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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55076 Posts in 5863 Topics by 6140 Members
Latest Member: Thallife

We love you, Lisa.
May you Rest in Peace,
knowing that your legacy lives on,
right here, and through all of us.
You're forever in our hearts.
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 1 
 on: July 20, 2019, 08:19:23 AM 
Started by ludo - Last post by ludo
Hello thals. Excuse my improvable English. I have beta-thalassemia minor diagnosed by electrophoresis.

My hemoglobin value was 12.6 or less 10 years ago. Then I suffered from tachycardia, frequent dizziness and little weight, perhaps because I was deficient in folic acid.
Then I improved my diet and the following year it was 13.4.

I forgot my thalassemia, because it only gives me some pallor and sporadic dizziness, I feel strong and better than some people without thalassemia.
I do few blood tests for fear of syringes.

A few days ago, I did a blood test and I was glad that my hemoglobin value is 14.4 g/dl (range 13.5 - 18), even though I became sedentary and I have low mood.

male, 30 years, healthy
RBC: 5.75
MCV: 69.0
Iron: 155 μg/dL (59 - 160)  
Ferritin: 41.7 ng/mL
B12: 343.00 pg/mL (200 - 950)
Folic acid: 8.80 ng/mL (3 - 17)
Total bilirubin: 1.1 mg/dL (0.2 - 1.2)
All other values ​​are right

Before the test, I was taking several supplements for purposes unrelated to thalassemia. It's possible that some of them incidentally improve symptoms of thalassemia, so I want to share it with you
notice: maybe this only works on me or my thalassemia is milder than minor

niacin with flush 200 mg alone / day
NAC 200 mg + selenium 50 mcg + milk thistle [4:1] 500 mg together / day
lutein 20 mg + zeaxanthin 2 mg together / day
ashwaganda [4:1] 920 mg / day
ginkgo biloba 120 mg / day
polygonum multiflorum [12:1] 333 mg / day (beware, it didn't happen to me, but some preparations can stress the liver)

melatonin 10 mg / night (beware, this can make you feel tired even after waking up)

vitamin D3 5000 iu / twice a week

some B12 sublingual sporadically
folic acid 400 mcg + zinc picolinate very sporadically
I know, I must take more and regularly

Cheap multivitamin supplement, with 8 mg of iron. I know, this is a mistake  .

A lot of 40% cocoa sugar-free + milk
Some whey protein
2 or 3 eggs daily
Drastic reduction of sugars

Thanks to what I learned in these forums, I will add L-carnitine, natural vitamin E, magnesium, perhaps resveratrol and avoid iron. Wheatgrass seems expensive to me.
I want to do another blood test in January 2020.

 2 
 on: July 19, 2019, 11:22:53 PM 
Started by jatin - Last post by jatin
Hello all has any one faced leg ulcers and vein porforation .
I am on hyrodoxurea .
HB around 10 gram .
Ferrtin around 750
Pls advise

 3 
 on: July 19, 2019, 09:00:02 PM 
Started by Sunny2701 - Last post by JohnnyBoy53
Isn't it 1/4? I remember seeing a graphic about this at a conference of the chances a sibling will be a match. That number also matches with your current numbers (20% - 25%)

 4 
 on: July 19, 2019, 05:46:53 PM 
Started by JohnnyBoy53 - Last post by JohnnyBoy53
Sorry, I forgot about this post and remembered about it after the recent conference. The girlfriend (shes the actual thal patient. Just said I was to make things less confusing) was on combination chelation to get her iron levels lower. We got it down from 2700 to about 1000. She has no Iron in her heart, but her liver iron concentration is high. We were doing well with chelation, but had to stop due to getting pregnant. The plan is to get the LIC checked again after pregnancy to determine how aggressive we need to be in chelation. We weren't able to check the LIC after the aggressive chelation.

In any case, she will see how she feels on current regimen(2 units every 3 weeks) after pregnancy. It is difficult to tell now because her fatigue can be due to pregnancy. If she is still too tired, then we plan to get the iron levels lower and change to 2 units every 2 weeks. 

 5 
 on: July 17, 2019, 08:51:57 AM 
Started by CUSO - Last post by CUSO
It has been a while since my last post. I have been doing great. No illness, infections, I feel healthy. Havent taken antibiotics for 3 years. I have fought off several colds and 1 flu without antibiotics. Granted, they last longer than the rest of my family. I have all the vaccines. At this point in my life I am wanting to buy a beach house on the gulf coast. I am seeing several deaths due to Vibrio this year. Now, I had spoken to a Dr and they told me that not having a spleen with this bacteria wont matter. Another told me it would. I believe the oncologist told me it does not matter and the gastro said it did matter. I cant find any info online about this. The people who mostly get vibrio have "compromised immune systems" (what ever that means). I know mine is not optimal, but compromised simply for not having a spleen? Also i have read that by now, my liver and other organs have taken over several functions of the spleen. I also never want anything to do with antibiotics unless i absolutely must take them... any real info that is not just opinions would be very appreciated. thanks

