Hi Thalpal

About Hb, usually, if and when, sometimes, I've low Hb, like 8 or so (in very rare cases), my legs and joints do pain, which after TX, on the next day of it, are much relieved. So yes I do believe there is some connection of pain due to Hb levels being low.

-P.

This is the same in my case

I would not suggest splenectomy yet. It is large, but not dangerously so. I would say give i some time and also talk to the doctor about the antibody reaction that cause the high rate of blood turnover. We have also previously been told of some herbal remedy for spleen size. Have you tried anything like that yet?

Hi Andy,
i am still in dilemma about spleenectomy.
My blood transfusion volume of last 3 months is exceeding 20ml/kg/month . Approx around 23ml/kg/month.
This is causing iron overload , inspite of having combo therapy of desferal (50 vials per month) and asunra (40mg/kg), the last ferritin report came at 7590 Vs 6490.

Though my health is improving and m feeling well after the six months of desferal and asunra combo therapy

My abdomen area is quiet enlarged and causing me trouble in routine.

In addition , Can vitamin E cause weight gain? i gained around 4-5 kgs after starting GNC Vitamin E ., though i like the weight gain it make desferal prick smooth and it is more convenient now (due to more muscle at thigh) but abdomen area get enlarged after starting it.

Plz guide on spleenectomy

Regardless of how much blood you will need, you should strive to keep your Hb above 9.5 at all times. This is actually the best thing to counter hypersplenism. Splenectomy should be the last resort, as there are long term problems associated with splenectomy. For some perspective on how big a spleen can get before splenectomy is the course of action, Nur's was 25 cm when it was removed. Don't rush into a decision on splenectomy.
Vitamin E can help one gain weight if one is deficient in vitamin E, and almost all thals tested are deficient. I do not believe it aids weight gain when levels are sufficient.
Keep chelating and don't be concerned about single ferritin readings. Be confident that you are on the right course and iron is being removed from your organs.

Hi D,

Sorry to hear that.

But gaining weight is such a beautiful thing. :D

I'm doing weight training these days (at home though) to gain weight specially and build a good physique. And I feel great after working out. I hope you curb these problems soon. 

-P.

Regardless of how much blood you will need, you should strive to keep your Hb above 9.5 at all times. This is actually the best thing to counter hypersplenism. Splenectomy should be the last resort, as there are long term problems associated with splenectomy. For some perspective on how big a spleen can get before splenectomy is the course of action, Nur's was 25 cm when it was removed. Don't rush into a decision on splenectomy.
Vitamin E can help one gain weight if one is deficient in vitamin E, and almost all thals tested are deficient. I do not believe it aids weight gain when levels are sufficient.
Keep chelating and don't be concerned about single ferritin readings. Be confident that you are on the right course and iron is being removed from your organs.

But Hypertransfusion lead to more RBCs destruction in the spleen even after maintaining the pre bt hb at 9.5gms.

Can Vitamin E or excess dosage be harmful to Liver?

Above all , i am getting confident, strong and strength full day by day. Iron is definitely removed by combo. therapy and organs are becoming clearer. Body is giving signs of it.

The only problem is Hyper transfusion because it require hyper chelation, even there are others problem also associated with transfusions like HCV .. etc.
Can you tell me when i will off from Desferal? or Single chelator (Asunra) can be sufficient to maintain iron balance in my case due to this huge volume of blood transfusion, when iron come below 1000ng/ml?

Can two large units (total approx 650 ml , RCC) be transfused at 9.5gm hb? Generally my hb increases by 2.4 gm/dL after transfusion of 2 large units.

It put a load on heart when hb is 9.5gm/dl?

Moreover,
I have joined GYM, and it's exactly complete 1 month.

I use some machines at GYM but without Weight. The core to be considered , the most important part, is the DIET.
Pratik,
No one can believe that our Gujarati diet , pure vegetarian, can be so much qualitative. Without increase the quantity of food , it can be more nutritious.
I am on such diet since 2009 and it is helping me when i started combo therapy to reduce iron level.

Moreover,
I have joined GYM, and it's exactly complete 1 month.

I use some machines at GYM but without Weight. The core to be considered , the most important part, is the DIET.
Pratik,
No one can believe that our Gujarati diet , pure vegetarian, can be so much qualitative. Without increase the quantity of food , it can be more nutritious.
I am on such diet since 2009 and it is helping me when i started combo therapy to reduce iron level.

Damn D, you hided that from us. 

I plan on hitting the Gym in near future soon enough, gotta shape a nice body.

And yes, diet is most important and that's why I'm trying to max out protein intake and calories and lower the carbs. That's the very reason I've ordered Whey protein powder.

