I want to know a to z about hemoglobin e beta thalassemia (intermedia).

Hi, lets move to live better to better. I don't sure about living best.
Good wishes for all of you.
  I am hemoglobin e beta thalassemia and 28 yrs male from Bangladesh. My hemoglobin eletrophoresis report is hb-a 7.2%, hb-f 35.7%, hb-e 57.1%. My average hemoglobin is 8.5g/dl to 10.5g/dl. Recently my hb is 9.2g/dl  and serum ferritin level is 95.58ng/ml(method CMIA).
 I had a long period fever, allergic symptoms, large spleen, jaundice etc at 13 yrs old. I was diagonised hemolytic anemia(hereditary?) and transfused one bag of blood. After that i am under only homeo treatment. At 18 yrs i can know about thalassemia and diagonised as hb e beta thal. Till then I'm taking folic acid and homeo medicine regularly. I also take vitamin e, calcium cabonate (with vitamin d3, manganese,magnesium, cooper) and anti-depressed drug flupentixol and melitracen (combined) sometimes. Now my problems are tiredness, burning sensation of whole body and depression.
 I passed H.S.C irregularly and now i have a little pharmacy.
I didn't go to any hemologist or consultent till. But have a plan to go a consultant of Bangladesh thalassemia foundation soon. Before that i shall like to know about my diseases, treatment, lifestyle etc or what i should  do now from all of your advises, direction and kindness. Plz help me by proper information for me. Thank you for reading and sorry for any errors of language.(i am not so good at English.)   
   sed drug flupentixol and melitracen (combined) sometimes. Now my problems are tiredness, burning sensation of whole body and depression.
 I passed H.S.C irregularly and now i have a little pharmacy.
I didn't go to any hemologist or consultent till. But have a plan to go a consultant of Bangladesh thalassemia foundation soon. Before that i shall like to know about my diseases, treatment, lifestyle etc or what i should  do now from all of your advises, direction and kindness. Plz help me by proper information for me. Thank you for reading and sorry for any errors of language.(i am not so good at English.)   
   

Hello welcome on board.
We should wait for others as I have no idea about this type of thalassemia. Please do not be shy about your English. I can understand you.
Warmest wishes, -Dori

Hi Kishore,

The classification of thalassemia that you have is HbE beta thalassemia. It is extremely common in Bangladesh and the eastern part of India. Technically, this would be considered an intermedia thalassemia because you don't regularly transfuse. You are doing many of the things you need to do with the supplements you are using. I would say your vitamin D level should be tested to make sure this is not contributing to your depression. If the level of D is not at least 35, I would suggest taking a higher dose. It took me, a non-thal, 5000 IU daily of D to get my level up over 35 and I feel much better emotionally and less prone to winter depression (I live in the US in a northern zone where we cannot get enough sun most of the year). I do not like hearing people are on anti-depressants because they cure nothing and only give some relief while using them, and mostly by making people not care so much about things that they get depressed. I encourage you to slowly get off these drugs, as the side effects are not good and may be causing some of your symptoms. But do not immediately stop any anti-depressant or anti-anxiety drugs because they are physically addictive drugs. Slowly weaning from these drugs is the best way to get off them. Low levels of vitamin D (extremely common in thals) should always be investigated before resorting to anti-depressants. Many people could find relief from depression just by correcting D levels. Optimal levels are over 50. Never take iron supplements. These can only do you harm. With your low Hb, your body will naturally absorb more iron than you need, so drinking tea with meals is advised, as it helps reduce the amount of iron absorbed. It is also a good antioxidant which can help reduce some of the problems caused by the defective red blood cells produced in thalassemia.

A good diet is important. If you can get wheatgrass tablets, try them for at least 6 months to see if they can raise your HbF even more. Because your HbF level is already high, there is a good chance that wheatgrass can have some positive value for you.

Welcome to this forum Kishore!
Dont worry about your English....I am sure our bangla would be bad too...hehehehe
There are few things I can manage in bangla and will share that with you if given a chance!

You have come to the right place to know all you want...and Andy is the best person to seek for your questions. And so many of the senior members will help you too...
I hope your symptoms are taken care of soon...

All the best for your endeavors.
Madhavi

Hi friends ! Sorry for late.
 Special thanks to Andy for your useful advices.
   Andy, Is it essential  to check my vitamin d 25 hydroxy level? Is it safe taking 20000 iu vit. D by oral or intramusculer without checking? I am taking tea after meal. I also take vitamin e 200 once daily. Gradualy i take antydepression in low dose and long intervals.
 Andy, in Bangladesh how can i collect wheatgrass ? I have searched it but can not collect. Can i get it from India?   For alternative can i cultivate it in our home? Then how can i take it?
 Thanks to Madhavi for encourage me about my English. Plz Madhavi  tell me how can i get your bangla  articles about thal.
   At last thanks to Dry, first replyer of this topic for assured me. I hope to know about your disease later.
  Good bye!

I would not recommend a dose of vitamin D as high as 20,000 IU at once unless you know your D level. Wheatgrass tablets are easily available in India, but I don't know about Bangladesh. It can be grown at home and is very nutritious, but the taste is not so great - tastes like freshly cut grass.

You can check these threads for more information on growing.
http://www.thalassemiapatientsandfriends.com/index.php/topic,1939.msg16265.html#msg16265
http://www.thalassemiapatientsandfriends.com/index.php/topic,94.msg422.html#msg422

Hi  kishore,

Welcome!!

Thanks for sharing your condition. I am a father of 5yrs boy with E-beta thal. My son's Hb is also lie between 8 to9 g/dl and currently we are giving him hydrea (Hydroxy urea).
I have discussed with his doctor about the wheatgrass therapy, and he suggested me to grow wheatgrass at home.when the wheatgrass lenth will be aroud 6-8 inch take them and make juice.

I have not tryed so far.

dontworry about english, I can understand your bangla too.
I am from West Bengal (Eastern part of India)

regards,
Dip