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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55336 Posts in 5914 Topics by 6219 Members
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 1 
 on: July 28, 2020, 06:32:54 PM 
Started by Jairo Ammirati - Last post by Melontan
I will make the changes. Thank you Andy.

 2 
 on: July 28, 2020, 04:01:06 PM 
Started by Jairo Ammirati - Last post by Andy Battaglia
You might try a once weekly dose of 50,000 IU vitamin D, instead of the daily doses. It does work better with a high dose once weekly and vitamin D can help with depression. I would also recommend 500 mg magnesium daily, as it also helps with depression, and is also one of the more important nutrients for thals.

 3 
 on: July 28, 2020, 03:57:54 PM 
Started by Hana - Last post by Andy Battaglia
Take up to 5000 MCG B-12 as a sublingual tablet daily.
400 IU natural vitamin E daily.
Folate is the only universal recommendation for alpha thal, so it's something all doctors should prescribe to alpha patients.

 4 
 on: July 27, 2020, 07:45:10 PM 
Started by Jairo Ammirati - Last post by Melontan
Hi Andy,

My daughter is 16 now and stands at 5ft 7 inches, she is on 2-3mg of methylcobalamin, 8.4mg methylfolate, I am giving her one Life Extension B-Complex capsule (Vitamin B1 50mg, Vitamin B2 37.5mg, Niacin 50mg, Vitamin B6 60mg, Biotin 1000-2000mcg, D-Calcium Pantothenate 250mg, Calcium as D-calcium panthothenate and dicalcium phosphate 45mg, inositol 50mg, para-aminobenzoic acid), 5000 iu Vitamin D, 500mg vitamin C, 2.5mg of Wild Alaskan fish oil, Artic cod liver oil 30mcg RAE. The oil based supplements are taken seperately.

She is currently on two medications for her depressive moods, but we are removing aripiprazole and keeping sertraline for a bit longer. I am intend on increasIng the dosage of methylfolate.

I learnt from the psychiatrist that they do have quite a few thals with mood disorders, even the paediatricians told me that it is common. However, antidepressants don’t seem to work on thalassemics but they still have to start with SSRIs for treatment. Having conversed with other thals on the FB group, they also report the lack of effect of SSRIs.

This morning, my daughter said that she is starting to feel the despair again, I think that artificial scented candle that she was using instead if essential oils might be a contributing factor.

At The National Thalassemia Registry, the nurse told us that they had one intermedia patient that only requires transfusions at 21 years old.

 5 
 on: July 27, 2020, 03:51:42 AM 
Started by Hana - Last post by Hana
Thanks Andy
 I will try to take 8500mcg of the Folate and more of Vitamin D with all the vitamins that my doctor give me ,and see if it can help me more energy. So what about B12 you mentioned, how much mcg should I take a day? And What about Natural E , Does it necessary for HBH Patients like Folate or not? And how many mg or IU of Natural E do u recommend ?

 6 
 on: July 26, 2020, 05:57:46 PM 
Started by Hana - Last post by Andy Battaglia
Hana,

What your doctor is giving is good, but the vitamin D is a low dose with little benefit. I will swear by the dose of 50,000 IU once weekly. I was told that's how thals are successfully treated for low D  and I also decided to take that dose and my low D problem was finally solved. I would also suggest that you do take the extra folate supplement. 8500 mcg won't hurt you and it would be worth trying to see if it is more effective. I started taking 5000 mcg daily and daily B-12 and I won't stop taking it. It has had a very positive effect on my late afternoon, thyroid related fatigue and enabled me to finish my work days.

 7 
 on: July 26, 2020, 05:50:35 PM 
Started by jay - Last post by Andy Battaglia
IF,

I don't know if tularemia would affect thal, but if antibiotics are used to treat it, it's best to avoid any that contain sulfur, as sulfur can cause a drop in hemoglobin in many thals.

 8 
 on: July 26, 2020, 05:47:09 PM 
Started by hzele - Last post by Andy Battaglia
You should definitely find out more before continuing iron supplements. The high ferritin could be of concern. Do you have the results of a complete blood count, CBC? MCV, RBC and RDW values would be useful.

 9 
 on: July 26, 2020, 05:44:51 PM 
Started by Jairo Ammirati - Last post by Andy Battaglia
Zahra,


I don't think I've seen such a wide gap between donor and recipient before. Is the donor son a minor?

 10 
 on: July 26, 2020, 05:13:07 PM 
Started by Jairo Ammirati - Last post by Andy Battaglia
Hi  Melontan,

It does seem that many of the problems associated with thal can worsen as thals get older. Many intermedia patients will be normal when young, but will eventually end up needing transfusions, as their Hb level often drops as they get older. I would suggest continuing the supplements and also making sure her diet is fully nutritious. Avoiding junk food and empty calories is very important and should be a lifelong goal. It is also important to avoid the substances that can cause hemolysis, the destruction of RBCs in thals, especially in those who carry alpha. Patients may be very sensitive to things like artificial scents. A list of things to avoid can be seen at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830  Any of these substances and others can cause the Hb to drop in alpha thals.

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