome once chelation resumes. In the mean time, make sure he is drinking tea regularly. Hot tea. Cold tea. Whichever he prefers.

Emby,

T2*H seems high enough and that's good. T2*L is a moderate iron liver burden. Here are the rates:

Liver    T2* >19,1   normal iron burden                           
                 9,1-19   successful chelation
                  4,1-9    mild iron burden
                   1,6-4   moderate iron burden
                    <1,6   heavy iron burden

Heart   T2* > 22    normal iron burden
                 14-21   mild iron burden
                   8-14   moderate iron burden
                    <8     heavy iron burden

LIC       <1,5     normal iron burden
            1,5-2,9  successful chelation
             3-6,9    mild iron burden
             7-13,9    moderate iron burden
             >14       heavy iron burden

Emby,

Was the liver scan a Ferriscan? If so, the readings are adjusted to coincide with the dry LIC, so a low score is better.