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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55105 Posts in 5866 Topics by 6148 Members
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 1 
 on: September 11, 2019, 03:11:23 PM 
Started by Lokkhi maa - Last post by Andy Battaglia
It really depends on what the child is taking. If the vitamin E is natural and not synthetic, 200 IU is fine. If it is synthetic, throw it out and find natural E.
If the child is taking folic acid and not folate, the dosing should not be high, as folic acid can build in the body due to its slow processing by the liver. If the child takes folate, a dose of 1-2 mg daily is sufficient. If it's folic acid, no more than 400 mcg should be taken daily.

Chelation is mandatory for transfusing patients. Iron will damage the organs if not removed. If the iron load is under control, lower doses of the chelator can be used.

 2 
 on: September 10, 2019, 02:07:30 PM 
Started by MalloryL02 - Last post by Andy Battaglia
Stinging nettle has very few side effects and those it does have in some people are quite mild. There is no reason to not take it.

 3 
 on: August 31, 2019, 03:38:45 AM 
Started by Lokkhi maa - Last post by Lokkhi maa
Dear Andy,

My 5 yrs old child daily taking 200 iu Vitamin E and 5mg Folic acid.

But recently her doctor advised not to continue vitamin E regularly and folic acid 15mg per day.

Doctor also said she may take vitamin E 1day gap.

Her serum ferritin is now 1005.

Last month we have not give her Asunra for supply issue.

If not continue chelaton therapy regularly then it will be harmful for my child?


  

 4 
 on: August 30, 2019, 10:58:40 AM 
Started by MalloryL02 - Last post by MalloryL02
Do you know if Thal minors would be okay taking nettle leaf supplements daily? I have interstitial  cystitis, which is an incurable bladder problem that affects the lining of the bladder causing you to pee 50-60 times a day (sometimes more). It’s also caused a few more health problems but histamine intolerance can really be helped with stinging nettle and my bladder problem could possibly also benefit from it. I just wanted to see your thoughts on stinging nettle and thal minor.
Thanks!

 5 
 on: August 29, 2019, 05:32:21 PM 
Started by xAssal93 - Last post by Andy Battaglia
As I mentioned, I found an article that stated that the PSU genome database has incorrect information for the severity of the IVS-2-745 mutation.
I would like to see the percentage of HbF, fetal hemoglobin in your electrophoresis. Typically, those with higher HbF who carry that variant have a mild condition and that would explain your normal Hb level.

 6 
 on: August 28, 2019, 10:46:43 AM 
Started by xAssal93 - Last post by xAssal93
First of all, I am really glad that you took the time to give your input!

However, right now I am very confused, your previous reply indicated that according to the test results, I should be a thal intermedia and I should be experiencing anemic symptoms but now you are suggesting that it is a mild beta + mutation.

I will be doing an electrophoresis as per your suggestion and it should take around 10 working days to be done (it will be sent to another country to be tested accurately) and then I will share it here.

I would really appreciate your further input regarding my question in this post, also, I would like to point out that I have done an electrophoresis  before and the results suggested that I am a beta thal carrier if that can help you rule out anything. I really want to know if we have a chance of living a normal life.


Thank you again <3 

 7 
 on: August 27, 2019, 06:21:13 PM 
Started by xAssal93 - Last post by Andy Battaglia
IVS-2-745 is considered a mild beta + mutation. There is some dispute about the accuracy of the PSU gene database on the severity of the variant. It is quite likely an innocuous variant that causes little to no harm. Your wife's thal mutation is also considered very mild. There is no variant called simply IVS-2. It needs to be something like IVS-2-1 or IVS-2-745.
The question I gave is why your report says you are homozygous for IVS-2 and IVS-2-745? That would actually be heterozygous as it would be two different variants, so if you are homozygous, it would mean you and your wife carry very mild thalassemia mutations. Homozygous patients have fairly normal Hb levels.

I would suggest that you have a simple hemoglobin electrophoresis test done if you haven't already had one. I would like to know the level of HbF measured before commenting further. A higher than normal level for a thal would be a good indication that it is indeed a very mild thalassemia that you carry. I am leaning towards the side where any children you have would have a mild thalassemia even if they do acquire two mutations from the parents, but it would really help to know your HbF level.

 8 
 on: August 26, 2019, 11:16:26 AM 
Started by xAssal93 - Last post by xAssal93
*BUMP*

If anyone can reply to my original question I would highly appreciate it. This story has been going on for more than 3 years. Your input is highly needed.

Thank you!

 9 
 on: August 23, 2019, 08:33:40 PM 
Started by TKDgirl7 - Last post by TKDgirl7
That’s an interesting theory. I know I really struggled with my iron during my pregnancies, but otherwise I think I do okay even though I’m on the lower side of normal.  I’ll be curious how my oldest’s numbers look, he eats meat unlike my younger son.  His platelets were slightly higher than normal too, which my younger son’s are not.  I will be relieved once all of this is sorted out.

 10 
 on: August 21, 2019, 06:34:17 PM 
Started by TKDgirl7 - Last post by Andy Battaglia
I have theorized that the reason thal minors often have low serum ferritin is because iron is kept in use by the constant overproduction of red blood cells. Since iron is recycled and not eliminated by the human body, the amount of iron present would still be the same, but it would not be concentrated in ferritin, but rather it will be found in the constant use and recycling. Doctors get alarmed about low ferritin, but the iron bound by ferritin is what your body is currently not using. I don't think in the context of thal minor that ferritin is a very useful measurement.

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