An Update from a Thal Intermedia sufferer...

Seven years ago , I went into a procedure of using the chord blood from my son during his birth... Everything went well for 6 years not until recently...

Latest update on my health:

1.)  The chord blood from my son helped raise my hemoglobin levels to near normal... around 10-11 for about 6 years in normal conditions.  But it did not have a permanent healing effect because in serious and stressful situations, like the time I've suffered from Dengue fever last December 2013 my hemoglobin dropped together with my platelet levels so I had to undergo yet another round of transfusions... I've survived and here I am posting again.... A Hema doctor once told me that chord blood from the same blood genomes often have the same characteristics... In that case my son's chord blood came from me too since I've carried him so most likely a thal gene there is present. So, it's true that chord blood is a more effective treatment if it came from a healthy blood donor.
2.)  My ferritin levels surged up to 2000... Quite a danger level...  So I wasn't spared from Iron chelation drugs.  So its a myth that intermedias will not suffer the same way as majors do...
3.)  I had my gall bladder removed last January 2014, because of the formation of hemolyzed blood galll stones... I had around 4 of them in my gall bladder and my gall bladder suffered from severe infection so the solution is to remove it permanently from my system  after the infection was controlled.
4.)  My liver is inflamed maybe due to iron overload but I've undergone antibiotics and I'm already taking iron chelation drugs so I hope it gets manageable soon.
5.)  I have borderline diabetes as another complication... I hope I could reach the age of 40... I'm still 32 so I'll update you guys again some years later if I do any better...
6.)  The only good news is that My Son is still showing negative signs of inheriting the Thal gene... So I hope the same will be true for the next years of tests that will come.

Please pray for me... and all of you are always remembered even if we are seas apart...  

It seems your problems are most likely all related to your iron load. It would be advised that you have a liver MRI scan, preferably a Ferriscan to measure your liver iron load, as ferritin is not an accurate measure at all for thal intermedia. This is essential so that you can learn the true load and address it through chelation. I am certain you need more chelation than you have had and this is why you are seeing these problems. There is no reason you can't live a much longer life. You just need to address the iron load. Last year I met an intermedia who is in  his 60's. Please do not feel that your life has a short time limit attached. It is up to you and what you need to do is address your iorn load. Which chelator have you used?

Hi alnahrahmea,

You may not remember me, but I remember you (and Andy! ;)).

I just wanted to say that I'm sorry you're struggling and to also say that you're not alone and that even though you are seeing some health issues, things can still look up.

The iron overload and its side effects is a reality that I am facing myself as someone who has an intermediate form of thalassemia from the alpha side (hemoglobin H) so I can empathize with you.  I, too, will need to chelate and chelate soon.  But because I'm an alpha, there isn't really much research done (yet) on how well chelating goes with alpha thals aside from 'it can be done'.

I know it can be stressful and at times frightening to see a decline in health, but there are ways to address the changes that may happen.  Diabetes for example - especially borderline - can be partially managed/helped by dietary changes and careful monitoring.  I'm developing insulin resistance myself (probably due to the iron overload as diabetes is not a family thing) and my goal is to use diet to help me manage it the best I can and so far, it's mostly working.

Andy is right; if you have iron overload going on, if it's at all possible, get a Ferriscan done or a liver MRI.  Blood iron levels aren't always the most accurate way to measure.  Also, a cardiovascular workup is a good idea, too, when iron overload comes into play.

We have a lot ahead of us and it can feel really overwhelming at times and frustrating, but we can do it!