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Thalassemia Patients and Friends and thalpal © A. Battaglia 2018





54832 Posts in 5815 Topics by 6063 Members
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 1 
 on: Yesterday at 04:05:06 AM 
Started by MomI - Last post by Radder
What happens when the Hb drops below 9, Andy?

 2 
 on: November 12, 2018, 10:56:18 PM 
Started by Andy Battaglia - Last post by Parin
bluebird bio Q3 Update

http://investor.bluebirdbio.com/static-files/37fe317c-5c01-43af-9c1d-2decb9d3800d




 3 
 on: November 11, 2018, 06:54:12 PM 
Started by Cyril - Last post by Andy Battaglia
It may be alpha minor. The HbA2, MCV and MCH all look like thal minor. The low HbA2 would have to rule out beta thal minor, as beta minors have a high HbA2. Ana alpha minor may have a low HbA2.
Other than slightly high ferritin, the iron numbers are normal.

 4 
 on: November 11, 2018, 06:51:13 PM 
Started by mudit - Last post by Andy Battaglia
There has been an update in 2016 that can be seen at https://www.hindawi.com/journals/ecam/2016/1713897/?fbclid=IwAR2OnXiRTxbLhjWrIuBTkEhTYsXo0gnGiONdgBA6SuzRw9daTD-EG0owO3c

I still have no idea how patients can get these granules without going to China.

 5 
 on: November 11, 2018, 01:37:35 AM 
Started by mudit - Last post by tobassam
Dears, has something happened since 2007? Why has this dropped off of the radar Huh??!!!!!

 6 
 on: November 11, 2018, 01:32:57 AM 
Started by AL - Last post by tobassam
We have come across this in the past and have some previous posts at
http://www.thalassemiapatientsandfriends.com/index.php?topic=1664.msg13786#msg13786
http://www.thalassemiapatientsandfriends.com/index.php?topic=2227.msg19390#msg19390

I don't think this would be of any real help to thal majors, but might have some positive effect for minors, but the cost is most likely not worth it.

Back to the original subject - which has nothing to with "thetole.org" - Andy or anyone, any way you know to get this chinese medicine?

 7 
 on: November 10, 2018, 06:01:21 PM 
Started by Cyril - Last post by Cyril
Hello all,

Very grateful to have found this site! I am a 48 year old male and am in the process of being referred to a Hematologist for suspected Thalasemmia Minor. Before my first appointment I would love to get some advice on what I should be asking and requesting based on my current blood test results.

RBC Count - 6.07 H  4.20-5.80
MCV - 76.6 L   80.0-100.0
MCH - 24.7 L   27.0-33.0
Hemoglobin A2 - 1.5 L   1.8-3.5


Ferritin - 413 H   20-380


Iron, Total - 91   50-180
Iron Binding Capacity  - 313    250-425
% Saturation - 29   15-60

Thank you so much!

Cyril

 8 
 on: November 09, 2018, 05:01:39 PM 
Started by Lwergod - Last post by Andy Battaglia
The nodules sound benign, and might possibly be sebaceous cysts. Has a doctor looked at them? If a doctor thinks they are of concern, a biopsy would most likely be done. If they are benign cysts, nothing needs to be done.

Your calcium is in normal range, but near the high end of normal. The main concern would be creating an imbalance with magnesium, but you are taking magnesium. The reason I mention it is because an imbalance between magnesium and calcium can lead to heart palps. A magnesium complex might be a better choice to make sure it is being well absorbed. Low magnesium can also cause muscle cramping and muscle pain. Also, because over 99% of the body's magnesium is not in the blood, testing reveals practically nothing about your magnesium status.

The reason I asked about the protein is that your BUN, blood urea nitrogen, is at the high end of normal and this can be caused by too much protein. It can also indicate a kidney problem, but I don't know if it's really something to check into, as other sources list the high end of normal at a higher level.

 9 
 on: November 09, 2018, 04:28:05 PM 
Started by Trangvn - Last post by Andy Battaglia
Yes, I think all thalassemics can benefit from drinking tea. Tea is an excellent antioxidant and is also a mild iron chelator.

 10 
 on: November 09, 2018, 04:26:45 PM 
Started by Andy Battaglia - Last post by Andy Battaglia
Yes, wheatgrass is available in tablets and it's basically the same as the powder. I recommend organic. If you have any concerns about using wheat, organic kamut grass is recommended. Kamut is an ancient ancestor of wheat and has not been the victim of hybridization, so it is far more unlikely to cause allergies like wheat does. You can easily find these products online.

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