Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: jknt on October 14, 2016, 12:03:29 AM
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Hello everyone ,
I am John 28 years old and i have thalassemia intermedia , i wanted to post my latest tests in hope that somebody has any advice to give.
WBC : 22150 , RBC 4140000 , HB 8.3 , HT 27.2 , MCV 65.7 , MCH 20 , MCHC 30.5 , PLT 804000.
TSH 3.74 , FT4 1.36.
I've also had spleen removal when i was young. Generally i feel ok but at times i feel very tired , one of the problems i deal with is that my skin is kinda yellow also my eyes and it makes me unconfortable , maybe i could do something to fix or help it?
I do excercise although i can't run for too long but i manage to do simple stuff like push ups or pull ups etc.
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Hi John,
Do you transfuse? The yellowing is usually caused by bilirubin, which is released on the breakdown of red blood cells. You may be able to have some effect on this by making sure your body has the sufficient nutrients to build good quality red blood cells. For starters, I would suggest L-methylfolate, magnesium, and wheatgrass tabs.
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No , i have never transfused. Ok thanks , maybe you know the dosage of these supplements that i should take to have effect?
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L-methylfolate 2-5 mg daily
Magnesium 500 mg daily. If you have restless legs at night, take it before going to bed.
Wheatgrass tablets. Buy organic only and follow the instructions on the label.
If you don't get much sunshine, you probably need vitamin D, too. Raising the level can help with tiredness and lack of energy, and even helps with depression. If your ethnic heritage is from a southern climate, like Mediterranean or Asian, 5000 IU D3 daily. If northern heritage, 2000-5000 IU daily.
Also, check the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,5190.msg48860.html#msg48860 for more info.
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Hello Andy ,
I started following your advice for a little more than a month now. I do feel a little better although i haven't started taking L-methylfolate yet.
Few things i wanted to ask : Is there any chance these supplements have any negative effects on me ?
Also i started eating alot of fruits , typical day would be 2 bananas , orange juice and apple + pear. Any chance i shouldn't do that or should reduce the frequency ?
Last i occasionally eat red meat , not too frequently , should i completely cut it from my diet ?
my last tests :
WBC 13790 , RBC 3580000 , HB 7.4 , HT : 25.7 , MCV 71.8 , MCH 20.7 , MCHC 28.8 , PLT 543000 , RDW-CV 27.7 .
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In general, the supplements are safe in the doses suggested. Once in a while, someone has a mild reaction to various supplements. Sometimes a different brand will work better and once in a while someone just can't take certain supplements, but that isn't common at all. The fruits and vegetables are great. The high iron content of red meat does mean non-transfusing patients should minimize its consumption.
The drug Luspatercept, which is currently in trials, may eventually solve your low Hb problem. Regardless of what Phase 3 trials show, the Phase 2 trials showed it would be quite valuable for intermedia patients.
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Hi everyone
My self premdas pawar from India Maharashtra state (Mumbai),I recently joined this forum . My son, sumit 9 years old suffering from thalassemia, i would like to clarify my doubts about his thalassemia severeness (status) and is management. Thank you all
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Hi everyone
My self premdas pawar from India Maharashtra state (Mumbai),I recently joined this forum . My son, sumit 9 years old suffering from thalassemia, i would like to clarify my doubts about his thalassemia severeness (status) and is management. Thank you all
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Hello Andy sir,
My son Sumit, now 9 years old diagnosed with thalassemia at the age of 6 month. I would like to conform the thalassemia status with the help blood test which done at the age of 6 month, are as follows
1) CBC Report:
Hb 7.48
RBC 3.74
PCV 25.4
MCV 67.91
MCH 20
MCHC 29.45
PLATELAT 2.51
WBC 18
RDW 27.9
NEUTROPHIL 60
LYMPHOCYTES 35
EOSINOPHILS 3
MONOCYTES 2
BASOPHILS 0
MPV 6.42
RETICULOCYTE COUNT 3.6
FERRITIN 169
IRON
TIBC 356
TRANSFERIN SATURATION 47.47
LDH 508
2) Electrophorosis report:
HbF(2.3-13%) 92.4
HbA0(83.5-95.8) 4.5
HbA2(1.9-3.5%) 3.1
HbD 0
HbS 0
HbC 0
HbE 0
Impression ? Beta Thalassemia Major
? Beta Thalassemia Intermedia
3) DNA Mutation:
IVS 1.5 (G--->C) Heterozygous
Beta Thalassemia Trait
( at the age 2 years)
Please suggest me whether he is thalassemia major/intermedia/minor
Now his Hb is 10.00
Thank you
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With only 4.5% HbA, it would be major. It would not be beta zero major, as there is some HbA. Has your son had blood transfusions?
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Good morning Andy sir,
First of all thanks for quick repply,he required blood transfusion only once at the age 6 years,now he is 9 years old and he is under treatment of Dr. Vijay Ramanan Pune Maharashtra (India) since last three years. When we started treatment of Dr. Vijay Ramanan his Hemoglobin raised to 9.5--10.5--11--11.8--12.5 within four month at the interval of month and now he is maintaining 9.5 to 11.00 in every month without blood transfusion Overall body development is good
Please suggest whether he is thalassemia major/intermedia/minor
Thank you sir
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Andy sir,
please go through DNA mutation analysis of my family which is follows
DNA Mutation of my son(patient):
IVS 1.5 (G--->C) Heterozygous
Beta Thalassemia Trait
( at the age 2 years)
DNA Mutation of mother:
CD 30 (G-->C) Heterozygous
Beta Thalassemia Trait
DNA Mutation of father(my self):
IVS 1.5 (G--->C) Heterozygous
Beta Thalassemia Trait
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The child would have to carry both parents' genes to require transfusion. It seems the mother's gene was not discovered in him, but it must be for him to have that electrophoresis. The result of those two genes together will cause an intermedia to major state. Your gene is a severe beta+ gene. Your wife's is a milder beta+ gene. The outcome can be variable when those two genes are found together, but regardless if it is classified intermedia or major, he still would require transfusions. As you see, there is a small percentage of normal hemoglobin being produced, but not enough to avoid transfusions, unless the fetal hemoglobin is significantly raised, as it is by Dr Ramanan's therapy. Your son's Hb was only above 7 at six months old. It would likely have dropped into a range where transfusions were unavoidable and stayed there without the intervention of the doctor's treatment.
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Thank you Andy sir,for reply
Now his Hb is 10.5 under the treatment of Dr.Ramanan's Therapy
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At the age six month ectrophorosis result:
HbF(2.3-13%) 92.4
HbA0(83.5-95.8) 4.5
HbA2(1.9-3.5%) 3.1
HbD 0
HbS 0
HbC 0
HbE 0
At the age of 8 years again electrophorosis performed result as follows:
HbF (2.3-13%) 91.1
HbA0 (83.5-95.8) 6.9
HbA2( 1.9-3.5%) 2
HbD 0
HbS 0
HbC 0
HbE 0
Remark: increase in HbA(4.5 to 6.9) seen ,what is indication ?.
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At 6 months, the HbA level may not yet be at its final level. By age 8, it would be.
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Thank you Andy sir