Discussion Forums > Thalassemia Major

a realy comprehansive article about thalassemia

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nice friend:
emedtv

--- Quote ---Severe Symptoms of Thalassemia
In more severe types of thalassemia, such as Cooley's anemia, symptoms may include:
 
Fatigue and weakness
Pale skin or jaundice (yellowing of the skin)
Protruding abdomen with enlarged spleen and liver
Dark urine
Abnormal facial bones and poor growth.
 
Infants who have the most severe type of alpha thalassemia (hydrops fetalis) generally die either before or soon after birth.
--- End quote ---

emedtv

--- Quote ---Other Treatments for Thalassemia
People with severe thalassemia are more likely to get infections that can make their anemia worse. Therefore, people living with thalassemia should get an annual flu shot and the pneumonia vaccine to help prevent infections. Also, taking folic acid supplements is important, as folic acid helps build red blood cells
--- End quote ---
emdicine

--- Quote --- Treatments and procedures

Blood transfusions - most common treatment for all thalassemias; provides healthy red blood cells
Chelation therapy - frequent blood transfusions cause iron to build up in the body. It has to be removed by medication before it causes damage to the heart and other organs.
Splenectomy - if the spleen is enlarged or contributing to the thalassemia it may be removed
Diet - Food rich in iron should be avoided. Vitamins C and E and folic acid are added as supplements.
Bone marrow transplant - provides the only cure for thalassemia. However, there are many risks involved, so it is usually reserved for severe cases.
New Research
Research is looking at a number of ways to treat different types of thalassemia.

In utero blood transfusion - Doctors give a baby a blood transfusion before birth to treat alpha thalassemia major.
Gene therapy - Researchers are trying to figure out how to correct or modify flawed genes to decrease or cure different types of thalassemia.
Hemoglobin F therapy - researchers have tried increasing the level of this type of hemoglobin but it has not had much effect on thalassemia.
Protein therapy - A protein (AHSP) has been discovered that helps regulate the amount of alpha protein in red blood cells. Researchers are now looking at using AHSP as a thalassemia treatment.
--- End quote ---

Bigg:
I found an article about hormones and sickle cell anemia and all these findings can be applied directly to thalassemia minor (not all of them) and major (probably all of them).

http://www.medscape.com/viewprogram/8569_pnt

I like this article a lot. They describe how the important hormones are affected by SCD.
What is important to me in this article is:


--- Quote ---Decreased synthesis of IGF-I might be secondary to a disturbed GH-IGF-I axis and/or undernutrition, probably due to the hypermetabolic status of these children.[18,25,26] Several studies have linked excessive caloric loss to elevated resting energy expenditure in children with SCD; this raised expenditure might result from elevated cardiac effort and more-rapid erythropoiesis and protein turnover.[23,27]
--- End quote ---
what basically means that you do not have growth factor because you are tired and you are tired because of erythropoiesis.
Now, after taking all these vitamins, resveratrol and all, my hemoglobin is 15,8 (it was 14,8 in May), so erythropoiesis is as crazy as always. This may also be the cause for me...


--- Quote ---2nd : told me to controle iron levels bcoze when iron stored in thyroid gland , the thyroid gland stop working   
        properly that effect's on growth very badly
--- End quote ---
Nice friend, this is probably not the case with me because my liver iron content is within normal range, but my blood iron level is still out of range high (two - three times), so is TIBC, so hypothetically, iron could be stored in thyroid gland and other, but is it possible to check thyroid gland iron content? Probably not... (biopsy?)
My hematologist says that this high blood iron level and high TIBC looks as if I was iron deficient, which is of course not true - it is because of this damned erythropoiesis.
I am getting concerned about this erythropoiesis, which cannot be stopped, and probably the only way to stop it would be to take hydroxyurea and induce fetal hemoglobin. Andy sugggested some time ago bone marrow biopsy to see if marrow is really hyperactive, but I will never convince my hematologist to do that (nobody will ever do this privately either) and based on the hemoglobin level, I can tell it is hyperactive anyway...
I am going to see my hematologist on Monday, so we'll see...
In the meantime the research went very well, so I will be prepared.

nice friend:
BEST of LUCK BIGG ... :thumbup
wating for your next post after visiting haemotologist ...

Kathy11:
Good morning to all.
It's good to read all these articles  it's informative, although I basically find it conflicted, each article I read differs .
I believe, it has something to do with the depletion of hormones ,that is because on a personal basis I feel that my health condition got worst as I am getting older.
Anyhow I wish once and for all the doctors get it right ,thus, will enhance all thals sufferers lives

Thank-you for all the efforts taken to allow such reading materials.


Remember [u]God does not make junk ."We are all  irreplaceable and unique in our own right"[/u]
Bigg I hope you get a good result from the doctor. good luck and again thank-you for your time.
Kathy

Bigg:
Another strange thing with me my blood results:
PDW (Platelet Distribution Width):    16,8 fl (6,1 - 11)              -> High
MPV (Mean Platelet Volume):    10,5 fl (5-10)              -> High
Platelet count: 308 thousands/ul (150-450)              -> Normal

These are relatively new blood parameters. Anybody has similar results?
What do they mean? I am getting confused ...
My hematologist is not gonna like it  :bat (another abnormality to diagnose  :puke).

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