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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55375 Posts in 5922 Topics by 6232 Members
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This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: Hello i am new  (Read 10161 times)
jknt
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« on: October 13, 2016, 07:03:29 PM »

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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Andy Battaglia
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« Reply #1 on: October 15, 2016, 12:27:20 PM »

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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Andy

All we are saying is give thals a chance.
jknt
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« Reply #2 on: October 16, 2016, 09:13:25 AM »

No , i have never transfused. Ok thanks , maybe you know the dosage of these supplements that i should take to have effect?
« Last Edit: October 16, 2016, 09:24:18 AM by jknt » Logged
Andy Battaglia
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« Reply #3 on: October 18, 2016, 06:24:08 PM »

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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Andy

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jknt
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« Reply #4 on: December 17, 2016, 08:42:53 AM »

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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« Reply #5 on: December 19, 2016, 06:51:10 PM »

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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Andy

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pgpawar2
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« Reply #6 on: August 03, 2018, 03:51:57 AM »

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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pgpawar2
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« Reply #7 on: August 03, 2018, 03:54:16 AM »

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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« Reply #8 on: August 03, 2018, 04:21:05 AM »

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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Andy Battaglia
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« Reply #9 on: August 04, 2018, 07:47:45 PM »

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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Andy

All we are saying is give thals a chance.
pgpawar2
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« Reply #10 on: August 05, 2018, 10:55:44 PM »

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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pgpawar2
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« Reply #11 on: August 05, 2018, 11:25:24 PM »

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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Andy Battaglia
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« Reply #12 on: August 06, 2018, 06:42:19 PM »

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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Andy

All we are saying is give thals a chance.
pgpawar2
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« Reply #13 on: August 06, 2018, 11:25:59 PM »

Thank you Andy sir,for reply
Now his Hb is 10.5 under the treatment of Dr.Ramanan's Therapy
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pgpawar2
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« Reply #14 on: August 06, 2018, 11:39:24 PM »

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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