Recent Posts

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Thalassemia-related Issues / Re: Cholesterol and oxidative stress
« Last post by Sheeta on November 02, 2021, 06:04:19 AM »
Hi Andy,

May I know how to consume Indian Amla Powder?
- Did you mix with water
-Did you consume before your breakfast
Thalassemia Minor / Re: Covid?
« Last post by Andy Battaglia on October 30, 2021, 06:47:02 PM »
Selenium is often mentioned as therapeutic for covid, as are vitamin D (most important), zinc and quercetin. I believe my high vitamin D and zinc levels were the reason I did not catch covid when two co-workers had it for over a month.
I would also suggest having your vitamin D level tested, if possible.
Has he tried taking it right after a meal?
Thalassemia Major / Re: The Goal For Thalassemia Patients Today...
« Last post by Andy Battaglia on October 30, 2021, 06:41:12 PM »
IP6 caps are typical size for a capsule. I would suggest one capsule per day and see if it is well tolerated.
Anyone knows if Deferasirox FCT is available in Pakistan or in Middle East? I asked at many large pharmacies in Karachi Pakistan but this is not available here. Any guidance in this regard will be really helpful.
Thalassemia Minor / Re: Covid?
« Last post by mannypee on October 25, 2021, 10:59:21 PM »
I got COVID 2020 March/April time. While my parents and my wife also got it, it felt like it took me forever to recover. I was off work for an entire month, and some days I felt better, and then other days I felt ill again and low energy. While never officially diagnosed or tested with it, my wife was tested and had the anti bodies. We also both lost our sense of smell and taste, but mine completely went, and I could literally drink tabasco sauce without issue, I felt no burning sensation.

But out of everyone close to me I knew, it really did hit me the hardest. After that I started taking selenium, and hadn't been ill once except for 2 week ago, but I had been slacking on taking my stack (which had selenium in it) for the last couple of months, so I could test supplements individually. And that cold 2 weeks ago hit me hard.
Thalassemia Minor / b9/b12/iron deficiencies and bipolar symptoms, my experience
« Last post by mannypee on October 25, 2021, 10:44:17 PM »
Hi I'm manny,

I'm half Indian and half English and have beta-thalassemia minor and live in the UK. For the past 4 or 5 years I've been really struggling with hypomania, pressured speech, and sometimes crazy suicidal lows. It seemed to be rapid cycling bipolar, where I can become suicidal, and then an hour later be fine within the same day. But I mostly suffer from hypomania and pressured speech. I use to suffer a lot from OCD, but that seems to have abated lately. These past 4 years I've been really trying every supplement under the sun, trying to cure my increasing hypomania and pressured speech that's been plaguing me, but nothing has worked.

This past week I've been very hypomanic/pressured speech, but also for the first time I started taking B9 and B12 in their methyl forms. Yesterday my symptoms seems significantly less, and today they seem non existent. Also I've started to see pink in the palms of my hands, whereas before they've always been yellowy (which I had always attributed to the mild anaemia beta thalassemia trait causes).

So I wanted to share my story, especially since my bipolar symptoms have worsened significantly the last 4 years, and I've tried everything under the sun when it came to supplements to fix it, and nothing worked. I regularly took a multi vitamin so I didn't think I'd be deficient in either b9 or b12, but it seems I might be one of those people who require different forms. I am also a meat eater.

While it's only been a couple of days since my symptoms have abated, I feel it could be a very real possibility that b9/b12 deficiencies could have co-existed with my blood disorder all of these decades which may have been causing my bipolar symptoms all along. Currently the only side effect has been insomnia since taking the methyl forms of B9 & B12, which I'm seeing if I can counteract by trying different things.
Announcements / Teen Thal Support Group Meeting
« Last post by Bostonian_04 on October 22, 2021, 06:23:00 PM »
This support group has been an extremely helpful, safe place for a parent like me when I first heard the new born screening diagnosis of my daughter 15 years ago. Now, our little girl is gown up and starting a Teen thal support group for US patients, called Connect To Health And Life (Connect THAL). So posting the details of the support group for other teens to join and know they are not the only one and stay connected as they grow up.

Connect THAL: Every Second Sunday of the Month, Starting October 10th, from 5:30 - 6:15 pm. EST

Connect THAL is an online teen group for teenagers between the ages of 14 and 17 that offers a safe place to talk, share, connect with, and support each other. We are iron warriors who have to not only deal with the stress of high school, extracurriculars, and life as a teenager, but also the additional stress of medical appointments and thalassemia. Having access to a group of other who are going through the same things is important, and that is what Connect THAL is made for.

Upcoming Sessions:
Nov 14, 2021 5:30 PM Eastern
Dec 12, 2021 5:30 PM Eastern
Jan 9, 2022 5:30 PM Eastern

If you have any questions and want the Zoom link details, please email Kathleen Durst at: ´╗┐
The Spotlight / Re: COVID-19 vaccine
« Last post by ThalMinorSEA on October 19, 2021, 06:07:07 PM »
I'm a 40-year-old female with beta thal intermedia and got two doses of Moderna COVID vaccine earlier this year (first dose in late March, second dose in May). It was fine! I had a very small rash near the injection site a few days after getting the vaccine, which is a normal reaction for the Moderna vaccine. My upper arm near the injection site was also sore for about 36 hours, which is about the same as what I've experienced with other vaccines (flu, TDAP, etc.). I didn't notice any other side effects. My dad, who also has beta thal intermedia, got the same vaccine and said he felt tired in addition to the sore arm. He is 70. He didn't have any other side effects.

At the time I got the vaccines, my hemoglobin was about 9 (normal for me) and my ferritin was about 650 (ferritin has gone up since but that's part of a long-term trend over the past few years so I'm certain it has nothing to do with the vaccine).

My own perspective is that a COVID infection would be significantly higher risk for me than taking the vaccine, which is one of the most effective, most widely administered vaccines in history at this point. mRNA vaccines (Pfizer, Moderna) are even safer than traditional vaccines, so I was very comfortable taking the vaccine!
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