Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: diab on December 04, 2012, 03:50:23 PM
-
Hey Thals,
I would really appreciate your advise on this issue:
I managed to live a 'normal life' in spite of the fact that I am a major thal, however, I am fed up with my tiredness, I want to check out there in this world if someone tried something and worked for him healing this boring tiredness, unfortunately, it's affecting my social life everywhere!
My HB level (in average) is between 7-8, I take my blood transfusion every 2-3 weeks with around 750 ml each time.
I am well organized from the side of vitamin pills, Folic acid, L1 and Desferal.
My iron level stands on 774.
I would be very thankful if you advise any help!
-
Hey Thals,
I would really appreciate your advise on this issue:
I managed to live a 'normal life' in spite of the fact that I am a major thal, however, I am fed up with my tiredness, I want to check out there in this world if someone tried something and worked for him healing this boring tiredness, unfortunately, it's affecting my social life everywhere!
My HB level (in average) is between 7-8, I take my blood transfusion every 2-3 weeks with around 750 ml each time.
I am well organized from the side of vitamin pills, Folic acid, L1 and Desferal.
My iron level stands on 774.
I would be very thankful if you advise any help!
Hi diab,
That's normal. I'm a thal major, and I too face it. What's your age though?
But the miracle recently happened when I started using IP 6 a week back. I already feel a lot more active throughout all day and don't get tired as before. There are various additional uses of IP 6 and I recommend you to make that tablet a part of your daily regime and you'll notice the difference.
-P.
-
Diab,
Your Hb is too low. It should be kept above 9. You will feel much better and your health will also be better if you raise the pre-transfusion Hb to at least 9.
-
Diab,
Your Hb is too low. It should be kept above 9. You will feel much better and your health will also be better if you raise the pre-transfusion Hb to at least 9.
Yes. Another important reason I forgot to highlight.
-
Andy, I know that my HB is too low, I am trying to raise it since months with no success! can't find a way to raise it, maybe I need to mention that I have a special transfusion as my body has some antibodies.
Pratik, I am 26 years old, I don't really know what IP 6 means, but I'll look it up and test it for sure, thank you.
P.S. One more thing I forgot to highlight, I face a strong bone pain in my legs and hands.
-
Andy, I know that my HB is too low, I am trying to raise it since months with no success! can't find a way to raise it, maybe I need to mention that I have a special transfusion as my body has some antibodies.
Pratik, I am 26 years old, I don't really know what IP 6 means, but I'll look it up and test it for sure, thank you.
P.S. One more thing I forgot to highlight, I face a strong bone pain in my legs and hands.
Get a check for your Vitamin D/D3 levels. It's one of the main reasons for bone pain and tiredness as well.
Also I suggest good calcium with magnesium supplement. I take Osteocare (800 mg calcium + 350 mg magnesium + 10 mg zinc).
Also we have a nice topic on IP 6 and it's benefits here:
http://www.thalassemiapatientsandfriends.com/index.php/topic,1177.0.html
You can read it's benefits and order it online from below:
http://www.seacoast.com/ip6-gold-with-inositol/ip6-international/120-caps/p157
If you have any questions, do ask them.
-P.
-
Dear diab,, i'm a thal major too.. If i ever felt tired, i try to take a rest or just sleep, yeah kinda ridiculous isnt it? But that works for me.. Bcos if i forced myself to do something that needs extra energy, in the end i end up more exhausted than before, and make my hb decrease faster than usual.. I used to have blood transfusion every month, but thanks for the splenectomy in 2002, i didnt have my blood transfusion till 2011 and my hb still on the normal limit.. :)
-
Dear diab,, i'm a thal major too.. If i ever felt tired, i try to take a rest or just sleep, yeah kinda ridiculous isnt it? But that works for me.. Bcos if i forced myself to do something that needs extra energy, in the end i end up more exhausted than before, and make my hb decrease faster than usual.. I used to have blood transfusion every month, but thanks for the splenectomy in 2002, i didnt have my blood transfusion till 2011 and my hb still on the normal limit.. :)
How come?
Thal majors, even after splenectomy requires transfusion don't they?
-P.
-
How come?
Thal majors, even after splenectomy requires transfusion don't they?
-P.
Well, i had my splenectomy in 2002, then until 2011 i never had any blood transfusion, ever.. But in the middle of 2011, i checked my hb and it's low so my doctor suggested me to have blood transfusion again, but it lasted about 8 months.. So until now (from 2011), i just had 3 times blood transfusion, and it was only bcos my condition were so drop (i'm a med student, so i think that's one of the factor why i easily get tired these days.) yeah and i hope, my hb will stay on its normal limit so i dont need to have blood transfusion again.. Just hoping.. :)
-
Well, i had my splenectomy in 2002, then until 2011 i never had any blood transfusion, ever.. But in the middle of 2011, i checked my hb and it's low so my doctor suggested me to have blood transfusion again, but it lasted about 8 months.. So until now (from 2011), i just had 3 times blood transfusion, and it was only bcos my condition were so drop (i'm a med student, so i think that's one of the factor why i easily get tired these days.) yeah and i hope, my hb will stay on its normal limit so i dont need to have blood transfusion again.. Just hoping.. :)
How in the world is this possible unless I'm seeing a miracle person? :biggrin
Are you sure you're thal major and not intermedia?
Andy, your views?
-P.
-
It's very simple. The classification of thal intermedia is what causes the confusion. If a splenectomy can mostly eliminate transfusions, the patient is a transfusing intermedia (that is a very vague category). Many patients are diagnosed as majors because they require transfusions, but unlike a major, if they did not transfuse, their Hb level would still be high enough to survive, although with rather bad health. A true major would die if transfusions were stopped. This is actually very common because once a patient takes regular transfusions, many doctors will classify that patient as major, even though technically, their genotype would show intermedia. While a major might see some reduction in transfusion requirement after a splenectomy, it would not eliminate this need, as it can for many intermedia patients.
-
Yeah, i've been diagnosed as thal major since i was a baby.. A miracle, if i could say bcause after i had my splenectomy, i still hv another spleen (accessoris) , and bfore i had my surgery, the doctor didnt even know that i hv 2 spleens.. It is a miracle.. But, can thal major be a thal intermedia or what? I also didnt understand well about that..
-
Yeah, i've been diagnosed as thal major since i was a baby.. A miracle, if i could say bcause after i had my splenectomy, i still hv another spleen (accessoris) , and bfore i had my surgery, the doctor didnt even know that i hv 2 spleens.. It is a miracle.. But, can thal major be a thal intermedia or what? I also didnt understand well about that..
You most likely have thal intermedia but were classified as major because of frequent required transfusions if I understood Andy correctly.
-P.