New to the forum

Hi everyone. My name is Thoa and I'm new to the forum as you can see. I decided to join the forum in hopes to relate to other people with Thalassemia. A little about myself: I am 21 years old and I have E-Thalassemia. I get blood transfusions once a month. I recently got diagnosed with type 1 diabetes due to iron overload. I wasn't compliant with my desferals or exjade and diabetes is the consequence I now must deal with forever. I do regret the fact that I wasn't compliant with my medication and it is definitely an eye opener for me. I am greatful that my other organs didn't get damaged. I share this with you all because if anyone reading this isn't compliant with their medications, I beg of you to please start! Everyday I beat myself up thinking how dumb I was for not doing my chelations or taking the pill! Anyway, I want to say thank you in advance to everyone for posting and sharing your stories with me. I've always wanted to meet someone with Thalassemia, but since I've yet to meet someone, I have you all! =)

-Thoa

Hi Thoa,

to the family.

I'm glad you have realized the importance of chelation and now are in better position to avoid more consequences of iron overload.

Wishing you all the best for the future.

Hi Thoa and welcome,

What you have said is most important and I hope all patients pay attention. Diabetes in thals is directly related to iron overload in the pancreas and prevention is currently the only solution, because once the pancreatic cells are damaged, it is believed that it is not reversible. At this point, chelation can be of some help in controlling diabetes, but the damage has been done. I don't want to say this conclusively, because regeneration of tissue through natural methods may prove of some help. Milk thistle, IP6, L-arginine are some substances worthy of more research. IP6 may help prevent iron damage to the pancreas and it has also shown some potential in helping to control blood glucose levels. The most important thing for thals is controlling their iron levels. Chelation compliance is absolutely essential.

Thoa, where are you located? There may be thals in your area who you don't know.

Thank Sajid and Andy.

I'm from Hollywood, Florida. That's basically Miami.

I know the area. We have a member further up the east coast of Florida but I don't know if there is anyone closer to the Miami area.

I would strongly urge you to start taking the supplement, IP6, as studies have shown it may have some effect in helping to control blood glucose levels, along with being an iron chelation supplement and a powerful antioxidant. It is fairly cheap and can be found easily through online sources of supplements and probably even at your local natural foods stores.

Thank you Andy for your suggestion and quick response. I wll definitely look into IP6. I've never heard about it before. But as a little insight on my diabetes situaion, I think I'm doing quite well with keeping my Glucose levels in the right range. or so my endocrinologist tells me. So that is something I'm very happy about. Also, if you don't mind me asking, where are you from and are you thalassemic as well? And if you know, what ferritin levels are considered okay or good? What ferritin level is considered iron overload? When I was hospitalized 2 months ago from becoming ill and got diagnosed with diabetes, my levels were in the 13,000 range (or higher, I'm not quite sure) and now it's down to about 6000. I know that is still very high but it's a big improvement. I just want to know where I should be?

Hi,

I'm not thalassemic. I live in upstate New York (I did live in Melbourne, Florida for 6 years). I got involved with thal because the founder of this group, Lisa, was my best friend and I have carried on her legacy as best as I can. You can have full confidence that in spite of not having thal and my original connection to thal now being gone, that I have complete dedication and treat thals as my brothers and sisters.

The goal for all thals should be a ferritin under 1000. I know many whose ferritin is well under 1000 and the only way to get there is by strict chelation compliance. Don't ever get discouraged because I have seen people make huge adjustments in their ferritin levels by getting serious about chelation. There is a woman in our group who slacked and ended up in the hospital with congestive heart failure, which is a major killer of thals. By aggressively chelating and using a combination of Exjade and desferal, her ferritin is now under 1000 and she is doing quite well.

IP6 is also called phytic acid and is a member of the B family of vitamins. I was recently quite pleased to find out that when our member, Sharmin took her son to see one of the top thal specialists in the world, Dr Vichinsky, at Oakland Children's Hospital, that he was very happy to find that her son has been taking IP6 along with his other supplements, and that Vichinsky told her that these antioxidants have been a very important factor in protecting her son from iron damage, even though he has been on a too frequent transfusion regimen due to an autoantibody problem.

I am sorry to hear about your bestfriend Lisa. She has started something so wonderful and I'm extremely thankful she had you to carry it on. You are very knowledgeable and I'm gratelful for all that you are. Thank you so much for being such a wonderful person!

wow.. 6000 is still pretty far from 1000 but I am determined! If I can go from 13,000 to 6000, I believe I can go down to 1000 or lower! I'm so glad you told me about IP6. I will defnitely look into it and get my hands on it. I will keep you posted on my levels.
I hope you are having a wonderful weekend!