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Date of last update: 10/12/2017.

Forum Name: Hematology Topics

Question: thalassemia intermediate?

 missunique2u - Sat Aug 11, 2007 2:00 pm

I'm 22yrs old and female - I have thalassemia intermediate - I have had sinus surgery due to repeated infections and a tonsilestomy due to parial tonsil abseces , and stomach surgery to remove a 4 1/2 inch piece of damaged lower intestin. My heart and speen and several other organs are enlarged. I have asthma and heart palpitations, along with a lowered immune system and have reciently started to lose hearing in my right ear, coinsiding with a pea sized lump behind my ear. my question is my doctors have told me that this problem with my oxegin levels being so low all the time is slowly starving my major organs......they say there is no real way to determine how long I will be able to surive with thalassemia intermedia, so I assume my symptoms will continue to get worse as they just treat the minor issues but is there any way to treat thalassemia itself and prevent it from developing into the third stage when I get older? And what is the expected life span with some one with my kind of problem?
 Dr. Chan Lowe - Fri Aug 24, 2007 4:50 pm

User avatar Hi Missunique2u,

Thalassemia intermediate patients often can live a normal lifespan. As the name implies it is intermediate between Beta thalassemia minor and Beta thalassemia major.

The typical treatment for thal. intermediate is to do occasional blood transfusions and
chelation of the excess iron to prevent iron toxicity. Unlike thal. major which is transfusion dependent, thal. intermediate patients may not need as many transfusions. Often they are done only when times of increased bone marrow stress occur, such as during an infection or when increased production is needed and it is important to have good oxygen delivery such as in pregnancy.

If you are developing end organ damage you may need to have more frequent blood transfusions. I would advise you to see a hematologist to help manage your condition appropriately.

Best wishes.
 missunique2u - Fri Aug 24, 2007 6:01 pm

I appreciate your response It is so rare that any one I talk to actually knows what Thalassemia intermediate is. None the less you have confirmed my suspiciouns that my current hemotolagist isn't qualified enough to handle my disorder properly. I have mentioned to her that I feel like it is time to start blood transfusions due to the downward spirial of my health in the last 2 years and she has insisted that I wait till the last possible moment to start transfusions but I don't want that last moment to be my last. So thanks, I will seek out a new hemotolagist that may know more about this kind of disorder. Hopefully I will be able to begin treatment soon and be back on the road to a better more active lifestyle.
 Dr. Chan Lowe - Fri Aug 24, 2007 6:23 pm

User avatar Transferring your care or seeking a second opinion is always reasonable if you feel you are not getting appropriate care.

Please do not take my comments as absolute truth. I am not a hematologist so I would most definitely defer to the recommendations of a hematologist. It does seem to me that if you are developing end organ damage transfusions may be in order, though.

Best wishes.
 ma_girl - Thu Sep 20, 2007 3:34 pm

Hello missunique2u,

Thal (intermedia) is a manageable condition. You might want to keep a check of your Hemoglobin levels. If your Hb levels are low, you might need transfusion. With age, this usually helps.

Iron through Food
Also, you might want to make sure the food you eat does NOT contain a lot of Iron. Thal(Intermedia) are known for absorbing a lot of Iron from the food in the gut. Due to this your Iron levels might go high and you might need to start Iron Chelation Therapy, because high iron will start damaging your organs

What is your spleen size? I personally know a Thal(Intermedia) who in her late life started Blood transfusion and says that due to this, she is leading a better life

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