 6 
 on: July 17, 2019, 08:16:25 AM 
Started by CUSO - Last post by CUSO
It has been a while since my last post. I have been doing great. No illness, infections, I feel healthy. Havent taken antibiotics for 3 years. I have fought off several colds and 1 flu without antibiotics. Granted, they last longer than the rest of my family. I have all the vaccines. At this point in my life I am wanting to buy a beach house on the gulf coast. I am seeing several deaths due to Vibrio this year. Now, I had spoken to a Dr and they told me that not having a spleen with this bacteria wont matter. Another told me it would. I believe the oncologist told me it does not matter and the gastro said it did matter. I cant find any info online about this. The people who mostly get vibrio have "compromised immune systems" (what ever that means). I know mine is not optimal, but compromised simply for not having a spleen? Also i have read that by now, my liver and other organs have taken over several functions of the spleen. I also never want anything to do with antibiotics unless i absolutely must take them... any real info that is not just opinions would be very appreciated. thanks

 7 
 on: July 16, 2019, 12:27:26 AM 
Started by sagar1 - Last post by kaleem
My 2 and half year old son 15 kg.. how much would be the ideal volume of blood intake in ml at hb of 10?

 8 
 on: July 06, 2019, 01:10:49 PM 
Started by TKDgirl7 - Last post by Andy Battaglia
You can try the iron infusion and see if it helps the symptoms. I don't think the ferritin measurement has much relevance in light of the other iron numbers being in normal range. If there is a significant increase (at least .5) in Hb after the infusion, you can assume the iron helps. If the Hb doesn't really move, iron isn't helping.

 9 
 on: July 06, 2019, 01:06:35 PM 
Started by sagar1 - Last post by Andy Battaglia
Natural vitamin E is a great antioxidant. Check the label. Natural says d-alpha tocopherol. Synthetic E says dl-alpha tocopherol. Only use natural E.

 10 
 on: June 29, 2019, 10:55:38 AM 
Started by TKDgirl7 - Last post by TKDgirl7
Hi Andy,
He was was on the Spatone for around two years (1 packet 3 times a week), during that time he had a couple of blood checks, but was in the 30-40ish range for his ferritin when he was checked.  Around December, I requested testing because he became noticeably more pale and even more fatigued than usual, along with weight loss.  That test showed his ferritin was still in normal limits, but by the time we met with his Hematologist in February it had dropped to 19, which was when he was prescribed the NovaFerrum. So now he's still has symptoms and hasn't improved his Ferritin even with the 3 month prescribed treatment.
The hematologist called me back and is recommending he do one iron infusion to see how he responds, she was concerned about giving him iron because of his thal, so he will only do one and see if his energy improves.  She is also recommending he see a Gastroenterologist to see if there might be some bleeding that is causing the iron deficiency. 
I'll definitely try some dried fruit, thank you!  He's also been getting super liquid folate each day from your recommendation earlier.  Hopefully with the summer off to relax we can focus on his nutrition and more rest he will regain some energy:). 
Here are his most recent labs:
Component                         Your Value             Standard Range
Ferritin                                18.4ng/ml            22-274ng/ml
Reticulocyte Count %            1.9%                   0.5-2.0%
Reticulocyte Count Absolute   0.096%               0.026-0.095 M/uL
Immature Retic Fraction        13.2%                 2.3-13.4%
Reticulocyte Hemoglobin       22.3pg                 24.1-35.8 pg
White Blood Cell Coount        5.41 K/uL            5.5-15.50 K/uL
Red Blood Cell Count            5.09 M/uL            4.00-5.20 M/uL
Hemoglobin                         10.0 g/dL            11.5-15.5 g/dL
Hematocrit                           32.3%                35.0-47.0%
MCV                                    63.5 fL                77-95 fL
MCH                                   19.6 pg                25-35 g/dL
MCHC                                 31.0 g/dL             32-36 g/dL
RDW                                  33.8 fL                 37-50 fL
Platelet Count                     312 K/uL              150-440 K/uL
MPV                                   10.7 fL                 8.0-13.0 fL
nRBC                                  0.0                      0.0-0.2 #/100
Absolute NRBC's                   0.00 K/uL            0.00-0.01 K/uL
Neutrophils Relative Percent    30.0%               32.0-52.0%
Lymphocytes Relative Percent  57.9%               40.0-60.0%
Monocytes Relative Percent      9.8%                1.0-11.0%
Eosinophils Relative Percent     1.3%                0.0-6.0%
Basophils Relative Percent        0.6%                0.0-2.0%
Immature Grans Relative Percent .40%             0.00-0.42%
Neutrophils Absolute                   1.63 K/UL      1.76-8.06 K/UL
Lymphocytes Absolute               3.13 K/UL        2.20-9.30 K/UL
Monocytes Absolute                  0.53 K/UL        .05-1.70 K/UL
Eosinophils Absolute                 .07 K/uL          0.00-0.93 K/uL
Basophils Absolute                    0.03 K/uL        0.00-.30 K/uL
Immature Grans Absolute          0.02 K/UL       0.00-0.03 K/UL

Thanks Andy!
Crissy





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