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51
Thalassemia Major / Thalassemia Major & Abnormal Liver Function Test Readings...
« Last post by Sagar on March 20, 2023, 02:35:55 PM »
Hi Everyone,

Hopefully this post finds you all healthy. I am happy to be back after quite a while, writing this post on this incredible platform.

I am a 24-year-old thalassemia major patient from India weighing 65kgs, taking chelation therapy of desirox 2500mg per day every 2 consecutive days & kelfer 4000mg every 3rd day after 2 consecutive days of desirox. (Eg:- Mon&Tues – Desirox, Wed- Kelfer & so on). Please note that my liver has a severe iron overload, my pancreas has a moderate iron overload & no iron overload in heart.

My Recent Liver Function test (LFT) report showed bilirubin-total(B/T) of 5.0, bilirubin-indirect(B/ID) of 4.14 & bilirubin-direct(B/D) of 0.86 which is way much higher than the normal limits. I also noticed a steady rise in levels of B/T, B/ID and B/D compared to a year ago. Please note that my SGPT level is 42 and SGOT level is 45. Due to high B/T, I notice dark urine many times in a day and somewhat yellowish skin.

Is this increase in the above levels due to Desirox dosage? Can it be Gilbert Syndrome (which I haven’t tested yet)? Can it be controlled by any home remedies?  Is it harmful to the liver and body in the long run? One of my doctors said that increased B/T readings can lead to Jaundice more often!!

Request Andy for expert advice.

Report attached below.

Regards,
Sagar.
52
Diet, Nutrition and Supplements / Re: Wheatgrass Juice Dosage for 5 years old
« Last post by BobaFett on February 20, 2023, 08:36:20 PM »
Update:

Currently giving 2g of wheatgrass juice powder per day.
53
Thalassemia Minor / Re: Supplements for thal minor
« Last post by VB on February 06, 2023, 05:41:02 AM »
Hi Andy,

Thank you for your response. As per the CBC blood work, my 11 year old son's hemoglobin is as follows :

     Hemoglobin       10.8       (11.7-14.1).

Hemoglobin Electrophoresis shows "Consistent with Thal Minor".

Do you recommend any other testing ? We are hoping for him to grow more and gain some weight.

Thanks!



54
Diet, Nutrition and Supplements / Wheatgrass Juice Dosage for 5 years old
« Last post by BobaFett on January 30, 2023, 12:48:01 AM »
Hi all,

Need some advice on how much per day should I give my child wheatgrass juice powder?
1 serving is 3 grams (for adults). Take 1 to 2 servings per day.

Attached with photos of the product.

Thanks in advance.
55
Sir please suggest me, should i go for a haploidentical BMT for my single 5 years thalassemia GIRL at Appolo Hospital Delhi.

Age - 5 years
weight - 18 kgs
Ferritin  - 2200 (as on 22/10/22)

56
Diet, Nutrition and Supplements / Re: IP6 dosage for 5 years old?
« Last post by BobaFett on January 16, 2023, 07:52:12 AM »
I see, thanks Andy for the feedback.

Can IP6 be consumed after she wakes up, together with Exjade, both 30 minutes before her breakfast?

As from what I read, IP6 will be best consumed on empty stomach.
57
Diet, Nutrition and Supplements / Re: IP6 dosage for 5 years old?
« Last post by Andy Battaglia on January 14, 2023, 08:11:59 PM »
IP6 is a very mild supplement. I would suggest one capsule for a child, but more would not harm the child. It can be opened and mixed into food if swallowing a capsule is an issue.
58
Diet, Nutrition and Supplements / IP6 dosage for 5 years old?
« Last post by BobaFett on January 14, 2023, 12:11:58 PM »
Hi,

Found an IP6 supplement but the dosage stated is for adults.

For General Wellness:

The recommended usage is 2 capsules twice a day on an empty stomach.

Each dosage contains:
IP6 - 800mg
Inositol 200mg

Wondering what's the dosage suitable for a 5 years old (16kg)?
59
Thalassemia Minor / Re: Help with my test and symptoms please!
« Last post by Thalminorguy on January 11, 2023, 12:25:41 AM »
Thank you so much Andy! I just ordered B12 and Magnissuim vitamins.
60
Working Towards a Cure / Re: Etavopivat/ FT-4202
« Last post by Andy Battaglia on January 07, 2023, 08:40:09 PM »
Have the doctors given you any information about how well it is working in patients already in the trial? I was also curious whether or not Luspatercept, Reblozyl has been tried yet.
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