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41
Thalassemia Minor / Re: COVID-19 vaccine
« Last post by Nanami on June 02, 2021, 09:39:11 AM »
Hi Friends,

My mother who is 69 years old Alpha minor, got AstraZeneca (Covishield) vaccine with only 60+ can get this kinds of Vaccine in my country. After got the first shot, she felt fine but alittle hot and thirsty until about 9 hours later developed fever about 38° C , then took Doliprane 500g and felt much better. About 6 hours after that, she got a fever again with chills, then took another Doliprane 500g after that felt fine and no other symptoms. Then after 2 months, She just got 2nd shot about 3 days ago with no fever just get alittle pain around the shot area.

About my brother who is 38 years old Alpha minor, got Sinopharm vaccine. After got the first shot, 6 hours later developed alittle headaches and sore around the arm. Two days later got a little fatigue and sleepy. 2 week later got 2nd shot with no symptoms, but a little fatigue.

As for me who is 33 years old Alpha Thalassemia Intermedia(HbH) with Hb 7.5 until now haven't got any Covid Vaccine yet. As for my country I live, only have Sinopharm and Sinovac Vaccine for 18+, but I asked my family doctor, she not recommended  me to get vaccine because I am Alpha Intermedia with low Hb 7-8. Then I asked why my brother and mother can get the Vaccine, She then said that because their Hb is normal. Hmm still wait and see for the News that All Thalassemia Patients especially ( intermedia and major ) can get Covid Vaccine without worry
42
Thalassemia Minor / Re: COVID-19 vaccine
« Last post by Slade on May 30, 2021, 07:57:45 PM »
Maybe we should start asking our GPs and hematologists about the adverse events reported by their thal patients. They should have this information first-hand.
It would be great if anyone has already done this and can share the information.
43
Thalassemia Minor / Re: COVID-19 vaccine
« Last post by sturts desert pea on May 29, 2021, 07:39:59 PM »
thank you @urja for sharing your experience.

I wrote on your other post too.
It would be great if everybody share their stories. So we can have data for other patient who in suspicion.

Which type thal you have?
How was your health condition when you've vaccinated?
Which vaccine you've have you taken?
Side effects?

Please share with us ..

Knowledge is power..

44
The Spotlight / Re: COVID-19 vaccine
« Last post by sturts desert pea on May 28, 2021, 07:16:23 PM »
After months, still there is no answer. :rolleyes I'm wondering about same thing.

Which type thal you have?
How was your health condition when you've vaccinated?
Which vaccine you've have you taken?
Side effects?

Please share with us :biggrin

Knowledge is power..
45
Miscellaneous Questions / North Carolina Doctors and Treatment Center
« Last post by Parin on May 20, 2021, 06:00:08 PM »
Dear All,

Does anyone in North Carolina have the information on Doctors and Treatment Center? please could you pass here.

Thank you
46
Thalassemia Minor / Re: COVID-19 vaccine
« Last post by nitarora on May 20, 2021, 05:58:56 AM »
Hi Team,

Can we have further information on this?

how can we able to give vaccines to our thal kids especially in India where hearing many side effects of vaccines to adults.

Kindly share any valuable experience

Best Regards
Nitin Arora
47
Thalassemia Intermedia / My son with thalassemia intermedia help me
« Last post by annaki on May 15, 2021, 02:46:31 PM »
Good afternoon, we are from Greece. I have b thalassemia trait (IVS-I-1 G->A) and my husband has a silent mutation (-101C>T) . Our son has both genes and has b thalassemia intermedia.
Please give me some information.. Here in Greece they told us that he is going to have a normal life without transfusions but I am in anxiety. He is a newborn and has not be done any blood test yet.

Thank you very very much, I am really happy I found you.
48
Thalassemia Minor / Re: My quest to reduce ferritin
« Last post by Slade on May 14, 2021, 10:32:11 PM »
Hi Andy,
Yes, when I test my Ferritin I always ask for serum iron, TIBC and UIBC as well.
Here are my last lab results from March - they are the best so far:
Ferritin 611 (ref. 30-400)
Serum iron 18.77 µmol/L (ref. 11-36)
UIBC 30.9 µmol/L (ref. 20-62)
TIBC 49.67 µmol/L (ref. 42-78)

Just one month prior to this test my serum iron was 24,6 and ferritin was 730. Strange... heh?
49
Hi Dharmesh,

It's interesting to hear you tell this story - as this is exactly how I ended up finding out about my Thalassemia minor!

Of course, I wasn't actually diagnosed at the time - but it's what led doctors to realise that I had consistently low haemoglobin levels. I was told that I could never donate blood again...

Having said that, maybe after following the nutritional advice provided on this website - you may have better luck than me.

Let us know how you go. Good luck!

Cheers, Dalia



50
Hi Andy,

Thanks so much for your reply, and I couldn’t agree more! In my life experience, all doctors ever told me to do for my thalassemia minor was to ‘take iron supplements’ and ‘eat red meat’. I have never been iron deficient, so this advice was actually harmful for me. 

I do not blame the doctors themselves though, more their training. It’s a real gap that doctors are not taught enough about nutrition and the important of diet for maintaining good health as part of their medical training. This might help to explain why they don’t (or can’t) offer much useful nutritional advice to patients, especially thalassemia ones!

All the information I’ve gained about the additional nutritional needs caused by thalassemia has either come from this website, doing my own research or speaking to ‘alternative’ health practitioners such as acupuncturists and yoga instructors. That’s why this website and the missing information you provide is so vital!

Thanks so much again, and keep up the great work Andy!

Cheers, Dalia

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