Discussion Forums > Thalassemia Major

Hi, I'm new to this forum

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Linda528:
Hi, Andy
Thanks for the information on the foundation. I will have my hubby take a look at that. We actually have donated to Cooley's but I'm not sure if Chris has checked it out or not. We now have insurance through the military and I have to see the hematologists on base. The bad thing about it is I can't see any drs. off-base unless they don't have that kind of specialty on base. For a year now I haven't been able to get up to 7. I have been in the upper range of 5's and 6's. We just aim for 7 because I can function really good on it. Being in the lower 4's, I tend to have this fatique and feeling like I'm going to pass out feeling. My bro is stubborn and he doesn't want any treatment what so ever :(   I will look more into finding how much iron I actually have. I would love to see a hematologist that are very familiar with thal. I think I'm the only one here on this base that has thal because when I came in last Aug. (this is our first station) everyone was so curious and excited to see something new. I had so many drs. and students come and look/talk to me when I had my first transfusion here. Oh I live in FWB, Florida (pandhandle). I forgot to mention I also have the Hemoglobin E.

Andy Battaglia:
Linda,

You may be able to get around the on base requirement because it is certain they do not have a thal specialist, and especially any doctor familair with HbE beta thal. I would suggest talking with Eileen Scott and seeing what she has to say about this and also where you can go for a consultation in the south. To be honest, most thal specialists would have you transfusing far more than you do because your hemoglobin level is so low. Your brother should also be in a treatment program. As intermedias get older, many health issues do manifest and most can be avoided with proper treatment.

Linda528:
Hi, sorry that I haven't reply back. I've been feeling down this week. I just had my appt today and my blood count is 6.0. My dr. want to transfused me again since I'm having shortness or breath and chest pains. I refused to have it done this weekend so I'm having to go in monday for a recheck. I really don't want another transfusion because I just had one late March. My dr. was talking to a Colonel over in walter hall (sp?) in San Antonio and he was saying for me to possibly have a bone marrow transplant. Does anyone know anything about that at all? Will it help?  Then she was saying maybe take the spleen out. I have no idea what to do or think.  My ferritun is 1006 so exjade is being ordered for me now. I have to stick with military facilities or I will have to copay so that's why we're choosing to go to San Antonio vs Birmingham.

Narendra:
Hello Linda,


--- Quote ---I just had my appt today and my blood count is 6.0. My dr. want to transfused me again since I'm having shortness or breath and chest pains. I refused to have it done this weekend so I'm having to go in monday for a recheck. I really don't want another transfusion because I just had one late March.
--- End quote ---

I think if you are having issues with low hemoglobin, you might want to consider blood transfusion or you might want to try and get some way (Hydroxy or similar hemoglobin inducers) to keep your HB levels high.


--- Quote ---My dr. was talking to a Colonel over in walter hall (sp?) in San Antonio and he was saying for me to possibly have a bone marrow transplant. Does anyone know anything about that at all? Will it help?  Then she was saying maybe take the spleen out. I have no idea what to do or think.  My ferritun is 1006 so exjade is being ordered for me now. I have to stick with military facilities or I will have to copay so that's why we're choosing to go to San Antonio vs Birmingham.
--- End quote ---

A bone marrow transplant is a risky option and it is usually for patients who have very few options like cancer. If you bone marrow is producing some red blood cells, i don't think Bone marrow transplant would be a good option for you.

You mention about taking out the spleen. Do you know how enlarged in your spleen? There are some thal(intermedia) and some thal(major) who have got their spleen taken out and have seen a drop in transfusion requirement but again removing the spleen also has other effects and all options need to be considered carefully.

You ferritin levels are a little high. Thalassemia(Major) are asked to start chelation when their levels hit around 1000. As you mention, Exjade is one iron chelator (removal) medicine, which you can start and you might also want to consider drinking tea with your diet to reduce iron absorption through the gut.

As Andy mentioned earlier, your brother also needs to do some sort of treatment plan for his intermedia. As he grows older, he might face more problems are intermedia's tend to have more issues.

Canadian_Family:
Hi Linda,

I saw your post and I think the doctors you are consulting have very little to no knowledge about thalassemia. Bone Marrow is not an option for you, it is extremely risky with life threatening possibility. I strongly recommend (as stated by Andy) that you should seek a thalassemia specialist. I cannot imagine the base would be so restrictive if it is a matter of person's health.

You should contact Cooley's Anemia for consultation and referral to the doctor. Your blood requiement seems to be increasing and should be looked at by thal specialist. I don't want to speculate with other options like removing the spleen unless you have been examined.

Your ferritin level is in 1000s which is not bad (I don't know why talk about exjade at this level). You should be having a ferriscan to determine the iron accumulation in your liver.

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