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Thalassemia Patients and Friends and thalpal © A. Battaglia 2017

54281 Posts in 5716 Topics by 5834 Members
Latest Member: redrum123

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 on: Today at 05:58:52 PM 
Started by dq - Last post by dq
Hi Andy,

Quick question for you mate;
After all the issues I went through whilst on Allopurinol for my high uric  (haemoglobin drop etc. which haematologists are not convinced is due to Allopurinol) we have moved to Febuxostat.
Now I have been increasing my dose very slowly and I have noticed a very slight drop in haemoglobin whilst being on it.
Now its not really enough to justify stopping Febuxostat just yet (down from 7.2 to 6.6) - what do you think..?

On another note, I took a G6PD test the other day to see if this may be the cause of all my dilemas and the result has come back as [27.1 U/g Hb]  The 'normal ramge' is [5.6 - 11.2 U/g Hb].
Is the result being on the high side a better result then the low side?  For that matter, does the test indicate I have a G6PD problem..?

Thanks mate - your a top man.

 on: January 14, 2018, 02:21:23 PM 
Started by Andy - Last post by SaltySea
Thanks for sharing Andy.

This is definitely food for thought.  Do you know whether doctors  (GPs) in general  look at this type of research?
From my own personal experience the doctors I have seen do not. I have brought in some of the papers from this excellent resource and other papers I have found in relation to the symptomatology pertaining to thalassemia carriers and they tend to discount it, which really annoys me.  Any suggestions on how I can engage my doctors in at least considering this research and its insights?

 on: January 14, 2018, 02:15:22 PM 
Started by delilah - Last post by SaltySea
First of all congratulations on your pregnancy.  Wonderful news.

In regards to the information you have presented your husband's MCV and MCH appear normal which does not suggest that his cells are hypochromic or microcytic which is usually a feature of thalassemia carriers. 

Have you done a Hb eletcrophoresis. This blood test should not take long.

 on: January 14, 2018, 02:10:08 PM 
Started by SaltySea - Last post by SaltySea
Thanks Andy.

 on: January 11, 2018, 02:41:54 AM 
Started by sighvang - Last post by Lokkhi maa

Thank you Andy.

Please recommend a good brand for L-carnitine and dose also.

Dear Andy,

Please suggest a vitamin name which contains magnesium,calcium,B6 and Zinc.
I am searching this type of vitamin for my daughter hyperactivity.

If you have idea please advice.    

 on: January 11, 2018, 02:38:20 AM 
Started by Sunny2701 - Last post by Sunny2701
Hi all,  another trial starting this year on b-thal and sickle cell anemia.  Here is the link,  looks promising


 on: January 07, 2018, 02:25:05 AM 
Started by maha - Last post by maha
Yes Andy, I have forwarded the report to Dr Ramanan. We have an appointment with him on the 15th of jan. it was Dr Ramanan that insisted on the mutation analysis being done.
This time in spite of taking IP6 his ferritin increased from 222 to 347.
What’s a good dosage for a 11 year old weighing 37kgs?

Thank You

 on: January 07, 2018, 12:04:17 AM 
Started by delilah - Last post by delilah
Hello all, thank you for admitting me as a new member of this board! Two days ago I have been diagnosed with Alpha (zero) thalassemia (two gene deletion) via the prenatal genetics test given to me due to my advanced maternal age (I am 36 y.o). Needless to say, I was shocked and really bummed out about my new status as an Alpha that carrier, since this pregnancy was nothing short of a miracle after 5 consecutive losses... Well, not surprisingly, now they want my husband to get tested. I know, that the only way to determine this for sure is through the DNA test, however, since it takes time to conduct this analysis (which doesn't help my anxiety a slightest bit), I was wondering if someone can look at my husband's CBS report and tell me at least the ODDS of him having the same type of thal as me?
RBC 5.63 (4.10-5.60)
MCV 86.2 (80-98)
MCH 29.4 (27.0-34.0)
MCHC 34.0 (32.0-36.0)
RDW 13.2 (11.7-15.0)
I know these indicators pretty much exclude the two gene deletion scenario.... However, it worries me that he still can a be a silent carrier of Alpha thal. Thank you in advance!

 on: January 06, 2018, 06:25:08 PM 
Started by maha - Last post by Andy
Homozygous means both genes are the same, Codon 5 (-CT) . This is a beta zero gene. If this is correct, it means the child has an unusual capacity for producing fetal hemoglobin, HbF, with stimulation, such as drugs like hydroxyurea and thalidomide. I hope that Dr Ramanan has been informed of the Codon 5 (-CT)  genotype. Some people do have other genetic features that favor the production of HbF, and your son appears to be one of them.

 on: January 06, 2018, 06:11:04 PM 
Started by Waleed - Last post by Andy
I'll be interested in seeing the MRI scores when you have them.

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