Well, as you're going to Gym, why not lifting the weights? Or that your trainer told no unless he prepares you for that (as normally Gym trainers don't recommend to lift weight until they make our body suit to it with training for 1-2 months). Your muscles can only expand when you train them.

When you lift weight, muscle breakdown occurs, and so more and more cells are transported or generated at that site to form a new tissue and that is how the muscle mass keeps on increasing. I was very fancy about exercise and gym since childhood.

-P.

Can you tell me when i will off from Desferal? or Single chelator (Asunra) can be sufficient to maintain iron balance in my case due to this huge volume of blood transfusion, when iron come below 1000ng/ml?

Dharmesh - Once the levels go below 1000 you can go on a single chelator as many thals have done. There are thals who had to lower the Exjade dose once their ferritin levels were in the range of 500. Until then combination therapy will greatly help you get rid of the iron from your body.

Damn D, you hided that from us. 

I plan on hitting the Gym in near future soon enough, gotta shape a nice body.

And yes, diet is most important and that's why I'm trying to max out protein intake and calories and lower the carbs. That's the very reason I've ordered Whey protein powder.

Well, as you're going to Gym, why not lifting the weights? Or that your trainer told no unless he prepares you for that (as normally Gym trainers don't recommend to lift weight until they make our body suit to it with training for 1-2 months). Your muscles can only expand when you train them.

When you lift weight, muscle breakdown occurs, and so more and more cells are transported or generated at that site to form a new tissue and that is how the muscle mass keeps on increasing. I was very fancy about exercise and gym since childhood.

-P.

Oh and I also forgot to mention, "the increased weight" that you mentioned is likely to be result of Gym/weight training.

-P.

Dharmesh - Once the levels go below 1000 you can go on a single chelator as many thals have done. There are thals who had to lower the Exjade dose once their ferritin levels were in the range of 500. Until then combination therapy will greatly help you get rid of the iron from your body.

Hello Narendra,
Thanks for the reply.
I agree with you and when Fe is below 1000 single chelator will be enough.

But actually those who are on single chelator, none of them would be taking 4 large units every month like me.

All the Thals to whom i know personally are on mostly on 2 small units of blood every month, also they are spelenectomised and i am not, they have achieved the goal of Fe <1000ng/ml

Do you think that Asunra alone can remove iron increased by 4 large(approx volume 1250 ml) units per month. This is my point to be considered.

Thanks.

Damn D, you hided that from us. 

I plan on hitting the Gym in near future soon enough, gotta shape a nice body.

And yes, diet is most important and that's why I'm trying to max out protein intake and calories and lower the carbs. That's the very reason I've ordered Whey protein powder.

Well, as you're going to Gym, why not lifting the weights? Or that your trainer told no unless he prepares you for that (as normally Gym trainers don't recommend to lift weight until they make our body suit to it with training for 1-2 months). Your muscles can only expand when you train them.

When you lift weight, muscle breakdown occurs, and so more and more cells are transported or generated at that site to form a new tissue and that is how the muscle mass keeps on increasing. I was very fancy about exercise and gym since childhood.

-P.

Hey Dear Pratik,
It was my plan since 2009 to join the Gym which became fact in Dec.2012.
When my body start giving me signs , then i thought to join it. And i got these signs after 6 months of adding desferal with Asunra. My diet is also heavy since 2009 but only natural milk, cereal protein(you can get the recepe of the diet) and not any Whey Protein (I think it is bull shit, i am getting result without it and natural qualititive diet can fetch the desired result). I never cut carbo. in my diet, it is the key to Gym, and my result is seen by you.
Machines have atlest 5 kgs weight by default, so i don't add more weight to it as my body don't permit

Oh and I also forgot to mention, "the increased weight" that you mentioned is likely to be result of Gym/weight training.

-P.

No
The reason is God's blessing, diet aided by reduction in body iron and Combo therapy

When you lift weight, muscle breakdown occurs, and so more and more cells are transported or generated at that site to form a new tissue and that is how the muscle mass keeps on increasing. I was very fancy about exercise and gym since childhood.

-P.

I always try harder to ensure that muscle breakdown happenes never. When u lift weight beyond your capacity , any exercise done in speed including walking in garden or trade mill, or your carbo. intake is improper, or all of the above then there will be muscle breakdown.
The process of forming of tissues called metabolism and it happen when iron is under control and qualititive diet is taken full of Carbo, protein , fat, minerals, vitamins, water and above all much oxygen.

This is the same in my case

Last time the pain was not there even when my pre bt hb dropped to 7.6gm/dL.

I think the iron is decreasing.