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55464 Posts in 5940 Topics by 6278 Members
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 1 
 on: Yesterday at 04:54:32 PM 
Started by Andy Battaglia - Last post by NOLA4507
Thanks for this information.  Question:  I have thal minor.  All of my life, I've had shortness of breath with mild exertion.  In November, I caught COVID with only mild flu-like symptoms.  In the last month, I have joined a gym (before was mainly brisk walking 4 miles) and joined a small group with a trainer.  I am so out of breath do anything re cardio.  Has anyone else experienced this, especially after having COVID.  I am asking only because it is so noticeable now -- where in the past, I worked through the shortness of breath and moved on.....  Thanking you in advance for your thoughts.

 2 
 on: April 14, 2021, 11:10:00 AM 
Started by Andy Battaglia - Last post by SandsofTime
I was superbly low on Vitamin D3 - level 25 on a scale range of 75 - 250 nmol/L. No wonder I felt so tired and sleepy all the time, so much so that I was afraid of driving around on highways without taking consuming huge amounts of strong coffee  Cry

After my doc said my vitamin D level is the lowest she had seen so far in her career, advised me to take 2000 IU per day. Within two days I started feeling so much better, now my D3 level is around 76 nmol/L just above the threshold. What you people here say, should I boost the dosage higher to test if I can feel even better. I still have tiredness and aches probably from the thal minor trait.

 3 
 on: April 14, 2021, 10:40:32 AM 
Started by Andy Battaglia - Last post by SandsofTime
I have delta beta thalassemia trait with Hbf upto 20% at times. I have normal hemoglobin levels, but I get tired very easily. I was also tested for severe vitamin D deficiency which was a life saver in that it reduced my sleepiness and fatigue by quite a bit. But still I have to sleep long hours and take several naps in the day even when I am doing office work sitting in a chair, since my body aches quite a bit after undergoing mental concentration. I also am unable to keep up with my wife on vacations when long walks or physical activity such as paddle boating is involved. Also my hands shake suggesting poor motor control - I am afraid of holding a soup spoon for fear of embarassing myself. I can't even seem to speak long sentences without catching my breath or stuttering.

I think the Hbf is less efficient at delivering oxygen that is why even with normal hemoglobin levels I run out of breath easily. I will talk to my doc about any remedies she can suggest such as vitamin supplements. I might get consultation from specialist too. These days I have chest pain as well which seems to have worsened over the past few years.

Hoping to provide some useful suggestions here in the future.

 4 
 on: April 13, 2021, 12:39:40 PM 
Started by urja - Last post by urja
Thank you for your reply Riahop. I am still confused and gravitating towards delaying the vaccine. I’m intermedia with alpha triplication & an Hb of 7.6.
Have no confirmation from medical community and Thalassaemia federations across the globe .... 8th May being International Thalassaemia Day hopeful that someone may throw more light on this.
Thank you for your information.
God bless

 5 
 on: April 12, 2021, 02:42:33 PM 
Started by urja - Last post by Riahop
I have Alpha minor. I had the Pfizer vaccine. After the first shot, after about 4-5 hours I developed a bad backache, just my entire back, and was groggy for the entire next day. After the 2nd shot, I felt fine until about 12 hours later. Then I got a low fever (100), chills, and body aches. I took ibuprofen and felt much better, so I thought that was it. About 6 hours after that, I got a fever again with chills and body aches, this time the fever was between 100-102, plus fatigue. This lasted for a day, then the symptoms lessened. But for a good 4-5 days, I had a fever that bounced up and down between 99-101 and flu-like symptoms (nothing respiratory) and still the fatigue. I don't know anyone else with Alpha thal who has gotten the Pfizer. My dad, who is 83 with Alpha thal, got Moderna and had no symptoms other than some soreness, maybe a little fatigue but no flu symptoms.

 6 
 on: March 31, 2021, 07:25:40 PM 
Started by Andy Battaglia - Last post by Slade
Just watch your kidney function fellow thals, its not difficult to overdo it with too many supplements and before long you may end up with a CKD, especially if you're predisposed to it.

 7 
 on: March 29, 2021, 05:41:39 AM 
Started by dahlsi - Last post by dahlsi
Hi fellow Thal Pals,

In the interest of sharing information about diet advice and nutritional supplements that Thalassemia patients can take to give them more energy and ensure a better quality of life, I will endeavour to regularly share information I have learned from seeing an Acupuncturist in recent months. In particular, I am constantly learning more about and trying to apply principles I have gained through following what’s known in Chinese Medicine as being a ‘Blood Deficiency diet’.

One thing I would definitely recommend is avoiding caffeine as much as possible, especially coffee. I found as I was getting older that I became less tolerant to coffee, so much so that I was only able to get through half a cup. Now I’ve stopped drinking it altogether. I have since learnt that coffee not only deprives the blood of oxygen, but it also makes the blood thick and sticky – not a good thing!

I am now starting to replace my daily coffee intake with either organic Chai tea (tea still has a little caffeine, but in much less quantities than coffee), or a cup of warm meat broth – the brand that was recommended to me is called “Best of the Bone”. Meat broth is meant to give you a much better energy boost to your day than coffee.

Another drink you might also like to try if meat broth is not your thing, or if you’re Vegetarian or Vegan, is a Mushroom broth.  The brand that was recommended to me is called “Teelixir”. You can either buy the powder in a ready-made latte form, or you can just buy the powder and add it to soups, broths or to any drink for an energy boost.

Another benefit I have found since avoiding coffee, is that my sleep is a lot better at night. In addition, I no longer experience feelings of tiredness during the day or that 3pm “slump” feeling in the afternoon.

-----
I hope that’s useful. I will continue to share what I learn about foods and diet choices that can boost energy as I find out about them. As fatigue is one of the constant battles I have to deal with as a Thalassemia Minor patient, I am hoping to improve my quality of life and others like me as much as possible.

Cheers, Dalia

 8 
 on: March 29, 2021, 05:32:13 AM 
Started by Andy Battaglia - Last post by dahlsi
Hi Andy,

Thanks so much for the information you provided about the list of Vitamin and Mineral Supplementation for Thalassemia minor patients! I was already taking some of these, but am now taking closer to the full list. It has made a big difference, finally I can now get through a hectic work day without feeling tired or lethargic as a result

I have also started to use organic Wheatgrass powder in a juice that I make for myself and drink daily, which is helpful as well.

PS - I am so grateful that this website exists! It's so good to have a community of Thal patients who are going through similar symptoms to me, where we can share knowledge and support one another Keep up the great work!

Cheers, Dalia

 9 
 on: March 29, 2021, 05:29:21 AM 
Started by Andy Battaglia - Last post by dahlsi
Hi Andy,

Thanks so much for the information you provided about the list of Vitamin and Mineral Supplementation for Thalassemia patients! I was already taking some of these, but am now taking closer to the full list. It has made a big difference, finally I can now get through a hectic work day without feeling tired or lethargic as a result

I have also started to use organic Wheatgrass powder in a juice that I make for myself and drink daily, which is helpful as well.

PS - I am so grateful that this website exists! It's so good to have a community of Thal patients who are going through similar symptoms to me, where we can share knowledge and support one another Keep up the great work!

Cheers, Dalia

 10 
 on: March 26, 2021, 07:25:59 AM 
Started by urja - Last post by urja
Hi friends,
Just wondering if all Thals ( minor, major & intermedia ) can safely take the COVID-19 vaccine without any unusual side effects?
There’s not any information on this as far as I know. Pls share whatever you know
Thanks
Urja

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